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.
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.
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.
But now when I wake up I have to remind myself "oh yea. None of that is real"
These are strange days.
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.
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.
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.
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.
After waiting a year, I finally saw the neuromuscular specialist at Stanford in January and a neuropulmonologist. After the terrible doctor at UC Davis, my canceled surgery, 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.
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.
We were at least. Then COVID-19 put that on hold indefinitely or even permanently.
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.
The world hasn't been the same since.
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.
Resting, listening to the news in the hotel
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.
Until next time Stanford
I am forever cursed by normal test results. All that effort and resources for that trip and the tests showed nothing.
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:
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.
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
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.
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.
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.
In the meantime, I hope everyone can do the same. Find ways to laugh, smile when you can, hunker down for the long haul.
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.
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.
So a few days after my last post 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.
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.
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.
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.
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.
This recent article 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.
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.
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.
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.
Patients are human beings. We deserve to be believed and afforded some basic dignity.
But it's done.
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.
I've been doing this too long to accept dismissal anymore. Time is too short, my health too fragile.
So hear me, treat me with dignity, or get out of the way.
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. 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. 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 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:
"October 4, 2019
To Whom It May Concern:
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Respectfully,
Stefani Shea-Akers"
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.
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.
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.
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.
When I get the letter from patient relations, I'll share what they say.
The very first doctor I saw when all this started dismissed me. You can read my narrative about the beginning of this journey here. 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.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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.
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.
He deserves all of the blame.
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.
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.....
The hurt is so deep that it will take a long time to excise it from my body.
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!"
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.
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.
I am heartbroken but I am picking up the pieces, putting myself back together, trying to figure out what comes next.
I will get there. We will all get there.
"Only when you're whole can you forgive.....it's a long, long climb. It's a long, long climb"
I'm just going to share kind of an update of a few things for this post :
- 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.
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.
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.
- 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. Link is here
- 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.
- 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.
- 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 patient wrote an article about how to advocate for yourself during the shortage.
- Read this incredible story by a man who diagnosed himself with Dysautonomia in the 90s and pioneered some of the treatments still used today for this condition.
- 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.
- 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.
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.
Maybe someday.
I hope you are all doing ok out there, and I send you my love and some good grooves
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.
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?
Or I guess just accept that this is what life is right now.
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.
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.
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.
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.
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 here. 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.
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.
I also want to get it done before another doctor pulls the carpet out from under me again.
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.
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.
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...
"I'm not afraid
All is forgiven
Because after all
What's done is done....
I had a dream
I fell out of space and time
I ran through corridors of moment
Desperate to find my way back
To my temporal space
Trying not to look to my right, where the future
Bared itself, real and ready
Or re-witness the past
I don't want to know
I kept seeking a present
That made sense
To find my way back
But I woke up still running
The beat of my heart still
Out of sync
Too slow, too fast
Still searching
In a world
Where I've lost inertia
I fell off the merry-go-round
As it spins out of time
Just a blur, a schism
Nothing to grasp on to
In this lumbering gravity
Living at a slower pace
I've seen leaves turn red
Then fall and turn to stone
I've watched thousands of butterflies take flight
Regenerating into forests
I've held a dying star in my hand
Watched galaxies congeal and melt
Where the cosmic colors converge
And tendrils of life seek then recede
But I never found my way back
I lost my present
And now this body always drags slightly
Behind the beat
Yet still
I am home
