Strike while the iron is hot/Pace yourself

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I had a few hours last night before bed without a migraine. I wanted so badly to stay up and take advantage of the time I was feeling well. But I didn’t – I kept my strict migraine-preventing sleep schedule. Or at least I tried to. 

Yesterday was the first day in weeks that I’d had any time completely migraine free. No prodromal mood swings, cravings, and sensory sensitivity, no postdromal brain fog and leaden depression. I felt so good. I could think clearly and organize my thoughts effortlessly. I felt calm and motivated.

But I couldn’t sleep when it was time for bed. I took my round of nightly drugs, which normally send me straight to sleep, but I lay there wide-awake. I meditated, I read, I took some melatonin, I had a cup of soothing tea. Then it was 2 AM.

Today I have another migraine.

Maybe the attack would be worse if I’d stayed up working instead of trying to rest. After all, I’m dictating this post to my iPad instead of clutching the toilet bowl. But sometimes it feels like every choice I make managing my illness is the wrong choice.


How to get your prescriptions covered/reimbursed

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  1. Go to doctor and be prescribed a new drug. (.75 hrs)
  2. Get new prescription filled. Find out drug is not automatically covered by government prescription drug coverage. Save those receipts! (.5 hrs)
  3. Schedule a new doctor’s appointment. (.17 hrs)
  4. Find and print exception paperwork for government prescription drug coverage cases and fill out your parts. (.08 hrs)
  5. Take exception paperwork to doctor’s appointment and have her fill in her parts. (.75 hrs)
  6. Mail exception paperwork. (.25 hrs)
  7. Wait.
  8. Call doctor’s office to see if paperwork has been returned. (.17 hrs)
  9. Wait.
  10. Call doctor’s office to see if paperwork has been returned. (.17 hrs)
  11. Go to doctor’s office and pick up exception rejection. It will always be a rejection. (.5 hrs)
  12. Print forms for secondary insurance coverage and fill out. Attach the exception rejection. (.25 hrs)
  13. Print forms for reimbursement from secondary insurance  for already purchased prescriptions and fill out. Attach original receipts! (.5 hrs)
  14. Copy original receipts for your taxes. (.25 hrs)
  15. Take secondary insurance forms to campus office. (1 hr)
  16. Wait.
  17. Take the check that arrives in the mail to the bank. (.17 hrs)
  18. Repeat for each new prescription!

I kind of hate to complain because the healthcare paperwork crap I deal with here is much, much better than what I dealt with when I lived in the US, but I’m going to complain. That’s almost 6 hours of bullshit to deal with for each new prescription. I can speed things along a bit by combining drugs sometimes, but it’s still a lot no matter how I dice it. Do you know how much work I could do in 6 hours?

Being sick is a lot of work. And a lot of it is complete fucking bullshit that’s about endlessly proving you’re sick enough to access the care you need.

 

Why low pay for trainees is a feminist issue

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Scientists get paid like shit in grad school and things don’t improve much when you’re a post doc. This pushes women (and men – but mostly women) who want families out of science. Just listen to the brilliant Claudia Alexander lay it out.

“I was never able to find the right mix of work and family — women carry more of the burden of the family in our society — and I found that I couldn’t do both. But many of my male colleagues have wives who do a lot of the family work for them. I used to say if I had known better I would have chosen to be a lawyer because for the same hours I would at least earn vastly more money, and then been able to afford support for some of the household and mothering tasks — a nanny and daycare, for instance. Some of my female colleagues also say that finding the right partner in life is essential to making that balance work.” [emphasis mine]

 

I am never busy

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I am never busy. My to-do list is long and it grows every day I spend in bed with a migraine. But I never feel harried; I don’t even allow myself to rush. A departure from calm leads to migraine attack, a return to calm leads to migraine attack.  Busyness leads to migraines directly, through stress, and indirectly, through disruptions to migraine-preventing routines.

I do not grab a quick breakfast or skip my exercise routine or stay up a few extra hours so I can finish those figures before my meeting. If I oversleep, I reschedule my appointment rather than rush out the door. I try to prioritize, but sometimes things don’t get done on time. I still don’t get busy.

I sometimes wonder how this affects my colleagues’ perceptions of me. The performance of stress and busyness is the way that we signal our dedication and hard work. People who are ill are often stereotyped as weak and lazy. I worry that by not participating in this performance, I’ll be seen as a sloucher or incompetent.

But I kind of think I’ve got a good thing going, too. Other academics who know nothing of my illness sometimes think I’m further along on the tenure track than I really am due to my chilled-out nature (and crazy math smarts). People who are more familiar with my situation are amazed that I’m not freaked out all the time – they are, and they can work every single day. When I explain the rather strong behavioural feedback I get, some people jokingly express envy.* Assuming most people aren’t complete assholes, that suggests overwork, competition, and expectations of overwork are apparent to many. But it also shows how overwhelmed and powerless they feel: People wish they had a painful chronic illness as an excuse to exercise and cook a proper dinner.

I was talking to a friend of mine about how I’m pretty sure I’m going to leave academic science. I have brilliant ideas. I’m an awesome person to have around because I am amazing at helping other people crystallize their own ideas and work through hard problems. I really, really love what I do and I seem to be pretty good at several important aspects of it. But I don’t think I can work enough to make it as a PI. There are lots of people just as clever and excited about science as I am. If I go to apply for tenure track jobs, I will have fewer papers per year. I won’t be able to apply for as many grants. I won’t be able to teach as many classes. I won’t be as much bang for the buck.

But fuck. What a horrible thing to say. What a horrible way to run our universities/basically everything under capitalism.

My friend told me academia needed people like me. And I think she might be right.

I’m going to run into this problem wherever I go: Since I am sick, I don’t make as many widgets/papers, so I’m not as valuable. But I think that is fundamentally not true. I mean, I can’t write as many papers, but that doesn’t make me less. I think everyone is fed up with being valued like that – thus joking about wishing they were chronically ill as a way to try to escape the system. Maybe having people like me around encourages a better work culture for everyone by changing norms and expectations in the workplace.**

I know academics love what they do, but it seems to be making an awful lot of us miserable. We keep talking about improving mental health services, but maybe we should be focusing on fixing academia,too. What if you got to spend 6 weeks at home with your new baby and didn’t have to worry about a paycheck? What if being in academia didn’t mean living close to (or below) the poverty line into your 30s? What if you got to sleep enough and call your gramma every week and have hobbies? What if you didn’t have to leave your entire community every 2-4 years until you’re 35?

* Don’t do this.

* * At the same time, it’s a lot of work to be chronically ill – have to fight for accommodations every step of the way usually. This is exhausting and demoralizing.

Migraine log – October

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It’s been some time since I did a migraine log. Let’s slog through some data.Migraines as of the beginning of November.

Frequency

Back when I did my last migraine log at the end of May, I was all aflutter about topamax, which I’d started 6 weeks before. I’ve had some serious ups and downs (downs and downs?) with it since then. Based on the data here, I think my preliminary supposition about topamax impacting the frequency of my migraines was wild fantasy. There was a drop off in my migraines, but I think it was more likely related to seasonal triggers.

Severity

I did a quick visualization this time of the severity of my migraines. When I record my migraines, I write down the date, treatments, and notes on symptoms. I pretty consistently use mild, moderate, severe, and extreme to classify the severity of my migraines, though I’ve become more consistent about that language through time. For the graph above, I just classified the data based on the presence of those words. It would take more time to go back through my notes and classify all of my migraines and many I might not be able to. Regardless of all that, the more severe a migraine was, the more likely it is to have been recorded as such.

August/Sept/Oct look better than May/June/July in terms of the ratio of Not too bad to Pretty bad migraine days, but August/Sept/Oct doesn’t look too different from the time period right before I was taking topamax. My severity data starts to get a bit spotty there, though, so it’s hard to compare. I don’t see my neurologist until January, so I’ve got a few more months of data collection left before I decide.

Kill me migraines aren’t too much of a threat now that I’ve got triptans and a few other tricks up my sleeve.

Worryingly, Very bad migraines seem to be getting a bit more frequent.

Migraine Proof

I heard about this supplement called Migraine Proof that’s a combination of fish oil and vitamin B2. It’s advertised as “formulated specifically to support a migraine free and healthy life.” In mid-September, I went to a fancy health store and bought nice formulations of each and started taking them in the doses you would get if you took Migraine Proof . I had one fewer migraine in October than I did in September. While the number of Very bad migraines did decrease, the number of Pretty bad migraines increased. Definitely not migraine proof.