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.

The No-Win Scenarios of Illness

I’ve been thinking about no-win scenarios quite a bit over the last few years because illness is starting to feel like one. I’m starting to think that I am living in my very own Kobayashi Maru simulator.

*It’s going to get nerdy for a second* In the Star Trek universe, the Kobayashi Maru is a simulated test for Starfleet cadets. They are presented with a scenario that is rigged to cause destruction and loss of life no matter what choice is made, and the cadet's response to the test demonstrates their character and leadership skills. The conditions of the test ensure no can “win” it.

My last few appointments really solidified this for me.

Going to Stanford two weeks ago included a lovely stay at our favorite hotel in Palo Alto that was a serious splurge (but so worth it) and a very anti-climactic appointment. I had been waiting to see my neurologist for a year, and in that time I had to leave my dream job, stop driving, and I rarely leave my house. I went through more testing than I can remember in a year, on top of all the testing of the last 5 years. I had to start using a wheelchair, which I must say I’m finally getting pretty good at using. So much has changed. Appointments with him are usually about an hour, but I only got 20 minutes with him because he was running behind.

He explained that although the signs may point to Myasthenia Gravis, none of my test results can solidly confirm it, and he said we have to be absolutely sure because my treatment options going forward if that is the diagnosis “will not be good.” They can cause as much harm as they can help. Woo hoo! 

I have to do a CT scan of my thymus and then potentially have surgery to have it removed. Sometimes Myasthenia can be caused by an enlarged thymus or benign tumors on the thymus. A scan will show if it is causing trouble for me.

Other treatments for MG are immunosuppressants like Prednisone, which are known colloquially as “magic poison” for a reason, IVIG, or plasmapharesis. A constant dose of Prednisone can cause long-term damage and lead to other problems, but many people with autoimmune diseases rely on it. IVIG can also cause other problems. My new local neurologist who I saw last week explained all of these options are “multiple steps up from taking medication and dealing with side effects. We have to be sure.”

I already knew about these treatment options for some time. After I saw the note that said “serological Myasthenia Gravis” on my bloodwork a year ago, I have done a lot of research since then. I had never even heard of MG before that or even knew what a thymus was until a year ago. It’s amazing the things you learn through this process. 

I also learned that the medications I’ve been taking for MG and POTS contradict. I’ve been taking Mestinon for about 8 months, which is typically used to treat MG, and it has been a life saver.  It has made such a huge difference. However, it aggravates some of my POTS symptoms so I’ve had to take a minuscule dose and work my way up to a regular dose. The Florinef I’ve been on for 3 years is contraindicated for MG because it causes muscle weakness and is likely contributing to my breathing problems, which explains why I have never ever felt good on it. My attempts to get off of it have been unsuccessful but I have to keep trying.

I guess this is the thing with comorbidity: medicine is not an exact science and your conditions can conflict, each trying to prove their alpha status and dominance. So if I get the Myasthenia diagnosis I feel screwed with the treatment options. If I don’t, I continue to be exiled in the grey haze outside of the nirvana of diagnosable conditions, still waiting for a tangible label.

In the bigger picture, I’ve had to slowly accept that these conditions are likely lifelong and now it’s time to figure out what the way forward will look like.

It always feels like every ounce of progress that is made must come with some sort of setback or hardship, like the game is rigged for an unwinnable victory. Yet, I believe “defeat” and “success” are not absolute terms. They can be self-defined inside and outside of the parameters of this chronic illness game. I believe we are masters of our own destiny despite whatever external forces try to push and pull us from our trajectory. 

So if I really am in a Kobayashi Maru simulator, I need to figure out some cheat codes to either cope with these seemingly unwinnable scenarios or hope that someone accidentally steps over the plug and I go back to my normal life.

Stay with me on this metaphor. Recognizing that illness is like a no-win simulator is not a matter of resignation—it is a hail Mary, hard-fought, grit-filled realization that acceptance is the only way forward. It is the courage in realizing that you may not win the war but you won’t give up the battle, no matter how ugly it will get in the trenches. But it doesn’t have to be a no-win scenario. You have to find other ways to “win.”

You can change the game, change the rules, change perspective. Dig deep and find your inner James T. Kirk and change the conditions of the game and get away with it on pure charisma and bad-assery.

You have to find your own cheat codes. Even if we can’t rid our bodies of illness, we do have the power to change our perspectives. These are some “cheat codes” I’ve come up with, things I think of or try to remember while fighting what seems like a no-win battle.
*You can find a printable version here

     1.   In the dark depths of a bad day or a bad week(s), try to remember that they serve to punctuate the sweetness of the ok days and even the once in a blue moon great days

     2.   Remember what you do have control over in terms of your illness and your life, whether it be your diet, your routine, your exercise efforts, your attitude, your will to keep going, your passions

     3.  The hard times and dark periods are like battle medals: you fought hard to win them. You survived this long, so you can survive whatever may come

     4.   You can live in denial that leads to endless frustration, or you can live with acceptance and find a path forward for the best life possible. This one took me a long time to really learn

     5.   The past and future barely matter. The present is really the only reality that matters. Live the fullest life you can in just this moment. 

     6.   You are the ultimate decider when it comes to how you handle and treat your condition. I really believe that we still have choices, even when it comes to medical treatment. Your intuition is an asset. Hold onto your voice because you are not powerless

     7.    Even if you have a tenuous relationship with hope and you and hope part ways for a brief time, hope will always be there waiting for you to return when you need it most

     8.   You have a story to tell that matters. Never surrender it

     9.   You play this game long enough, you get even better at it

    10.  Success and victory can be self-defined. The conditions of the game may constantly change and continue to seem insurmountable, but you can adapt and “win” each day on your own terms

Bonus: Chocolate is a great listener 

Keep up the good fight no matter what obstacles are placed in front of you. Cheat if you have to. We got this.