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. 

Let's Talk About that Kylie Jenner Image

I want to respond to something that happened this week that I'm still trying to make sense of.

Perhaps you have seen that image above of Kylie Jenner in a wheelchair on the cover of Interview Magazine and heard about the backlash from it. I’m sure like many of you, if I see anyone from the Kardashian clan mentioned in an article I ignore it. I’m convinced every time someone clicks on a Kim Kardashian article, an angel loses its wings. 

Yet, this image irked me. Most people are blaming Kylie, but I honestly doubt she made any conscious choices besides agreeing to pose for the images for profit. It was the choice of those involved at the magazine to use a wheelchair as a prop. She was literally along for the ride. As the backlash to the image began, it’s a comment from a representative from the magazine that irked me the most:

"At Interview, we are proud of our tradition of working with great artists and empowering them to realize their distinct and often bold visions. The Kylie Jenner cover by Steven Klein, which references the British artist Allen Jones, is a part of this tradition, placing Kylie in a variety of positions of power and control and exploring her image as an object of vast media scrutiny." 

I’ve been trying to formulate why exactly this image and comment are so problematic and I want to be able to communicate this from my standpoint as a disabled woman.

The problem is the choice to use a wheelchair as a prop to highlight Kylie’s supposed vulnerability because of media scrutiny fetishizes societal views of the “powerlessness” of the disabled. The “media scrutiny” has been incredibly profitable for her and is being falsely correlated to the experience of the disabled here. This is essentially disability tourism, trying to inhabit a marginalized position without the physical or cultural realities the disabled experience, such as navigating a world that is not designed for us. The editorial staff can delude themselves that they are making a political statement or high art. But we have to call it what it is: distasteful and offensive.

Disability, like other facets of identity, is a label externally and legally defined by society and not one that is chosen.  It is a label that can come with a certain level of marginalization, and like many externally-defined labels, stereotyping. The stereotype of the “restriction” and “powerlessness” of disability is fetishized and even parodied in this image. This parody silences the truth that a wheelchair is a tool for the disabled that enables freedom, access, and independence.

The ADA just celebrated its 25^th anniversary and the disabled are a protected class of citizens, but this was not always the case. It’s important to remember this. Yet, the disabled continue to face hurdles with full employment and participation in society. I mentioned in another post the limitations of the ADA and that the disabled continue to deal with limited accessibility in public and private spaces. These are some of the material realities that are invisible in this image.

The disabled are often treated as invisible in society. If you look at media, you will see very limited representations of the disabled and often you will see disability given a negative connotation—it’s treated as some sort of obstacle to “overcome,” a physical vulnerability, or a reason for pity or empathy. Disability is also often defined rigidly as a physical manifestation that is visible to the able-bodied, as if every disability could be “read” at a glance. Disability is not defined by using a wheelchair. Disability comes in a variety of forms and most of them are invisible. 

It’s not the fetishization that makes this image so disturbing for me. It’s the perpetuation of the invisibility and silence of the disabled community. I look at this image and see myself and others represented by that wheelchair and I am represented as a prop. A costume choice. A fashion statement. My experience is not just objectified; it is rendered silent. 

Ironically, though the intention was to make Kylie the subject of this image, the wheelchair has become the subject.

Kylie has never experienced being disabled or dealt with painful scrutiny or pressure to conform to societal expectations about what disability “looks like.” I have lived as able-bodied and disabled now so I have experienced both worlds. We need more voices from the disabled to challenge rigid definitions of disability, to express the experience of being disabled and the struggles and triumphs that come with that label, and more importantly, to show that the disabled are three-dimensional human beings. 

Often injustice comes in the form of a thousand cuts, a thousand slights that slice deeper and deeper into our sense of worth, leaving unseen scars that are continually re-opened. I have experienced derision because of my illness and disability and in the health communities I’m in people share the derision they experience daily. Since becoming ill and disabled, I am witness to injustice every day in some form beyond my own personal experience. Starting this blog is a way for me to give voice to the experiences I’ve seen discussed every day.

I’ve been asked “do you really need to use that cane?” I’ve had medical professionals ask in an accusatory tone “why are you in a wheelchair?” I’ve heard comments about being “too young” to rely on mobility aids. But worst of all, when I’m in my wheelchair and I’m with my husband, I often unwillingly become invisible. People often look through me and speak only to him.

I guess in some ways I’m “lucky” I never had a note left on my car when I have used disabled parking spots because I had to start using a mobility aid right after I got my disabled pass. My disability is “visible” to those who feel they are entitled to “proof” I suppose. I see people post pictures of the notes left on their cars often. I see comments constantly about people putting off getting a disabled placard even though they need one. I did as well.

I resisted using mobility aids because it forced me to “come out” with my illness. I desperately wanted to “pass” and I was able to for some time. If you can “pass,” you can be free of this derision, or the prying questions, or the constant staring. I put myself in constant precarious situations when I was trying to pass and forced myself to do things I physically could not do, ultimately making myself worse in the end.

It wasn’t worth it.

I’ve only recently began to get comfortable with the label of being “disabled” and what comes with that label. I didn’t choose this label. It chose me. My self-image has been radically transformed and how others view me and treat me in the world has also changed. It’s been a tremendous hurdle adjusting to this, but I’m getting there.

I put using off a wheelchair for a long time, even after my doctor gave me a prescription for one and my husband insisted that I needed to finally accept that I needed one. Once I finally started using a wheelchair, I realized I had so much freedom. I could go somewhere without having to immediately find a chair. I could navigate stores again. I could leave the house with more success. I didn’t have to count the steps from my car to a door to try to figure out if I could make it. This sense of freedom negated the comments and the staring. They just don’t really get under my skin anymore. I don’t have to “prove” anything to anyone. I’m just living my life and doing what I have to do to live it the best I can. All that time I put off using a wheelchair was wasted time.

My wheelchair gives me power. This is something that the editorial staff at Interview Magazine or people who question my need for mobility aids don’t understand. Fetishizing societal views of the “powerlessness” of the disabled perpetuates a one-dimensional stereotype of the disabled. The gilded wheelchair used as a prop is a perfect metaphor for the vacuity of the stereotype they are peddling in the image.

The voices of the disabled responding to this image or any issue related to disability should be privileged and heard to challenge the silence perpetuated in this image. This image represents one of the thousand tiny cuts of injustice and though it may be a minor cut, it deserves analysis to avoid more cuts in the future.

You can read more articles commenting on the disabled view of this image here, here, and here