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 Next Round

It’s been a relatively quiet April on the health front, which I am so grateful for. I still had appointments almost every week but they were not necessarily related to diagnosis and treatment. I needed that break, and the universe gave me a win. I’m still filled with frustration about test results, the struggle to get a diagnosis, and the daily battle of managing a nebulous condition, but I’ve been able try to get to a better place this month, reorienting myself into a life that isn’t completely defined by being ill. Listening to the suffering and experience of others, trying to understand the historical civil unrest in my country, helping my family when I can, reading about prehistory, analyzing every detail of the results of the ancestry tests my husband and I did.  

But it's time to re-focus. I start the next round of appointments next week. I see my new local neurologist in two weeks, and I have an appointment Stanford on Tuesday and will finally see my neurologist there.

I’ve had that appointment for almost a year. I saw him last May, which feels like a lifetime ago. I had just finished my first year as a full time professor and it was the most brutal semester I’ve ever been through. I had to go on leave twice during the semester and my symptoms were worsening every day. I wasn’t using a wheelchair yet, but I needed to. I was struggling to drive and my independence was starting to slip away. 

I’m trying not to let the ghosts of that last appointment haunt this one. I left feeling like it was a great appointment but when I read his notes he mentioned that he discerned no walking difficulty and that I needed a “more positive outlook.”

I cried a little during that appointment. Life was pretty bleak at that moment. I didn’t get to say goodbye to some of my classes (again) because I was on leave, in my heart I knew that I was going to have to either radically change how I did my job or it was over, and the mysterious symptoms were only getting worse. Of course I was upset. I try to smile and keep a calm demeanor in appointments, otherwise you end up with notes about mental health and stress if your file, further invalidation. But I’m honestly getting to the point that I don’t care what they say. 

I spent a lot of years trying to justify and explain in appointments to get them to hear me. At this point, I don’t have the energy for that. Now I just try to present my symptoms and experiences and communicate effectively. These are my symptoms. Take it or leave it.

At that appointment a year ago, he explained that my mystery symptoms of weakness, difficulty walking, difficulty breathing, etc were not related to POTS. I had those symptoms for over a year at that point but I was still hoping they were related to POTS so I didn't have to get back on the hamster wheel of diagnosis. He gave me a list of tests he wanted me to do, and as I listened I knew those tests would take a very long time and that a diagnosis was at least a year off. At least. 

I started suddenly having mobility problems about two years ago and I told my primary doctor about it first. He took me seriously and said it was likely something else presenting itself. I refused to believe that at the time but I have told him since then that he was totally right. He figured that out before any other specialist. I really need to send him a fruit basket someday.

I saw him yesterday so that he could fill out my long term disability paperwork, and every time he sees me he asks, “did you finally get a diagnosis?” Nope. Together, we have been fine tuning innovative ways over the last few months to explain and label my symptoms for these forms without using a label that is unofficial, to the point that it becomes a humorous art. You have to laugh at the absurdity of it sometimes.

I don’t want to set myself up for disappointment, but I am hoping to finally get that label in these next appointments. Not just for the peace of mind but mainly because of the material benefits it offers: I could finally put it on my official paperwork, I can wave it in front of insurance companies who want to refuse treatment or deny benefits, and I can have access to other treatments options. If it is Myasthenia Gravis, I'll have a condition that sounds like a Harry Potter spell, so I'll feel pretty special.

I try to remember that a diagnosis is not the end game, a better quality of life is. But I can’t help wanting the diagnosis. It’s been the carrot I hold in front of myself as I’ve gone through all the torture testing for years. Yet, even with a diagnosis I know that my life wouldn’t change dramatically, but damn it would help. 

I’m doing my usual routine of carefully writing out symptoms, notes, and questions, and gathering test results to bring. Most of this has become second nature for me and my husband so it makes it easier to keep going, even when both of us are completely worn down by this process. We are staying in our favorite hotel again next week before my appointment. It’s pricey but I’m very much looking forward to that part. Sometimes it takes little things like this to make it easier, little rewards and treats along the way to make it a little more fun and enjoyable.

So this is what it looks like when you want to give up on this process but you continue to press on, trying to keep a “positive outlook,” keep digging deep for whatever pieces of hope you can find, and remember that you’ve come this far so you can keep beating on. It’s not easy, but it’s not impossible. That’s important to remember.

Whatever the results of the next appointments are, I’ll come home to my life with my cats, my husband, my music, my books, and it will be all good. I'm trying to remember that life will go on no matter what. I’ll keep working toward my goals, trying to create some art and music, write some words that have meaning, exercise as often as possible, and continue to feel grateful for this life and how lucky I really am. 

Absurdities

This blog is an exercise in honesty and exposing the often invisible battles of the chronically ill. This is the truth. I am digging deep into my reserves of perseverance right now and keeping a stranglehold on hope. I am living a life much less vertical these days. I rarely am able to leave the house, so I’m feeling less of a member of the daylight experience. I’m considering only dressing in black and really committing to this vampire lifestyle.

The weight of the world is heavy on my shoulders. There are some intense family issues going on. Not only am I not able to work, doing basic things like showering, preparing meals for myself, driving is getting harder. Leaving the house requires using the wheelchair. I've lost my independence, but I'm working on adjusting to this new normal. I keep thinking “I’m 34 years old. This can’t be it. This won't be it” 

I’m trying to focus on the present because that’s easier. I am living authentically still and learning how to not fight my illness so hard, but it feels sometimes that I have relinquished even the illusion of control over my life to this illness. It will take time to adapt. Luckily, time is what I have right now.

Life is filled with an endless string of absurdities. I like to get lost in the abstraction of it sometimes. One way I’ve learned to cope with all of this is to focus on the nonsensical nature of being, and living with illness turns the absurdity up to eleven. This helps relieve some of the heavy weight off my shoulders if I can laugh about it or see it objectively as a ridiculous charade. 

Here are some recent absurdities: 

  
--- My husband and I have gone to Stanford so many times this year, we’ve joked we should get an apartment in Palo Alto (except we aren’t exorbitantly wealthy enough for that). So I sent a message to my local neurologist to see if she could do one of the tests they asked me to do at Stanford nearby. Instead of giving me a yes or no response, my doctor’s nurse turned a simple communication into an impossible riddle. It was like communicating with the Mad Hatter. I even had my primary doctor intervene to no avail. I asked that question over and over and could not get an answer. So I gave up. I’m making the long trek to Stanford to do the test. Forget it.   

I then tried to make an appointment with that same doctor and I made the dumb mistake of mentioning I may have a new diagnosis to that nurse. The nurse told me “if you have a new diagnosis, you can’t get an appointment without a new referral.” I’ve been seeing this doctor for eight years, and I need a new referral? I've been doing this long enough to know that this not how the referral process works. Ridiculous obstacles and incompetence like this explains why the average time to diagnosis for the chronically ill is six years. 

I was already thinking about breaking up with this doctor, and this sealed the deal. I don’t have the energy to fight obstacles I shouldn’t have to fight and this nurse has been a huge obstacle. When I do finally get a new doctor, I will write a letter explaining how much extra stress that nurse has caused and why I had to move on. I want to tell my doctor “It isn’t you. It isn’t me. It’s your impossible nurse.”

 

  

Finding a new doctor is hard. I'd compare it to dating because the goal is to find a doctor you can be with long-term. You need compatibility and shared goals, so I don’t want to make the wrong choice. Divorcing a doctor is messy, complicated business. We need something like a dating website for patients and doctors. I want to plug in what I’m looking for in a doctor and a website will connect me with a doctor who has similar interests and who has heard of my bizarre conditions. We could talk online and exchange pics and then decide to meet in person. The first question I’ll ask: can your nurse answer basic yes or no questions?

Hey girl, I even know what POTS stands for

 ---I'm having a hard time getting around my house, even with my cane sometimes. If we have the ingenuity to identify the Higgs boson particle, I think we could start creating teleportation technology. That would make getting around easier. Imagine what it could do for traffic congestion.

--- I mentioned in my last post that I am going to Stanford next week for another test to perhaps get a confirmation of Myasthenia Gravis. I am not sure what's been more difficult: getting the initial diagnosis for POTS or getting this differential diagnosis. I will hopefully leave that day with some answers and maybe even a diagnosis. My husband and I are preparing for this appointment. If you are young, female, and fabulously ill, I recommend taking someone with you who can confirm the accuracy of your explanation of symptoms. I’m using a wheelchair, having difficulty talking and breathing at the same time (totally overrated anyways), and working hard to maintain enough functionality to not be constantly bed-ridden, but I have still been met with skepticism. I have only seen this doctor twice in two years, so I’m trying not to take it personally. 

When I saw this doctor in May, I was in really bad shape. I was in my second leave of absence that semester. I missed the end of the semester and didn’t get to say goodbye to my students. I was bed-ridden most of the time and devastated that I could not succeed at life let alone succeed at my dream job. I left there thinking it was a good appointment. A few weeks later, I read his notes and at the end he wrote “patient needs a more positive outlook.” Absurd. I’ll never forget those words because they undermined how hard I work every day to maintain my health and hold onto hope.

I’m not worried about the test; I’m worried about what my doctor will say and whether I’ll be able to keep it together. I have learned the hard way: there’s no crying in baseball and there’s no crying in appointments. Keep it together because any emotional response could lead to invalidation. All I want is to leave there with some answers. After all this time, I just want something tangible I can hold onto that explains this chaos.

If it really is Myasthenia Gravis, another very rare illness, I should probably start playing the lottery if I'm this good at ridiculous odds.

--- Halloween was just a few days ago, but I’m probably going to get my Christmas tree up this week. Surrounding myself in glitter and twinkly lights makes everything better. I like to celebrate glitter year-round. I don’t think that’s absurd at all.

 

I hope you have a tactic you use to navigate life’s struggles. Stepping back from the madness of life to appreciate the absurdity of it all gets me through sometimes.