Appointments, Pennies, and Water Skis on Fire

I've been meaning to discuss the last specialist appointments I had this year for awhile now. 2015 was another year on the Hamster Wheel of Diagnosis and I’m headed into year six running on that wheel. I feel like I’m closer to more answers now than I was a year ago for sure, or I’m just getting more comfortable in the grey area. Sometimes it’s hard to tell. I’m going to review a bit the results of those appointments so I can sort it out in my head.

I saw my neurologist at Stanford in early November and it had been about 6 months since I had seen him before that. When I saw him in May, that was probably the worst appointment I’ve ever had at Stanford. He was running behind that day, he gave me a very cursory exam (he didn’t even have me get on the table), he expressed his frustration with my test results and my “subjective” symptoms, and then rushed out 15 mins later. Seriously disappointing. The appointment was such a disappointment that I debated not going to my appointment in November. Going there is becoming more costly and more exhausting. We have to stay in a hotel now and decent hotels in that area don’t exist under $200 a night.

But if you want a diagnosis and treatment and to get off the Hamster Wheel someday, you have to play the game. So I went to this appointment, and I’m glad I did. This appointment was a significant improvement. He had recently lost his nurse he worked with for years (who I had built a good relationship with) and his new PA spent about an hour with us before he came in. I was pleasantly surprised that she had already read extensively about my health history before she came in and she listened patiently as my husband and I described my symptoms. She did a careful neurological exam.

In many ways, getting a neurological exam is similar to a sobriety test (I imagine since I’ve never done one. I’ve never even been drunk). They shine bright lights in your eyes, ask you to walk in a straight line, ask you to touch your nose with your eyes closed, stab your feet with sharp objects and check your nerves, etc. Maybe they don’t do the last one on a sobriety stop. It’s a long process and once my doctor came in we did most of the exam over again. The appointment lasted about 2 hours, which is the longest one I’ve ever had there. I finally got to show him the extent of my mobility issues, weakness, and that my right leg has lost most of its functionality.

They both acknowledged the extent of my mobility issues when I showed them and they said my exam findings matched my “subjective symptoms,” which was a nice turn around from the last appointment. In some ways, for what it’s worth, I felt vindicated.

The last few years I’ve been living with incredible frustration because I felt like my neurologist and some of my other doctors privileged all the inconclusive test results over my voice and my explanation of my own experience. I started to feel like I had no control over the narrative of my own body. I was no longer an authority on my own reality. The constant testing and inconclusive findings have been an impediment to treatment. When I saw him last month, he explained why he has been relying on test results and admitted that the test results would probably never be able to objectively describe my symptoms. I had planned on having a long talk with him at this appointment about the fallibility of test results and then he discussed it with me without me even needing to mention it. 

He said Myasthenia tests can’t find all the antibodies that would identify the disease. It’s rare to find a doctor who will admit to the fallibility of Western medicine in diagnosing and treating rare conditions, and I’m thankful that he finally had this discussion with me. I'm not sure I got an official Myasthenia diagnosis at this appointment, but all of my other doctors are using that assumption.

He also mentioned that my low copper is very troubling. I first saw him way back in 2012 and he tested my copper then and it has always been low, sometimes very very low. Since 2012, I’ve taken copper supplements every day, which you can’t even find in health stores. I have to purchase them online. My results are always low and while I was there, he tested my copper again. Despite upping my daily dosage of copper the last year, I’m still way under the normal range. 

He said that this acquired copper deficiency could be either at the root or at least a major factor in all of my symptoms and that copper deficiency is extremely rare. I kept thinking “Did we find The Cause? Did we finally find Sasquatch?” I guess we’ll have to see if that ultimately is The Cause. I have to see a GI specialist at Stanford to identify why my body won’t absorb copper, which annoyingly is essential for the nervous system to function. 

He noted that my nerves, which are usually less responsive in neurological tests, were hyper responsive this time. He said that should be the opposite with copper deficiency and in an off-hand comment said he would probably discuss me at a conference.  

I've finally leveled up to being a case study. I will be famous for all the wrong reasons.

My best friend Carrie Anne joked with me that at least my diamond and platinum levels are normal. Those would probably be more expensive to treat than copper. If only eating pennies would solve my problem.

Before I left, he set a plan in place for the next few months: see a GI specialist to finally get my copper levels within normal range (and discuss my other GI issues related to autonomic dysfunction), do another brain MRI, do another Single Fiber EMG, and then hopefully start an immunosuppressant and IVIG (standard treatments for Myasthenia that are also very risky). 

When I did a Single Fiber last year, it was the most unpleasant test I’ve ever done. They have to place long needles in your body (each one for 20-30 mins or so) while you flex slightly and move the needles around to get a reading from the muscle fibers. It’s a more sensitive version of a regular EMG and incredibly painful. I was convinced by the end of the test that they had sprained my ankle. Luckily, once all the needles were removed, I was ok. The test took about an hour or more, and when it was over I swore I would never do that again. I also have to stop taking Mestinon to do the test, which is the worst part since I’m dependent on it to breathe.

He is concerned my insurance won’t pay for IVIG unless I do another one. He joked with me that "doctors don't get to treat patients anymore. Insurance companies make all the decisions." Anyone in the trenches of Western medicine will know this to be true. Insurance companies increasingly come between doctors and patients, making the decisions and deciding our fate. Alas, I will enter the torture chamber for another Single Fiber again early next year. We’ll probably have to stay multiple nights because I will likely not be able to make the trip home after being stabbed while not being able to oxygenate properly. Should be a blast!

Some people go on vacations. I drive far away and pay a lot of money to get stabbed repeatedly. 

As we discussed the extent of my mobility issues, he said that neither POTS nor Myasthenia could explain the rapid loss of my mobility and that perhaps I have a “movement disorder as well.” I almost burst into tears at the moment. The prospect of having to get another diagnosis is too much. It’s only a possibility so right now I’m not thinking about it. I'm bookmarking that comment and putting at the back of my mind right now.

The trip to Stanford wiped me out more than any other trip we’ve ever taken there. That trip, which seems so simple, is getting more challenging. But I’ll keep powering through because that’s what I have to do. There’s a Mexican restaurant there that’s right next to our favorite hotel (when we can get a room) and they have the best tortilla soup I’ve ever had. That’s my happy place and motivation.

When I recited everything to my local neurologist who I saw two weeks later, he shook his head as he listened. He said there’s no way that I could have such a mix of incredibly rare conditions (POTS, Myasthenia, Copper deficiency, etc.). He is convinced that there’s a label that would explain everything. I’m sure there is. The problem is I’m not sure that label exists, as well as the diagnostic tools to explain that label as well. I’m starting to wonder if that label will not exist during my lifetime. When I got ill after turning 30, I had never expected to go full unicorn. I never meant to reach such levels of absurdity of being a special snowflake.

I had to get a new local neurologist this year and I really like this new doctor. After we discussed my symptoms and potential treatment plan, he joked with my husband and I about the most absurd new ICD-10 codes used to label medical conditions that went into effect this year, including “Struck by an Orca.” We left the appointment laughing. I found a website where you can buy a book with some of the most hilarious ICD-10 codes in illustrated form. For the spoonies and medical professionals out there, it’d be a great gift. 

Here are a few:

Yes. There's a separate code for the second encounter

How unfortunate does one have to be to quality for this one?

Who hasn't been hurt by falling books or pulling a muscle from focusing too hard while reading at the library?

After my appointment with my local neurologist, I saw my pulmonologist and got to tell her about my summer of desperately seeking oxygenation. July-September I was barely able to breathe and had to use my rescue inhaler (on top of my steroid inhaler I use every day) constantly. Thankfully by the end of October, I’ve been breathing better consistently but still using my rescue inhaler essentially every day. She thinks that when I finally do start immune therapy, I will likely start breathing better since Myasthenia is the culprit. I have to do another pulmonary function test again next year as well, which is also incredibly unpleasant. Husband will at least get to have a good laugh again as I huff out my lungs in a space machine.

So early 2016 is shaping up to be blast with the Single Fiber, another pulmonary function test, and MRI. Let’s throw another Tilt Table Test in just for fun!

Along with other appointments, November wiped me out and I’m still recovering. I’ve had a month now of severe weakness and paralysis from the Myasthenia and had to stop exercising for a time because using the muscles only makes the paralysis worse and then I can’t get around my house. But last week I started being able to go on my very short walks with my trekking poles again and exercising a little.

It seems like every 2-3 months, I have a very bad patch where the weakness and paralysis is so bad that I’m bedridden and can barely move. My last one was in August, so I guess I was due. This time around I tried to be smarter. Usually when it sets in, I start pushing my body even harder to move, which only makes it worse and then I struggle to do important things like brush my hair or bathe. This time I let Myasthenia win for a bit and tried not to push my body (at least not very much) and I wasn’t bedridden much through this one.

It disturbs me this patch has lasted over a month, the longest by far. I’m always afraid that these patches will continue to get longer and I’ll have to start using my wheelchair to get around my house. I’m holding fast to the mobility that I still have. I need a wheelchair most of the time when I leave the house but I can still get around my house without aid much of the time. I want it to at least stay that way. 

Despite the rough patch, I’ve played at the assisted care facility where my lived twice now. Even with the weakness in my upper body, I can usually get my arms and hands to function enough to play. I made it to my husband’s birthday gathering and although I made the huge mistake of not taking breaks during the party, we had a great time. I did some artwork as a gift for a friend. Not bad for being a weak, hot mess.

My BFF and sister in music Melynda and I playing at the care facility for the residents

I’m looking forward to the holiday gatherings the rest of the year.

I canceled almost every appointment this month to conserve energy because being able to participate and see my friends and family this time of year is more important than being on the Hamster Wheel of Diagnosis right now. The Wheel will be waiting for me in January and I’ll begrudgingly get back on, but right now I’m trying to have a life. Or at least pretend for just this brief moment in time.

Right now, that’s enough for me.  

I’m thankful to have the team of doctors I have now. It took a long time, but I found a good team. I had a lot of appointments this year but I was lucky I only did a few tests over the year. I had a long stretch where I didn’t have any appointments, and it was right when my mom was declining, which made dealing with that easier. Fate was looking out for me then.

I’m feeling hopeful that in 2016 I could start a new treatment plan. If I’m doing better, maybe I can get some of my independence back, start driving again, and start thinking beyond that (like working or volunteering). I don’t want to get too far ahead of myself, but I am hopeful. Getting some of my independence back and playing music again are my ultimate goals. 

In many ways, I feel like despite my limitations I need to try to live the fullest life possible not just for myself but for my mother as well—for the life she was denied the last few years. Sometimes, hope is the only thing that is tangible in an uncertain future. In the meantime, as I make the most of life right now and wish for a better tomorrow, that’s what I’m holding fast to. 

My wish for myself, for you, for all of us in the coming year is health, happiness, and continuing to avoid injury by flaming water skis or orca attacks. We deserve that much at least. 

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. 

One More Test

I’ve been dreaming about quitting my day job as a disabled couch barnacle to be a more productive member of society again, go back to teaching or become an archaeologist, a scientist, or a jazz vibraphonist. Or all of the above.

But in the meantime, I’ve still got work to do. I’ve been writing about the saga of getting a firm diagnosis for likely Myasthenia Gravis for some time now and mentioned that I had another test last month at Stanford.

I had hoped to come home maybe with something definitive. A label to provide a tangible explanation.

But it didn’t happen.

I haven’t written about it because I needed to try to get my brain around it, try to logically work through the anger and frustration, so that I don't unleash it into the world. No one needs to see that. I was in a dark place last month and the holidays weren’t the real reason I took some time off from writing. I was seriously depressed. I’m doing a little better now but it waxes and wanes. It’s something I’ve battled my whole life and this strange ride through illness really amplifies it. Not even all the chocolate in the world can pull me out of it, but a little doesn’t hurt.

My husband and I made the long trek to Stanford so that I could do a Single Fiber EMG, an EMG that is specific to MG diagnosis. It wasn’t the test that disturbed me (more giant needles. Been there done that. Whatev). My doctor said that I couldn’t take Mestinon for 24 hours. I’ve mentioned before that I’ve been having a lot of difficulty with breathing, a common symptom of MG. More than anything, the Mestinon is helping this symptom. I’ve grown fond of breathing. I’m accustomed to it now. Please don’t take it away.

I had already cancelled this test once. It had to happen. I booked us a hotel for multiple days. I can no longer make the trip to Stanford in one day. The hospital is only about 2 hours away, but with Bay Area traffic, we often spend 6-7 hours in the car. Along with a few hours for an appointment, it’s just way too much for me now. Sadly, my body requires that I treat it like the delicate flower that it is. I needed extra days this time so I didn’t have to travel while coming off the Mestinon. I bought some oxygen designed for athletes. I packed some books, some movies, my shower chair, my wheelchair, and we said goodbye to our cats and headed out.

My husband is a master organizer and packer. All those years paying Tetris really paid off for him

I splurged a little on the hotel since we had to stay there a few days, and it was worth it. It was an adorable little hotel and each room had it’s own enclosed patio. They even gave us the handicapped room, though I think the only difference was that it had a shower chair. We ate over-priced, underwhelming take out, re-watched The Lord of the Rings, my husband slept all day, and as the Mestinon wore off, the breathing difficulty and weakness intensified. Yet, I didn’t have to do anything but sit in that hotel room, read, and hydrate. It wasn’t a vacation but it was definitely ideal.

On the day of test, I put on my finery (workout pants and a loose fitting sweater) and we headed to Stanford.

They called me in and told me to lie on the table. I had flashbacks to exactly a year earlier when I did autonomic testing and a regular EMG in the same room. I thought that EMG was a breeze. They warned me that this one would be more painful and take much longer. They weren’t kidding. The needle had to be placed deep in the muscle and held for 20-30 minutes for each reading. I had to slightly flex my ankle or leg so they could get a reading of how the muscle was responding. By the end, I was convinced I had sprained my ankle. Once they removed the needle, it snapped back. It was fine.

They told me to dress this way so I couldn't get my #hospitalglam on unfortunately

My doctor oversaw the test but it was a different doctor I had never met before who performed it. My doctor came in periodically, making jokes and being jovial as usual. When they finally finished, he read the results. “Slightly delayed but normal.”

 Everyone in the room turned to me and said “Aren’t you relieved?”

I was not. No. I was not. It didn’t matter what the results were. There’s no way that I can accept losing most of my mobility rapidly over a year as “normal.” Or waking up repeatedly in the middle of the night because I’m not breathing as “normal.” What I’m living is anything but “normal.”

Honestly, I wanted to scream. I had made a detailed list of my symptoms before the test since I hadn’t been able to talk to this doctor since May. I wanted to tell him about how much I have declined since then. How I can barely leave my couch or bed. I just wanted to be heard.

Someone in the background said “your next patient is here.” They wrapped everything up and my doctor started leaving. I asked him to wait and tried desperately to compose myself. I was angry and frustrated. I hadn’t gotten a chance to say anything. All those notes I made and I had to try to quickly condense it into a few seconds.

I work hard to maintain a calm, collected exterior in appointments and tests. This is important so you can communicate and to avoid that pesky label of being “overly-anxious.” I lost my cool. When my doctor looked at me, he must have seen it because he asked me, “are you going to punch me?”

I tried to explain the symptoms I was experiencing and my confusion. I had tested positive for the antibodies for Myasthenia (which aren't a false positive for anything else), I had the symptoms, and they were already treating me successfully for it. If it looks like a duck, quacks like a duck, isn’t it a duck? He explained he was hesitant to provide that diagnosis right now. He doesn’t want me to have to start taking a long-term steroid. I understand this, but I don’t understand why we can’t just put aside the song and dance and just finally label the darn thing. 

He said we should do the antibody test again and perhaps the results of that would change the diagnosis and mentioned I should do pulmonary function testing. The results of my antibody test showed that they have doubled. I should probably contact him to ask about it, but I haven’t. 

I knew better than to have such high expectations for one test. This was one test in years of endless testing. I forgot that this is a process. There are often no delineating lines between symptoms, testing, diagnosis, treatment. They overlap and intersect. But this one time, I just wanted something solid. Just this one time. For once.

I was in bad shape at the end of the test. I was off my medication for over 30 hours, had just been tortured, and was exhausted. Yet, I still deeply regret losing my cool. Often when you are doing testing and even during appointments sometimes, you are just a body in a room. Doctors talk about your body to each other in front of you. Motion to your presence. You sit there silently trying to absorb the medical babble to listen for something familiar or understandable. The process can be incredibly dehumanizing.

I don’t regret trying to make my voice heard. The physical and financial costs for me to get to that table were significant for my husband and I. I don’t get to see this doctor again until May. I can’t keep waiting. I can’t keep suffering with no answers and no response. I wanted to be heard. I wanted to maintain my humanity and give voice to the experience of this body.

Another disappointing test. I cried most of the way home. My husband keeps asking “why does a diagnose matter so much?” I wrote a post about it here, but there’s more. There’s something very material about a diagnosis that counterbalances the nebulous, invisible experience of illness. It’s an explanation, a satisfying answer for my broken body and spirit. It isn’t the end game, but it’s a means to move onto the next stage in the journey, open possibilities for treatment, and I could finally put the label on documentation.

So I came home and went back to my job being a couch barnacle. Maybe I’ll make employee of the month soon. I'm still waiting and waiting for some answer. Still dreaming and fighting for a better tomorrow still.

Next week I have another test, pulmonary functioning test. I hope that I can finally have some proof for my breathing difficulties, but I’m not holding my breath (see what I did there). One more test. Not the last surely. Not the end of this journey, with miles to go before I sleep.