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…..


  1. Wow. What a time you've had lately. As always, I admire your bravery and strength. I hope you have a wonderful time visiting your friends.

  2. I'm so glad your supports came through to help you get that BiPAP machine. (BTW What is the difference between a BiPAP and a CPAP? Are they the same thing?)
    Sometimes all it takes is one tweak of the treatment plan to set many other things right. Fixing the oxygen should be top of the triangle surely?

    I am catching up on your blog backwards. I don't know how I managed to miss your posts this year.

    I have taken heed of this one about not taking the body for granted and listening when the limbs get heavy. My limbs do the same although I do not have an MG diagnosis (mine is MCTD) but the symptoms of weakness are similar and MG is one of the things I was being tested for along the diagnostic journey. Like you, I tend to push the body...not sure how much of that is a sport-mentality or the demands of motherhood...probably a bit of both.

    You were worried about how you will ever get back on track. It is a scary time to be so dependent and have such an unreliable body. I felt that way 10 years ago. Hydrotherapy has been my saviour. It has taken me 10 years, but little by little, the improvements came.

    When I started, it was a challenge to just stand up straight in the water and this year I reached my goal of being able to swim a little way with my own strength. You will be in my thoughts and I hope with all of my heart that you get to see the day when you can stand up again. Hugs!

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