Spinning my wheels with new medication

Following a difficult summer for me, I talked to my doctor about possible medication changes. She agreed and prescribed a slightly higher dosage of one I am already taking. I have written about how difficult the switch to this particular medication was for me, but once the switch was complete I definitely felt improvement. It is this medication that I will be increasing.

Except, of course, that nothing is that easy. My doctor, who sees me monthly, has decided to prescribe this to me. But my insurance, which is a big entity that doesn’t know me beyond the data points they have collected, is refusing to cover the increase in dosage. Without insurance this medication would be $521 for a month’s supply, so there is no way I can swing it. Fibromyalgia is not life-threatening, and there is no increase in my health that would make it worth it to sacrifice almost an entire paycheck to medication.

So now I wait. It has been over a week at this point. My wonderful doctor is advocating for me and trying to get the insurance to cover it. I don’t know what I would do if I didn’t have a robust care team. At the same time, my existing prescription runs out next week, and if this isn’t sorted out by then I’ll go through some unpleasant side effects due to withdrawals, making re-starting the medication harder on my body as well.

But such is the US medical system. Somehow a private company has a say in whether I get the care my doctor prescribed. The rationale they give is that this medication is not usually given at this frequency/dosage, but that just assumes all human bodies react the same way to illness and drugs. And while that may be true in certain circumstances, fibromyalgia definitely affects people in different ways. My body reacts to these drugs in different ways.

As an anthropologist, this also highlights to me the dangers of relying on just data points to make decisions about people. On paper, my doctor prescribing this dosage for me is outside the parameters of what “should” be done, and so it makes sense to decline the request. You plug in my diagnosis and you plug in the guidelines for the medication, and you arrive at a neat conclusion based on nothing more than that. But that does not take my individual experience into account, my year of trying another drug that did nothing to help my symptoms, my body’s strange and unexpected reactions to new drugs, the knowledge I have painfully gained that any change in dosage needs to be done gradually. This prescription is of an unusual dosage because my body behaves unusually. If I could exist as anything more than depersonalized data points to some distant corporation, maybe I wouldn’t be spinning my wheels, wondering when I will be able to try something to help my new symptoms.

I’ve had some advice on ways to speed up the process or get around the hefty price. That’s not the point though. I am already exhausted living my life, I don’t have the energy to call around asking for someone to please take pity on me so I can get the care my doctor says I need.

Reflections on accessibility

I have been in more pain over the last few days, and while I am grateful that this mini-flare seems not to be affecting me cognitively (because I am working on a manuscript while also starting my PhD fieldwork), the increased pain does cause some issues.

The first is that I absolutely cannot sit in an office chair for long periods of time. I do have an adjustable chair in my office as part of my ADA accommodations, and have invested in a fancy chair for my home office, but I simply cannot be spending hours just sitting. Powering through that pain makes it worse later. I tried today, and am currently curled up on the couch typing up this post on my phone. Yay technology.

This pain also makes using my fingers/wrists difficult. I’ve invested in an ergonomic mouse and so I can still get work done, but there are everyday things that I just cant really do anymore. Much like it takes a bad cold to make you realize how much you take regular nose breathing for granted, these things are so mundane that you wouldn’t really think about them – they are using chopsticks and shuffling cards. For some reason the minute movements needed to grasp at and manipulate chopsticks or decks of cards is just too painful to willingly do.

The solution to the first one is to use a fork instead, although that is a cultural faux pas that can be tough to navigate. I’ve seen the judgy stares from some people. I don’t care. Asian food is just as delicious with a fork. And I’d rather use a fork than try to power through and hurt myself.

For the second thing, it’s more complicated. Depending on who I am playing with, I can usually ask them to shuffle my cards for me. My wonderfully partner Marc, for instance, will always shuffle during my turn when we play cribbage together.

You can really only ask something like that from someone who you trust. I know that “I’m in too much pain to shuffle cards” sounds really strange, especially when there is nothing outwardly wrong with me. I don’t wear a splint on my wrist, nor am I in a cast. It’s called an invisible disability for a reason.

Marc also shuffles for me on the rare occasions we play Magic: The Gathering (MtG) together. This card-based game is complex and requires a fair amount of shuffling, which I simply cannot do. I recently (about 6 months ago) started playing MtG through Arena, MtG’s pretty online platform. Playing online has a few advantages for someone with my disabilities. First off, of course, no shuffling! But also, because it’s an online format, it’s easier to read all the card descriptions and figure out what cards I can play during my turn. Some of the nitty gritty is taken out so that I can focus on enjoying the gameplay without having to try to read my opponents cards upside down or do mental math.

When we talk of accessibility, we often think about going places or doing productive tasks. For me, especially over the past few days, I’ve had to try to make the enjoyable things in my life accessible to me.

The difference a good doctor makes

Read enough stories about fibromyalgia, and you’ll know that patients often face many obstacles to diagnosis. Some take years before a doctor takes them seriously enough not to dismiss their symptoms. This is because some doctors are not informed about fibromyalgia, sure, but also sometimes because doctors believe fibromyalgia isn’t real.

I have been very lucky to have an amazing doctor from the get-go. She and I get along wonderfully, and since I see her once a month that is NECESSARY (yes, I see her more often than some of my friends). She has always taken the time to listen to my concerns and explain to me her rationale for prescribing medication or suggesting visits to other specialists. She also still very much listens to me and how I think my body is reacting to medication. I still think of her as an authority, but she has really worked to make sure I have some sort of agency over my treatment as well.

Finding a good doctor can be hard work, but it makes ALL the difference. I have someone in my corner who can help me navigate my symptoms and keep encouraging me to make the changes that will make my life better, while also being realistic in what my life can be like with this condition.

Catching up by making the most of insomnia

My desk. I may be slightly unicorn obsessed.

This was my desk at 5:45 a.m. I’ve been up since 3 a.m. You can add “insomnia” to the list of side effects I started yesterday.

However, I only feel regular-sleep-deprived tired instead of fibro-fog tired, so I am using the opportunity to catch up on work I did not do this weekend with the help of my Chibi Star Trek cup filled with delicious Mauritian tea.

It’s not an ideal state of mind to delve into citizenship theory, but it’s better than nothing. I’ve learned to take the moments of clarity where I can find them.

Of blurry beginnings

Today, I can’t wear my glasses.

The pressure of the frames on my ears and my skull is too much, and so they are sitting on the desk in front of me. I am squinting hard at the computer screen to make out the words I am typing, as my eyesight is… not good. I need those glasses. Yet putting them on causes me so much pain that any tenuous thought I could otherwise grab on to just escapes me.
Hello, my name is Rachel and I have fibromyalgia. On good days it just feels like I didn’t sleep enough and maybe overdid it slightly at the gym. On bad days I can’t even think and the pain makes it impossible to move. Despite all this, I am determined to finish my Ph.D. in anthropology at Arizona State University while still maintaining a good life balance with my friends and significant other, Marc.
I will be using this blog to chronicle what it’s like as an academic with fibromyalgia. While academia is the primary focus of my life currently, fibromyalgia of course affects all aspects of my life, so this will be mirrored here as well.