Headache Awareness Month #12

#12 The Box: You are the experiment: What situation in your Migraine/Headache Disorders treatment has made you feel most like a guinea pig or lab rat?

Most of my treatment has been like being a guinea pig. I’ve spent years just throwing different medications at my nervous system, hoping something works. It’s incredibly, incredibly frustrating. It becomes even worse when I’ve had to shift to a new doctor – I’ve been bad about keeping track of what’s been tried in the past, so I’m sure things end up being tried twice. I’ve been poked and prodded. I’ve had SO MANY tests done that come back normal. At this point, I don’t care how bad the tests results are, I just want something to come back not normal so I have something we can see and treat.

Some of my frustration is probably normal for anyone in this position. But some of it is that, as a scientist and engineer, I want this to make sense. I want to be able to do an experiment and get results. But there are too many variables, especially once you throw in the other conditions. I’ve had to adjust the treatment of one condition because of the interaction with another (i.e., I can’t take tramadol for fibromyalgia because of the seizure and I’ve had to adjust the combination of fibro, migraine, and seizure treatments because my poor central nervous system can only take so much before it surrenders and gets wonky). My triggers are so ill-defined it drives me crazy, but I can’t manage to get a better understanding of them. Weather shifts definitely seem to be a trigger, but not all shifts actually prompt a migraine and not all migraines are related to weather changes. At least, as far as I can observe, which is not terribly accurate.

I’ve tried keeping track of what I’m doing, what the weather’s doing, and when migraines happen, but it doesn’t help clear any of this up. I’m the guinea pig, but the principal investigator doesn’t know all the variables either. I want my doctors to be all-knowing, even as I know they’re just people, too.

June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

Leave a comment

Filed under Commentary, Writing

Headache Awareness Month #9

#9 Mama Mia: Money Money Money: How does living with Migraine or another Headache Disorder impact your financial situation?

This has been a huge thing for me. A little background: through my undergraduate years, I was in and out of physical therapy constantly. I was finally diagnosed with fibromyalgia toward the end (I think) of my 4th, and last, year. That year, several other things started getting weird, including some extremely severe headaches. I was diagnosed with trigeminal neuralgia and one of the first treatments we tried for that worked (although this began the build-up of my daily medications). The headaches associated with that were debilitating, but they were quickly eclipsed by the other health issues and simultaneously coping with my senior year of nuclear engineering classes (which included reactor engineering, in which I discovered that the aerospace engineering version of thermodynamics didn’t cover a huge chunk of things I needed, and my senior design project, which had its own weirdness and stress). I was still managing to work during this, although fewer hours a week, at the same job I’d been doing since I started college, which I enjoyed, with people I liked working with. When I started graduate school, everything started to change. I ended up going through two jobs I was totally unsuited for (the first one physically, primarily because it wasn’t something with much flexibility in schedule and I was having more and more health problems, the second because I hated what I was doing and it was in a field I was totally uninterested in) and working in a lab that was also in an area that wasn’t of much interest to me. My thesis fell apart (this is why I wasn’t working in an area closer to subjects I enjoyed/had some interest in; my thesis was an odd combination of things and this was the best fit, but my interest didn’t go beyond my specific topic), although I really enjoyed the research I did in the design class I took for a non-thesis degree. Through all of this, I was fighting to stay functional.

Just before my last semester started, I was hired by the Navy to work at a shipyard. My thinking had been that since I was interested in nuclear thermal space propulsion, which is hard to find real work in, I could at least work in nuclear propulsion. I was absolutely in the wrong place (they needed mechanical/electrical/etc engineers, not nuclear; anything that would use my education was performed by private companies) and over time was less and less happy there. In retrospect, with this and previous jobs, it has become abundantly clear that my emotional state and health form an incredibly strong feedback loop. As I start with health problems, when I become stressed (which includes deeply unhappy), the problems become worse, so I feel worse, and it just keeps going. Over time, migraines started, then I became progressively less and less able to work, since none of the treatments we tried worked at all. As this happened, credit cards would just have the minimum paid. And then another month, and another. Until suddenly, things are out of hand and I had no idea how it got that way.

Breaking the cycle of stress/health feedback has involved being out of work for almost 2 years, a seizure, and 6 months of not driving (and thus a lot of solitude) that meant that being able to drive again created such a drastic change, it jolted my emotional state a lot. I’m not sure how much of my health has actually changed (other than having different doctors down here with different perspectives and getting away from the constant weather shifts of the coast) but I’m more able to roll with what my body does and I’m more willing to try things again. Seeing friends and doing things helps a lot, too. But the financial side is still hanging over my head. I would be in hugely dire straits without my mother, who is amazing and puts up with having her 28-year-old daughter move back in.

I applied for SS disability over a year ago, when things were especially bad. With luck, I may have a court date within 12-14 months. If there had been some way to get help before this, it would have been hugely helpful. If I hadn’t had my mom to bail me out, I wouldn’t be in a position now to recover even as much as I have. I should be able to get back benefits, but I can’t help but think about people in this position who don’t have people they can lean on. How do back benefits help once you’ve lost your house and your health is more of a wreck because you haven’t been able to afford medical care in over 2 years?

I’m looking into getting some part time work and possibly going back to school, but I’m so, so afraid that I’m going to get a job and then not be able to fulfill the requirements. If I overestimate my ability to function and let down an employer, I feel awful, like it’s my fault my body won’t cooperate. And so I drag my feet in getting the ball rolling. But I’m making progress, baby steps at a time. Perhaps with enough of those steps, I’ll get to where I’m going.

June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

Leave a comment

Filed under Commentary, Writing

SFWA Kerfluffle

I am not the first to use “kerfluffle” to describe this, but it’s definitely the correct word. Because holy crap has this blown up into a fully-grown kerfluffle, not a cute baby kerfluffle. (Apparently, this should be spelled “kerfuffle”, but I say it with that extra “l”) Since most of the people who read my blog don’t follow the Science Fiction & Fantasy (SFF) community blogs (I presume), I’m going to present this a bit differently than most of the other stuff I’ve seen. But I think this is important in a larger context than just the SFF community.

Since I’ve not been following a lot of blogs lately, I missed this when it started. My first encounter with someone referring to it was in N.K. Jemisin’s Guest of Honor speech for Continuum, which was posted in her blog and spread by many other SFF writers, especially people of color and women. Here’s a brief quote about the SFWA (Science Fiction Writers of America) mess from the speech, although the speech as a whole is absolutely worth reading.

To summarize: two of the genre’s most venerable white male writers made some comments in a series of recent articles which have been decried as sexist and racist by most of the organization’s membership.

The articles in question were published in SFWA’s quarterly publication, “The Bulletin”. The SFWA Bulletin is a print-only publication, so it’s hard to find these articles, but Natalie at Radish Reviews has a .pdf of the last of the articles (which are a conversation between the two writers in question, along with some highlights. I tried to read this and judge for myself, but I had to stop less than a third of the way in. There are some things I just don’t subject myself to…

Trisha at the blog “Geeking Out About…” has a lovely post that explains some of how this built up and how some of it should have been handled to prevent it from getting to the point it did. It was nice for me, because it gave background and was very calm.

Jason Sanford explains that people telling you that you’re sexist and requesting that your offensive column be pulled from their PROFESSIONAL organization’s OFFICIAL publication in the future is not censorship. These guys are still free to publish all they want on their own blogs or whoever will publish them. You may have a right to your opinion and its expression, but you don’t have a right to be published in official stuff. And no one HAS to listen to you. I think he has another post somewhere on what was actually wrong with what they said, but this one is only on why this isn’t censorship.

Kate Milford’s blog post title really speaks for itself: “Kerfluffle Watch, SFWA Edition: Call Your Detractors Liberal Fascists, Lose the Argument”, which is really true for anything, not just this. She has an attitude similar to mine in many things: she wants to assume the best of people.

So, halfway through the rebuttal column, I had learned this much: the authors consider that either those who objected to the cover and dialogue in Issue 200 are at best stupid and at worst censorious. Resnick and Melzberg are also upset about the “anonymity” of those who complained, although ten minutes on Google would’ve given them ways to contact plenty of people eager to discuss their concerns—assuming they’re interested in discussion, and if I were still assuming good intentions, I’d presume they’d be pleased to do that. But by this point in my reading, I was no longer assuming good intentions.

E. Catherine Tobler is actually leaving the SFWA. I want to post a few quotes from her post, but please go read the whole thing!

On expecting an article (in #200) about female writers and editors to be of interest to a female writer and editor:

I found a dialogue that seemed more focused on how these “lady editors” and “lady writers” looked in bathing suits, and that they were “beauty pageant beautiful” or a “knock out.”

The next issue (#201), which was expected to address some of the issues that came up in the discussions from #200:

it included an article, written by another man, that told women to emulate Barbie, to “maintain our quiet dignity as a woman should.”

And the last straw, #202:

Issue #202 brought with it a “rebuttal” from Malzberg and Resnick, in which they used the words “censorship,” and “suppression,” and “ban.” In which they said those who complained about their article were anonymous to them, that the SFWA forum had become “the arena for difference.” Was it members who objected to “apparent sexism,” or was it a larger, darker, more hostile and threatening thing that wanted to suppress their dialogues?

In all the complaints that were voiced, there was never a call for censorship. There was never a call for suppression. There was a call for respect.

I’m not familiar with her work, but it sounds like her loss will diminish the SFWA.

And finally, Seanan McGuire, who has not only an insightful post, but what may be the greatest quote of the whole fiasco (after explaining exactly what the objections are to the use of “lady author” and “lady editor”):

Does that seem like a lot to get out of the phrase “lady author”? It kinda is. But that’s what happens when the background radiation of your entire life is a combination of “men are normal, human, wonderful, admirable, talented, worth aspiring to,” and “bitches be crazy.”

Anyway, I hope this may be of some interest. I’m encouraged that I’m seeing more and more come up in the SFF community challenging the white, male, Euro-centric tendencies. There is so much out there for writers of speculative fiction to work with, we shouldn’t limit ourselves.

Leave a comment

Filed under Commentary, Writing

News (now with local coverage)

This is less news, exactly, but it might be useful to other people – the NY Times has an article on building a free webpage. This is something I’ve been wanting to get back into (beyond this blog) – I want to create a site with some physics and math tutorials. There are some good ones out there, but not for calculus-based physics. And I’m finding that a lot of classes that teach calc-based physics don’t do a good job of connecting the physics and the math (assuming they were really taught the math to begin with).

So, there’s all this headway on insurance options. State exchanges open on my birthday this year, but the coverage wouldn’t start until 2014. One of the really big doctor/hospital systems in the metro-Atlanta area (at least on the north-west side of the city) is going to start offering its own insurance, which makes sense – it cuts out the middleman that is the insurance companies. Most of my doctors are already affiliated with Wellstar anyway. But AGAIN, the January 2014 date. I need it to start half a month before that…But I think the Wellstar/Piedmont thing is a good idea. I don’t know how it would work with non-Wellstar/Piedmont doctors, or if you were travelling, but it’s exciting to see someone doing something different than the norm.

Local extra-conservative churches have lost their minds over the ruling by the Boy Scouts of America to allow openly gay scouts. This isn’t unexpected, but I’m entertained by the fact that the scouts point out that “the resolution also reinforces a long-standing policy that any sexual conduct by scouts is prohibited and remains contrary to the virtues of scouting”. Doesn’t that align with what churches want for gays? ‘Love the sinner, hate the sin’ sort of deal? You get the gay scouts, but not the gay behavior?

The National Bar Association’s Criminal Justice Section has passed a resolution to help LGBT victims get justice – by acknowledging that the “gay panic” defense is crap. It’s always baffled me anyway, so I’m glad there’s a more formal, focused push to work against it. You should not, under any circumstances, be able to kill someone because they hit on you. Could a guy kill a girl because she hit on him and he wasn’t attracted to her? No? Then the same goes for a guy or a trans person hitting on him that he’s not attracted to.

Leave a comment

Filed under News, Writing

Headache Awareness Month #6

#6 Premonition: Where would you like to see treatment options for Migraine & Headache Disorders go in the future?

Honestly, the biggest thing that would have had an impact for me is more support on the mental health/coping with life side of the coin. I had plenty of treatment options to choose from (although the thing that helped the most was just moving), given time to try things. But I had no clue how to deal. It’s a huge thing trying to both deal with sudden chronic pain AND deal with its impact on life. There needs to be a support structure in place that your doctor can send you to (instead of just relying on whatever communities you can find online, usually long after you needed to start lifestyle adjustments) that can help with the financial side (medical bills, balancing cost/benefit of different treatments, loss of income) as well as just how to deal with constant pain and the loss of the ability to do things without letting it turn you into a hermit.

For me, I’m lucky enough to have family with the resources to help me financially, but so many people can’t. And the loss of independence has been a hard thing to take, even so. When all this started, I was living in a place with no social support structure. That made things that much worse. Getting back to metro-Atlanta has meant that I have friends around and friends I can go through to meet new people as others move away (and I presume at some point, people will start reproducing and be occupied with that, but so far my immediate social group is slow with that).

But there needs to be better infrastructure to support people from a practical standpoint. Even now, I’m trying to figure out what to do about insurance when the coverage from my previous employer runs out. I’m too old for my parents’, but I imagine I’ll have to pay an incredible amount for insurance unaffiliated with an employer. Not to mention the whole pre-existing condition fiasco that I am.

June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

Leave a comment

Filed under Commentary, Writing

Headache Awareness Month #3

#3 The Hunger Games: “Happy Hunger Games, and may the odds be ever in your favor”: What healthy habits have you adopted to put the odds of better Migraine & Headache Disorders management in your favor?

I am, admittedly, horrible at this. Part of the problem is that after SO LONG dealing with my musculo-skeletal system (which we finally figured out what I need to do to manage), fibromyalgia, migraines, Sjögren’s, and the seizure, I’m pretty skeptical about things. I’ve heard a few too many “well, if you only did this” to believe them. And so I push back when someone suggests something, just because I’m tired of everyone telling me about what will completely fix everything.

A long time ago, I started attempting to avoid coconut oil in everything. I know I’m allergic to coconut in things I eat, so I figured I should avoid it in any way I can. It’s in SO MANY soaps, but I’m making the effort. No noticeable effect so far, except it’s hard to find shampoo…

I tried gluten-free, but it didn’t seem to do much for the headaches (ie, no change as I was off gluten, and no change when I started eating it again). It just totally messed up my stomach.

I’ve reduced my overall Coke intake (both actual Coca-Cola and other soda-type drinks…quit giggling in the back, you, I mean the drinks, not the drug), but I’ve found that it’s the best caffeine-delivery system. I can’t drink coffee regularly without tearing up my stomach, but Coke is ok.

For a long time, I was eating regularly, counting calories, etc. I know I need to get back into that, but it’s a lot harder when I’m living with someone who isn’t, and who eats very differently than my preference. I’ve recently gotten back into taking vitamins daily. It seems to make a difference.

My next project is to drink more water. Or gatorade, whatever (I try, at least, for G2 or something, again so I’m not drinking a lot of calories that I don’t need). I don’t like the taste of water unless I need it, so that’s always been a challenge for me.

I’ve also joined a gym. I just have to get approval from a doctor (for the most random, minor thing, but go figure) and I can start swimming again.

 

June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

Leave a comment

Filed under Commentary, Writing

Headache Awareness Month #1

So, June is Migraine and Headache Awareness Month and someone put together a bunch of blog prompts for the month. I’m not planning to do all of them, and I’m already behind, but I’ll do some of them, at least!

#1 Phantom of the Opera: What do you hide behind your Migraine/Headache Disorders mask? What do you let people see?

It’s rare that I let people see what I actually feel like. Part of it is just that I’ve adjusted to having a headache so it’s not often visible. Other times, especially now that I’m feeling better emotionally, it’s just something that’s there in the background; I’m just so tired of not doing anything because my head hurts that it’s easier to ignore. On the other hand, I’ve used the migraine as an excuse to not do something because I just feel so…blah. Which I know is counterproductive, since I always feel SO much better when I get out and see people, but it’s always a lot easier to just blame the migraines than to blame depression (even depression brought on by the migraines/health fiasco that is me).

A bit of an addendum, since I’ve been awful at blogging lately (although I don’t know if anyone actually reads this regularly or not): at the end of May, I started driving again (6 months after the seizure as per Georgia law). It has made all the difference in the world, to be able to get out based on my schedule and my desires. It’s like a personality transplant, back to the Emily of my undergrad years. I can see, now, how I’ve been getting more and more withdrawn since my senior year when my health issues started. I don’t know if it’s just getting back the ability to drive, or if the seizure reset something in my brain, but it’s a hugely amazing change. I’ve gone out to do things (in Atlanta, even, which still feels like home to the adult me – Marietta feels more like the home you go back to and just visit once you’ve moved on, if that makes any sense), run into old friends, met new people…

The headaches are still here. Usually the low-level headaches can be managed by caffeine (usually Coke Zero, so I’m not drinking a lot of calories, but we finally found caffeine pills that I can use as well), but I have Imitrex/sumatriptan that finally works almost all of the time. So when I want to do something, I can make it work. It’s a nice change from the sumatriptan pretty much never working (which was when I was taking things for the headaches that were causing rebound headaches, which wouldn’t be treated with anything, really). It means less of “Emily” is stuck behind the migraine.

June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

Leave a comment

Filed under Commentary, Writing