Thursday, May 28, 2015

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. 

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  1. Hi Stefanie! Just want to thank you for your posts and your wisdom. I also deal with POTS and I have autonomic neuropathy of an unknown origin. One thing I think of, especially when my hope is hanging by a thread, is "This has been a fascinating ride so far. I need to stick around to see the ending to this tumultuous tale!" :). One thing holds true for sure and that is that we are not alone. Thank goodness for the Internet! When used properly, it can link us all together. Anyway, thank you again. We also share song writing too! S

    1. Hi Shauna. Thanks for reading! I love the idea that this is a "ride" or a story to follow until the end. Great analogy :)


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