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…..

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 4^th 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 :)

Climbing My Way Back

Hello out there. Sorry for the silence here on the blog the last few weeks. I’m working my way back to the world and the blog. It’s a slow climb but I’m making progress.

A few weeks ago, I did something really really stupid. I’m keenly aware of my limitations and I spend so much time managing symptoms and staying within those limitations, but I suppose I needed a reminder that they are still there. I tried to play with one of my nephews. It was just a few minutes of unbridled fun, but it was far more than my body could handle unfortunately. I often feel sad that I can’t participate in the fun when my nephews come over and I worry that they’ll remember me as a lump on the couch, but I should’ve been smarter. I guess all I can do is learn from the mistake and just enjoy watching my husband play with nerf guns with them. That kind of fun is just not feasible for me anymore.

Sigh.

I’ve had to spend much of the last few weeks in bed. I had to stop exercising and my daily walks so I’ve lost much of the strength I had gained. It took me about a week to recover from my mistake but then a severe bout of insomnia and depression took over. I’ve forgotten what it feels like to sleep through the night. It’s been weeks now. Sometimes I get stuck in these insomnia loops that I can't break out of. It's been awhile since I have had one this bad. The irony about insomnia is you think that the more your exhaustion builds, the more likely you'll finally sleep. Nope! It doesn't work that way. No matter how nicely I ask my brain to sleep, it lets me know that it is the boss and does what it wants. 

So this is why I haven’t been posting. I even had to take some time away from all social media for awhile too so I could just focus on surviving. The last three weeks have been a bit of a veritable shitstorm, but I’m trying to remain undaunted. I’ve had rough patches before, even really bad ones like this. I always eventually climb out. It was almost three weeks since I left the house, and I told husband I started to feel like one of those animals that lives in a dark cave for so many thousands of years it eventually loses its pigmentation and sight.

Day 15 Selfie 

The worst part about all of this is I had to miss multiple appointments and the important test I was supposed to do at Stanford last Monday. This test was going to be the catalyst to finally starting the standard immunotherapy used for Myasthenia treatment. At least, that’s what my doctor said. I’ve been waiting for years to finally start that treatment now. It didn’t help my terrible record of showing up to appointments and tests so far this year.

I am continuing to decline overall but I also keep screwing up and setting myself back. I’m sure many of you out there know this cycle: you start to feel a little better, you try to do too much, you end up immobile and back at the beginning. I keep doing this so I’m trying to finally learn from my mistakes and make some changes. Old habits die hard though.

I’ve stopped trying to use my stationary bike. I used to have some success using it and it does help my stamina but the last few times I used it, even when I was having a good day, I ended immobile for a few days. When I’m able to exercise successfully again, I’m going to stick to yoga and my short half block walks with my trekking poles. I was having some success with that. If exercise is only setting you back, then it’s counter-productive. This is what I’m finally learning. Exercise has to enable functionality, not the reverse.

I need to stop trying to do too much on days before appointments. I need to really take the day before to rest so I can show up.

If I do have a moment where the clouds part, the sun breaks through, and I'm feeling pretty good for just a brief moment, I need to not try to do everything I usually can't do to capitalize on that moment. I'm trying to remember that those moments do happen occasionally but they are actually a lie. No matter how good I feel in that moment, my limitations are still the same. Reminding myself of this will hopefully help me just appreciate those moments instead of pushing myself over the edge each time. 

One of my greatest fears in life is making the same mistakes over and over. So I’m really trying to stop asking too much from my body every day and hope we can live in a more peaceful communion.

The last few weeks have been brutal but there have been some bright spots. I try to sit in our little yard when I can. Some days I can’t but when I can I sit out there a few minutes at a time so I don’t crash too hard. It lifts my spirits. 

One benefit of being completely immobilized is I was able to finish two books and I re-watched multiple seasons of Downton Abbey. I also actually made it outside very briefly yesterday. Husband took me to the thrift store around the corner from our house and I got some beautiful framed vintage art. These were absolutely worth pushing myself to finally leave the house again.

My brain is mushy from such little sleep for weeks so this post is a placeholder until I can get some functionality back on all fronts. I have a sponsored post from SaltSticks coming hopefully next week so stay tuned for that. I love their product. I have some other posts I was working on and a few changes in mind for the blog. 

I can feel better days on the horizon.

I hope all of you are doing well out there.