Friday, September 30, 2016

Invisible Illness Awareness and #MyVoiceMyBody

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.

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.

It's difficult to quiet the noise sometimes and remember to find our voice again and reclaim the authenticity of what we experience.

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.

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."

I had to find my own truth again.

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.

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.

These picutres are an example:

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!

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.

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.

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.

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.

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.

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.

The writer Cherríe 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.

All I want is for no one to ever have to hear either "you're wrong" or "I don't believe you" ever again.

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.

Because this is my voice, this is my body, this is my truth.

Monday, September 12, 2016

Momentary Distraction

So 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:

I crackle
I break
A body with a language all its own
No one can decipher
But a petal here
A petal there, look
It bends, snaps
A momentary distraction
Pause the piecing together
Holding limbs that fray and unravel
Clenching it all together for just a breath
To let it collapse
Look as it blooms
There's life pulsing there
A tiny blade of grass alone
A diaphanous web clinging in memory
Sunlight piercing trees
For just a moment the internal battle ceases
And I remember how to feel alive

Friday, July 8, 2016


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. 

Seriously. Two years.

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.

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.

The view from the porch. Ah to live with this view every day. What a dream

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.

Mustering a smile as the IV worked its magic

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 aside 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. 

I just wish we would’ve stayed at sea level.

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.  

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.

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. 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.

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.

When I get back, I get about a week to rest and then I have to do the worst test ever again (the Single Fiber EMG) at Stanford. But I don’t want to talk or think about that right now.

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.

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.

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. 

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

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. 

I'm just going to cross my fingers and hope for the best.

I’ll probably be quiet on the Facebook page but follow me on Instagram or Twitter where I might be posting some pictures.

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. 

Wednesday, June 22, 2016

Hello Again

Hello out there. Since it’s been so long since I’ve posted, I'm not sure where to start, so I’ll start at “Hello.”

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.

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).

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. 

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!”

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. 

I haven’t been able to stand or walk since and my wheelchair is my constant companion now.

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.

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.

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.

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.

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. 

So I continue to wait.

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.

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?”

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. 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, 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. 

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.

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.

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.

Bella appreciates having another place to sit

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.

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. 

In times like this, I've learned you have to find strategies to not let frustration overwhelm you. It can start a fire that 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. 

To the good news:
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 it to this appointment. I had to tell my doctor that breathing and sleeping have become even harder.

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.

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.

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. 

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.

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.
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.

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.

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.

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.

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.

There have even been days where I have enough strength to do fun things, like re-plant our Stonehenge garden.

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.

And you have to hold fast to that.

To better days ahead for all of us…..

Thursday, April 28, 2016

Surviving the Worst

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.

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.

But I am getting to other side.

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.

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.

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.

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!

But I didn’t rest properly after the test and ended up bedridden and back at insomnia-ville again.

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.

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. 

It’s a skill I’ve gotten really good at. I’m an epic level survivor.

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.

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.

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 4th 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.

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 Twitter or on Instagram.

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.

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.

When I was feeling at my worst, I wrote a poem to remind myself of this:

I refuse to walk in fear
To tread in trepidation
To worry what each corner brings
But instead
To wake each day to a fresh start
And face that possibility with an embrace
Each corner is a new chance
Something to learn, something to fight, something to laugh with
But I refuse to walk in fear toward it
Not anymore 
Instead, a gesture toward hope

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 :)

Friday, April 8, 2016

The Week That Was, April 8th

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.

-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.

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.

It was lovely.

- Yesterday, I shared a sponsored post that’s been in the works for some time. 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.

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.

-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.

- 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.

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.

-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.

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. 

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 Myasthenic Crisis at any time, which is why I have to be so careful every day.

I just want to get this test over with.

-Speaking of Myasthenia, an article popped up in my alerts that discusses the potential discovery of new antibodies associated with Myasthenia. 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! 

-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.

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.

A few people have asked me to share what strategies I used to win 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.

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.

I bought myself a fancy new record player as a reward.

I hope all of you are well out there!

Thursday, April 7, 2016

Sponsored Post: "Why Salt Can Help Alleviate Symptoms of Dysautonomia"

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:

"As most readers of Kind of Broken 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.

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.

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.

Here’s a little more detail on why salt can help alleviate symptoms of Dysautonomia:

The link between POTS and low blood pressure:

As we said above, the medical community has heavily explored the relationship between POTS and low blood pressure. Currently, there are three main theories:

      I.        As described by a 2012 study published in the Journal of Geriatric Cardiology, 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. Bottom line: An impaired ANS prevents the body from responding to changes in position that require increases in heart rate and blood pressure.

    II.        Another theory, suggested in a 2005 American Journal of Physiology paper, states that POTS symptoms are due to an overreaction to changes in the baroreflex mechanism, 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. Bottom line: POTS patients’ bodies do not properly respond to the baroreflex mechanism which helps regulate blood pressure.

   III.        A third theory (published in a 2005 Hypertension paper) 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. Bottom line: POTS patients suffer from impaired nitric oxide production, which hampers blood pressure regulation.

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.

Why salt increases blood pressure:

Like nearly everything in the body, blood pressure is maintained through a balance of water and certain key minerals, one of which is sodium. This balance is, in part, regulated by the kidneys.

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 (American Journal of Physiology, 2006; American Journal of Physiology, 2012; Nature Reviews: Nephrology, 2012; Journal of Human Hypertension; 1996).

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.

A caveat: Why it’s important to create an imbalance: 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 recommends 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.”

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 requires an overconsumption of sodium relative to potassium. Otherwise, the balance is maintained, and blood pressure remains too low.

Takeaways: How to apply this knowledge:

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.

Eat a lot of salt. 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 recommendation 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.

Try SaltStick. 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. SaltStick, which contains 215 mg of sodium in each capsule, may help. There are two major benefits to consuming SaltStick for POTS patients:

      I.        It doesn’t taste like salt. SaltStick Caps 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.

    II.        It provides more than just sodium. 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. All 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 60 percent of men and women consume less than the recommended daily amount of magnesium, and more than 50 percent do not consume enough calcium.

But wait! Doesn’t SaltStick contain potassium? 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.

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 recommended 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.

However, for the POTS patient who wants to over-consume sodium, SaltStick may be ideal 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.


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.

If you are tired of salting your food, supplementing your diet with SaltStick Caps may help because each capsule is flavorless and also provides additional electrolytes that keep your body functioning properly.

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.

Image source: 

SaltStick has offered a discount code for Kind of Broken readers. Use the code "KIND25" and it is good for 25% off all products bought through our online store at Note that it only applies to customers in the U.S., and it will expire April 30, 2016."

My Comments: 

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. 

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. 

You can also read my post here I wrote awhile ago discussing some of the other products I use to try to reach the recommended high salt intake for Dysautonomia patients.

Increasing your salt intake is just one piece of the puzzle in managing Dysautonomia symptoms. Dysautonomia International lists many different strategies for managing the condition that are useful. Since Dysautonomia presents uniquely in each individual, it's important to find what works best for you. 

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.

Happy salt-loading!