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.

Mental health, grad school, and fibromyalgia

It is no secret that grad school takes a toll on grad students. Study after study show that students in graduate program have an increase in mental health issues, depression, anxiety, and feelings of isolation. A big culprit in all of these is how we, as students, are constantly pushed into having to do “more.” More research, more publishing, more service – and more writing. “You should be writing” is ubiquitous when it comes to academic memes.

Picture from Shit Academics Say

Having a chronic illness also comes with a toll on mental health. The biggest for me has been to remember what I was like before fibromyalgia showed up. I used to be able to go on runs, to have all-day reading marathons, to write out a seven-page reading response in a couple of hours before heading out to be social. No more. Everything has to be meticulously planned with rest days and contingency plans.

Therefore, this summer has been very rough on me. Having advanced to PhD candidacy (basically, all I have to do now is write my dissertation) I feel the need to work as hard as I can to collect more data. Unfortunately this has coincided with a worsening of my fibromyalgia condition. I have been in and out of flares of various intensities, my focus basically shot, managing to do the bare minimum for my work responsibilities but feeling like I am getting nowhere. This is also why I put this blog on the back burner. As much as I enjoy sharing my experiences, I have to prioritize my job, my research, and my social life.

Of course, once I write out all that I’ve managed to do this summer, I’m doing fine. Meeting with my PhD committee this week has also confirmed that I am doing fine. I am on the right track. However, my brain is still telling me I should be doing more. This constant tension between what I think I should be doing and the knowledge of my limitations is a huge downer. Focusing on the positives only works so far – at the end of the day I still have a lot of limitations to work around, and that is exhausting. But I keep on keeping on. This semester I have a plan to get more writing done, as well as a couple of conferences to network and share my research. I am cautiously optimistic that I can navigate the ups and downs of fibro and stick to my timeline of defending my dissertation in the Spring of 2021!

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.

Victory! Officially advanced to candidacy

I’ve been quiet on the blog front lately because I was working on passing my oral comprehensive exam (that is, my prospectus defense). Big presentations are stressful in their own right, and of course stress ends up triggering some fibromyalgia symptoms. For me, it was the fatigue and brain fog, the exact symptoms you don’t want for a presentation. Thankfully I had prepared enough that I went on auto pilot and delivered a good presentation.

I feel very lucky to have mentors who have helped me tailor my dissertation research to something I can manage given my physical limits. I went through a dark period where I felt I could not complete my PhD so it is gratifying to have come this far!

Choosing to disclose

Toward the beginning of this blogging journey, I wrote a post about nailing an interview for an internship (and how that was the only thing I could stand to do that day). I am now around halfway through the internship, and throughout this time I have struggled over whether to disclose that I have fibromyalgia.

There are many considerations over whether to do it or not. They are, in no particular order:

  • I am only at this internship for 16 weeks, and only work there 10h/week
  • I can’t think of what accommodations they could give me to make my work easier
  • I don’t want to come across as though I am attention-seeking or seeking sympathy or special treatment
  • I am already exhausted thinking about having to explain to them what fibromyalgia is and how it affects me and my working abilities

On the other hand, telling them might provide some context as to why sometimes at the end of the day I am almost unable to hold a conversation (because my brain is foggy) and why I take many very short walking breaks (because I am in pain from sitting too long in the chairs they have).

I am leaning toward not disclosing in this situation, but I have similar thoughts when trying to figure out whether it is appropriate to disclose my disability in other situations. Do I need to mention it on job applications? What about academic conferences? Sometimes I need to walk with a cane because my hips are agony, and sometimes I am fine — do I disclose and then use accommodations I don’t need, and then am I stuck in having to “perform” a disability I don’t have? Do I not disclose and potentially needlessly suffer?

It was a straightforward decision with members of my PhD committee and with my work supervisors. I am around this group of people long-term so it makes sense to let them know how fibromyalgia affects my work, and to request workable accommodations from my job. But more the shorter-term things, I usually don’t have the emotional energy to advocate for myself. It doesn’t feel like a good trade-off if it’s only for a short while.

Thinking of my future self as sick

At this point, I am very good at understanding where my energy levels are at and at not overdoing work… in the present. I am not so good at remembering that in the future, I will still be sick. And that’s a problem because a lot of academic work involves looking far into the future.

For instance, call for abstracts for conferences go out months in advance. I need to attend conferences, so I submit something, but months later when it is time for the conference, I could be in the middle of a flare.

Or, a call for book reviewers goes out, and I indicate my interest, and by the time I receive the book and have to write the review, I have three other things going on (since I still work, and am still a PhD student) and, you’ve guessed it, a fibro flare.

This is where I am currently. In March I have two conferences and a research trip, and a book review to get out before then. I also have to work on the brunt of my PhD proposal before March, because I need to schedule my defense before the end of March (!) and I will be traveling so much.

I’m not sure how so many things suddenly piled up in this one month, and I think it is because while I can see myself, in the present, as chronically ill, I can’t do that for the future. I can try to manage my workload, but fibromyalgia is always going to throw a wrench in the plans. I haven’t quite figured out how to do this. I can’t really RSVP to a conference with a “depending on whether I am flaring” condition.

Surgery and fibromyalgia

There are many problems with having a chronic pain condition. The first one is that it’s hard to differentiate between regular pain and fibro pain. The second is that usual guidelines for things like recovery times are not written with you in mind.

On January 24 I had my first ever surgery to remove all four of my wisdom teeth. I was finally in a place where I could afford to see the dentist, and had known my wisdom teeth needed to come out for a while. I sought out a practice that was done for valuing patient comfort, and even though I was told my surgery would not be straightforward given the growth and position of my wisdom teeth, the dentist assured me that he was absolutely confident he could get it done and everything would be fine.

They told me patients usually can get back to work after three days, and let me tell you right now that if you have fibromyalgia, “usually” doesn’t apply to you. After a year of living with this diagnosis I was pretty confident that I would need more than just three days to recover. I talked to my doctor who confirmed that I should count on at least a week.

It was frustrating to have to try and plan my busy grad school life around a one week recovery, and I could only manage four days and then a day of working from home. What was more frustrating, though, were the myriad well-intentioned people who assured me that I would be back to normal within a few days. Drawing upon their own experiences, they knew that they hadn’t been out of commission for that long, so I shouldn’t be either. It was meant to be reassuring but it also made me angry. Assuming that my disabled body reacts the same way as your abled body just ends up putting a lot of pressure on me . Will you think I’m lazy, lying or not trying hard enough if I end up needing more time to recover?

The week following my surgery was very uncomfortable, sometimes spiking up into the agonizing… and I could not tell whether that was normal or not. Were people who had four teeth cut out of their gums (including sutures) supposed to be in this kind of pain, or was this fibromyalgia making the pain worse, or was the pain a symptom of something going terribly wrong? Did I have a dry socket necessitating a trip to the dentist for relief, or was this normal remodeling of the mouth, or was it just my body going haywire at the trauma and sending me into a severe flare?

It turned out that my healing was spectacular, to the point where the dentist appeared a little impressed at how good the incision sites looked. I told him I had been “in some bad pain” for a few days and he gently dismissed it as normal since the mouth was recovering. I don’t think he quite understood the kind of pain I was talking about, and I didn’t really see the point in explaining.

It has been 11 days since the surgery and I am still recovering. As I predicted, I did end up flaring on the Tuesday following the surgery, and still had to power through it to get myself to work on Wednesday and Thursday (Friday was a work from home day, thankfully). I am recovering from both the surgery, since my lower jaw and teeth still hurt from time to time, as well as a flare, and because I took some time off for the surgery I have work to catch up on.

The bottom line is this: if you have fibromyalgia, any kind of trauma to your body (and surgery IS a trauma) is going to be harder on you than on abled-bodied persons. You probably won’t have the luxury to take off all the time that you need. It is going to suck. Plan accordingly.

CBD self-medicating: what worked for me

I am not a doctor. Please do your own research before deciding if CBD is right for you, and talk to your doctor.

I became aware of CBD for chronic pain through an acquaintance who was kind enough to give me a small bottle of CBD tincture to try. This started me on a journey to figure out whether CBD works for me, and also to figure out the most effective way of ingesting it.

This post goes over the products I’ve tried and which ones I liked. To cut to the chase: My favorite CBD products are the vape pens from Select CBD.

(if you are new to CBD, I encourage reading this informative post on the CBD subreddit)

I tried the following products:

I review these products under the cut.

Continue reading “CBD self-medicating: what worked for me”

My emergency fibro kit

This is a collection of things that I keep together so that I can easily bring it with me anywhere I go. It’s very small which makes it a lot more portable, but obviously does not include bigger items like my cane (which I usually still have in my bag just in case I need it).

The contents of my kit are:

  • Compression gloves [for when my hands start hurting, or when I get too cold in the office but still need to type]
  • Elbow compression sleeve [because working at a desk with a painful elbow is terrible]
  • CBD balm, lavender scented [the lavender helps with stress; at this point I’m unsure if the CBD balm helps with pain]
  • CBD vape, lavender [lavender again helps with stress; vaping CBD does seem to help with my fatigue levels]
  • Medication spares [sometimes I forget to take my medication in the morning. Having spares means I don’t have to go without for the day.]