Pushing Against the Current

A bit beat down.

That’s how I have felt for the last few months. Just kind of beat down. Pushing against a rising current.

Sometimes I can swim that current. Sometimes I just have to let it take over.

I haven’t been sleeping or breathing very well, and they both work together to exacerbate the other. I'm always having difficulty breathing but it has been much worse over the last month. I continually wake up in the middle of the night not breathing and then struggle to breathe all day. My medication, my inhaler, and my canned oxygen only do so much right now. I consider it really annoying that breathing is such an essential function. Is there a comment card somewhere I can submit so I can complain about this? 

All the oxygen in the world couldn't put her back together again...

Monday was one of the worst days in some time. I was desperately struggling to breathe and should’ve gone to the ER. But I didn’t. I always say “next time. I swear next time I’ll go. Today I don’t have the fight in me to battle with doctors at the ER or sit in a waiting room for hours.” Next time. The problem with Myasthenia is that you can go into crisis and stop breathing suddenly. The condition can become fatal then. I tried to push through and by evening I was doing a little better. Thank god for Mestinon. I see my pulmonologist next week so maybe she'll have some ideas. Full body transplant? 

I’ve also had some disappointments the last few weeks, but I’m working on rising above them. I have mentioned that I have put an immense amount of energy working on my long-term and short-term disability applications over the last year: gathering medical documentation, sifting through them, making copies, organizing notes, requesting more documentation, making phone calls. My short-term disability was denied in January and I am waiting to hear the results of my appeal right now. My long-term disability was denied two weeks ago.

I was denied based on a “pre-existing condition” because I stopped working within a year of when my insurance policy started (I had to pay into a private system as an educator). As a lowly adjunct, I never paid into any type of disability before that. I wasn’t denied because of medical necessity; I was denied based on a bureaucratic caveat.

I missed the cut off for the pre-existing denial by a few days. If I had been able to hold on at work for just a few more days, I would have been eligible. But that was an impossibility. I held on longer than humanly possible. I tried every loophole with the insurance company and battled the best that I could, but I don’t see a way around it.

Luckily, husband and I have worked some financial wizardry (which unfortunately included him selling his beloved truck) and we can survive on his income. We can make it in a future that will likely include me being unable to work for a long time, possibly indefinitely. It’s a relief.

I can’t rage against the injustice of the “pre-existing” condition nonsense because there are too many people who have also fallen in the cracks and who must struggle because of an inadequate system. I count my husband and I as incredibly lucky compared to some of the stories I have read.

I saw a woman post a picture of her empty refrigerator a few weeks ago. She is waiting for her disability hearing (which can take 12-18 months), and it was the end of the month so she was waiting for her food stamp money. In a Dysautonomia group I am in, I saw a young woman ask “what essentials do I need to survive? I will be homeless in a few days.” She didn’t have any family to rely on and was too sick to be able to work. I see people who are treated like frauds and criminals before they finally get their disability benefits. It can take many years to finally get them. How exactly is anyone supposed to maintain their health or live under those conditions? I could go on and on. 

I don’t know where I’d be without my husband. I wish I could do something to help all of these people who must suffer because they are sick and lost the genetic lottery. It’s heartbreaking. I dream of starting a non-profit that works to support people who have fallen in the cracks. Or winning the lottery and building a commune for all the Spoonies out there who need a home. I like this dream. The commune would also be filled with cats from shelters who need homes. So many cats.

I also got the results of my thymus scan.

Normal. No surgery and I perhaps lose my best possible chance of remission. I may be the only person crazy enough to look forward to the prospect of surgery. My neurologist told me he really expected there would be a problem with my thymus. I tried not to get my hopes up but I thought my trusty thymus might be my ticket for some real answers finally.

This may provoke cognitive dissonance but normal results come with heartache. Once again, you have to hear “everything is normal. Nothing is wrong.” And the subtext I always hear in this is “you’re just crazy and imagining it.” This probably comes from years of being told I was wrong by doctors. I haven’t heard those exact words in awhile but I’m always waiting for them to resurface. I fear that I am going to make a full circle and after all these years, I will just end up back at the dead end of “you’re imagining this.”

Perhaps the tools for really identifying what is wrong may not exist yet, and this is true for so many diseases. When you have lived on the outer edges of Western medicine and turn to stare into the impenetrable abyss of the unknown, you appreciate the limits and hubris of human intuition. We do not know everything.

So I’ve been failing at pushing against the currents of hopelessness of late. It’s been too hot to sit outside, so I’ve been trapped inside, which is not helping. Usually I can sit outside in our little yard that is my oasis. I have two blue jays who have made a home there, a few butterflies, my flowers that can survive the heat. I sit out there, listen to my neighbor’s scream-talking, listen to the great live Mariachi music from the house down the street, and I feel at peace with the world. I just have to hunker down and ride out summer.  

A little patch of heaven 

I know that I’ll get the strength to push against the current again.

I can already feel it building.

In the haze of hopelessness, you reach out a hand into the fog

Hoping for a corporeal grasp, a lift up

Calling for a response

Sometimes only despair is waiting

The current picks up your disparate limbs, a body in pieces, and drags you in its weighted storm

Until

The ground hurdles from under you

You land, bewildered and blinking

You stand up and stare into a world that suddenly has dimension and shape again

But you see the fog in the distance, gathering motion to consume everything once more

Then music. Sound. Booming, glittering life

Make it as loud as possible to drown out the fear

Dance like the fog will never take you again

In a body strengthened in persistence

These are obstacles, riddles to solve, barriers to challenge. I’ve climbed over many before so I know I will again.

I believe sometimes obstacles are there to challenge your will and your warrior spirit; they make you dig deep to see how hard you will fight to climb over them. And sometimes when they are insurmountable, you recognize their immutable weight and just walk around them, waiting for a time when you have more strength to climb over them.

But you never give up. That—at the very least—is non-negotiable.

You press on. Pushing against the current the best you can. Tomorrow is another day and today is worth the fight to make it there.

In the meantime, I'm going to crank up Stevie Wonder, drink my electrolytes, and dance from my couch. Waiting for a lift up.

Happy Myasthenia Gravis Awareness Month

June is Myasthenia Gravis Awareness Month and since I’ve been mentioning it so much over the last year on this blog I wanted to take this opportunity to explain this obscure condition that needs more awareness.

I had never heard of MG before June of last year until I glanced at the results of some of my blood work and saw the words “serological Myasthenia Gravis.” When I saw my neurologist last month, he explained that he was looking for the antibodies related to autonomic dysfunction but accidentally discovered that I had the antibodies typical for MG. I imagine that some or maybe many with MG fall into the condition through happenstance. If you laughed at “fall,” then you are acquainted with this peculiar disease.

Since then, I have learned so much about this condition. MG is a rare neuromuscular autoimmune disease that causes weakness in voluntary muscle movements. It’s not as rarely diagnosed as POTS and has an established history of research and treatment. Like other autoimmune diseases, the immune system sees the body as a foreign entity with MG and begins attacking itself. It does not attack the muscles but specifically the receptors that allow muscles and the brain to communicate. Maybe you can see the problem here. Here is a great infographic that does a better job explaining this. I’m just a Humanities nerd, so the science bit is always above my head:

As mentioned above, common symptoms include droopy eyelids and weakness in muscles that affect facial movement, chewing, breathing, swallowing, talking, and limb mobility. MG was termed the “rag doll disease” because of the severity of the muscle weakness. The ocular symptoms are the most common symptom in MG, and some only experience the ocular symptoms. The level of disability and severity of symptoms can really vary person to person. Men, women, children, and even animals can get the disease, and in some cases the disease can go into remission.

Like Dysautonomia, MG can be considered an invisible illness yet the symptoms can manifest visibly. As with most complex conditions, diagnosis can be tricky. I am going on year three of working toward a diagnosis but for some it can take many years. There are blood tests that can identify the antibodies that are specific to MG, EMG tests, breathing tests, and your medical history can help your doctor determine if you have this disease. Myasthenia is usually only fatal during a “Myasthenic Crisis,” which means respiratory muscles become paralyzed and the patient needs ventilation.

About two and a half years ago, I started having difficulty walking and my breathing problem that started with POTS was getting worse. I tried to brush it off for a long time. When I saw my doctor’s NP, she also brushed it off. Yet, my mobility was rapidly declining. I had to start driving between all of my classes I was teaching and eventually, after much fighting, fretting, and cursing my fate, I started using a cane. Then a few months later, I had to get a walker and then over the last 9 months, I've had to use a wheelchair. My breathing problem has also declined rapidly.

My doctor had me start taking Mestinon, a drug commonly used to treat MG. This drug provides the acetylcholine that the immune system attacks in MG so that the brain and muscles can communicate once again.  My breathing improved immediately with this drug, and I’m dependent on it to breathe normally. From August-November, I spent almost every day in bed, but since I started the Mestinon I only have to lie in bed on bad days or if I push myself too hard. It has given me some quality of life back. Yet, this is a short acting drug and has to be taken every 8 hours. It treats the symptoms but does not treat the mechanism of MG by stopping the body from attacking itself. 

I have documented my journey with diagnosis extensively on this blog because it’s been a difficult ride. I have the antibodies but the number is small and my EMG results were mostly normal. If one the antibodies for MG, it is considered a “serological diagnosis." Some with MG are "seropositive" with the antibodies and some are "seronegative" who test negative for all of the antibodies. I also did a spirometry breathing test earlier this year and that was very abnormal. My neurologist explained that it’s still indeterminate at this time. I’m also having some problems such as intense balance issues that are not typically related to MG. Like I said, the journey to diagnosis with many complex conditions is long and bumpy.

Treatment usually includes Mestinon, immunosupressants like Prednisone, IVIG, and plasmapheresis. In my experience with Dysautonomia, the treatments and research about the condition have been extremely limited and recent. There are “common” treatments for Dysautonomia but essentially every treatment is “off-label,” meaning there are no drugs to treat it and doctors use drugs for other conditions that have beneficial side effects for Dysautonomia. There are established treatments for MG and it has a much longer history of research. Yet, these treatments for MG can come with serious side effects. My doctor explained that this is why he has been waiting to be absolutely certain before diagnosing me. I know that many have also heard this from their doctors. I have learned an important lesson about the stakes involved in diagnosis this year. 

The thymus can play a role in Myasthenia and about 15% of people require a thymectomy. The thymus can become enlarged or have tumors, either benign and rarely malignant, called "thymomas." Removal of the thymus offers the best chance of remission of symptoms compared to other treatments. I have even heard recently of doctors removing the thymus even if there aren’t any problems with it because that can be beneficial sometimes. Just a few days ago, I had a CT Scan of my thymus to see if it needs to be removed.

Yet, the fact that there is treatment provides hope, and hope is a treatment in itself.

Maybe you found this blog and this post when searching about MG, or POTS, or chronic illness, and information and knowledge is a vital step in learning about conditions you may have and all of us raising awareness about invisible and rarely diagnosed conditions. Yet, knowledge is only a piece of the puzzle.

When you get a diagnosis, arming yourself with knowledge is only half the battle. Something that I wish someone would’ve told me when this chronic illness journey began in 2011 is that acceptance is your greatest survival tool in your arsenal in living with illness. There will be self-blame, guilt, and profound disappointment, but acceptance can help you live a full life no matter what illness throws at you. Someone in the great circle of being pointed their finger and chose you as the lucky winner to bear this absurd burden. I try to remember this is not my fault. I didn’t choose this, but I accept this burden and seek to make a life bearing it with grace and dignity. These are hard-fought lessons I am continuing to learn and I think they deserve a place among the science and physical realities of any illness.

If you are out in social media, check out and participate in the hashtag #IhaveheardofMG, a movement to give MG more awareness and a face for the condition. 

I leave you with this great video from 1935 that shows the early days of the discovery of acetylcholine treatment for MG. Wait until the end when the woman begins to mop. Every time I attempt to do house work I think of the smile this woman has on her face because I couldn’t do it without that drug either. 

Also, check out the links section of the blog for more information about Myasthenia.