tag:blogger.com,1999:blog-92208357005863650612024-03-13T13:23:02.425-07:00Kind of BrokenThe struggles and triumphs of living with Dysautonomia, Myasthenia Gravis, and other flavors of Chronic IllnessStefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.comBlogger89125tag:blogger.com,1999:blog-9220835700586365061.post-29234655561338041872021-03-28T10:21:00.003-07:002021-03-28T15:38:33.276-07:00For Emily<p>This is a poem I wrote last year in honor of my favorite jazz guitarist, Emily Remler. I wrote it after I watched an interview where she talked about how hard it was to be a woman trying to earn respect in the jazz world. She died tragically young at the age of 32 in 1990 from opioid addiction. Yet, we still have all the music she made in her short time here.</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-L1a__vdCQVY/YF_Z3Dv5B8I/AAAAAAAAdlM/8twRVfcGdK0F_XWvyYpQrSgz8eCjVOweQCPcBGAsYHg/s630/Emily-Shot-courtesy-of-ed-deasy_WEB.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="405" data-original-width="630" height="258" src="https://1.bp.blogspot.com/-L1a__vdCQVY/YF_Z3Dv5B8I/AAAAAAAAdlM/8twRVfcGdK0F_XWvyYpQrSgz8eCjVOweQCPcBGAsYHg/w400-h258/Emily-Shot-courtesy-of-ed-deasy_WEB.jpg" width="400" /></a></div><div style="text-align: left;"><br /></div><p><br /></p><p>"For Emily"</p><p><br /></p><p>A weighted hold</p><p>But strong </p><p>A crisp string in a sharp morning</p><p>Waiting for the sound</p><p>The sliding geometry</p><p>To suture a song</p><p><br /></p><p>Something still, something whole</p><p><br /></p><p>You reach out your hand </p><p>And an E Major chord reaches back</p><p>The crescendo rises and the 12 bars begin </p><p>Again </p><p>Pulling a shard </p><p>From the cosmic consciousness</p><p>You shatter it into </p><p>Time and Melody</p><p><br /></p><p>But it wasn't enough—the hold</p><p>Only metal under skin</p><p>A sharpness to dim the quiet </p><p>Raging and building through a scale</p><p>For the eyes in the dark, always asking</p><p>Demanding</p><p>Your instrument like a sword</p><p>The sound your shield</p><p><br /></p><p>It wasn't enough</p><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><p>The crescendo crashes</p><p>And the screaming begins again</p><p>Waiting for the next bar</p><p>That never comes</p><p>In the embers of sedation </p><p>Free</p><p>To ride the chorus like a wave</p><p>As a woman in sound</p><p><br /></p><p>Reaching out </p><p>To the silence </p><p>Where it finally </p><p>Reaches back</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/btc3sEHINBM" width="320" youtube-src-id="btc3sEHINBM"></iframe></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><p><br /></p><p><br /></p><p><br /></p><p><br /></p>Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com3tag:blogger.com,1999:blog-9220835700586365061.post-40246809330595648432020-04-23T11:49:00.001-07:002020-04-23T15:59:17.836-07:00Strange Days<div class="separator" style="clear: both; text-align: center;">
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The moment I wake up is the darkest moment of my day. In a blink I'm conscious and my first thought is "ugghhh". I feel my worst in that moment. I roll over and turn off my BiPAP, the loud beeping signals my cat that I'm awake and ready if she wants pets. I take my first round of meds that have to be taken on an empty stomach and then lie in bed for a half hour and read social media and the news. I need to know immediately what's happening.<br />
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Usually I'm checking the news about politics. It's election season. My brain is always buzzing during this time. I check polling data obsessively and read a large variety of political coverage. I also follow NCAA gymnastics this time of year.<br />
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But now when I wake up I have to remind myself "oh yea. None of that is real"<br />
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These are strange days.<br />
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A global pandemic wouldn't have been on my betting list for all the ways 2020 could implode. It's been over 100 years since we've had a global pandemic on this scale. No one alive has experienced anything like this before.<br />
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For us personally, everything feels oddly similar to what our lives were like before. I've been homebound for over five years now. I've been "sheltering-in-place" before it was cool. My usual endless schedule of appointments, tests, etc is non-existent now, which is actually a welcome relief honestly. I'm tired of weekly appointments. They take up so much my energy. Husband works at Costco so his job has become much more stressful but he took some vacation time the last few weeks so we could quarantine and buy a little time during what will hopefully be the peak of the pandemic..although now I'm concerned we haven't reached that yet.<br />
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Our life has actually been a stark contrast compared to what many are experiencing right now. Things are going a little better for us than they have in awhile, and it's a strange dissonance over this global crisis. We changed my IVIG schedule to every two weeks so I'm not crashing so hard in between infusions. I was hospitalized every other month last year struggling to breathe on my own. Almost every time was because I couldn't make it between infusions.<br />
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We were able to pay off all our debt and medical debt. This may be the first time in 20 years of being together we are debt free. In another year, my student loans will be discharged. Everything feels like it may be possible for the first time in so many years. But the world is on hold right now.<br />
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After waiting a year, I finally saw the neuromuscular specialist at Stanford in January and a neuropulmonologist. After <a href="https://kindofbroken.blogspot.com/2019/11/letter-to-uc-davis.html" target="_blank">the terrible doctor at UC Davis</a>, <a href="https://kindofbroken.blogspot.com/2019/08/i-am-broken.html" target="_blank">my canceled surgery</a>, the endless hospitalizations, it was nice to finally see some real experts who are invested in my improvement. They echoed what many doctors have told me over the years: I have Myasthenia Gravis but the severity of my respiratory symptoms and mobility issues don't fit with MG and none of my test results explain them either. I always have other symptoms like a balance disorder that have never fit with any of my diagnoses either.<br />
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The neuropulmonologist actually told me "you may have something no one has ever heard of, " which is gut-wrenching to hear from an expert at one of the best research hospitals in the world. I appreciate their honesty and their acknowledgment this may be impossible. Instead of blaming me as the patient for the lack of explanation, they've been investing in looking for other potential diagnoses.<br />
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We were at least. Then COVID-19 put that on hold indefinitely or even permanently.<br />
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I did a variety of tests at Stanford at the beginning of March. Getting to Stanford is difficult for me so we stayed multiple nights in a hotel, so I could spread the tests out over multiple days. Those few days we were there were when the world changed here in the US. A national emergency was declared. Between the tests, I watched the news endlessly in the hotel. The last day we went to the hospital, the hospital was on lockdown and everyone was being screened before they were allowed in. There were police at the entrance.<br />
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The world hasn't been the same since.<br />
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I was in really rough shape after all the traveling and tests and felt like I was heading into another exacerbation. I was afraid I was going to end up in the hospital after all of it, which is the last place I need to be right now. I completed all the tests except the pulmonary function test (the hardest one), and we canceled our last night at the hotel and headed home early.<br />
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<tr><td class="tr-caption" style="text-align: center;">Resting, listening to the news in the hotel</td></tr>
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In the end, all the tests I did were "normal". Every pulmonary function test I've done over the last three years shows the same results (my lung function is fantastic and my respiratory muscles function at just 30%). I can't imagine doing another PFT would've been any different and I told the neuropulmonologist that after we returned home. I did not have any strength left to do that one.<br />
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<tr><td class="tr-caption" style="text-align: center;">Until next time Stanford</td></tr>
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I am forever cursed by normal test results. All that effort and resources for that trip and the tests showed nothing.<br />
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Yet, I've been very slowly increasing my immunosuppressant to a max dose since my first visit to Stanford in January and with the increased frequency of IVIG, I've been more stable. It's been almost five months since my last hospitalization, which is incredible compared to last year. I'm hoping I will continue to improve. I even attempted trying to walk with a cane again, my second attempt in the last year. I'm still working on walking again. Here is the video:<br />
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It's strange to watch the public struggle with isolation while so many of us who ill live this every day. I swear no abled person better ever say "it must be nice to be home all the time and not work" to any disabled person ever again after this.<br />
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It's exhausting to see so many people, even people I know, view this as overblown. It's exhausting to have to explain to the abled that you can have the virus and be asymptomatic, potentially infecting everyone you come in contact with. It's exhausting to explain how unlikely it is I would survive this virus<br />
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This will be happening for longer than the next few months. The Spanish flu lasted a few years, and the second wave was the most deadly. Those of us in the chronic illness community are going to need to be masked and vigilant for a long, long time.<br />
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Even though things are bizarrely going ok for us, we're trying to stay in tune with how much others are struggling right now. We've been trying to do our part to help family, friends, strangers. Since husband works at Costco we've been a toilet paper supplier for people. After giving our mail man a giant pack, I think we're officially his favorites.<br />
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These are terrifying, uncertain times. I feel the weight of it. I'm trying to cope the same ways I always try to cope: try to carve out joy where I can, find ways to laugh, try not to get trapped in anxiety about chaos I can't control. We've tried to be vigilant about protecting ourselves, especially since I'm high risk. We'll continue to do that for a long time.<br />
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In the meantime, I hope everyone can do the same. Find ways to laugh, smile when you can, hunker down for the long haul.<br />
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This is one of the few times in modern history our species is living a through a universal experience where everything is at stake--one of the few times we keenly feel our responsibility to each other. I hope a better world comes from this. I hope I survive to see it.<br />
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I wish everyone the same<br />
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<br />Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com4tag:blogger.com,1999:blog-9220835700586365061.post-51740127539534672212019-11-20T16:50:00.004-08:002019-11-20T17:03:45.826-08:00Letter to UC Davis part 2<div>
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Hello and welcome back to continuing coverage of "patient is tired of the BS and tells her story as vengeance". In today's episode I will tie up loose ends and close the book on this chapter, so we can move on to better things. Less rage more rest for the end the year. </div>
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So a few days after <a href="https://kindofbroken.blogspot.com/2019/11/letter-to-uc-davis.html?m=1" target="_blank">my last post</a> where I shared the full letter I sent to UC Davis about the terrible doctor I saw there for a year and a half, I received the final letter from patient relations saying their "investigation" into my concerns was complete. </div>
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The letter is actually pretty unsatisfying. They explain "personnel actions are afforded the same rights of confidentiality extended to our patients", meaning they cannot disclose what was discussed or what changed related to the issues I addressed in my letter. They did give me a list of departments that were involved, including the specific doctor. This means many people were involved and read my words. This was one of my goals. I sent a copy of the letter to different departments, not just patient relations. I tried to send it to the CEO, but I couldn't find a targeted address. </div>
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Despite how unsatisfying the letter is, in the final paragraph they state "while we cannot change the experience you had, I hope you can take comfort in knowing this feedback will allow us to improve the care we provide to future patients." In the end, that's all I wanted. I did not write this letter for just myself. It was for the patients who contacted me, all the people I shared that waiting room with for countless hours, for all the patients who hold back tears and anxiety as they seek a better quality of life. That letter and everything I write here and on social media is for all of us. </div>
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I won't share this doctor's name publicly. That's bad form. But you can contact me privately. I've already talked to another patient with a severe case of Myasthenia Gravis and encouraged her not to see this doctor. I was genuinely concerned for her welfare. </div>
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For most of this year, I've done everything I could I scrub this doctor from my medical history the best I can. I've even had to ask doctors at my local hospital where I've spent too much time this year not to contact UC Davis. I try to only mention my time there in passing when I have to recount my recent medical history.<br />
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<a href="https://amp.theguardian.com/lifeandstyle/2019/nov/13/the-female-problem-male-bias-in-medical-trials?CMP=share_btn_fb&fbclid=IwAR3y54TVMW9oUHtTO_BOTBQUIWqIgnjejk0Lo_s_vSk8jgJlpnt3xXQm1Fw&__twitter_impression=true" target="_blank">This recent article </a>discusses that when it comes to female patients "doctors fill in knowledge gaps with hysteria narratives". I discovered inadvertently what this doctor had been writing about me when my primary doctor handed me a copy of his medical notes. If this hadn't happened, I never would've known this doctor was telling me one thing to my face while filling my medical record with an "hysteria narrative" at the same time.</div>
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If you are wondering, this doctor used to the word "psychosomatic" broadly but also specifically to refer to my severe mobility issues. As if I woke up one morning and decided "you know what would be fun? To be in a wheelchair all the time. That would be a good adventure for my mid 30s." My mobility problems began and progressed over several years. It didn't happen over night. I try to remember comments in our medical notes aren't personal no matter how difficult it is to not take them personally. </div>
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However, his particular comment was a cop out. It was an excuse to blame me for his lack of effort and investment in my case.<br />
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Just because these symptoms cannot be explained succinctly doesn't make them imaginary. It's indescribable the frustration of being so sick and not knowing why, trying desperately to cling to hope in a raging storm, only to be dismissed and accused of fabricating it all. Gender bias in medicine has real, devastating effects.<br />
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Patients are human beings. We deserve to be believed and afforded some basic dignity.<br />
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But it's done.<br />
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I regret the time, money, energy we wasted, but I still learned something from this experience. I may need to be hospitalized at the UC Davis hospital in the future. I will know I'm in good hands there, but I'll make sure they know I want nothing to do with that particular doctor.<br />
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I've been doing this too long to accept dismissal anymore. Time is too short, my health too fragile.<br />
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So hear me, treat me with dignity, or get out of the way.<br />
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Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com4tag:blogger.com,1999:blog-9220835700586365061.post-23890595973813128782019-11-14T14:49:00.001-08:002019-11-14T15:46:54.076-08:00Letter to UC Davis<div dir="ltr" id="docs-internal-guid-0d28307c-7fff-0599-9563-81fc52a97013" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I've been meaning to share this for awhile. I have talked about my trips to UC Davis here and on social media and a bit about how frustrating our experience there was. Our first visit there was in November 2017 and the last was February 2019. Before this, I went to Stanford for years, until my doctor there started me on treatment that made significantly worse and I was bedridden for two years. Good times! Davis is closer and easier logistically for us. We also thought finally seeing a Myasthenia Gravis expert would allow me to make some real progress. Well, not so much. </span><br />
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I am sharing my letter I sent to UC Davis here because this is the first time I've ever written a letter like this, but I imagine it will resonate for others who have spent years in the trenches of the medical system. It isn't the first time I've been accused of faking my symptoms. It likely won't be the last. </span><br />
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I did some tele-therapy earlier this year and as I was telling the therapist how angry and frustrated I was about what happened with this doctor, she encouraged me to write a letter. This doctor basically ignored how sick I was and then abandoned me. He left me even more </span><span style="font-family: "arial"; font-size: 11pt; white-space: pre-wrap;">hopeless. I couldn't get passed it. I couldn't let it go. So I wrote this letter in hopes to say my piece and be able to move forward. Here it is in full with the doctor's name redacted:</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">"October 4, 2019</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">To Whom It May Concern:</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">My name is Stefani Shea-Akers. I was a patient at UC Davis Neurology Clinic from the end of 2017 to the beginning of 2019. I am writing this letter to discuss my experience with Dr. [...] at UC Davis Neurology Clinic and why I will not return to UC Davis. </span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I initially saw Dr. [...] at the end of 2017. I had been bedridden for over a year at that point and relied on BiPAP to help me breathe and a wheelchair as I am unable to walk. The specialist I had been seeing at Stanford before this put me on treatment for Myasthenia Gravis that made me significantly worse. I was not well enough to return to Stanford. UC Davis is closer to where we live, and I thought I would receive better care with a Myasthenia expert. I came to the UC Davis Medical Center in utter desperation. Our first appointment went well, and my husband and I left with a lot of hope. Dr. [...] ordered blood tests and asked that we return in a few weeks. </span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Our second appointment was deeply disappointing and emblematic of most of the appointments that would follow. Our appointments with him were very brief, usually 15 minutes or less. He did a very cursory neurological exam. I always wondered how he could glean any real information about my condition from them. I was a patient at Stanford for years before switching to UC Davis. My appointments there were always an hour or longer. At the end of this second appointment, Dr. [...] left so abruptly I didn't get to ask any questions. My husband had to go to the front desk to ask if our appointment was over. We did not know what happened. I wish I had realized then that I was not going to get the care I so desperately needed. From then on, my husband and I never felt he was invested in my case.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I saw Dr. [...] for a year and a half and every appointment was basically the same. We would discuss the treatment and surgery I needed but none of it ever materialized. Thymectomy surgery is the best chance for improvement for Myasthenia patients, especially for patients who have not had great success with typical treatments like me. The only treatment that changed while I saw him over that time was when I would ask him to increase my immunosuppressant. I did not know what else to do to try to stabilize my condition. </span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">In August 2018, I was transferred from my local hospital to UC Davis hospital with a Myasthenia exacerbation. My diaphragm was barely moving so I was struggling to breathe, I could barely lift my limbs, I was struggling to chew and swallow. I was given IVIG treatment for the first time and made an improvement. The care I received at UC Davis hospital was exceptional. The doctors, nurses, and staff were incredible. The neurologists told me Dr. [...] would come by to see me while I was hospitalized there. He never did. In fact, he passed me in the hall while I was being transported once but did not acknowledge me. </span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I have been hospitalized six times in the last year because of my MG symptoms, particularly my diaphragm weakness. At times, my diaphragm has been paralyzed. Despite my repeated hospitalizations, I was still not given treatment or a referral to a surgeon. </span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I stopped seeing Dr. [...] at the beginning of this year. I discovered that he had been commenting in his medical notes that my symptoms may be "psychosomatic". I have seen many doctors over the years and none had ever used that word in my medical documentation. I was shocked, disturbed, angry. I still am. Since my MG symptoms began in 2013, my health quickly declined. I lost the ability to walk or stand and I had to leave my academic career at the age of 33 because I was no longer able to work. I now have to rely on my husband for help with basic tasks. I am essentially homebound. Who would choose this life? Essentially, I felt that I was being blamed as the patient because the answers about my condition were not simple or straightforward. </span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">We were also given inconsistent information at some of my appointments. At our last visit earlier this year, Dr. [...] gave me opposite advice to what he had been saying for over a year. He expressed doubts about my diagnosis and said I didn't need treatment or surgery and referred me to someone else. I had just gotten out of the hospital again because of a Myasthenia exacerbation a few weeks before this. My husband and I sat in stunned silence. We couldn't believe what we were hearing. That was our last visit. I have no plans to return to the UC Davis Neurology Clinic now. </span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I am in the process of moving all of my specialized treatment back over to Stanford, which is disappointing because going there is much more difficult for us. Traveling continues to be very challenging for me. I have already seen a surgeon locally and a thoracic surgeon at Stanford and will hopefully be having my thymectomy at Stanford soon. </span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I am most frustrated by the inconsistent information we were regularly given and Dr. [...] comments in my medical record. He had never once told me in person he thought any part of my condition was "psychosomatic". He had never even intimated this to me. Now that comment is permanently in my medical record, and there is nothing I can do to change it. I find this incredibly disturbing and harmful.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">This experience created even more stress for me and my family at a time when I was very ill and stress worsened my condition. I felt abandoned, unfairly blamed, and hopeless. I'm grateful my local neurologist and other specialists were willing to take over my treatment despite what Dr. [...] had put in his notes. I now receive regular IVIG treatment, which has stabilized my condition enough to no longer be hospitalized every other month. I don't know where I would be if my local neurologist had not made this happen for me. </span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Before my first appointment with Dr. [...], another patient of his contacted me on social media. She described her experience and recommended not seeing him. Her experience was similar to mine: she was regularly given inconsistent information, she felt he wasn't invested in her case, and she eventually had to move her care to a different research hospital and never returned to UC Davis Neurology Clinic. I share this to show that unfortunately my experience is not unique. </span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">The only recourse I am asking for is to be heard and acknowledged. Every patient who comes to UC Davis is fundamentally seeking a better quality of life and to have their case taken seriously. I am deeply disappointed by my experience at the UC Davis Neurology Clinic, and I can only hope that the other patients who are seen there are heard and feel that they can make improvement.</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Respectfully,</span></div>
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Stefani Shea-Akers"</span></div>
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In my efforts to be diplomatic, I said how I felt but I also had to leave much implied and unsaid: I wish I had never seen this doctor. I wish we wouldn't have wasted so much time, money, energy on trips to see this doctor.<br />
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My main regret is ever letting this doctor make choices for me and now his comments are permanently in my medical record. They have already affected my access to treatment. Thankfully I have local doctors who know me and rejected his comments.<br />
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It's honestly still really difficult to talk about it. I'm ready to move on. But it's not over yet. I got a letter from patient relations at UC Davis saying they are doing an "investigation" and would get back to me. That was over a month ago, and I still haven't received a letter.<br />
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I did get an email a few days ago from an administer apologizing for my experience and saying she felt "saddened" by my letter. There was more. I considered responding but I'm tired. I said my piece. I want to move on.<br />
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When I get the letter from patient relations, I'll share what they say.<br />
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The very first doctor I saw when all this started dismissed me. You can read my narrative about the <a href="https://kindofbroken.blogspot.com/2015/01/the-beginning-again.html?m=1" target="_blank">beginning of this journey here.</a> I mainly wanted to share this letter here so that other patients know it's ok to write a letter like this. The problem is we always just walk away and never say how much we've been harmed. Doctors have so much influence in our lives. I have just walked away from doctors so many times and never shared my story. The therapist I was working with said to me "you do patient advocacy for others but you won't advocate for yourself?" She was right. Writing this letter did help. I don't fantasize about sending this doctor a flaming bag of dog poop as much. I've already been seen at Stanford so in terms of my specialized care we've already moved on.<br />
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My experience at Davis clouded much of this year, and I really hope next year will include more positive experiences with the medical system and how we finally found treatment that helps me. That's the dream.<br />
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So much has happened since my last post about my surgery that never happened. I'm going to try to write an update post soon.<br />
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Thanks for being along on this ride 💕<br />
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<br />Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com3tag:blogger.com,1999:blog-9220835700586365061.post-27871316625462842922019-08-23T11:48:00.000-07:002019-08-23T12:12:18.213-07:00I Am Broken<div class="separator" style="clear: both; text-align: center;">
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I am broken. I am shattered, devastated.<br />
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Everything seemed possible last week. I've been waiting years to have my thymectomy surgery that will hopefully be life-changing. Husband and I have been meeting with a local thoracic surgeon since April, seeing him every few weeks to go over preparations and everything. We've been working on coordinating my husband's work schedule and his family's schedule because I was going to need extra help at home after the surgery. I had to do some tests including another dreaded Pulmonary Function Test in preparation.<br />
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The surgery was scheduled for August 15th. I was admitted to the hospital last Monday for three days of IVIG in preparation, to give my body the best chance to make it through the surgery. It's good I was admitted then. I would've ended up in the hospital last week anyway. My diaphragm was barely moving and my home infusions of IVIG didn't help. I was just a few days away from it being totally paralyzed. I have had a migraine for two months straight as well and got treatment for that while I was there.<br />
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I was calm. The surgeon went over all the risks multiple times but I didn't care. I was ready. I have been hoping this surgery is my golden ticket. I haven't had great success with any Myasthenia treatment so far. Some treatments have been downright disastrous. I've been homebound for five years, two of which I lived in bed. I lost the ability to walk three years ago. I rely on a machine to help me breathe. Husband has to help me with basic tasks. I've been hospitalized every other month the last year. This surgery was the chance to get some of my life back.<br />
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My surgeon visited me every morning in the hospital last week to just go over last minute details and questions. My neurologist would come each day too. Wednesday morning, my surgeon came in one last time to give me the time for the surgery early the next day. I asked if I could shower since I didn't know when I'd be able to shower again after the surgery.<br />
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Everything seemed fine. But when my neurologist came in that afternoon she had a strange look on her face. She said "has Dr. ..... talked to you?" I told her he came in that morning and we were ready to go. She said "well I just passed him in the hall and it sounds like the surgery is cancelled". She had to leave right after that. I didn't know what to think. There was no way it was cancelled. That wouldn't make any sense. How could it be over?<br />
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After she left, I was trying to eat my lunch while crying when the anesthesiologist came in to go over my questions. He hadn't heard anything. I couldn't talk to him. I was so upset. He said he'd find my surgeon so we could figure out what was going on.<br />
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My surgeon eventually came in and the look on his face said everything. It was over. He gave me a brief explanation but said he wanted to wait until my husband came so he could talk to us both.<br />
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After my husband came, my surgeon came in and explained that the hospital wasn't helping him coordinate my care after the surgery. I needed to be in ICU in critical care for at least a few days after. The danger was less the surgery and more how my body would cope after. I asked him for more information but he didn't explain. He was distraught, even angry. He said it was an incredibly hard decision but he was concerned for my welfare. I gave him a hug and thanked him for everything. I told him I understood it was a hard decision. I trusted him. I never felt comfortable having this surgery at my local hospital. They aren't equipped to handle my case. But husband and I had a great relationship with this surgeon. I trusted him implicitly. I am not angry him.<br />
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There's one person who deserves all of the blame: the specialist I was seeing at UC Davis for over a year. I was supposed to have the surgery there last year, where they'd be more than capable of handling my case. That specialist told me I needed the surgery but refused to let me see a surgeon. But the last time I saw him this year, he suddenly decided I didn't need the surgery after all and tried to tell me I'm in "remission". That's not even all he did. It gets worse. I'm still working on my letter to UC Davis and I will share it in full here when it's complete. I don't want any other patient to have to suffer at the hands of this specialist like I did. He ruined any chance of me having the surgery at UC Davis.<br />
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He deserves all of the blame.<br />
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My surgeon told us he talked to another thoracic surgeon at Stanford who helped him make the final decision to cancel the surgery. He gave me a referral to that surgeon. They already called and we see that surgeon at Stanford at the end of September. It's not a done deal. But I hope I can convince that surgeon to operate on me. I don't have a game plan if Stanford falls through. This is already plan C.<br />
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There have only been a few times in my life I have felt devastation this deep. When I had to resign from dream job as an English professor (exactly five years ago this week). When my mom died a few years ago.....<br />
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The hurt is so deep that it will take a long time to excise it from my body.<br />
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It isn't just the surgery. It's the cumulative, constant frustration and disappointment that I just can't cope with at times. I don't understand why it always has to be so hard. It feels like a cruel, elaborate joke sometimes. I'm still waiting for Ashton Kutcher to jump out and yell "you've been punk'd!"<br />
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I asked friends and family not to ask questions about what happened. I haven't been able to talk about it. I'm still trying to figure out how to even explain it since we never got a full explanation.<br />
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I've been spending time with husband, snuggling my cat, reading, and as always wrapping myself in a blanket of music, the way I try to get through everything.<br />
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I am heartbroken but I am picking up the pieces, putting myself back together, trying to figure out what comes next.<br />
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I will get there. We will all get there.<br />
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<i>"Only when you're whole can you forgive.....it's a long, long climb. It's a long, long climb"</i><br />
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<br />Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com3tag:blogger.com,1999:blog-9220835700586365061.post-83367421231437751822019-07-30T18:23:00.002-07:002019-07-30T20:45:54.400-07:00 A Few Things: An Update <div class="separator" style="clear: both; text-align: center;">
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I'm just going to share kind of an update of a few things for this post :<br />
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- I have a date for my thymectomy surgery! We've been meeting with the surgeon a few times over the last four months or so, and we had to keep putting the surgery off because of my husband's work schedule and family schedules. I'll be admitted to the hospital on August 12th for IVIG for a few days, and then the surgery will be August 15th. I'll be in the ICU for a few days after. The danger is not necessarily the surgery itself but if my body goes into a Myasthenic Crisis afterward and I'm not able to breathe on my own.<br />
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We don't know when I'll be discharged. I'm starting to feel some anxiety about it but I've also been waiting years to have this surgery. It's the best hope for MG improvement and I'm hoping it's my golden ticket to get something of a life back. I'm ready to be thymus-free and have this adorable, stuffed one instead.<br />
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I'm planning on writing a post before the surgery. I have a list of what I'm planning on taking with me and a list of goals I have after the surgery that I want to share.<br />
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- I'm doing a t-shirt campaign to help raise funds for medical costs and the surgery. There are only 2 days left to order one. I designed the shirts using my mantra I use every day, "Rise Above". I got the idea from someone I follow on Instagram. She did a t-shirt campaign to raise funds for medical costs and now whenever I wear the shirt she designed, I smile and remember how I got to help her out. <a href="https://www.bonfire.com/rise-above-8/" target="_blank">Link is here </a><br />
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- I walked with a cane without help for the first time a few weeks ago. It was a big deal. Husband was trolling me by playing "Neverending Story" in the background. Next walking video will have "Eye of Tiger" as the soundtrack or my beloved Maxwell for some groove.<br />
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- I've had an intense constant migraine for over a month and nothing is helping. I started a different migraine injection so I'll share if it helps or not. One of my goals after surgery is to try a different treatment than IVIG. I love that it allows me to breathe on my own but it has turned my chronic migraines into one constant, screaming migraine that nothing can kill. I'm not feeling it. I did get to experience a barfpocalypse when I went to the ER to treat it two weeks ago. The man in the bed next to me was scream barfing, which would trigger barfing from the guy in the bed in front of me, which would trigger barfing from the woman next to him. The ER is always a party.<br />
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- Speaking of IVIG, there is a national shortage of the drug, and I have spoken with multiple people who have had their infusions either delayed or cancelled. It looks like it's a manufacturer problem, but it is still important for people to donate blood because each bottle of IVIG is derived from thousands of blood donations. <a href="https://themighty.com/2019/07/intravenous-immunoglobulin-ivig-shortage-ways-to-advocate/" target="_blank">A patient wrote an article </a> about how to advocate for yourself during the shortage.<br />
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- <a href="https://www-m.cnn.com/2019/07/27/health/doug-lindsay-invented-surgery-trnd/index.html?r=https%3A%2F%2Fwww.cnn.com%2F" target="_blank">Read this incredible story </a> by a man who diagnosed himself with Dysautonomia in the 90s and pioneered some of the treatments still used today for this condition.<br />
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- Illness sometimes feels like endless days of muddling through and just surviving, but something I have been doing for awhile now that has really helped me is creating things to look forward to. I'm working on a list of things I'm looking forward to the rest of the year. They can be small things like a particular flower blooming in your yard or a favorite artist releasing a new album. Whatever it is that keeps you going. I'll try to share my list sometime too.<br />
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- I woke up yesterday, and my respiratory muscles were almost completely paralyzed. Luckily it's infusion week and my nurse, who is a gem, got my IVIG infusion started right away in the morning. She brought my BiPAP out to the living room for me. I started crying while I was trying to eat. It's really difficult to eat when you can't breathe. She was really patient. I woke up breathing a little better today. I just have one more infusion. After #3 is when the magic usually happens, and my diaphragm gets with the program and starts moving again. I'm so thankful I am getting home infusions now. Otherwise I'd be in a hospital bed right now. I have to be able to sleep in my own bed so my cat has someone to yell at and snuggle in the morning.<br />
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Maybe someday after the surgery I won't have to do IVIG and my BiPAP and I can separate. It's not me BiPAP. It's you. I don't need you anymore. We'll always have the memories.<br />
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Maybe someday.<br />
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I hope you are all doing ok out there, and I send you my love and some good grooves<br />
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<br />Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com2tag:blogger.com,1999:blog-9220835700586365061.post-85142623207856980482019-06-11T09:28:00.002-07:002019-06-11T13:03:27.710-07:00Here to Breathe Again<div class="separator" style="clear: both; text-align: center;">
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Hi there. Hello again. I haven't actually written in this space in so long but I've wanted to. I need a space to talk, to figure out, to make sense. This space used to do that for me. I'm trying to find my way back.<br />
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I've been home just over two weeks from my third hospitalization this year, the fifth since last August. My body refuses to keep breathing on its own. My limbs stubbornly refuse to move. I go in with a paralyzed diaphragm, unable to lift my arms or legs, sometimes struggling to swallow, get a few days of IVIG, go home and do ok enough on my own for a few weeks, then just start to quickly go downhill again. I feel trapped in this endless cycle, powerless to stop it. What is all the talk about "manifesting" the change you want in life? Is there an incantation I can say? A potion that will give me some control back? Do I say "Beetlejuice" three times in front of a mirror?<br />
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Or I guess just accept that this is what life is right now.<br />
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Husband and I are pros at this hospitalization thing now. We know exactly what to do. My diaphragm becomes paralyzed over a period of time until I wake up one day and my respiratory muscles won't move. I can't inhale. It's like trying to breathe with plastic over your mouth. I'm usually anxious when I go to the ER but I know what's going on and what I need. I feel like I got lucky this time though. We got to the hospital fast, we didn't have to battle or explain, I was given IVIG quickly and I responded quickly. I was almost intubated but narrowly avoided it. I just keep wondering if my luck is going to run out.<br />
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I'm still recovering from this one. It was a bit of a nightmare. I was on the ICU floor the whole time. I had a dream roommate at first and then she was shipped out and they brought in a total nightmare roommate. After being unable sleep through the night because of this lady's constant yelling and demands, I ripped off everything, got myself out of bed, and escaped to the hallway. The meningitis headache from IVIG is always so intense for me and I couldn't handle the yelling anymore. I leaned my head against the cold wall for awhile and waited until I couldn't hold myself up any longer.<br />
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A nurse came over to tell me they were trying to find me a new room, but they eventually moved that lady instead. I give the ICU step down floor one star: great nurses but it's not a place for any kind of recovery or healing.<br />
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My diaphragm became very weak again a few days after I got home. This is not how it usually goes after a hospitalization. I usually progressively improve and my diaphragm moves for at least 2 weeks or so. I don't know what's going on. I'm so desperate to not end up in the hospital again, I contacted my neurologist about adding a steroid to my regimen, even though Prednisone nearly killed me in 2016 and I swore I would never take it again. Every medical facility I go to, I make sure they put it on my allergy list. I don't want to die by Prednisone. There are better, more heroic ways to go out, like saving my family from a sinking battleship.<br />
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The real issue is I am finally FINALLY having thymectomy surgery this summer. I've been waiting years to finally get this surgery. There's research that a thymectomy is beneficial for any Myasthenia patient. You can read more about that <a href="https://news.wbfo.org/post/study-finds-thymectomy-one-shot-deal-those-myasthenia-gravis" target="_blank">here</a>. The first time I ever heard about it was from my doctor at Stanford in 2015. I was doing better then and I am convinced if I had been able to have the surgery then, life would be very different right now. I doubt I would've lost the ability to walk. The specialist I was seeing at UC Davis the last year and a half also wanted me to do the surgery but he kept saying I wasn't "stable" enough. That doctor just strung me along as I continued to decline. It was a case of severe medical neglect that I'll talk more about another time. I'm never seeing that doctor again, and I'm working on a letter to UC Davis to talk about how angry and frustrated I still am. After telling my local cardiologist that once again another doctor pulled the plug on surgery, he just gave me a referral to a surgeon. We've met with the surgeon twice, and I am just so impressed with him. I was worried how much he would know since the surgery is mainly specific to Myasthenia patients, but he knew everything and grasped the complexity of my case within minutes, which never happens.<br />
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So the problem is this is a serious surgery. I'll be in the ICU for awhile afterward and there are a lot risks. Since my condition is already so unstable, the risks are even higher. This is why I am even considering starting a steroid. At this point, the surgery is my best hope for a better life. The surgeon said my case is too severe to go into remission, but I should at least have some improvement. The goal is no more hospitalizations and to lower my dose of the toxic immunosuppresants. In my mind, this is my golden ticket. It's what is keeping me going right now. I have to be ok enough to get this thing out of my body. It's getting an eviction notice.<br />
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I also want to get it done before another doctor pulls the carpet out from under me again.<br />
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So all of this has obviously created some debilitating stress for me. I haven't felt stress like this, like I need to scream all of the time, since my mom was dying in 2015. Even my husband is struggling with the stress. We're both really tough. We always find ways to cope, especially with heavy doses of sci fi tv and YouTube videos, but sometimes the weight is too much to bear. We're both working on trying to limit the stress we can control. I started a teletherapy program to work on coping skills, I fired my specialist at UC Davis who only caused more harm, I'm trying to keep my mind occupied and make better choices. But damn this is hard.<br />
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So you have to find ways to shine on and keep going. I focus on small joys and that helps. I feel most down at night before bed so I think about what record I'm going to listen to when I wake up and making coffee (I gave up on being clean and sober from coffee the last 7 years. I need a vice). Whatever it takes.<br />
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Coming back here is part of that. I had to write this on my phone a few minutes at a time, but it worked. I was worried that my writing here would be too depressing, but I've decided I don't care. So let's celebrate catharsis, the struggle for hope, and the healing power of coffee. And keep on writing...<br />
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"I'm not afraid<br />
All is forgiven<br />
Because after all<br />
What's done is done....<br />
<br />
Where I'm from<br />
We carry on<br />
And keep on running"<br />
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<br />Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com1tag:blogger.com,1999:blog-9220835700586365061.post-8587738150917291002019-02-07T16:57:00.000-08:002019-02-11T15:37:30.922-08:00Sync<div class="separator" style="clear: both; text-align: center;">
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I had a dream<br />
I fell out of space and time<br />
I ran through corridors of moment<br />
Desperate to find my way back<br />
To my temporal space<br />
Trying not to look to my right, where the future<br />
Bared itself, real and ready<br />
Or re-witness the past<br />
I don't want to know<br />
I kept seeking a present<br />
That made sense<br />
To find my way back<br />
<br />
But I woke up still running<br />
The beat of my heart still<br />
Out of sync<br />
Too slow, too fast<br />
Still searching<br />
In a world<br />
Where I've lost inertia<br />
I fell off the merry-go-round<br />
As it spins out of time<br />
Just a blur, a schism<br />
Nothing to grasp on to<br />
In this lumbering gravity<br />
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Living at a slower pace<br />
I've seen leaves turn red<br />
Then fall and turn to stone<br />
I've watched thousands of butterflies take flight<br />
Regenerating into forests<br />
I've held a dying star in my hand<br />
Watched galaxies congeal and melt<br />
Where the cosmic colors converge<br />
And tendrils of life seek then recede<br />
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But I never found my way back<br />
I lost my present<br />
And now this body always drags slightly<br />
Behind the beat<br />
Yet still<br />
I am home<br />
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<br />Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com4tag:blogger.com,1999:blog-9220835700586365061.post-10296335422170129372017-11-20T13:37:00.000-08:002017-11-20T19:17:45.208-08:00Some Thoughts<div dir="ltr">
I have some thoughts I need to get out and I need a space to talk. </div>
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I'm having a hard time getting myself to keep going right now. It's been over 2 weeks since my trip to the UC Davis Myasthenia Gravis Clinic but I am still trying to recover. I'm just so tired. So completely worn down by having to fight so hard all the time. The doctor I saw at Davis told me the treatment I've been on and state I've been in the last few years is just "barely keeping you out of the hospital all of time." When she said that my whole body sighed in relief. It isn't my fault. I'm not a failure. I've worked so hard to try to improve and get my life back but I haven't been able to make any significant strides toward improvement, no matter how hard I've tried. It's not my fault. It's not my fault.<br />
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I wish I could communicate what's it's like to always live precariously on the edge, to always have to fight so hard just to maintain. I can't though, not right now at least. </div>
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I'm so tired. I just want my freedom back, to not have to look at the clock constantly because I have to rest every hour. I want to be able to move, to make plans, to play music, to see friends. I want to have a life again. </div>
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We go back to Davis in a few weeks and that appointment will be much harder than the last one because I have to do an exhausting test in the morning then multiple hours of an appointment after. But my doctor is going to create a treatment plan with this appointment. There's hope. I'll finally have a treatment plan from a Myasthenia expert who can make sense of this magical medical mystery body. There's hope.<br />
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But right now I'm tired and worn down. I'm listening to Harry Potter and rewatching The West Wing, two things I always turn to when I need comfort. I'm angry, I'm frustrated, I'm disappointed, I'm happy, I'm sad, I'm laughing, I'm crying. I'm too tired to make sense of it so I'm just going with it. Push to the other side until I can't push anymore.<br />
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So I'm in bed eating my lunch, trying to hold my body up, listening to my cat snore, and watching the bluejay eat the bird food my husband put out outside my window. If I live in these moments, I'm ok. So right now, I'm ok.<br />
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Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com10tag:blogger.com,1999:blog-9220835700586365061.post-13049235651061393222017-08-31T16:47:00.000-07:002017-11-25T11:04:42.961-08:00In Stillness<br />
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You may be wondering why I haven't written a blog post in a year. There's a long, complicated answer but in short I've been bedridden the last year. The day of my last post was actually the first day it started. I finally started aggressive treatment for Myasthenia Gravis last September but that treatment made me sicker than I've ever been. I am doing better than I was six months ago but I haven't been able to fully recover and leave my bed for good. I'm not sure what's going on and neither do my doctors. It's a long story and someday I will have more strength to discuss everything that has happened. It's another link in the long narrative of "Inexplicable Things My Body Does No One Can Explain". In the meantime, here's a poem I wrote in my journal a few weeks ago:<br />
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"In Stillness"<br />
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In the stillness I exist<br />
Not in motion<br />
Motion is still<br />
Still<br />
Where life is slowly<br />
Tubes hanging from my face<br />
A machine breathing for me<br />
Pulling life in and out<br />
In stillness<br />
A portrait of a woman frozen in time<br />
As fibers inside bend and break<br />
With the turning of the world<br />
Still. I am still<br />
Waiting for a tomorrow<br />
Dreaming of a yesterday<br />
To be in motion once again<br />
To feel the spinning<br />
Like laughing on a carnival ride<br />
As lights burst all around<br />
In the candied popcorn air<br />
Spinning<br />
Only stillness now<br />
But in stillness I am strong<br />
In stillness I can fight<br />
I gather knowledge<br />
I smell of lavender and stale air<br />
Green tea and vomit<br />
Salt and ginger<br />
In stillness I survive<br />
In stillness I fight on<br />
Faster than any beating heart<br />
<blockquote class="tr_bq">
Spinning outside</blockquote>
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<tr><td class="tr-caption" style="text-align: center;">Me, Mopar, BiPAP, in stillness</td></tr>
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Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com6tag:blogger.com,1999:blog-9220835700586365061.post-89477672541539526152016-09-30T13:45:00.002-07:002016-10-02T10:13:00.888-07:00Invisible Illness Awareness and #MyVoiceMyBody<div class="separator" style="clear: both; text-align: center;">
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This week is Invisible Illness Awareness week and although technically this entire blog and everything I share on the Facebook page are related to invisible illness in some way, I wanted to write a specific post to celebrate the week.<br />
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There are many issues related to invisible illness that are near to my heart but one point I hope to make by sharing my story is the importance of maintaining authority over our experiences of illness and our own bodies. So many of us suffer through years of being told "it's all in your head" by doctors or told we don't qualify for treatment by insurance companies because we don't fit into a specific label/category or told we aren't "technically disabled" by government assistance programs. I've been told all of this. We see illness and disability misrepresented in media or appropriated for the able-bodied. <br />
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It's difficult to quiet the noise sometimes and remember to find our voice again and reclaim the authenticity of what we experience.<br />
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For so long I hid my illness and didn't talk about it. I thought if I could just ignore it, I could control it and make it go away. I internalized the voices around me and even punished my body for not adhering to what I was being told: if it truly was all in my head, I thought I could force my body to just comply. It only made me worse. <br />
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But going through this made me realize that honesty with myself, with those around me, with the medical community (and refusing to believe I was wrong) was the only way I could achieve acceptance and find a path forward. When I started to be honest, I found that I coud reclaim authority over my body again with my voice. I didn't have to live in terror or punish my body for its refusal to just get back to "normal."<br />
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I had to find my own truth again.<br />
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Starting this blog and talking about my experience on social media has helped me rediscover that truth and live honestly. It has helped me understand that I cannot control my illnesses but I can control how I respond to them. <br />
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I try to represent my experience truthfully, even though it may create cognitive dissonance for some. There is no rhyme or reason with illness. Sometimes you have good days. Sometimes you have bad. And there's a ton of grey in between.<br />
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These picutres are an example:<br />
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The one on the left was from a few days ago. I've had to spend most of the last two and half months in bed. But every day I wake up, I put some make up on, I get dressed, and I hope today is better than yesterday. I don't feel the part, but I want to look it. I wheeled myself outside and took a selfie. I posted the picture on my blog page and talked about finally getting the Myasthenia diagnosis last month and finally starting treatment. I was feeling ok at that moment and feeling positive about the future. I wanted my smile to represent that. I even put a scarf and earrings on. Bonus points!<br />
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Sometimes people will comment about how well I look. I know whatever I look like on the outside belies how I really feel. But I also like puting in the energy to feel good about myself and hoping my body in turn feels a little better. Sometimes it works.<br />
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Not long after I took that picture, I had to go lie down with my BiPAP and rest. That is what my day entails now. I have to spend either most of the day or just the afternoon in bed on my breathing machine. I look like a comic book villain when I wear my mask but at least I have some mascara on. You have to own it. <br />
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I post pictures of myself when I'm wearing my BiPAP too. I try to make fun of myself sometimes but I also want to represent my experience truthfully. The two pictures are a dichotomy but often that's what illness is. <br />
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Whenever I talk honestly about my experience of illness, I have started using the hashtag #MyVoiceMyBody as a reminder that I'm not trying to fit into anyone else's expectations about illness or disability; I'm using my voice to represent my truth. I hope anyone who is reading this will join me in using the hashtag.<br />
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Use it to talk about your diagnosis story, use it to spread some humor despite the horrors of illness, use it to raise awareness about your specific condition, use it to make illness (physical and mental) visible, use it to speak your truth and reclaim authority over your own experience. <br />
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Over the years, I have found that too often when we speak our truth about our experience of illness, that truth isn't visible for a wider audience. Either we talk in closed groups and message boards online or behind closed doors. Many able-bodied people and many in the medical community have no idea what living with an invisible illness entails. They don't know that so many of us suffer for years without a diagnosis. They don't know that our experiences have been misrepresented. They don't know how good life can be despite illness and all that you can learn from it.<br />
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<div style="margin-bottom: 0in;">
<span style="font-family: "times new roman" , serif;"><span style="font-size: small;">The writer Cherr<span style="font-family: "times new roman" , serif;">í</span>e Moraga said "silence is like starvation." Speaking your truth is a form of power, a means of survival. When others hear our stories, the stories can raise awareness and inspire change.</span></span></div>
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All I want is for no one to ever have to hear either "you're wrong" or "I don't believe you" ever again.<br />
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So I'm hoping by making illness visible and sharing our truth, someday no one will ever have to hear that and go through the same suffering. <br />
<br />
Because this is my voice, this is my body, this is my truth.<br />
<br />
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<br />Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com8tag:blogger.com,1999:blog-9220835700586365061.post-84252607584360357302016-09-12T15:43:00.000-07:002016-09-12T15:43:30.183-07:00Momentary DistractionSo much has happened since the last time I posted but I am still not doing well enough to type an update. I'm writing this on my phone. I've spent almost all of the last two months in bed on my BiPAP, recovering and trying to improve. I'm not there yet but I'm starting to get there. In the meantime, I'm going to try to share some little writings and crappy poems from my journal that I still write in almost every day. That seems manageable. I wrote this one a few days ago:<br />
<br />
<br />
<br />
<br />
I crackle<br />
I break<br />
A body with a language all its own<br />
No one can decipher<br />
But a petal here<br />
A petal there, look<br />
It bends, snaps<br />
A momentary distraction<br />
Pause the piecing together<br />
Holding limbs that fray and unravel<br />
Clenching it all together for just a breath<br />
To let it collapse<br />
Look as it blooms<br />
There's life pulsing there<br />
A tiny blade of grass alone<br />
A diaphanous web clinging in memory<br />
Sunlight piercing trees<br />
For just a moment the internal battle ceases<br />
And I remember how to feel alive<br />
<br />
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<a href="https://2.bp.blogspot.com/-0tK9t3tYXW4/V9cjsD9OJBI/AAAAAAAACMo/0Ci8l2kInMU0xVmyJhBqejKv34DU-kHmwCLcB/s1600/IMG_20160721_114011.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-0tK9t3tYXW4/V9cjsD9OJBI/AAAAAAAACMo/0Ci8l2kInMU0xVmyJhBqejKv34DU-kHmwCLcB/s320/IMG_20160721_114011.jpg" width="320" /></a></div>
<br />Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com2tag:blogger.com,1999:blog-9220835700586365061.post-26893866566205589152016-07-08T13:57:00.003-07:002016-07-08T13:57:55.878-07:00Vacation! <div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I’m doing something crazy next week, something I
haven’t done in years. We’re going on a vacation! I mentioned this before, but
I haven’t left my town for something that isn’t medically-related in two years. </span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Seriously. Two years.</span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I haven’t even gone to the next town over to see my BFF’s
new place. She moved there almost two years ago. I haven’t made it to the Bay
Area to visit my sister, about a two hour trip. She’s lived there for three
years. I haven’t been to our favorite place, Sonora, an hour drive away, in two
years, and the last time I went to Yosemite was three years ago. I haven’t even made it to any of my appointments at Stanford this year. I've had to cancel every single one. Travelling has become absurdly challenging, especially this year, so all of
that has just not happened.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">The last time we left town for something fun was when
we went to Tahoe for a week with some friends two years ago. We had a great
time. I wasn’t doing great but I was doing much better than I am now. I was still working at that time. I had
just survived the last semester I was able to teach and I was rapidly losing my
mobility and independence at that time, but I wasn't completely couch-bound then. We played
games most of the day and went out to eat most evenings. I sat on the porch
that overlooked the forest and read much of the time. We went to the lake one
evening as the sun was setting but I wasn’t able to last long so we didn’t get
to watch the sun set. <o:p></o:p></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-bfiO6y8Rbfs/V37RI8aL1tI/AAAAAAAABTA/cnxWeRf-5sIExXeSAGNe7mecbxUgD39wwCLcB/s1600/Tahoe.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://4.bp.blogspot.com/-bfiO6y8Rbfs/V37RI8aL1tI/AAAAAAAABTA/cnxWeRf-5sIExXeSAGNe7mecbxUgD39wwCLcB/s320/Tahoe.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The view from the porch. Ah to live with this view every day. What a dream</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I ended up at the ER on the last day we were there.
That’s a story I still haven’t shared on the blog yet and I still might someday.
If I could create a dream ER experience, it would have been that. I was treated
quickly and the ER doctor, who was probably younger than me, had heard of POTS. That ER was incredibly busy. I got an IV and some Zofran and as I waited for the IV to finish we heard someone have a heart attack, someone who drowned in the lake, and the man in the bed next to me was withdrawing from something. The ER doctor forced me to drink Gatorade which I HATE because I declined a second bag of fluids. I just wanted to go home. After one bag, I felt ok enough to make the drive. Anytime I need to go the ER, I dream about go that hospital in Tahoe.</span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-yOAIm9E_Qc0/V37Q5RRmOFI/AAAAAAAABS8/240IfOAaN5cXyCnz8fFHRlowqr1sdWeiQCLcB/s1600/stefER.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-yOAIm9E_Qc0/V37Q5RRmOFI/AAAAAAAABS8/240IfOAaN5cXyCnz8fFHRlowqr1sdWeiQCLcB/s320/stefER.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mustering a smile as the IV worked its magic</td></tr>
</tbody></table>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">We didn’t know at that time that I also had Myasthenia Gravis. I
was having difficulty breathing and the lack of oxygen at high altitude did not
help. I hadn’t even told my doctors at that point that I was having trouble
breathing. The mountain thunderstorms that were passing through made me severely nauseous. It was a bit calamitous but a</span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">side from having to go the ER, I look back on the
trip with fondness. I had a great time. I’m glad we were able to go somewhere
while I was still able to travel. </span><br />
<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">I just wish we would’ve stayed at sea level.</span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">So this year we decided to go to Monterey with the
same friends and stay in a house for a week. As I’ve been going through the
worst health crisis I’ve ever had the last few months, I keep thinking “I have
to make it to Monterey. I will make it no matter what.” I haven’t really been
focused on much else at this point besides trying to get well enough to make
it. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">We planned this trip awhile ago and I always
imagined that I’d wake up each morning while we were there and do my usual
routine of yoga, stretching, meditation. I never imagined I’d be using my
wheelchair full time instead. In a few days, it will be two months since I’ve
been unable to walk or stand. It’s not how I imagined this trip but it doesn’t
mean I’ll enjoy it any less. We were planning on playing a lot of games too but
more than likely I won’t be able to participate much, but that’s ok.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">As a lifelong Californian, I've been to Monterey many times over the years so I definitely won't feel like I'm missing out since I'll have to spend most of my time on the couch while we're there. </span><span style="font-family: "times new roman" , serif; font-size: 16.6667px; line-height: 19.1667px;">We were planning on going to the Aquarium, and that’s the main reason why we chose Monterey since the only way I could manage a trip to the Aquarium is if we stay multiple nights. I’m not sure I’ll feel well enough for that but it’s not off the table. Not sure I’ll be able to make it to the beach either but I’m definitely going to try. I'm mainly just looking forward to being somewhere that isn't obscenely hot and getting a change of scenery, from my couch to another couch.</span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I’m going to try to take some time off from being
engaged in the world. It’s election season here in the US and I’ve been
completely absorbed in that, global politics, and the violence that’s happening
here. I may spend all of my time at home, but I’m still an engaged citizen of
the world. But I definitely need some time away from that and running through the
list of the all the appointments and health management I need to do in my head every day.
There’s always something I have to prepare for, plan, make calls about. I’m
going to take a much-needed break from it all.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">When I get back, I get about a week to rest and then
I have to do <a href="http://kindofbroken.blogspot.com/2015/01/one-more-test.html" target="_blank">the worst test ever again (the Single Fiber EMG) at Stanford</a>. But
I don’t want to talk or think about that right now.<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I’ve been trying to figure out what a suitable
number of books bring is. If we’re there for five days, is four too many? What if
I run out! What if I have nothing to read! The horror. I’m just going to take
it all. Two works of fiction, one of philosophy, one of poetry, and my tablet in
case I need anything else. Seems reasonable to me.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">It was over 100 degrees essentially every day for a
few weeks here. I was telling husband that I don’t even know how to pack for
this trip because I don’t remember what 65 degrees even feels like. I’m going
to enjoy being able to wear my higher quality compression stockings with jeans
and being able to go outside. It won’t get cooler here until November so it’ll
be a nice reprieve from the brutal heat.</span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">I went out into public for the first time in months last week and it ended up being a bit disastrous since it was 104 that day. We went to my favorite antique store. I'm hoping that the cooler weather will make leaving the couch a little more feasible but we'll see. </span></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;"><br /></span></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-_J828juAPu4/V37RVeQQ6BI/AAAAAAAABTE/kvww_d6ey8EOIfWiBlbzTh2m8fjyHDa0wCLcB/s1600/antiquestore.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://1.bp.blogspot.com/-_J828juAPu4/V37RVeQQ6BI/AAAAAAAABTE/kvww_d6ey8EOIfWiBlbzTh2m8fjyHDa0wCLcB/s320/antiquestore.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Husband and I at the antique store. No amount of air conditioning could save me at that point but it was nice to get out</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">I've been carefully planning for this trip for weeks now. Traveling while ill presents enormous challenges and it's difficult to make contingency plans for every form of chaos that can ensue. I've made a list of everything I'll need to take, including my meds, my breathing machine, shower chair, inhalers, my provisions and electrolytes, etc. Anytime I think of something, I write it down since my memory is unreliable. I'm working on packing a little every day so it doesn't completely exhaust me too much. </span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">I'm just going to cross my fingers and hope for the best.</span><br />
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">I’ll probably be quiet on the Facebook page but
follow me on <a href="https://www.instagram.com/stefanieshea/?hl=en">Instagram</a> or <a href="https://twitter.com/Lilacmess">Twitter </a>where I might be posting some
pictures.</span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I’m hoping to get a ctrl-alt-delete on life, a nice
reboot, and come back feeling a little more refreshed and renewed. I'll be listening to this song over and over, enjoying a little reasonable sunshine. <o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<br /></div>
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/Iox02E-kyP4" width="560"></iframe>Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com2tag:blogger.com,1999:blog-9220835700586365061.post-74226155584628187362016-06-22T14:56:00.001-07:002016-06-22T21:18:39.825-07:00Hello Again<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Hello out there. Since it’s been so long since I’ve
posted, I'</span><span style="font-family: "times new roman", serif; font-size: 12.5pt; line-height: 115%;">m not sure where to start, so I’ll start at “Hello.”</span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Sorry for the silence here the last two months. My condition took a sharp turn about a month and a half ago and I’ve
spent most of my days since just surviving. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I haven’t been doing well the last few months. I
haven’t had a decent night’s sleep in four months. Sometimes I only sleep 2
hours a night. Sleeping and
breathing at the same time is not really a thing my body is able to do anymore
and that is the main culprit of my insomnia, although it’s not the only reason.
But there’s good news on that front (I discuss more below).<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Since I haven’t been sleeping well, the weakness in
my limbs has turned to paralysis. Not having use of my limbs makes typing
really challenging. Thus, I haven’t posted. </span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">A month and a half ago, I woke up
one day and felt the heaviness in my limbs, the signal they send me to say “you
have little use of us today and if you over-do it we’ll shut down completely.
Good luck!”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I heard what they told me but I loaded the
dishwasher anyway. I said “I do what I want! You don’t own me.” I moved too
much anyway. I pushed too far. Bam. My muscles completely shut down. Typically, I can rest for a
few hours and they’ll come back to life, but it was different this time. </span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I
haven’t been able to stand or walk since and my wheelchair is my constant
companion now.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">My BFF always jokes that Myasthenia Gravis sounds
like a Harry Potter spell. If it was a Harry Potter spell, it would make your limbs
turn into gummy worms.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">The first few weeks when this started I needed help with every
basic task, including getting to the bathroom. Since then, I’ve gotten some of
the independence I had before back, but I still need help showering and making food. I can't help with any cleaning. We have to prepare my food the day before. I still have
intermittent use of my arms. <o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I've lived in fear of this the last year. I have had periods where the paralysis intensifies and I can barely get around my house with my cane, or I'm not able to walk at all. But the longest I've ever been unable to walk is 12 hours. This is a new normal indeed.</span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">My whole body has become so weak and deconditioned
without any movement at all. All this time I’ve been trying to imagine how I’m
going to rebuild my strength. It’s a daunting task. Imagining just walking from my
bed to my bathroom again feels like climbing Everest. There’s no chance to
rebuild my strength right now because any time I try to use my muscles the more
the paralysis sets in. That’s typical for Myasthenia. Using muscles draws the
antibodies from your blood into the muscle, making it weaker and weaker.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">So I’m not completely sure how I’m going to climb out
of this. I’m honestly just trying to go with it, take it day by day and moment
by moment. My body makes the rules so I'm just trying to finally learn how to follow its lead and not fight against it. The harder I fight, the more I sink in the quicksand. It's better just to roll with it, literally. <o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">So I continue to wait.</span></span></div>
<div class="MsoNormal">
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<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">When the paralysis was so intense that I needed help
with every basic task, husband and I packed a bag and planned to head to the
ER. I mentally prepared myself for a long hospital stay. But my neurologist
(who has been minimally helpful during this health crisis) told us not to go to
the ER unless my breathing completely shut down. My packed hospital bag is
still sitting on the floor in our room just in case.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">It’s incredibly frustrating. I had been making
progress with yoga the last 6 months, I had been able to walk farther than I
had been able to almost a year in Febraury, and now it's gone. I keep
thinking “what did I do? How did this happen?” <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I think I have an idea of what happened. I got over-ambitious. I was in
denial about how much I have declined in the last 6 months in general. <a href="http://kindofbroken.blogspot.com/2016/03/dear-body-please-forgive-my.html">Ever since that day that I screwed up, took my body for granted, and tried to play with my nephew for a few minutes back in March</a>, I haven’t been the same. That
started the insomnia and the constant insomnia turned the usual muscle weakness
into paralysis. I started a higher dose of the medication I use to sleep and I think that played a role too. </span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I
think that’s how I got here. But it’s
often fruitless to backtrack and try to figure out how or why. Illness often
has a mind of its own and control is an illusion. Trying to find a narrative that explains the 'how' and 'why' often is a pointless endeavor.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Although this crisis has been challenging for
husband and I, we have started adapting to it. I have adjusted to using the
wheelchair all of the time pretty well. We’ve come up with solutions to help me
maintain some of my independence and preserve the strength and energy I have.
Each night, husband prepares my breakfast and lunch for the next day. <o:p></o:p></span></div>
<div class="MsoNormal">
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<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">It may sound strange, but in some ways this crisis
has given me more resilience. I was extremely depressed the few months before
this because I was having difficulty exercising, walking, or seeing any of my
friends and family. Yet, this has given me a huge appreciation for the
independence and mobility I had. It has given me more determination to move
again and get my strength back. <o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-PnwycxtVrns/V2ripzZu1sI/AAAAAAAABRQ/22yfgbG-XN0wwaUcteZIPWPuvN3LEGzUgCLcB/s1600/Bellawheelchair.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-PnwycxtVrns/V2ripzZu1sI/AAAAAAAABRQ/22yfgbG-XN0wwaUcteZIPWPuvN3LEGzUgCLcB/s320/Bellawheelchair.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bella appreciates having another place to sit</td></tr>
</tbody></table>
<br /></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I haven’t been able to play my keyboard in two
months, the longest I have ever gone. That, more than not being able to walk,
has been the most devastating part of this. But I’m determined to be able to
have enough use of my arms and enough energy to play again. I want to go back
to the assisted care facility where my mom lived to play for them again in the
near future.<o:p></o:p></span></div>
<div class="MsoNormal">
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<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I’ve been listening to a lot of music, especially
playing my vinyl collection, and reading (follow me on Instagram to see pictures of my vinyl collection. I'm @StefanieShea over there). I’ve even been able to wheel myself
outside sometimes. Husband and I have been watching a lot of Star Trek. Even
though I’m still not well, I still feel satisfied with life in many ways. <o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<br />
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<a href="https://4.bp.blogspot.com/-HqlHo-o6quo/V2rhlD2CdZI/AAAAAAAABRE/SS9fKOC0T6IMRRDRyVX-jDlNp7ccLg4AgCLcB/s1600/stefoutside2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-HqlHo-o6quo/V2rhlD2CdZI/AAAAAAAABRE/SS9fKOC0T6IMRRDRyVX-jDlNp7ccLg4AgCLcB/s320/stefoutside2.jpg" width="320" /></a></div>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">In times like this, I've learned you have to find strategies to not let frustration overwhelm you. It can start a fire that </span></span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">consumes every part of your life. You have to fiercely guard what joy you still have. Ultimately, I've learned gratitude is the antidote to suffering. </span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">To the good news:<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">A few weeks ago, I had an appointment with my
pulmonologist. I haven’t made it to any appointments with any of my doctors
this year and the only test I made it to was my pulmonary function test in April.
Everything else I have had to cancel because I wasn’t well enough. I was in
terrible shape and not able to travel but I had to make i</span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">t to this appointment. I
had to tell my doctor that breathing and sleeping have become even harder.</span></div>
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<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">It was over 100 degrees that day, making the trek to
the next town over to see her even more challenging. But husband created an
elaborate game plan to make sure I was comfortable and able to make it. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I started crying as soon as we got in the room. I could
barely talk to her nurse. I don’t cry in appointments anymore. It wastes time.
I always have my game face on and a detailed list of questions and points to
discuss. When my doctor came in, I was still a weepy mess. I could barely use
my limbs or sit up and I was exhausted from traveling and suffering. It was too
much.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">My pulmonologist is incredible. I wish every doctor
had her empathy and compassion. She was distraught at my condition and my
emotional state. I’m usually all smiles and business when I see her, no matter
how terrible I feel. I asked her again if there was any way I could get a
breathing machine finally, something we’ve been talking about for a year since the respiratory muscle weakness from MG has been my most difficult symptom to manage the last few years. She
said she’d do everything in her power but she thought my insurance would not
cover it. I left incredibly disappointed. The inhalers she gave me and the canned
oxygen I buy online are not enough to offset my breathing difficulty and it is
the major culprit for my insomnia, leading to my declined state. </span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I've heard "this treatment will help you but your insurance won't cover it" so many times. That's the reason my neurologist hasn't been able to start the standard MG immunotherapy for me.<o:p></o:p></span></div>
<div class="MsoNormal">
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<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">A few days later we got a call that I had been
approved for a BiPaP machine. Wait. What? How? We couldn’t believe it! I don’t
know how my doctor did it but I need to send her some flowers.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Two respiratory nurses brought the machine over last
week and showed us how to use it. The first night I tried to sleep with it on
and ended up only sleeping a few hours that night, long after I took the mask
off. It’s going to take some time to be able to fall asleep with it on. I’m
having a lot of trouble sleeping even without an uncomfortable apparatus
attached to my face.<o:p></o:p></span><br />
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<br />
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<a href="https://3.bp.blogspot.com/-f01apXcz7yM/V2nbz6xzV1I/AAAAAAAABQk/q84XRR7sUe43P4JwBWLLj3RvrDGQoaX_gCLcB/s1600/Gilly.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-f01apXcz7yM/V2nbz6xzV1I/AAAAAAAABQk/q84XRR7sUe43P4JwBWLLj3RvrDGQoaX_gCLcB/s320/Gilly.jpg" width="320" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">But I’ve been using it during the day, before bed,
and when I wake up at night not breathing and what a difference it has made.
WOW! Who knew breathing was so great? The only problem is my insurance
didn’t cover the full cost of the machine. Our monthly co-pay for it is $100, which
is steep. We looked at our budget and worked things around to make
it feasible.<o:p></o:p></span><br />
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<br />
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<a href="https://4.bp.blogspot.com/-_pJA1Kiicv8/V2rjCyqUZ_I/AAAAAAAABRc/p3su_oqW9Hks3Gxx1l_2jSIHmRNHj12WQCLcB/s1600/stefgilly.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-_pJA1Kiicv8/V2rjCyqUZ_I/AAAAAAAABRc/p3su_oqW9Hks3Gxx1l_2jSIHmRNHj12WQCLcB/s320/stefgilly.jpg" width="320" /></a></div>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">The day I got my machine, my best friend created a
GoFundMe page to help cover the cost. I guess my closest friends had been
planning this as soon as they heard I was approved for the machine. I was
considering asking them to take it down but my friend explained that people
wanted to help and they had been looking for a way to help. Friends, family,
and even strangers contributed.<o:p></o:p></span></div>
<div class="MsoNormal">
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<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I am astonished at their kindness. It has been an
elixir of hope the last week knowing so many people were rooting for me and
wanted to help us. We are so grateful for the love and support. <o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">So right now I’m working on getting adjusted to the
machine and crossing my fingers and hoping I can start building my strength
again. I’m hoping to get back to blogging regularly again. I can’t believe it’s
been two months since I’ve posted. For any of you still reading, thanks for
hanging on and bearing with me. <o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">There have even been days where I have enough strength to do fun things, like re-plant our Stonehenge garden.</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;"><br /></span></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-vYcjEz0k0Xs/V2rmOm-n7fI/AAAAAAAABR8/7fPqik64ZucA5-_ML87tLRDhd5H0shY-QCLcB/s1600/stonehenge.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="232" src="https://3.bp.blogspot.com/-vYcjEz0k0Xs/V2rmOm-n7fI/AAAAAAAABR8/7fPqik64ZucA5-_ML87tLRDhd5H0shY-QCLcB/s320/stonehenge.jpg" width="320" /></a></div>
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;"><br /></span></span>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I have also learned that when you live a life of limitation and the most excited thing you have to look forward to is leaving the house for blood work or an appointment, you have to create things to look forward to and focus on them instead. This week is our 10th wedding anniversary and we're going to have a big party with our friends and family. We had always planned to drive to Yellowstone for our 10th, but that's not possible. A party is just as great. We're going to Monterey in a few weeks to stay for about a week with some friends. It will be the first time I've left my town for something other than an appointment in two years! We have friends and family coming to visit from other states in the next few months. Despite the obvious drawbacks, life is pretty good.</span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">And you have to hold fast to that.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">To better days ahead for all of us…..<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/IUshy3OSDCA" width="560"></iframe>Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com2tag:blogger.com,1999:blog-9220835700586365061.post-44811909357918823912016-04-28T12:29:00.001-07:002016-04-28T13:42:39.559-07:00Surviving the Worst<div class="MsoNormal">
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<a href="https://1.bp.blogspot.com/-52cEogTBq3A/VyJbYouiZvI/AAAAAAAABO8/87IHwQ5YZzg_Mm3mGGpdrnPrpbg_vTtLwCLcB/s1600/theworst.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-52cEogTBq3A/VyJbYouiZvI/AAAAAAAABO8/87IHwQ5YZzg_Mm3mGGpdrnPrpbg_vTtLwCLcB/s320/theworst.jpg" width="320" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Well. I’m slowly climbing back from the worst rough
patch I’ve ever had, but I’m here. I’m writing. My arms work well enough to
type again. This is progress.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">From the last few posts, you can see that the last
few months have been one long rough patch, but it took a sharper turn the last
week. The thing with experiencing the worst is it’s like a nightmare taking
tangible form. The world drains of color. Nothing brings joy or relief. I couldn't see the other side, and it felt like I would never climb out.</span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">But I am getting to other side.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I’ve had some really severe insomnia for about a
month and a half. I am a lifetime insomniac and go through periods of not
sleeping well but this was different. I was only averaging 3 hours a night and
some nights, I only slept about an hour, long after the sun came up. The thing
with illness is sleep is the center which all forms of symptom management orbit.
If you don’t have sleep, it doesn’t matter how much you rest, eat well,
exercise, etc. Without sleep, everything else is pointless.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I tried all my usual tactics, including changing my
sleep medication. But the reason I was having such a difficult time sleeping is
I was having to spend a good portion of my time in bed during the day and I was
constantly waking up in the middle of the night because I wasn’t breathing. The
latter is not an uncommon occurrence but the less sleep I got, the worse my
breathing got and the more time I had to spend in bed. It was an unending cycle
I couldn’t break. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I don’t know how people who have to spend all of
their time in bed do it, but being bedridden is always a ticket to
insomnia-ville for me. I also kept over-doing it as always and making myself
bedridden again.<o:p></o:p></span></div>
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<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I did manage to make it to my pulmonary function
test two weeks ago though. I’m hoping to write a post about it since it’s a standard test
for Myasthenia. It’s a brutal, exhausting test that includes such exciting activities as breathing into tubes, hyperventilating on purpose over and over, and
getting locked in a glass pod. It was nice to show up though and it’s the only
test I’ve made it to this year, so it feels so good to check it off the list
since I won’t have to do it again for another year!<o:p></o:p></span><br />
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">But I didn’t rest properly after the test and ended
up bedridden and back at insomnia-ville again.</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">But then my body had had enough and my
muscle weakness turned to paralysis. Paralysis can come at any time with
Myasthenia but this was the worst bout I’ve ever experienced. I couldn’t get to
the bathroom without help. My husband had to push me around the house in my
wheelchair, two thresholds I have been dreading and hoping wouldn’t happen for
a long time or never.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">We made arrangements to go the hospital but I had my
husband call my doctor to see if that was the right choice. My doctor said that
if the paralysis entered my respiratory muscles, then we needed to go. Even
though I had little use of my limbs, I was actually breathing ok, for me at
least. A healthy person would still assume they were dying. Going to the ER is
stressful and offers serious risk. I knew I needed sleep and rest and I was not
going to get either of those there. Also, my doctor has still not authorized
immunotherapy—steroids and IVIG—for me, which is standard treatment for
Myasthenia. I really don’t know what they would do for me at the ER. So I
pushed through it. Survived moment to moment. </span><br />
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">It’s a skill I’ve gotten really
good at. I’m an epic level survivor. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I haven’t had to spend any time in bed the last
three days. The paralysis is starting to subside and I’m sleeping better. I don’t
know if I have turned the corner yet but I feel like I’m getting there. The world
has some color again.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I’ve been practicing what I call “militant resting,”
moving as little as possible, focusing on my breathing, and giving my body the
patience and care it needs. Now if I could just stop over-doing it and let my
body recover, that would be great.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I missed my MRI at Stanford again and sent a message
to my doctor asking for another option, hopefully to do the MRI locally since
this is the 4<sup>th</sup> time I’ve had to cancel it. I have another
appointment there in two weeks. I really need to improve so I can finally show
up.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I got my fancy, new record player that was my gift
to myself for winning my short-term disability case and I’ve been lying on my
couch listening to a lot of music, many of my albums I haven’t listened to in a
long time. Music the best kind of medicine; it can be auditory resuscitation.
As something fun and uplifting, I've been working on taking pictures of some of
my vinyl collection I’ve been accumulating the last few decades. If you want to
see it, follow me on <a href="https://twitter.com/Lilacmess" target="_blank">Twitter</a> or on <a href="https://www.instagram.com/stefanieshea/?hl=en">Instagram.</a><o:p></o:p></span><br />
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">It feels like there are shades of normalcy in life again and I'm working hard to get there. My husband has been the unsung hero in this awful saga. He is always the one who deserves all the glory. The last few months have easily been harder for him than for me since he has to care for me, while working and doing everything else. This was the first time I have needed help with every task so I've been working hard to get back to some functionality again. I'm definitely getting there. We survived it together like we always do and watched all of "Cut Throat Kitchen" while I rested.</span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">Since my condition continues to decline and I've struggled to show up to appointments and tests to finally make headway toward treatment, I have this overwhelming sense of dread and fear. What transpired last week did not help this. But I have decided that I won't live in fear of the future and what may come next. I want to try to enjoy each day--laugh with my husband, listen to music, watch the birds in my yard, do everything I can do enjoy each moment.</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;"><br /></span></span>
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">When I was feeling at my worst, I wrote a poem to remind myself of this:</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;"><br /></span></span>
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">I refuse to walk in fear</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">To tread in trepidation</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">To worry what each corner brings</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">But instead</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">To wake each day to a </span></span><span style="font-family: "times new roman" , serif; font-size: 16.6667px; line-height: 19.1667px;">fresh start</span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">And face that possibility with an embrace</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">Each corner is a new chance</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">Something to learn, something to fight, something to laugh with</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">But I refuse to walk in fear toward it</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">Not anymore </span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">Instead, a gesture toward hope</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;"><br /></span></span>
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;"><br /></span></span>
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">I hope all of you are doing well out there. I'm hoping to get back to regular posting again soon. Peace and love to you all :)</span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;"><br /></span></span></div>
Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com6tag:blogger.com,1999:blog-9220835700586365061.post-19605544240283232362016-04-08T14:56:00.001-07:002016-04-08T15:02:45.375-07:00The Week That Was, April 8th<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-SpglS_mgeS4/Vwgdrs9yFKI/AAAAAAAABOU/7ExTZObTYcE4CI9VHf-NOSHgHpviqRL4w/s1600/stefsittingyard.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-SpglS_mgeS4/Vwgdrs9yFKI/AAAAAAAABOU/7ExTZObTYcE4CI9VHf-NOSHgHpviqRL4w/s320/stefsittingyard.jpg" width="240" /></a></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">I guess I didn’t manage to do any weekly updates in
March either so here’s hoping I can do a few in April at least.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-I’m finally starting to feel a little better. I’m
climbing out of the longest rough patch I’ve ever had but I’m starting to be able
to do a little bit of exercise again and it’s been multiple days since I’ve had
to spend part of the day in bed. Woo hoo for a little verticality! The view from my couch is always better than the view from my bed for sure.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I shirked all responsibility this week since I’ve
been feeling better. I didn’t prepare for appointments, make appointments, work
on my applications that needed to be finished, etc. I just enjoyed the feeling
of functionality a bit and put it all off. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">It was lovely.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">- Yesterday, <a href="http://kindofbroken.blogspot.com/2016/04/sponsored-post-why-salt-can-help.html" target="_blank">I shared a sponsored post that’s been in the works for some time</a>. Someone from SaltStick contacted me a few months
ago about doing a partnership and I debated it for awhile. I have no plans to
monetize this blog. That’s not the direction I plan on going but since I’ve
used their product every day for years now and I have found that many with
Dysautonomia have never heard of it, I thought it might be a good idea. The
best part about it is they offered everyone (in the US at least) a coupon code
to try the product. Check out the post and find the code.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Even my husband uses their product since they were
created mainly for athletes in mind. He takes some before he does a hike or
when he goes to Tough Mudder events.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-I found out about a month ago that one of my poems
is going to be published. I submitted some stuff last minute to my alma mater’s
literary journal and had no expectation that anything would be accepted. I’ll
share the poem when the journal is released, which should be in the next few weeks.
They have all the authors participate in a reading but I had to decline to
attend. I would love to have gone but going to an event like that isn’t in my
realm of possibilities right now. Maybe someday.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">- Monday is my mom’s birthday. This week marked 6
months since she passed too. When I spent much of the last month in bed, I had
to put the grieving process on the back burner. I just couldn’t face it when
I was drowning and desperately trying to swim back to the surface. I had
planned on going to the convalescent home where she lived and did hospice care to play their piano on that day. I haven’t played there since before
Christmas. I would like to play there once a month at least but I haven’t been
well enough to do that. I’m not sure I’ll go that day. I might end up crying
more than playing. I do want to go soon though.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I’ve been playing my keyboard almost every day again
and I’d love to go make an offering of music in her honor. She loved Elton John
so there’s one song I’ll definitely be playing, which is at the end of the
post.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-I have a really unpleasant pulmonary test next week
that I am NOT looking forward to. It's a pulmonary function test. Luckily, I’ve done this test before so I at
least know what to expect. It’s at the hospital a few towns over. I’ll have to
breathe hard into multiple tubes for about an hour, which is brutal. I did this test a
year ago and this should determine if my respiratory muscle weakness has indeed
worsened, which is definitely feels like it has.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Compared to a year ago when I did the test, I’m on a
higher dose of Mestinon now and I use multiple inhalers every day. Even with
these, I struggle to breathe every day. I have to limit how much I talk
and I had give up singing completely because it always ends in disaster. My
soul feels incomplete without singing but I’m hoping someday to do it again.
When I can, I’ll be able to perform again. </span><br />
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">The respiratory weakness is my most
difficult symptom to manage by far so I’m hoping when I finally start
immunotherapy that there will be some improvement. My quality of life would
improve immensely if this symptom wasn’t so severe. Unfortunately, it's the most dangerous Myasthenia symptom because you can slip into <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3726100/" target="_blank">Myasthenic Crisis</a> at any time, which is why I have to be so careful every day.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I just want to get this test over with.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-Speaking of Myasthenia, <a href="http://m.medicalxpress.com/news/2016-04-impact-antibodies-myasthenia-gravis.html" target="_blank">an article popped up in my alerts that discusses the potential discovery of new antibodies associated with Myasthenia</a>. It is extremely challenging to diagnose. Some test negative for the current antibodies associated with the condition and this leads to delays in diagnosis and treatment. This has been the case for me. My neuro at Stanford told me I likely have one of these undiscovered antibodies. The longer treatment is delayed, the more permanent damage Myasthenia does to the body. It's been years since my symptoms started and I still haven't started treatment. It's good to know that research is ongoing for the disease and there's hope that people will have access to a diagnosis and treatment sooner! </span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-I have some great news to share. If you’re on the
Facebook page, I already mentioned it there. I’ve discussed many times on the blog
that I’ve been in a long, grueling battle with my private disability insurance
for the remainder of my short-term disability. After two years and multiple
appeals, I found out a week ago that I won my case! We didn’t think I had a
chance in hell since multiple law offices declined to take my case and winning
any disability appeal is nearly impossible without legal support. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">This was my last appeal so I was waiting for one last denial letter. Then I’d set it on fire, shake my fist, and shout some
expletives and move on with my life. That was the game plan. Then they called
me and told me I won my case. I’m still in disbelief. It's not a monthly payment or a permanent disability unfortunately. It's just a lump sum of a few remaining months of my short-term disability, which the insurance company denied me. I'm in the process of applying for state disability right now.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">A few people have asked me to share what strategies
I used to w</span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">in my case. Since my disability was through a private insurance
company, the process was different. That’s why I couldn’t find a lawyer. Very
few take private disability insurance cases. An office in Texas almost took my
case but they ultimately declined. I will write a post soon sharing some of the
knowledge I gained from this process soon.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">It’s a huge victory since I spent an unbelievable
amount of time and energy on all of my appeals over the last two years. What a
relief.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I bought myself a fancy new record player as a reward.
<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I hope all of you are well out there!<o:p></o:p></span></div>
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<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/UA78e27R_J4" width="420"></iframe>Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com4tag:blogger.com,1999:blog-9220835700586365061.post-23626578907620397442016-04-07T13:08:00.000-07:002016-04-07T13:11:04.408-07:00Sponsored Post: "Why Salt Can Help Alleviate Symptoms of Dysautonomia" <div class="MsoNormal">
Today's post is a partnership between Kind of Broken blog and the makers of SaltStick. This is my first sponsored post and I decided to share this post with you because I have used their product every day for years now. I wouldn't have agreed to this partnership if I didn't believe in the product. Enjoy this informative sponsored post and some of my comments at the bottom:</div>
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"As most readers of <i>Kind
of Broken</i> probably know, Dysautonomia is an umbrella term for autonomic
neuropathy, meaning the autonomic nervous system (ANS) does not function
correctly, reducing the effectiveness of nervous signals between the brain and
other organs including the heart, pupils, intestines and blood vessels. This is
why Dysautonomia patients often suffer from symptoms such as low blood
pressure, rapid heartbeat, tunnel or blurry vision. <o:p></o:p></div>
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One common manifestation of Dysautonomia is known as
postural orthostatic tachycardia syndrome (POTS), which occurs when the ANS
cannot compensate for changes in body position. Thus, standing is usually
accompanied by rapid increases in heart rate and a drop in blood pressure. <o:p></o:p></div>
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The link between low blood pressure and severity of POTS
symptoms has been heavily explored by the medical community. However, the
advice to consume ample amounts of water and salt to increase blood pressure
and relieve symptoms hasn’t changed much over the years. <o:p></o:p></div>
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Here’s a little more detail on why salt can help alleviate
symptoms of Dysautonomia:<o:p></o:p></div>
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<b>The link between POTS
and low blood pressure:</b><o:p></o:p></div>
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As we said above, the medical community has heavily explored
the relationship between POTS and low blood pressure. Currently, there are
three main theories:<o:p></o:p></div>
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</span>I.<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->As described by a 2012<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3390096/?"><span style="color: windowtext; text-decoration: none; text-underline: none;"> </span></a><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3390096/?"><span style="color: #1155cc;">study</span></a> published in the <i>Journal of Geriatric Cardiology</i>, the act of standing causes blood
to pool in the legs and feet, due to gravity. In a healthy person, the heart
rate will increase slightly and the peripheral blood vessels will constrict to
keep blood in the upper body. This response depends, in part, on the ANS. In a
Dysautonomia patient, the nervous system does not properly activate these
changes in heart rate and blood pressure, and all the blood will remain in the
patient’s legs and feet, resulting in lightheadedness upon standing. <b>Bottom line: An impaired ANS prevents the
body from responding to changes in position that require increases in heart
rate and blood pressure.<br />
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</span>II.<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->Another theory, suggested in a 2005 <i>American Journal of Physiology</i><a href="http://www.ncbi.nlm.nih.gov/pubmed/15863453/"><i><span style="color: windowtext; text-decoration: none; text-underline: none;">
</span></i></a><a href="http://www.ncbi.nlm.nih.gov/pubmed/15863453/"><span style="color: #1155cc;">paper</span></a>, states that POTS symptoms are due to an
overreaction to changes in the <i>baroreflex
mechanism, </i>which is responsible for regulating blood pressure to the brain
and other organs. The 2005 paper found that POTS patients’ bodies have an
exaggerated response to changes in the baroreflex, which could result in
increases in heart rate. <b>Bottom line:
POTS patients’ bodies do not properly respond to the baroreflex mechanism which
helps regulate blood pressure.<br />
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</span>III.<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]-->A third theory (published in a 2005 <i>Hypertension</i><a href="http://www.ncbi.nlm.nih.gov/pubmed/16203873/"><i><span style="color: windowtext; text-decoration: none; text-underline: none;">
</span></i></a><a href="http://www.ncbi.nlm.nih.gov/pubmed/16203873/"><span style="color: #1155cc;">paper</span></a>) suggests that the genes responsible for
regulating nitric oxide are underrepresented in POTS patients. Nitric oxide
helps regulate blood pressure and also contributes to the release of
noradrenaline, which is the main neurotransmitter for the cardiovascular
system. Thus, impaired nitric oxide release undermines the systems that
regulate blood pressure and heart rate in POTS patients. <b>Bottom line: POTS patients suffer from impaired nitric oxide
production, which hampers blood pressure regulation. </b><o:p></o:p></div>
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As you can see, there’s no consensus about what exactly
causes the low blood pressure in POTS patients. Regardless of the initial
mechanism, the treatment seems to be the same: Drink a lot of water and eat a
lot of salt. In the next section, we’ll explore why this helps alleviate
symptoms. <o:p></o:p></div>
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<b>Why salt increases
blood pressure:</b><o:p></o:p></div>
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Like nearly everything in the body, blood pressure is
maintained through a<a href="http://blog.saltstick.com/2014/12/ratios-and-hydration-how-saltstick.html"><span style="color: windowtext; text-decoration: none; text-underline: none;"> </span></a><a href="http://blog.saltstick.com/2014/12/ratios-and-hydration-how-saltstick.html"><span style="color: #1155cc;">balance of water and certain key minerals</span></a>, one
of which is sodium. This balance is, in part, regulated by the kidneys. <o:p></o:p></div>
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Blood contains water in addition to many other elements,
including blood cells, minerals and nutrients. Whenever there is too much water
in the blood, the kidneys work to remove the excess and send it to the bladder
to be excreted. The process of removing extra water relies on a balance of
sodium and potassium, which work together to pull the water across the walls of
your blood vessels through osmosis. This process has been examined extensively
in medical literature (<a href="http://www.ncbi.nlm.nih.gov/pubmed/16467498"><i><span style="color: #1155cc;">American Journal
of Physiology</span></i></a>, 2006;<a href="http://www.ncbi.nlm.nih.gov/pubmed/22058154"><span style="color: windowtext; text-decoration: none; text-underline: none;"> </span></a><a href="http://www.ncbi.nlm.nih.gov/pubmed/22058154"><i><span style="color: #1155cc;">American Journal of Physiology</span></i></a>,
2012;<a href="http://www.ncbi.nlm.nih.gov/pubmed/22926246"><span style="color: windowtext; text-decoration: none; text-underline: none;"> </span></a><a href="http://www.ncbi.nlm.nih.gov/pubmed/22926246"><i><span style="color: #1155cc;">Nature Reviews: Nephrology</span></i></a><i>, </i>2012;<a href="http://www.ncbi.nlm.nih.gov/pubmed/9004086"><span style="color: windowtext; text-decoration: none; text-underline: none;"> </span></a><a href="http://www.ncbi.nlm.nih.gov/pubmed/9004086"><i><span style="color: #1155cc;">Journal of Human Hypertension</span></i></a><i>; </i>1996). <o:p></o:p></div>
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When you consume a lot of sodium, without consuming a
similar amount of potassium, this balance is thrown off, and the kidneys cannot
pull enough extra water from the blood. This results in a greater volume of
water in the blood stream, which puts pressure on the walls of your arteries
and veins, thus raising blood pressure. In a healthy person, this would be a
bad thing, but in a POTS patient suffering from chronically low blood pressure,
this is ideal. <o:p></o:p></div>
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<b>A caveat: Why it’s
important to create an imbalance: </b>The link between sodium and
chronically-high blood pressure is hotly contested, partly because one of the
most effective methods to counter high sodium intake is to correspondingly
increase potassium. The American Heart Association<a href="http://www.heart.org/HEARTORG/Conditions/HighBloodPressure/PreventionTreatmentofHighBloodPressure/Potassium-and-High-Blood-Pressure_UCM_303243_Article.jsp%23.VuFv1pMrJsM"><span style="color: windowtext; text-decoration: none; text-underline: none;"> </span></a><a href="http://www.heart.org/HEARTORG/Conditions/HighBloodPressure/PreventionTreatmentofHighBloodPressure/Potassium-and-High-Blood-Pressure_UCM_303243_Article.jsp%23.VuFv1pMrJsM"><span style="color: #1155cc;">recommends</span></a> an intake of 4,700 mg of potassium
per day, and notes on its website that “potassium is important in controlling
blood pressure because potassium lessens the effects of sodium.” <o:p></o:p></div>
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Again, it comes down to the balance of sodium and potassium.
If a healthy person consumes too much sodium, which throws off the
sodium/potassium balance in the kidneys, causing an increase in blood pressure,
that person simply needs to consume more potassium to restore the proper ratio.
Of course, in a POTS patient, raising blood pressure to normal levels <i>requires </i>an overconsumption of sodium
relative to potassium. Otherwise, the balance is maintained, and blood pressure
remains too low. <o:p></o:p></div>
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<b>Takeaways: How to
apply this knowledge:</b><o:p></o:p></div>
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Now that you have a greater understanding of the role salt
plays in helping to relieve symptoms of Dysautonomia, we’d like to provide a
few steps you can take to put your knowledge into practice. <o:p></o:p></div>
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<b>Eat a lot of salt.</b>
This one is pretty obvious, but it’s worth repeating the common advice to
consume more salt, which is about 40 percent sodium. Exact recommendations
vary, ranging from seven to 15 grams per day. Either way, it’s far less than
the American Heart Association’s<a href="http://sodiumbreakup.heart.org/sodium-411/how-much-sodium-do-you-need/"><span style="color: windowtext; text-decoration: none; text-underline: none;"> </span></a><a href="http://sodiumbreakup.heart.org/sodium-411/how-much-sodium-do-you-need/"><span style="color: #1155cc;">recommendation</span></a> of approximately 3.5 grams. The
bottom line is that you want to consume more sodium relative to potassium in
order to keep blood pressure at normal levels. If you’re consuming the
recommended 4.7 grams of potassium per day, you’ll need to really increase the
table salt.<br />
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<b>Try SaltStick.</b> Of
course, all that salt in your food can sometimes be … a lot. Salt has a
distinct taste, and it can sometimes get tiring to consume savory foods all day
long.<a href="http://saltstick.com/"><span style="color: windowtext; text-decoration: none; text-underline: none;"> </span></a><a href="http://saltstick.com/"><span style="color: #1155cc;">SaltStick</span></a>, which contains 215 mg of sodium in
each<a href="http://saltstick.com/products/sscaps/cfeatures.htm"><span style="color: windowtext; text-decoration: none; text-underline: none;"> </span></a><a href="http://saltstick.com/products/sscaps/cfeatures.htm"><span style="color: #1155cc;">capsule</span></a>, may help. There are two major
benefits to consuming SaltStick for POTS patients:<o:p></o:p></div>
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</span>I.<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]--><b>It doesn’t taste
like salt.</b><a href="http://saltstick.com/products/sscaps/cfeatures.htm"><span style="color: windowtext; text-decoration: none; text-underline: none;"> </span></a><a href="http://saltstick.com/products/sscaps/cfeatures.htm"><span style="color: #1155cc;">SaltStick Caps</span></a> are flavorless and easily
digestible. Commonly used by endurance athletes exercising in the heat,
SaltStick is formulated to enter the bloodstream with as little resistance as
possible -- either from flavor or absorption in the stomach. If you are tired of
the flavor salt adds to your food, consider supplementing with SaltStick
instead. Note that SaltStick is also non-GMO, vegetarian, gluten-free and does
not contain any sweeteners such as high-fructose corn syrup. Just the
electrolytes you need, in a form your body can easily absorb.<br />
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</span>II.<span style="font-size: 7pt; font-stretch: normal;">
</span><!--[endif]--><b>It provides more
than just sodium.</b> Remember, most physiological processes rely on a balance
among minerals in the blood. “Salt” and “electrolytes” are both umbrella terms
for several minerals, including sodium, potassium, calcium, magnesium and
chloride. <i>All </i>of these minerals are
important for a variety of functions, only one of which is blood pressure, and
consuming nothing but table salt will mean you’re missing out on the other key
electrolytes. Because SaltStick contains all of the above electrolytes, you can
be sure you’re getting everything you need. This is especially important, given
that more than<a href="http://www.ncbi.nlm.nih.gov/books/NBK109825/"><span style="color: windowtext; text-decoration: none; text-underline: none;"> </span></a><a href="http://www.ncbi.nlm.nih.gov/books/NBK109825/"><span style="color: #1155cc;">60
percent</span></a> of men and women consume less than the recommended daily
amount of magnesium, and more than<a href="http://onlinelibrary.wiley.com/doi/10.1111/jhn.12274/abstract"><span style="color: windowtext; text-decoration: none; text-underline: none;"> </span></a><a href="http://onlinelibrary.wiley.com/doi/10.1111/jhn.12274/abstract"><span style="color: #1155cc;">50 percent</span></a> do not consume enough calcium. <o:p></o:p></div>
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<b>But wait! Doesn’t
SaltStick contain potassium? </b>It’s important to remember that POTS patients
want to over-consume sodium relative to potassium. Given that one SaltStick
capsule contains 63 mg of potassium, it may seem counterintuitive to use
SaltStick as a method for increasing sodium intake. However, this should not be
a cause for concern, as each capsule contains more than three times the amount
of sodium than potassium. <o:p></o:p></div>
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SaltStick is designed to mimic the profile of electrolytes
contained in sweat, which results in a 215 to 63 ratio of sodium to potassium.
For the endurance athlete exercising in the heat, consuming this much sodium in
relation to potassium is not only acceptable, it’s <i>recommended</i> because this athlete needs to replace electrolytes lost
through sweat. SaltStick is not recommended for sedentary individuals precisely
because capsules contain levels of sodium that only make sense if you’re
sweating in the heat. <o:p></o:p></div>
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However, for the POTS patient who <i>wants </i>to over-consume sodium,<a href="http://blog.saltstick.com/2015/01/saltstick-how-salt-can-help-relieve.html"><span style="color: windowtext; text-decoration: none; text-underline: none;"> </span></a><a href="http://blog.saltstick.com/2015/01/saltstick-how-salt-can-help-relieve.html"><span style="color: #1155cc;">SaltStick may be ideal</span></a> precisely for the
reasons listed above, and the inclusion of potassium in each capsule should not
be of concern because of the high levels of sodium. <o:p></o:p></div>
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<b>Conclusion</b><o:p></o:p></div>
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We hope we were able to shed some light on why salt can help
relieve symptoms of Dysautonomia. By consuming high amounts of sodium, relative
to potassium, patients can raise blood pressure to normal levels, which can
help counteract the lightheadedness and other negative symptoms. <o:p></o:p></div>
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If you are tired of salting your food, supplementing your
diet with<a href="http://saltstick.com/products/sscaps/cfeatures.htm"><span style="color: windowtext; text-decoration: none; text-underline: none;"> </span></a><a href="http://saltstick.com/products/sscaps/cfeatures.htm"><span style="color: #1155cc;">SaltStick Caps</span></a> may help because each capsule
is flavorless and also provides additional electrolytes that keep your body
functioning properly. <o:p></o:p></div>
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<i>Important Note: The
above should not be construed as medical advice. Contact your physician before
starting any exercise program or if you are taking any medication. Individuals
with high blood pressure should also consult their physician prior to taking an
electrolyte supplement. Overdose of electrolytes is possible, with symptoms
such as vomiting and feeling ill, and care should be taken not to overdose on
any electrolyte supplement.</i><o:p></o:p></div>
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<i>Image source:</i><a href="http://pixabay.com/"><i><span style="color: windowtext; text-decoration: none; text-underline: none;"> </span></i></a><a href="http://pixabay.com/" style="color: #1155cc; font-style: italic;">pixabay.com</a> <o:p></o:p></div>
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<a href="https://2.bp.blogspot.com/-s30QABqW2YM/VwapfEQStdI/AAAAAAAABNc/zLsYSzdgejcXlOrFCWsHMVq916r90WMzg/s1600/SS%2BCompetitor%2BChart.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="251" src="https://2.bp.blogspot.com/-s30QABqW2YM/VwapfEQStdI/AAAAAAAABNc/zLsYSzdgejcXlOrFCWsHMVq916r90WMzg/s320/SS%2BCompetitor%2BChart.jpg" width="320" /></a></div>
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<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
<span style="font-size: 12.8px;">SaltStick has offered a discount code for Kind of Broken readers. Use the code</span><span style="font-size: 12.8px;"> "KIND25" and it is good for 25% off all products bought through our online store at </span><a href="http://saltstickretail-com.3dcartstores.com/" style="color: #1155cc; font-size: 12.8px;" target="_blank">shopsaltstick.com</a><span style="font-size: 12.8px;">. Note that it only applies to customers in the U.S., and it will expire <span class="aBn" data-term="goog_2003754393" style="border-bottom-color: rgb(204, 204, 204); border-bottom-style: dashed; border-bottom-width: 1px; position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">April 30, 2016</span></span>."</span></div>
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My Comments: </div>
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One of the first suggestions you'll hear when you get a diagnosis of Dysautonomia is to increase your salt intake. It takes some trial and error to find the best way to do this because each person's presentation of the condition is different as well as our tastes. Since there are many other electrolyte products out there besides SaltSticks I wanted to make sure there was information that would compare the products, which is provided in the chart above. </div>
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Many in the Dysautonomia groups I'm in use ThermoTabs, which are cheaper. I haven't tried those. I've only ever used SaltSticks and I've had success with them. I'd love to hear your experiences with other electrolyte tablets or other salt products. </div>
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You can also<a href="http://kindofbroken.blogspot.com/2015/04/dysautonomia-and-salt-love-story.html" target="_blank"> read my post here</a> I wrote awhile ago discussing some of the other products I use to try to reach the recommended high salt intake for Dysautonomia patients.</div>
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Increasing your salt intake is just one piece of the puzzle in managing Dysautonomia symptoms. <a href="http://www.dysautonomiainternational.org/page.php?ID=44" target="_blank">Dysautonomia International lists many different strategies</a> for managing the condition that are useful. Since Dysautonomia presents uniquely in each individual, it's important to find what works best for you. </div>
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I hope this information has been helpful and I'd love to hear what other strategies you use to get more salt in your diet.</div>
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Happy salt-loading!<br />
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Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com2tag:blogger.com,1999:blog-9220835700586365061.post-27050472862920702892016-04-01T13:03:00.000-07:002016-04-01T13:05:10.711-07:00Climbing My Way Back<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Hello out there. Sorry for the silence here on the
blog the last few weeks. I’m working my way back to the world and the blog.
It’s a slow climb but I’m making progress.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><a href="http://kindofbroken.blogspot.com/2016/03/dear-body-please-forgive-my.html" target="_blank">A few weeks ago, I did something really really stupid</a>. I’m keenly aware of my limitations and I spend so much time managing symptoms and staying within those limitations, but I suppose I needed a
reminder that they are still there. I tried to play with one of my nephews. It
was just a few minutes of unbridled fun, but it was far more than my body could
handle unfortunately. I often feel sad that I can’t participate in the fun when
my nephews come over and I worry that they’ll remember me as a lump on the
couch, but I should’ve been smarter. I guess all I can do is learn from the
mistake and just enjoy watching my husband play with nerf guns with them. That kind of fun is just not feasible for me anymore.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Sigh.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I’ve had to spend much of the last few weeks in bed.
I had to stop exercising and my daily walks so I’ve lost much of the strength I had gained. It took me about a week to recover from my
mistake but then a severe bout of insomnia and depression took over. I’ve
forgotten what it feels like to sleep through the night. It’s been weeks now. Sometimes I get stuck in these insomnia loops that I can't break out of. It's been awhile since I have had one this bad. The irony about insomnia is you think that the more your exhaustion builds, the more likely you'll finally sleep. Nope! It doesn't work that way. No matter how nicely I ask my brain to sleep, it lets me know that it is the boss and does what it wants. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">So this is why I haven’t been posting. I even had to
take some time away from all social media for awhile too so I could just focus on surviving. The last
three weeks have been a bit of a veritable shitstorm, but I’m trying to remain
undaunted. I’ve had rough patches before, even really bad ones like this. I always eventually climb out. It was almost three weeks since I left the house, and I told husband I started to feel like one of those animals
that lives in a dark cave for so many thousands of years it eventually loses its pigmentation and
sight.<o:p></o:p></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-BuM-JAnE59w/Vv7Oday4SeI/AAAAAAAABMo/d8hhMxJ3eXAG_c-k5rEpqwzs-5mZdXsKQ/s1600/salamander.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://2.bp.blogspot.com/-BuM-JAnE59w/Vv7Oday4SeI/AAAAAAAABMo/d8hhMxJ3eXAG_c-k5rEpqwzs-5mZdXsKQ/s1600/salamander.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Day 15 Selfie </td></tr>
</tbody></table>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">The worst part about all of this is I had to miss
multiple appointments and the important test I was supposed to do at Stanford last Monday. This test was going to be the catalyst to finally starting the
standard immunotherapy used for Myasthenia treatment. At least, that’s what my
doctor said. I’ve been waiting for years to finally start that treatment now. It
didn’t help my terrible record of showing up to appointments and tests so far
this year. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I am continuing to decline overall but I also keep
screwing up and setting myself back. I’m sure many of you out there know this
cycle: you start to feel a little better, you try to do too much, you end up
immobile and back at the beginning. I keep doing this so I’m trying to finally
learn from my mistakes and make some changes. Old habits die hard though.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I’ve stopped trying to use my stationary bike. I
used to have some success using it and it does help my stamina but the last few
times I used it, even when I was having a good day, I ended immobile for a few
days. When I’m able to exercise successfully again, I’m going to stick to yoga
and my short half block walks with my trekking poles. I was having some success
with that. If exercise is only setting you back, then it’s counter-productive.
This is what I’m finally learning. Exercise has to enable functionality, not
the reverse. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I need to stop trying to do too much on days before
appointments. I need to really take the day before to rest so I can show up. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">If I do have a moment where the clouds part, the sun breaks through, and I'm feeling pretty good for just a brief moment, I need to not try to do everything I usually can't do to capitalize on that moment. I'm trying to remember that those moments do happen occasionally but they are actually a lie. No matter how good I feel in that moment, my limitations are still the same. Reminding myself of this will hopefully help me just appreciate those moments instead of pushing myself over the edge each time. </span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">One of my greatest fears in life is making the same
mistakes over and over. So I’m really trying to stop asking too much from my
body every day and hope we can live in a more peaceful communion. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">The last few weeks have been brutal but there have
been some bright spots. I try to sit in our little yard when I can. Some days I
can’t but when I can I sit out there a few minutes at a time so I don’t crash too
hard. It lifts my spirits. </span></div>
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<a href="https://1.bp.blogspot.com/-8TT0V_HR_60/Vv7O8cLU8TI/AAAAAAAABMs/JoG0asmtDk89YWVD8y9w6oJxPFeO04V5g/s1600/standinginthesun.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-8TT0V_HR_60/Vv7O8cLU8TI/AAAAAAAABMs/JoG0asmtDk89YWVD8y9w6oJxPFeO04V5g/s320/standinginthesun.jpg" width="320" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">One benefit of being completely immobilized is I was able to finish two books and I re-watched multiple seasons
of Downton Abbey. I also actually made it outside very briefly yesterday. Husband took me to the thrift store around the corner from our house and I got some beautiful framed vintage art. These were absolutely worth pushing myself to finally leave the house again.<o:p></o:p></span></div>
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<a href="https://1.bp.blogspot.com/-Yhq1QeR-DOw/Vv7PfD1XvrI/AAAAAAAABM0/c36XWmXZuHYeYNuW0006-lFWtM1mkmW7g/s1600/framedart.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="176" src="https://1.bp.blogspot.com/-Yhq1QeR-DOw/Vv7PfD1XvrI/AAAAAAAABM0/c36XWmXZuHYeYNuW0006-lFWtM1mkmW7g/s320/framedart.jpg" width="320" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">My brain is mushy from such little sleep for weeks
so this post is a placeholder until I can get some functionality back on all
fronts. I have a sponsored <a href="http://kindofbroken.blogspot.com/2015/04/dysautonomia-and-salt-love-story.html" target="_blank">post from SaltSticks</a> coming hopefully next week so stay tuned for
that. I love their product. I have some other posts I was working on and a few
changes in mind for the blog. </span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I can feel better days on the horizon.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I hope all of you are doing well out there. <o:p></o:p></span></div>
Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com5tag:blogger.com,1999:blog-9220835700586365061.post-86662270423972222262016-03-14T15:42:00.001-07:002016-03-14T15:46:18.704-07:00Dear Body: Please Forgive My Transgressions <div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">It happened again. Just as I was starting to
recover—ready to grasp a bright spot—I make more mistakes and go back to
where I started.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Stuck in this cycle of slight
improvement, push just a little too hard, then end up back at the beginning. Trying to reclaim that moment of improvement. Over and
over.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I push you body to exercise when you can’t. I make you
walk when paralysis has overtaken your limbs. I have treated you as the enemy
for years when we were always a team. Always.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Sometimes I just get so tired, so frustrated, so
angry at the ever-increasing limitations. So tired of being
shackled under the weight of illness. Then I over-step, ask for too much, push too hard.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I ask for forgiveness.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I tried to have fun with my nephew a few days ago. I tried to play for just a few minutes. </span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">But you can’t do that
anymore. That's no longer within the parameters of your abilities.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I was bedridden for hours and couldn’t walk the
next day. I have struggled to leave my bed and couch since. I don’t want my nephews, my family, my friends to remember me as a
lump on the couch—someone who asks others what they’re doing, who listens to
other people’s dreams and aspirations, who rarely leaves the circumference of a
room. I don’t want this. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">So I push myself too hard every day. I ask too much every day.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">When I rail against my fate and make questionable
decisions in protest of illness, you remind me that my limitations are serious.
The consequences are real. My breath leaves, my limbs no longer move, any hope
of verticality is dashed. Crash so hard and so deep that swimming to surface is impossible.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Only rest. </span><br />
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I rest in penance.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I ask that we try again. One more time. I’ll listen
to what you tell me. I’ll ask no more than you can give. I’ll treat my
limitations as sacred.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Because when we’re a team, we can do great things. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">You give me energy to play music—to get lost
in a melody for a short time, to improvise and roam in the geometry of sound.
It is in those moments that I am truly free.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">You give me enough energy to go outside sometimes
and walk a few feet or look at the flowers growing in my yard. In those
moments, I feel like I’m a member of the world again.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">So we start over, start the cycle again, and maybe
this time I learn from my past mistakes and press forward enlightened and wiser.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Ready to try again. <o:p></o:p></span></div>
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Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com2tag:blogger.com,1999:blog-9220835700586365061.post-34699495141949904512016-03-02T14:50:00.000-08:002016-03-02T14:56:31.505-08:00The Month That Was<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Since I didn’t manage to post any weekly updates in
February, I’m going to do a monthly review—even though we’re in March now. </span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Hello March! It’s great to see you.<o:p></o:p></span><br />
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;">- </span></span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">February was a rough ride. I’m still
trying to recover from the intestinal infection that started months ago, and I had
to spend much of the last few weeks unable to leave my bed or couch. But I feel
like I’m finally turning the corner. I had to cancel my brain MRI at Stanford (this is the third time I’ve had to cancel
it), which doesn’t help my terrible record so far of showing up to appointments
in 2016. </span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">Struggling to show up has made the emotional frustration of illness unmanageable. I put off
writing this post until I could get my frustration under control. I can manage being bedridden and very ill for weeks on end but when
I can’t show up to appointments, manage my care, or accomplish any of the
basic things I need to do every day, then the frustration becomes unwieldy. </span><br />
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">The
last few days have been better though. We’re having an unseasonably warm patch
here in California. It’s hard to feel down when the sun is shining like it is.</span></div>
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<span style="font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><span style="font-family: "times new roman" , serif;">- </span></span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">I’ve been very active my whole life and
even though my body continues to become more limited, I’m still militant about
exercising—to the point that I’m constantly overdoing it. I’m still learning
that I can’t do the exercise I want to do. <b>I have to do what works for my body and adapt to its abilities</b>.
The last few weeks, as soon as I start to feel a little better I try to get
back on my stationary bike and then end up bedridden again. Exercise is
essential for managing Dysautonomia and fending off de-conditioning, but since
Myasthenia has taken over my body as well, I’m very limited in what I can do.
If I push my body even slightly past its limits, the weakness turns into
paralysis and my breathing completely shuts down. It’s really not cute.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">So I’ve been starting to scale back
and adapt my exercise routine. I’ve been doing a mix of simple yoga, pilates,
and some of my physical therapy exercises in the morning, and I am seeing
results! Usually, on the days I exercise I’m tapped out for the rest of the day
but doing these simpler exercises doesn’t completely wipe me out for the day. I’m
able to accomplish more.</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">A few years ago, I started to
suddenly have balance issues and the problem, like many of my other symptoms,
has only worsened since then. I do the exercises my physical therapist gave me
to treat the balance problems but they’ve never helped much. They would only
make a dent and wouldn’t have much lasting effect. It’s hard to tell but it
seems like doing yoga poses every day actually has. I do the poses
between a table and a wall so that I can catch myself when I inevitably fall. I
used to do yoga regularly but this is a simpler version of what I used to
be able to do. The poses I do that target balance are warrior pose, tree pose, balancing
stick, and triangle. I often meditate after I do my exercise. Exercising is working best for me in the mornings right now so I'm rolling with it.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Yoga is definitely not for everyone
so if you are considering it I’d recommend talking to your doctors or other
medical professionals first to see if it could help you. <o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-CZK-CA-OGK8/VtdmDetNLnI/AAAAAAAABKk/-N92KOKiMn8/s1600/tree%2Bpose.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://2.bp.blogspot.com/-CZK-CA-OGK8/VtdmDetNLnI/AAAAAAAABKk/-N92KOKiMn8/s320/tree%2Bpose.jpg" width="171" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Doing Tree Pose like a boss. Like a wobbly boss</td></tr>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;">- </span></span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">My improved balance has helped my
mobility too. I have had to use mobility aids for a few years because of weakness from Myasthenia, balance problems, and orthostatic intolerance from POTS.
Basically, whenever I am upright and moving my body is screaming “WHY WOULD YOU
EVER DO THIS TO ME”. Yet, I still push myself to move. I try to get out and walk
every day with my trekking poles, which my physical therapist suggested. They let
me use mostly my upper body when I walk since my weakness is mostly concentrated
in my legs and they give me added stability.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Last week I actually made it
farther than I have in many months. I made it all the way to the corner of our
street (about half a block). I was starting think I’d never make it that far
again but I did! Husband took a picture for me to commemorate the moment. I’ve
been walking to this point almost every day since! I'm thrilled.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">-Monday was <a href="http://www.rarediseaseday.org/" target="_blank">Rare Disease Day</a>, which
started initially in Europe but now has become a global event. The definition
of a “rare disease” sometimes varies between countries. In
the US, it is defined as a disease that affects fewer than 200,000 people.
Myasthenia Gravis is considered a rare disease but POTS is considered a “rarely
diagnosed” disease. Statistically, 1 in 100 teens are affected by Dysautonomia,
but it is much less common to have initial symptoms later in life (which is
what happened for me). Since Dysautonomia is an umbrella term, there are rare
forms of it that qualify as a “rare disease” such as Pure Autonomic Failure or
Familial Dysautonomia. Ehlers-Dalos Syndrome, a rare connective tissue disorder
often associated with Dysautonomia, is a rare disease.</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">Rare Disease Day is a great
opportunity to raise awareness about rare diseases since research and treatment
options are so limited for these diseases and patients typically must endure
many years of testing and even misdiagnosis to finally get a true diagnosis.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I had hoped to bring you
information about the event sooner but I’ll have to aim for next year. We still
have Myasthenia Gravis Awareness month in June, Invisible Illness Week likely
in September, and Dysautonomia Awareness Month in October, but every day is an
opportunity to raise awareness! <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">MyAware Ireland shared this video on Monday with a brief explanation of Myasthenia:</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">- A <a href="http://kindofbroken.blogspot.com/2016/02/some-goals-for-2016.html" target="_blank">few posts ago</a>, I outlined some of my
goals for the year and I mentioned that I wanted to work on a few projects with
husband, including my mom’s antique armoire she gave me many years ago that’s
been sitting unfinished in our garage. A few weeks ago, I went out into the garage
and husband had moved it into the middle and he said “let’s make it happen.” </span><br />
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">I can’t
remember when my mom bought the armoire but I know I was a teenager or younger.
She decided to refinish it and sanded it, but never finished it and decided to get
rid of it. Before we moved to Nevada, I told her to keep it for me so I could
have it someday. </span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">It’s sadly been sitting in a garage
unfinished for over a decade but we finally finished it! Husband did about
85-90% of the work, but now it’s sitting in our room and I’m over the moon that
it’s finally back to its full glory. I wish my mom could see how beautiful it
turned out.</span></div>
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<a href="https://2.bp.blogspot.com/-tEzhNFsX4po/VtdqxD6WGxI/AAAAAAAABLM/Yx2vlAXKb50/s1600/armoire.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-tEzhNFsX4po/VtdqxD6WGxI/AAAAAAAABLM/Yx2vlAXKb50/s320/armoire.jpg" width="320" /></a></div>
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<span style="text-indent: -0.25in;"><span style="font-family: "times new roman" , serif;"><span style="font-size: 12.5pt; line-height: 115%;">- I was supposed to spend Monday this week
lying in the VERY LOUD TUBE for an hour and a half doing my brain MRI, but
instead I was home working on recovering from </span><span style="font-size: 16.6667px; line-height: 19.1667px;">February's</span><span style="font-size: 12.5pt; line-height: 115%;"> douche-baggery. Instead, we played games with our friends. Game time is serious business for
me, husband, and our friends. We try to play once a week and have been for
years. Now, they move the table to the couch so I can play from there. It’s
hard to feel down about life with good friends like this</span></span></span><br />
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-Hm_t7ipBxY4/Vtdm2kmNPbI/AAAAAAAABKo/LQ5s3rr-KgA/s1600/game%2Btime.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://2.bp.blogspot.com/-Hm_t7ipBxY4/Vtdm2kmNPbI/AAAAAAAABKo/LQ5s3rr-KgA/s320/game%2Btime.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All my favorite beards</td></tr>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I hope all of you out there are doing well! </span></div>
Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com6tag:blogger.com,1999:blog-9220835700586365061.post-57937833703112565632016-02-18T16:42:00.001-08:002016-02-23T17:51:06.302-08:00When You Have to Use a Disabled Parking Placard <div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-lNoUZ4eh-fE/VsZZdO5vzFI/AAAAAAAABJc/uCKF8gsfznw/s1600/invisible_disability_stickers-r449f8209b2e24f9e99cbbfda6d03ece2_v9i40_8byvr_324.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-lNoUZ4eh-fE/VsZZdO5vzFI/AAAAAAAABJc/uCKF8gsfznw/s320/invisible_disability_stickers-r449f8209b2e24f9e99cbbfda6d03ece2_v9i40_8byvr_324.jpg" width="320" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I see it almost daily. In the health communities I’m
in, someone will say “I need to get a disabled placard but I’m afraid to.” I
see the images of awful notes left on the car of someone who uses a placard. You can find examples <a href="http://themighty.com/2016/02/woman-with-eds-fires-back-after-being-accused-of-misusing-disabled-parking/?utm_campaign=site_fb" target="_blank">here</a>, <a href="http://www.nydailynews.com/news/national/note-left-handicapped-car-calls-mom-disabled-child-lazy-article-1.2346770" target="_blank">here</a>, <a href="http://www.mirror.co.uk/usvsth3m/mum-responds-cruel-note-left-5546968" target="_blank">here</a>, and <a href="http://www.independent.co.uk/news/world/australasia/woman-with-multiple-sclerosis-asked-did-you-forget-your-wheelchair-after-parking-in-disabled-bay-a6730216.html" target="_blank">here</a>. I could keep going.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">This discriminatory BS needs to stop.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I too had tremendous ambivalence about asking my
doctor for a disabled placard. I didn’t even consider it an option until my
mobility issues started in 2013. I was at the point where I had to drive between
my classes and buildings on the college campus where I was teaching because I
could no longer manage the walking. Anyone who has been to a college campus
knows that finding a parking spot, just one spot, is worth its weight in gold.
But I was having to find multiple parking spots all day while trying to get to
class on time, and I would inevitably only be able to find a spot far in the
back, which made my driving to get nearer the building pointless. It was
becoming a daily crisis for me as I was desperately struggling to have enough
energy to keep teaching and getting through the day. I could not waste all the
energy I had trying to walk any distance and failing. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">So I went to the doctor I trusted the most, my
cardiologist, to ask him to sign the form. I printed it off the DMV website. Then I felt completely ridiculous asking for a
disabled placard, no matter how desperately I needed it. I even told him how
absurd it felt to ask him for it. He signed it without question. I still was not comfortable with the term
“disabled” then and I was still trying to pretend I could physically do what I
was longer able to do. "Passing" as able-bodied is significantly easier than trying to live with disability, and I was coasting on denial as long as I could. But I asked him to sign the form because I needed to be able to work. I justified it
to myself by saying “I’ll only use it on the days I really need it. I won’t
take up a spot for someone who really needs it. I’m not technically disabled, and I
don’t want to endure anyone’s ridicule or derision because I ‘look fine.’ I
won’t use it very often.” <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">But I was wrong. I was and am disabled. I got the placard
and ended up using it every day because it was a life saver. I wished that I
had gotten it sooner when I needed it, long before I finally talked to my
doctor about it. I wish that worrying about what others would say or the fear
that someone would leave a nasty note on my car wouldn’t have gotten in the way
of me using an invaluable resource I needed.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">There are many who are going through this right
now and are debating whether they should get a placard and if they want to deal
with the discrimination that can come with it. They probably read these horror
stories every day and see the nasty notes people leave on someone’s car because
not enough people understand that most disabilities and chronic conditions are
invisible. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I imagine there are a variety of reasons people
leave notes on cars or make discriminatory comments to the disabled. They may
believe they are standing up for those who are “actually disabled,” acting as
vigilante warriors protecting a “privilege” that only a select few are
“entitled” to. They may believe that people are exploiting the system for
personal gain or even feel envy that someone has access to a prime parking spot
anyone would want. They may assume that all disabilities are visible and that
only individuals who require a mobility aid qualify as disabled.<o:p></o:p></span><br />
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">When someone leaves a note on a car or makes a
comment, they are making rash judgments about someone they’ve never even met
and enacting a gross injustice on someone who faces daily obstacles already. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">This needs to stop. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I count myself
“lucky” because I’ve never had a note left on my car. I had to start
using a cane right after I got my disabled placard so my disability was no
longer invisible. I have gotten harsh stares or questioning glances when I have
used the motorized carts at stores. The last time I drove myself to a store and
used the electric cart (it’s been years now since I could do this), an elderly man
got angry with me because I used the last one. I needed it as much as he did. I
was just trying to pick up my medications without falling or fainting in a
store. Now, when I leave the house I have to use my wheelchair almost all the
time. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I bring my own chair, thank you very much.</span><br />
<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-size: 12.5pt; line-height: 115%;"><span style="font-family: "times new roman" , serif;">When someone who doesn't "look disabled" uses a</span></span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;"> disabled placard
or an electric cart, we need to remember these
points:</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">1. Most
disabilities and chronic conditions are invisible. Often, you cannot “see”
kidney disease, cognitive disabilities, neurological conditions, cancer,
prosthetic limbs, mental illness, etc. All of these and more qualify as disabilities,
and these individuals are allowed access to a disabled placard to make their
lives and the world that much easier to navigate.</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><br /></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">2. Police
officers, parking attendants, etc. can ask someone to show them the permit that
the disabled are required to carry when they use a placard. People do not need to
enact their own form of vigilante justice. There is a system in place to make
sure that those who use the placards are permitted to use them.</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">3. No
one is entitled to an explanation or “proof” of someone’s disability,
especially if you do not know the person. No one is required to “prove” their
disability to anyone. Believing that someone is required to explain their
disability is pure ableism.</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"><br /></span></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">4. If someone would like to help the disabled, there are better ways to do this than by
leaving notes on someone’s car or making disdainful comments. </span><br />
<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><br /></span>
<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">You can support
legislation that helps the disabled. We have the Americans with Disabilities
Act in this country but the law is not perfect. We need more laws and
protection for the disabled so that they can enjoy the same privileges and
access those without disabilities enjoy. You can spread the word that many
disabilities are invisible and learn more about why disability and illness are
often considered “invisible.” You can educate yourself about all that qualifies
as a disability and see that 1 in 5 people in the U.S. are disabled.</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"><br /></span></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">5. There
are essentially no upsides to having a disability. The disabled face hurdles every
day that the able-bodied cannot fathom. If you are concerned that the disabled
are getting a “privilege” that is somehow “undeserved,” you are entitled to
your opinion but don’t act on it. Our society treats the disabled as a
protected class and enables them tools to improve their quality of life so they
can be full participants in our society. The ADA was only passed in relatively recently, 1990, and it provided legal protection from discrimination and made
accessibility in public places for the disabled the law. We should celebrate
the fact that those with disabilities have access to tools that improve their
lives.</span><br />
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">For any of you out there who are putting off getting
the placard because you fear the ridicule or are struggling to recognize
yourself as “disabled,” I know what you are going through but we must use every
means available to us to help us succeed. Even if someone does leave a nasty
note on your car or makes a disparaging comment to you, you can keep fighting
and you can survive it. It comes from ignorance and we can only hope that
someday they will understand the injustice of their act. You are making the
right choice in protecting your health. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">Don't let anyone diminish the choices you have to make to achieve a higher quality of life. </span></span></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-pZZD35JUcE8/VsZj4oDOZrI/AAAAAAAABJ8/v58ePdbSCDE/s1600/Stefchairsutter.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-pZZD35JUcE8/VsZj4oDOZrI/AAAAAAAABJ8/v58ePdbSCDE/s320/Stefchairsutter.jpg" width="191" /></a></div>
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Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com2tag:blogger.com,1999:blog-9220835700586365061.post-15048139547467044142016-02-11T14:12:00.001-08:002016-02-11T15:54:06.966-08:00Valentine's Day Playlist <div class="MsoNormal">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-_qkay7qDRu8/Vr0ENPcr-8I/AAAAAAAABJE/meXjYgXxbxU/s1600/playlist.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://1.bp.blogspot.com/-_qkay7qDRu8/Vr0ENPcr-8I/AAAAAAAABJE/meXjYgXxbxU/s320/playlist.jpg" width="320" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">This week I bring you something fun and uplifting, a
Valentine’s Day playlist to get your groove on. I’m
joining forces with my <a href="http://thelittlebigblog.com/" target="_blank">BFF Carrie Anne over at Little Big Blog</a> for this one and
we’re calling ourselves “Little Broken Hearts.” She curated her own love song
playlist, and both playlists are here for you to enjoy. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">We text each other about 100 times a day, and she
suggested this post about a week ago. She knows I’m a sucker for making
playlists. I know many of you have activities you like to do while you have to
rest on the couch or in bed as your body comes up with new ways to break, doing things such as adult coloring books or Netflix. I like those things too, but what I love to
do the most is make playlists. I make a playlist for every event or gathering
because I worry more about the music being right more than having the right food or
drinks. I can spend hours fine-tuning playlists.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">So when she suggested this post, my brain started
spinning. These are songs that I
really love and that make my heart feel warm and squishy. I hope they make you feel warm and squishy
too! I explained a bit about each song and why I chose it.<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><span style="font-family: "times new roman" , serif; font-size: 16.6667px; line-height: 19.1667px;">Hit play and enjoy!</span></span><br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/videoseries?list=PLTdki9gHN9wJKpzFX65X49i6HEpqXslFb" width="560"></iframe>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-Van Morrison “Into the Mystic”<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">This song has become like an anthem for me and
husband, and we listen to it almost daily. The spirituality in the lyrics, the
acoustic arrangement, and then the poignant saxophones that punch through give
this song such a soulful, ethereal beauty that it’s hard not to feel your heart
swell listening to it. It touches all the right places in my soul: “We were
born before the wind/ Also younger than the sun / Ere the bonnie boats were won
/ As we sailed into the mystic”<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-Nick Drake “Northern Sky”<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">We put this song on our playlist we gave as favors
at our wedding 10 years ago. Nick Drake’s talent burned bright, but sadly he
died far too young. He did leave us with his legacy of gorgeous music to still
enjoy. This is another soulful, upbeat song that always makes me feel happy.
Listen for the bouncy interplay of his guitar, the piano, and the organ. This
one is perfect for long drives on sunny Sunday mornings.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-Bruce Springsteen “Secret Garden”<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">This song just slays me. Utterly slays me. I’ve been
listening to it on loop the last few weeks. I can’t even do anything else while
it comes on. It just possesses me completely. </span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-Stevie Wonder “Creepin”<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I’m a huge Stevie Wonder fan. Along with Nat Cole,
he is my boyfriend. This is easily one of the sexiest songs he has written. Unsurprisingly,
he plays every instrument on this song. It’s got all the makings of a great
Stevie song but it’s the understated groove and longing in the lyrics that make
this one perfect for love. This is a good one for make out sessions with your
Valentine. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-Feist “Inside and Out”<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">This one is just pure fun. All respect to the Bee
Gees, but Feist really modernized and improved this jam. The increased tempo
really did the trick. This is one to dance to with your Valentine. Get up and
shake it or get your groove on from your couch (which is how I do it).</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">- Sting "A Thousand Years"</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I adore Sting. I love his intellectual brand of pop
music and his brilliant musicianship. I had a hard time picking which song of
his to include. I almost went with “Fields of Gold,” but I really like this obscure song on one of
his later albums. I love the cosmology imagery in the lyrics and the way he
blends world music in his songwriting. This song deserves a careful listen. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-The Nat King Cole - “There is No Greater Love”<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I don’t even know what to say about Nat Cole. He is
probably my favorite musician and has been for 20 years. His trio material is
his best work, but most people know him for his vocal material. He was a
brilliant pianist, organist, and arranger as well. This song is one of my all-time favorite songs in general. The
arrangement is string-heavy but is the perfect complement to his velvet voice. “There
is no greater love in all the world/ It’s true / No greater love than what I
feel for you.” <o:p></o:p></span><br />
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-Sam Cooke- “I Wish You Love”<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I’m convinced Sam Cooke’s voice has curative powers.
It’s medicinal music. His voice has saved me multiple times when I’m crashing
physically or emotionally. This song makes me feel melty all over. It’s
hard to choose which Sam Cooke song to use for this list but this one is
perfect. <o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-The Temper Trap “Sweet Disposition” <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I only recently discovered this song even though it’s
been popular for awhile. I had to include it because I’ve been listening to it
non-stop for weeks now. It’s got everything you could want in a great pop love
song: pulsing drum, falsetto vocals, an explosive chorus, an upbeat arrangement.
This is also one to dance to. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-Diana Krall “Popsicle Toes”<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">This song is sexy and fun. She’s one of my
favorite musicians and I’ve seen her live a few times too. This is a
Michael Franks song she made her own. The sexy, suggestive lyrics
and the pulsing groove make this one also a great make out song. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-Patty Griffin “Heavenly Day”<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">This song always makes me a little misty. It’s such
a gorgeous ballad. I only started listening to Patty Griffin a few years ago
and I really feel like I’ve wasted so much of my life not listening to her. My
favorite part about this song is she wrote it about her dog. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-Tori Amos “Merman”<o:p></o:p></span></div>
<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">Like most Tori Amos fans, I’m a fanatic for Tori and
have been since I was a teenager. I have her entire catalogue memorized. There
are other embarrassing things I can share but I’ll save it for another time. This
is one of my favorite Tori songs and the sweetest lullaby she’s ever released.
It’s just her piano and her layered vocals. That’s standard Tori. Get your
tissues out for this one. It’s unbelievably sweet. </span><br />
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Now enjoy Carrie Anne's playlist! It's 90s perfection :) </span><br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/qL_9zWmDcjs" width="560"></iframe>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I wish you all love and a wonderful Valentine's Day!</span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">What love songs would you include on your playlist?</span></div>
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Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com0tag:blogger.com,1999:blog-9220835700586365061.post-14284634165769824482016-02-05T13:37:00.000-08:002016-02-05T21:31:08.163-08:00Some Goals for 2016<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-jOwO9hItIFY/VrUH-m-qBYI/AAAAAAAABIE/OEoUXw85n8g/s1600/change.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-jOwO9hItIFY/VrUH-m-qBYI/AAAAAAAABIE/OEoUXw85n8g/s320/change.jpg" width="291" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I meant to get this post up in December or at least
a few weeks ago, but this post is a compliment to <a href="http://kindofbroken.blogspot.com/2016/01/a-day-in-life.html" target="_blank">my post where I outlined what a typical good day looks like</a>. I spend much of my time coordinating my care,
resting, and working around my symptoms. I make weekly goals in my planner
every week and then prioritize them, always making exercise number one no
matter what else is going on that week. The rest of my goals usually involve phone
calls, paperwork, appointments, etc. Thus, my life often feels like it boils
down to constant management of my own health. I need a reminder to focus on
life and my other goals.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I made this list in December and strategically left
out my health-related goals because I’m trying to find a way to carve out a
life, or a semblance of a life, outside of illness. I would say that the last
few years, illness has controlled my life no matter how much I try to make it
the other way around. I like to believe
I’m the captain navigating these rough waters, but often I’m really just the
vessel plodding along in the storm. I have surrendered to the fact that illness
is a constant source of chaos but it doesn’t mean I can’t at least attempt to
make a life in conjunction with that chaos. This is what I’m telling myself at least.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">My <a href="http://thelittlebigblog.com/" target="_blank">BFF Carrie Anne</a> has
an enviable Life List and she inspired me to make one a few years ago. It’s
funny; I actually recently went back and looked at the one I made, which is from my pre-sick life, and
I put things like “hike Yosmite’s Upper Falls,” “go whale watching,” and
“publish more academic articles” on there. Uhhh….not quite. I’ll have to start
from scratch at some point on it. </span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">But here are some goals I think I can manage
this year:<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><b>1. Get
Back to Creativity</b></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">Whatever your passion or skills, creating
and the desire for self-expression are the essence of our humanity. I have always
been artistic but I lost some of that creative spirit when I became an academic
and while dealing with illness. I used to play music regularly, even getting
paid gigs for weddings or at restaurants. I worked as a children’s illustrator
for years at our local library. I was constantly creating and producing. This
is my number one goal for this year: do something creative every day.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I’ve been playing my keyboard
almost every day for a few months now so I’m on track with music. Even though I
cannot perform right now (which was always my motivation to keep practicing),
I’m working on learning and memorizing new material and trying to improve. I’m
hoping to try to focus more on writing, finishing, and recording my own
material. That’s at the top of my list for my creative goals. <o:p></o:p></span></div>
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<a href="https://3.bp.blogspot.com/-onAvAvTzi7E/VrUR6gt5mvI/AAAAAAAABIo/NVNTlXaq91U/s1600/playing.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://3.bp.blogspot.com/-onAvAvTzi7E/VrUR6gt5mvI/AAAAAAAABIo/NVNTlXaq91U/s320/playing.jpg" width="320" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I dream of getting back to painting
and giving friends and family gifts of artwork regularly. I dream of sitting in
my yard and drawing for 10 minutes at a time and taking breaks. Honestly,
working as an artist for so many years put a damper on my desire to create my
own artwork. As with all creative pursuits, it takes commitment to improve as
an artist and develop skills. I have not been committed to painting for many
years. But I still desire to do it more consistently. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I have some clear writing goals.
I’m working on getting at least one blog post up a week, getting more writing
published, and working toward writing my book. I got six posts up last month,
so I’m already on my way toward reaching some of my writing goals.<o:p></o:p></span></div>
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<b><span style="font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><span style="font-family: "times new roman" , serif;">2. </span></span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">Go
Outside</span></b></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">I try to remember what pre-sick life
was like and what I did every day in those years, and I would not describe
myself as necessarily a home-body then. Yet, since I’m home-bound now, I don’t
even leave the borders of my own home with any frequency. The boundaries of the
world I inhabit now can be measured in mere feet. There is no literal or
figurative horizon to look out to and build dreams on. My horizon is now
internal.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">We live in a duplex that has an
enclosed yard and that was the main reason why I wanted to live here. I try to
sit outside in our yard every day. It’s difficult during the warm months (which
is most of the year here), but I try to time it right each day to get outside
even just for a few minutes. I try to walk with my trekking poles regularly
(I’ve had limited success with this in the last few months unfortunately). My
goal this year is to get outside every day.
<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Along with meditation, this is
fundamental to my mental health and sense of well-being. Getting outside, even
just sitting in our yard, helps me feel like I am part of the world and feel
less trapped. I talk to my cats and the birds in our yard and watch the flowers
bloom. It’s glorious.<o:p></o:p></span></div>
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<a href="https://4.bp.blogspot.com/-EQC_yQGYVZ4/VrUIEdh1laI/AAAAAAAABIU/YJdYtbRI2QI/s1600/Cane%2BShadow.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-EQC_yQGYVZ4/VrUIEdh1laI/AAAAAAAABIU/YJdYtbRI2QI/s320/Cane%2BShadow.jpg" width="239" /></a></div>
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<b><span style="font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><span style="font-family: "times new roman" , serif;">3. </span></span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">Listen
to more music</span></b></div>
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<span style="font-family: 'times new roman', serif; font-size: 12.5pt; line-height: 115%;">This is separate from
number 1. Since I have to spend so much time resting, it’s a good opportunity
to listen to music, yet I honestly spend much of my resting time either reading
the news, watching documentaries, or staring off into space. I’ve been anxiously
waiting for the full swing of the election season so I’m already spending too
much focusing on it. I’m not very interested in football or baseball. The World
Series or the Super Bowl are barely a blip on my radar. Politics is my sports.</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">But music gives me more
joy than almost anything else, so I would like to disconnect more and just
listen. Listen to all the new music from my favorite artists I haven’t listened
to yet. Listen to some of my records I haven’t listened to in ages. Just
listen.</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><br /></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><b>4. Read
more</b></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">I wrote </span><a href="http://kindofbroken.blogspot.com/2016/01/the-books-of-2015.html" style="font-family: 'Times New Roman', serif; font-size: 12.5pt; line-height: 115%;" target="_blank">a post a few weeks ago that listed the books I had finished in 2015</a><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">. I finished 20 books but I’m aiming for
30-40 this year. I know I’ll likely never get back to the 50-70 I read when I
was an academic but it will feel close enough.</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><br /></span></div>
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<b><span style="font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><span style="font-family: "times new roman" , serif;">5. </span></span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">See
more of my friends and family</span></b></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">Even though I don’t get out much, I
see some of my friends somewhat regularly. But I want to see more of them and
see more of my family. The last few years have not been kind to my family and
our relationships suffered significantly under the strain of my mom’s failing
health. I have high hopes that we can start to move forward this year. I want
to see more of my husband’s family too, especially my crazy nephews.</span></div>
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<br /></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I’d love to be able to drive again.
That would make a huge difference with being able to see family and friends
more often. Hopefully at some point I can do that again.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"><br /></span></span></div>
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<b><span style="text-indent: -0.25in;"><span style="font-size: 16.6667px; font-stretch: normal; line-height: 19.1667px;"><span style="font-family: "times new roman" , serif;">6.</span></span><span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">Work
on projects with husband</span></b></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">My husband is a builder and maker
of things but the times I have participated in his projects have been slim to
none. I have a gorgeous 1920s antique armoire that my mom saved for me that
desperately needs to be refinished. It’s been sitting in our garage for three
years and I can’t wait to see it back to its full glory. It’s a serious
undertaking but husband is on board to help with it.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">We have some other projects on the
table. We ordered a flint-knapping kit last year and have been waiting for some
warmer weather to practice making hand axes. We can party like its 10,000 BC
and make some prehistoric tools. Sounds fantastic. <br /><br /><o:p></o:p></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-hapiLIfX23E/VrUQdbZ43rI/AAAAAAAABIg/jGgGu2EtbXE/s1600/flint.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://1.bp.blogspot.com/-hapiLIfX23E/VrUQdbZ43rI/AAAAAAAABIg/jGgGu2EtbXE/s320/flint.jpg" width="245" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This could come in handy in the zombie apocalypse</td></tr>
</tbody></table>
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<b><span style="font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><span style="font-family: "times new roman" , serif;">7. </span></span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">Travel
(i.e leave the house for things that are not appointment-related)</span></b></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I sometimes think about what my
life would look like if illness hadn’t taken it over. I’d still be a workaholic
and spending much of my time working, but I’d also be playing music and
travelling. I have always loved to travel. I honestly cannot remember the last
time I left my town for something other than an appointment, even </span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">just to go to neighboring towns.
One of my BFFs moved to the next town over a few years ago and I still haven’t
seen her new place. My sister moved to the Bay Area a few years ago and I still
haven’t been able to visit her there yet either. It’s just absurd.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I want to attempt to venture out
this year. ‘Travel’ for me doesn’t mean I’m going to travel up the Pacific
Northwest (though I’d give anything to do that again). It means going places
that are nearby, even just a mile or two down the road, and the excursion NOT being
appointment-related. I’m going to actually count any activity where I leave the
house that isn’t for some kind appointment as “travelling.” <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">There are places I really want to
go that are not that far from us but would take some serious planning to pull
off, including having to stay overnight. I haven’t been to Yosemite in 3 years,
which considering we used to go there multiple times a year, is desperately
sad. I’d love to take a trip to Monterrey and go the aquarium. We both love the
Foothills and had family in Sonora when we were growing up. Ultimately, our
goal is to move there, but I’m hoping this year I could pull off a day trip
there again. If I can start slowly working my way up to these things, maybe we
could finally get back to thinking about our bigger travel plans like visiting
my husband’s aunts in southern California again or finally making a trip to
Yellowstone. Someday.<o:p></o:p></span></div>
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<br />
<br /></div>
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<b><span style="font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;"><span style="font-family: "times new roman" , serif;">8. </span></span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%; text-indent: -0.25in;">Meditate
more</span></b></div>
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<span style="font-family: 'times new roman', serif; font-size: 12.5pt; line-height: 115%;">I had a great therapist when we
lived in Nevada who had a background in mindfulness, and she helped me get back to meditating. I used to do a lot of yoga years ago and meditation was always
part of that practice. I would like to consistently meditate again, preferably
once a day. I have found that morning is the best time for me, and I have
actually discovered that it helps to stabilize my heart rate and breathing. I
usually wake up with my heart rate around 160 (thanks POTS) and struggling to
breathe (thanks Myasthenia), but sitting and focusing on my breath helps to
improve these symptoms that are usually the worst in the morning. But more than
anything else, meditation offers benefits for mental health. For me, it has
improved my anxiety significantly and helped my depression too. When I feel
myself starting to spiral out of control mentally, I try to sit still for a few
minutes and just focus on my breath. It really helps.</span></div>
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<br /></div>
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<br /></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">And just for fun, here are some big dreams and
goals—some I’m actually working toward and some that are just crazy ideas I
want to throw out to the universe:<o:p></o:p></span></div>
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<br /></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: .75in; mso-add-space: auto; mso-list: l1 level1 lfo2; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">1.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><!--[endif]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Finish
my album of originals and sell it or make it free online<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: .75in; mso-add-space: auto; mso-list: l1 level1 lfo2; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">2.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><!--[endif]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Write
a book (or two or three)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: .75in; mso-add-space: auto; mso-list: l1 level1 lfo2; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">3.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><!--[endif]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Perform
regularly again<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: .75in; mso-add-space: auto; mso-list: l1 level1 lfo2; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">4.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><!--[endif]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Start
a non-profit that will help disabled chronically ill patients get access to
important resources<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: .75in; mso-add-space: auto; mso-list: l1 level1 lfo2; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">5.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><!--[endif]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Travel
to the UK<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: .75in; mso-add-space: auto; mso-list: l1 level1 lfo2; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">6.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><!--[endif]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Be
able to drive to my friends/family’s house and be able to drive myself to local
appointments<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: .75in; mso-add-space: auto; mso-list: l1 level1 lfo2; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">7.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><!--[endif]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Organize
fundraiser events (for Dysautonomia, Myasthenia Gravis, and Alzheimer’s)<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">8.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><!--[endif]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Be
able to teach in a classroom again (or any capacity really)<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">9.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><!--[endif]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Take
freelance writing jobs<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">10.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><!--[endif]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Have
a vegetable garden that I am able to maintain<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">11.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><!--[endif]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Go
camping<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">12.<span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><!--[endif]--><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"> Get an MFA or finish my PhD<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">13. Sell some of my artwork or give it away for free</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I don’t know if I’ll accomplish any in this last list but
these goals beckon to my soul for completion someday<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">I recommend making a list for yourself also, making
sure to separate the health goals from your life goals. Even as I was writing
this, I kept finding myself listing health-related desires. This was a good
exercise to try to delineate my own desires from the health-related goals I’m
working toward every day. We have to remember to live sometimes, even if much
of that life has to be lived internally. There are still universes within each
of us that deserve exploration.</span></div>
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Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com1tag:blogger.com,1999:blog-9220835700586365061.post-40444781461280266962016-01-29T14:58:00.001-08:002016-01-29T14:58:55.278-08:00The Week That Was, January 29th<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">The good patch I had earlier this month has
definitely ended and the last two weeks have been pretty rough. I’m having
trouble sleeping, eating, and breathing (along with the usual standing and
walking). I keep thinking “how did it get so hard to just be a human being?”
It’s pretty absurd. Aside from these obvious things, my spirit is strong right now, stronger than it has been in a long time. I hope that lasts awhile.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-I finally saw my GI doctor last week for the first
time in a year and a half. Last time I saw him, I explained that after all the
trial and error we went through to manage my Dumping Syndrome, all the prescriptions
we tried that failed, my
GI issues were starting to stabilize since I had stopped working and started using imodium every morning. The GI issues are still my most difficult Dysautonomia
symptom to manage but not working has made a huge difference in managing it.
When I told him this, he basically broke up with me: “just call me when you
need me.” I had finally got back to my normal weight then. It was such a struggle to keep
weight on while I was working.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I kept that weight on for a good year. Sadly, since I’ve had an intestinal infection the last few
months I’m back to the weight I was when I was working, which feels
like failure. I’ve lost about 10 lbs. When I first got ill in 2010, I had an
infection then also but I lost 20 lbs that time. Luckily, this has not been as
bad. He gave me some awful liquid medication that’s cherry mint flavored (the
horror!) and if that doesn’t work, I switch to an antibiotic. Hopefully the
liquid medication will finally take care of it. <o:p></o:p></span><br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-uxyVz58AtnE/VqvgeqBjNnI/AAAAAAAABHE/YAVD2Co6iss/s1600/medicine.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://3.bp.blogspot.com/-uxyVz58AtnE/VqvgeqBjNnI/AAAAAAAABHE/YAVD2Co6iss/s320/medicine.jpg" width="176" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My medicine and husband's "medicine"</td></tr>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">We should start a petition to stop pharmaceutical
companies from adding awful flavors to medications. I can still taste the bubblegum
amoxicillin my sister and I were always on when we were young. I'm sure that flavor stands out to so many people from their childhood.</span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;"> Awful.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-I finally got a hair cut! It’s been about 6 months.
I had to cancel my appointment multiple times but I finally made it yesterday.
It’s amazing how such simple tasks so many take for granted can be mountains to
climb when you are ill. It’s been two years since I’ve dyed my hair and that’s
my next goal. The prospect of sitting up in a chair for 1-2 hours is a bit
daunting. Before I got ill, I got my hair done every few months. I have been dyeing
it since junior high so I had no idea what my natural color even looked like.
But when I started losing handfuls of hair and illness took over my life, it
became a non-priority. I want to make it a priority again because even though I
don’t get out much, it helps me feel better about myself. <o:p></o:p></span><br />
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-oC7dqkZ4HT0/VqvfmsUyW8I/AAAAAAAABG4/-bmOARKaydU/s1600/stefhaircut.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-oC7dqkZ4HT0/VqvfmsUyW8I/AAAAAAAABG4/-bmOARKaydU/s320/stefhaircut.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bella got a cameo appearance</td></tr>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Even though our energy is so limited, I think it’s important not to lose the rituals of
self-care during illness. I know that when I look better on the outside than I
feel on the inside that always gives me a boost of self-esteem, a jolt of determination to power through the physical symptoms.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-We have been watching my oldest nephew most Fridays
now and his younger brother has been so disappointed that he hasn’t been able
to come. He called my husband last week and said “Uncle Dave, can I please come
play Mario and eat gummi bears with you?” So my sister-in-law dropped him off
on Monday and we granted his wish. After we played video games, he requested to
watch a movie and he asked to watch Harry Potter. I was so proud I could’ve
shed a tear. So we watched the first movie and I taught him some Potter spells
to recite with the wand my husband made me. It was a great day.<o:p></o:p></span><br />
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<a href="http://1.bp.blogspot.com/-AfJWWTICSeo/VqvstnzH6NI/AAAAAAAABHc/LOQrYPZfXa4/s1600/zekeanddave.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/-AfJWWTICSeo/VqvstnzH6NI/AAAAAAAABHc/LOQrYPZfXa4/s320/zekeanddave.jpg" width="180" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-Even though I haven’t performed in almost two years </span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">and I’ve had to stop singing because of Myasthenia, I’m still committed to
improving as a musician. Music will always be my greatest joy. It also helps me escape the physical symptoms and just wade in a
vast ocean of melody for a short while—until my energy runs out. One of my
goals still is to learn or memorize at least one song a week. Nat Cole has been one
of my favorite musicians for most of my life and sadly most people have no idea
what an accomplished jazz pianist and organist he was. Many only listen to him at Christmas time. I really recommend any of his recordings he did with his trio. I’ve avoided learning
one of his most popular songs, "Stardust," for years because it's so challenging, but I’ve been trying to
tackle it. My sister loves this song so I’m hoping to play it for her sometime.</span><br />
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-Speaking of jazz, here’s something hilarious.
Jazz is my favorite genre of music. It’s my heart and soul, but some of the
stereotypes about the genre are admittedly deserved.
Comedian Jon Benjamin decided to make an experimental jazz album so he
got a group of accomplished jazz musicians and joined them on piano. Except, he
doesn’t know how to play piano. Hilarity ensues. What’s funny, is some of the
music could actually pass. Miles Davis said there are no wrong notes in jazz,
so I guess you have to give it to him. This really is jazz. I played it for husband (who does not share my love of jazz) and he laughed. Listen to that gorgeous song by Nat Cole above, and then take a listen to this and have a good laugh:</span><br />
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">-This is my 6<sup>th</sup> post this month! That’s
the most I’ve ever gotten up in a month so I’m feeling pretty good about myself.
I’ve got more posts in the works and I’m hoping to get more interviews and guest
posts up too. Stay tuned!<o:p></o:p></span><br />
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><u>Some links from the week: </u> <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Something long overdue: <a href="http://www.npr.org/sections/thetwo-way/2016/01/28/464688159/lego-will-unveil-a-minifigure-in-a-wheelchair-in-a-first?utm_source=facebook.com&utm_medium=social&utm_campaign=npr&utm_term=nprnews&utm_content=20160128" target="_blank">Lego created a disabled minfig</a><o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><a href="http://www.npr.org/sections/health-shots/2016/01/26/464372009/how-meditation-placebos-and-virtual-reality-help-power-mind-over-body?utm_source=facebook.com&utm_medium=social&utm_campaign=npr&utm_term=nprnews&utm_content=20160126" target="_blank">A new book that looks at the empirical research of “mind over matter.”</a> I’ve added it to my must-read list for this year<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><a href="http://themighty.com/2016/01/since-when-is-the-brain-not-part-of-the-body/?utm_campaign=site_fb" target="_blank">A great article by a fellow Spoonie about overcoming the mind/body divide in Western medicine</a><o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">My BFF Carrie Anne outlines <a href="http://thelittlebigblog.com/2016/01/12/five-things-for-the-new-year/" target="_blank">some of her goals for the new year</a></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">A woman describes something so many of us know too well: <a href="http://www.37days.com/no-you-are-not-an-hysterical-female-and-this-is-not-just-anxiety/" target="_blank">her dangerous symptoms were dismissed by a doctor as “just anxiety.” A few days later, she had a heart attack. </a> Another example of the very real consequences of the gender bias in medicine<o:p></o:p></span></div>
Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com0tag:blogger.com,1999:blog-9220835700586365061.post-85303701037728392022016-01-22T12:23:00.000-08:002016-01-26T22:03:13.544-08:00A Day in the Life <div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/--UFwxBRelbU/VqJtv-TaNVI/AAAAAAAABGA/5Bxr2kVpSzU/s1600/todayIwokeup.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/--UFwxBRelbU/VqJtv-TaNVI/AAAAAAAABGA/5Bxr2kVpSzU/s320/todayIwokeup.jpg" width="320" /></a></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 16.6667px; line-height: 19.1667px;">Instead of an update post this week, I have something a little different. My <a href="http://thelittlebigblog.com/" target="_blank">best friend Carrie Anne</a> suggested I write a post like this and I thought it was a great idea. I outlined a typical day for me to show what managing illness looks like and what it means to enjoy life while battling life-limiting illness. This is what a pretty good day looks like, without any major catastrophes. I included a little of my thought process also. This is <a href="http://kindofbroken.blogspot.com/2014/11/the-spoon-theory.html" target="_blank">the Spoon Theory of illness</a> in practice :</span></span></div>
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<i><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">“It’s
9:00. I meant to wake up at 8:30. I set my alarm for 8:30. What happened? I didn't even hear my alarm. I
always feel better physically if I can get up before 9:00. Oh well. I feel like I didn’t sleep. How many times
did I wake up last night? Just the once or twice? I woke up when I heard husband
leave at 3:30. Did I wake up because I wasn’t breathing? No. Not this time.
Intestinal pain? Probably. I can’t nap so this will be as good as it gets
today”<o:p></o:p></span></i></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I get up and make the same breakfast I have every
day: instant oatmeal with a scoop of peanut butter and extra salt. I had to
give up any hope of eating real food in the morning a few years ago because my
GI problems are the worst in the morning and I will instantly be lying on the
bathroom floor if I try to eat real food. I’ve had a few disasters from trying to eat solid food and I'll just leave it there. I
get most of the oatmeal down usually and my morning meds, which are my
tachycardia med, Mestinon for Myasthenia (I can suddenly breathe again!),
Florinef (oh how I hate thee but I cannot function without thee), imodium
(food and I can be on speaking terms again), and a salt pill. </span><br />
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I start hydrating as soon as I wake up and drink fluids (tea, water, V8, Nuun) non-stop until bedtime. That's what it takes with Dysautonomia. I do some of my vestibular exercises in the morning (standing still for 30 seconds and trying not to fall from the swaying). This is supposed to help counteract my balance issues, even though they aren't vestibular related. It usually helps slightly.<o:p></o:p></span></div>
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<i><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">“I’ve
been sitting here watching mindless television for an hour. I got my food and
meds down. Do I attempt exercise? I could get on the stationary bike, or try to
walk, or do some strength, or just meditate instead and try to exercise this
evening? It’s a risk either way. I could waste all my energy on exercise and
risk not being able to make myself lunch or be able to do anything else. I’m
going to risk it. Exercise seems to be going better in the morning. I might not
have any energy left this evening. I better do it now.”<o:p></o:p></span></i></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I do one of those options but never push it too hard
so that I have enough energy still left. The “exercise” I do is only 10 minutes
or less and very minimal. As a former athlete and someone who has always been
very active, it feels pathetic but I know it is still a huge success if I can
do it and if the weakness/paralysis isn’t bad enough that I can get some use
from my legs. With Myasthenia, the more you use a muscle, the more weak it gets and if I'm having a rough patch, the paralysis could set in for days or weeks. I have to be very careful with how much exercise or movement I do because my legs especially will completely shut down if I ask too much from them. Sometimes I end up spending all of my energy on exercising and
sometimes I </span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;">finish exercising feeling slightly invigorated with more energy. It’s
a crapshoot every time.</span><span style="font-family: "times new roman" , serif; font-size: 12.5pt; line-height: 115%;"> </span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I put my compression stockings on (if I exercise, this
happens first), get dressed, do my makeup, brush my hair (maybe curl it), and
listen to NPR news. I may be home-bound now but that hasn’t changed my
perpetual desire for news and politics. I need to know what’s happening in the
world even if I’m barely part of it. I’m still a citizen of the world.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I usually waste copious energy on getting ready.
This is a controversial subject in the spoonie community. I get dressed and do
my makeup every day, even when I’m not leaving the house, and I willingly waste
much energy on this. It is my war paint, it is my normalcy, and it is how I
know the difference between ok days and horrific days. Horrific days are ones
where I cannot get dressed or put make up on or leave my bed. It’s a dash of
vanity too. I don’t want anyone to be able to look at me and see the struggle etched on my face.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">My mother taught me so much about self-presentation and
feeling good about yourself through that presentation. Even when we were destitute
and she was a single mother, she always looked fantastic and had high esteem
about her appearance. It’s something I still value even if I don’t leave the
house most days. I like to know that if a miracle happens and I have enough
energy to leave the house or if someone comes by, I will at least be ready. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I won’t feel the part but I’ll at least look it.<o:p></o:p></span></div>
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<i><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">“It’s
11:30. I have a little time before the Big Crash comes. It’s just all downhill
until I can take my afternoon dose of Mestinon at 4. So many hours from now. This
is the worst time of day for me so it’s time to sit. Sit and rest. My to-do
list still has so much left on it for the week. I have phone calls to make,
appointments to set up, paperwork to fax, I have to talk to the disability
insurance company again. I can’t believe I have to call them again this week.
It never ends. There’s never a week where I don’t have to do something related
to managing my own care. What if I took a week off? Maybe in June? A whole week
where I don’t do any of this? Maybe.”<o:p></o:p></span></i></div>
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<a href="http://2.bp.blogspot.com/-brjHGACLC3w/VqHD4eNJKRI/AAAAAAAABFU/InQT7MoipWA/s1600/stefsitting.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-brjHGACLC3w/VqHD4eNJKRI/AAAAAAAABFU/InQT7MoipWA/s320/stefsitting.jpg" width="180" /></a></div>
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<i><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">"Sit
still. I have to make lunch somehow in an hour and I need to rest for that.
I’ll make the phone call after lunch. After I use my afternoon dose of my inhaler.
That way I won’t be gasping for breath once I get off the phone. The only way I
can sit still is if I force myself to read or watch something. I’ll watch
another episode of Time Team. I never get tired of Time Team. One episode is
enough time to be still and rest before I have to make lunch. Do I have enough
energy to make myself something besides the usual eggs I eat for lunch every
day? It’s a nice thought. The pain in my intestines
tells me that I shouldn’t risk trying to eat other food anyway.”</span></i></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I watch an episode of Time Team, one I’ve probably
already seen and have the dialogue memorized, or a documentary or live music on
YouTube. Then I try to get enough energy to make myself lunch and maybe unload
the dishwasher in stages. I take an hour to eat lunch, which is the amount of
time I need for each meal. Because of the Dumping Syndrome related to
Dysautonomia, I have to eat very slowly. That way I can get enough calories and
the food has a good chance of actually staying in my body long enough to digest
it. </span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-glniOoqt17c/VqJsJ27fnEI/AAAAAAAABFs/RkuaD8oCoZw/s1600/stefcooking.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-glniOoqt17c/VqJsJ27fnEI/AAAAAAAABFs/RkuaD8oCoZw/s320/stefcooking.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All cooking is done while sitting, of course!</td></tr>
</tbody></table>
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<i><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">“It’s
1:00. I guess I’ll make that phone call. Then I’ll sit outside in the yard for
a bit. That sounds lovely. That will be my reward for getting this off my to-do
list. The birds in my yard always hang out with me when I’m out there. They
make me feel like Snow White, if Snow White was a crippled, recovering academic
with a Zeppelin habit. I’ll read or work on some writing while I’m out there.
Or just listen to music. Or read the news. Either way, it will help me sit
still and rest. I’ll check Twitter and see what my friends and spoonie friends are
up to, or what political nonsense is happening. Look at the sky. Feel good
about life and my place in the universe at this moment.” <o:p></o:p></span></i></div>
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<a href="http://2.bp.blogspot.com/-7_cA-GOIiVU/VqJsltNfe5I/AAAAAAAABF0/421LDq7zLSQ/s1600/outside.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-7_cA-GOIiVU/VqJsltNfe5I/AAAAAAAABF0/421LDq7zLSQ/s320/outside.jpg" width="240" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;"><span style="font-family: "times new roman" , serif; font-size: 16.6667px; line-height: 19.1667px;">Husband gets home in the afternoon and we talk about how his day went. He lets me vent my frustration about American politics or whatever news I read. We laugh at some random thing we saw online or heard and banter about our nerd interests. Then he usually plays video games and I read or work on some writing for awhile.</span></span><br />
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">As my morning Mestinon dose starts to wear off, the
afternoon is a slow climb. It’s the worst time of day for me so I try to spend
most of it resting. My inclination is to keep moving, try to clean, do things,
so I really have to force myself to rest during the day. If I push myself, then I can end up bedridden and struggling to breathe and move. Then the day is completely over. It's a constant balance to try to stay mobile and active enough while resting significantly. By 4 PM I can take my
afternoon dose and then things start to turn around a bit. I can breathe
better, have more energy, and more use of my limbs. I can maybe try to go for a
walk or do a bit of cleaning or play my keyboard for 15 minutes. Usually I keep resting. If I don’t eat
dinner by 6 PM, I start crashing again.</span></div>
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<a href="http://2.bp.blogspot.com/--e40QU05_us/VqJzcH8OjHI/AAAAAAAABGg/kxQ6BI2-V3I/s1600/stefkeyboard.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/--e40QU05_us/VqJzcH8OjHI/AAAAAAAABGg/kxQ6BI2-V3I/s320/stefkeyboard.jpg" width="179" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Husband makes dinner most days. Cooking complicated
meals is just not something I’m able to do anymore, so he does the cooking. But
it’s a fair trade because I do all the clean up. I don’t mind doing that part.
It feels like my contribution. I take my vitamins with my dinner since I have
the best success with food at that time.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">The evening is the best part of the day because that's our quality time. We usually eat our dinner and watch whatever Sci Fi show we’re currently watching. I
also watch the news at 5:30 every day. We sit on the couch and watch
our show with our cats and then husband goes to bed around 8:30. I go to bed
later than him so sometimes I’ll go in and lie down with him for awhile. We’ll
grab one of the cats and have a team snuggle for 15 minutes and then husband
falls asleep. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I usually shower, a very quick, lukewarm shower with
my shower chair as one with Dysautonomia must take. A hot shower is one of the worst
things you can do with Dysautonomia because it dilates the blood vessels and
your body is already having a difficult time keeping blood flowing to your
heart and brain from blood pooling. Gravity combined with heat is Dysautonomia
kryponite. That’s how one ends up unconscious on the shower floor, which is not
sexy. Even with the fast, lukewarm shower while sitting on my shower chair, I
can feel my brain start to turn off by the end of the shower so I rush through
it. After I shower, I sit for a bit and rest. I can’t shower in the morning
anymore unfortunately. If I do, it could take me all day to recover from it.
Evening is usually a success. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Around 8 PM, I usually get my second wind or at
least a small surge of energy. I usually finish the dishes if I haven’t already or try to do some of my very easy physical therapy exercises. In the summer, I sit
outside and read since I can’t go outside during the day. I loathe summer now
but eating my breakfast outside in the morning and then sitting outside in the
evening and reading are both real treats. I look forward to that bit at least.<o:p></o:p></span></div>
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<i><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">“It’s
9 PM so I have an hour or so before I take the next round of meds and start
preparing for bed. Should I try to exercise more? No. I did enough today. I have
to save some energy for tomorrow. Do I watch some crappy tv? Or read? Maybe I
could try to mop? I’d give anything to mop. I need to invent a vacuum cleaner/mop
that I could ride because I just cannot successfully do that now. I miss the
days when I could clean our whole house in an hour. Now so little gets done.
Thank god no one ever sees our room and bathroom. I need to learn to live with
it. It’s not the end of the world. I did enough today. It was good enough.”<o:p></o:p></span></i></div>
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<i><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">“Maybe
I could try to drive tomorrow? It’s been almost a year. Maybe I could walk all
the way across the street? It’s been so long. Maybe I could go somewhere with
husband? I don’t want to get my hopes up. I’ll just take
whatever my body throws at me and accept it. I had an ok day today so I just
need to be satisfied with it."</span></i></div>
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<i><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">"I didn't have to spend any time in bed, and that my dear is glorious.”<o:p></o:p></span></i></div>
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<i><span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">“But
I need to sit and rest before bed. I should do my evening dose of my steroid
inhaler now. I may need a hit of my rescue inhaler before bed since I’m not
breathing great. Hopefully they’ll both be enough to breathe ok through the
night. I don’t want to have to use them back to back right before bed. That
will lead to endless coughing and could keep me up. I’ll use it now.”<o:p></o:p></span></i></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">Then I take my evening meds and try to get to bed
before 11. I usually feel my best if I can get to bed by 10:30 and wake up
around 8, but I’ve always been a night owl. I wish I could stay up later, but
those are days are over. I lie in bed and read for awhile, my cat climbs up
next to me, and then I eventually fall asleep to start the day all over again. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">***</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">What I hope to show with this is a little of what it’s
like to manage chronic illness day to day and a little of what it’s like for
those who are so ill that they are home-bound. This is actually what an ideal day looks like, without having to spend any time in bed and accomplishing a few things. Perhaps I'll outline a really bad day sometime, but it won't be an easy read that's for sure. I hope I showed not just the constant battle
of managing illness, but more importantly, what it means to live a good life
despite it—what it is to attempt to thrive despite a body strained by affliction and
in constant chaos. </span></div>
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<span style="font-family: "times new roman" , serif; font-size: 16.6667px; line-height: 19.1667px;">This wasn’t my normal a few years ago because I was working still. I left the house every day. I lived among the rest who have a career and a sense of purpose. But this is my normal now and I have adjusted to it. My sense of purpose has changed significantly and often that purpose is just to try to make the most of each moment, in the hopes that I’ll feel well enough to enjoy it fully. </span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 12.5pt; line-height: 115%;">I never know what I will wake up to each day or how I will feel moment to moment. The day can vary so widely that it is often impossible
to predict what I’ll be able to do. But no matter what the day becomes, I have learned how to feel satisfied with whatever I get and whatever I'm able to do. It's not an ideal life, but it is still a good life. A good life indeed.<o:p></o:p></span></div>
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Stefani Sheahttp://www.blogger.com/profile/08910011148626052717noreply@blogger.com3