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.

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.

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.

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.

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.

Some randomness

Hopefully I’ll be getting a new computer setup soon – I end up not ever doing anything online because it’s such a hassle getting my cranky laptop to do anything…

ABC’s ‘This Week’ with Cardinal Timothy Dolan (that link goes to the first page, which has the video of Dolan’s interview. Here is the link to the portion of the transcript with his interview) is such a lovely person. “We want you to be happy, but only if you do it our way. We’re not against you, just against any way you might be able to be happy.” But the thing that bothers me most is that, regardless of what they think religiously, why should that matter to the rest of the nation? Why should we have laws based on what YOUR religion says is what god wants? There are plenty of other religions that think god wants gays to be able to marry. And there are plenty of people who don’t believe in god at all. So why does YOUR god get to decide for all the rest of us?

An article from the Christian Science Monitor on the shifting opinions about gay marriage. Some quotes are encouraging – on the right, someone pointed out that this is the government getting involved in a religious matter and the government shouldn’t be stopping a couple from getting married. Also, Rush Limbaugh thinks there’s a “gay mafia”. Every time I think about that very much, I start to giggle.

A photo of the day from CSM from March 30 shows that young men doing stupid things (often in motor vehicles) is universal.

Amazon apparently just acquired GoodReads. This makes me sad. I have the two separate for a reason.

And an increase in deaths from the abuse of painkillers is going to make life even more miserable for people with chronic pain. Right now I’m in a position of not being able to do anything about pain due to fibromyalgia (I’m on something to help, but there aren’t any painkillers I can take that don’t cause rebound migraines – so when it gets too bad, I take ibuprofen and then suffer the headache the next day in a miserable cycle), and it sucks. It would suck even more if I knew there was something that could help me but I couldn’t get it because of overkill in response to the abuse of painkillers.

And this managed to simultaneously amuse me and piss me the hell off. I will absolutely agree that women in college are less often looking for their MRS degree. Plenty of people meet the person they marry in college, since they’re meeting and spending time with people of like interests, pulled from a larger population than they were exposed to in college. But this idea that the mother brings up (admittedly she’s crazy, but bringing up something that I’ve definitely seen other places):

Men regularly marry women who are younger, less intelligent, less educated. It’s amazing how forgiving men can be about a woman’s lack of erudition, if she is exceptionally pretty. Smart women can’t (shouldn’t) marry men who aren’t at least their intellectual equal.

Issue 1: why is there a double standard? Why is it ok for men, but not women? Issue 2: why do we care about education so damn much? My longest relationship (and among the most healthy/stable/not-with-a-crazy-person) was with someone with less education, although certainly not less intelligence. But not only does education not equal intelligence, but there are different types of intelligence. Yes, I’m technically a rocket scientist (had a college orchestra director who used to yell at us for messing things up, since we were all ‘rocket surgeons’ and ought to be able to figure it out), but I can’t cook worth a damn. And thus, I have mad respect for people who can. Are they “more intelligent” because they can figure out how to boil an egg? I guess that’s ok, though, since I’m female and a guy should be ok marrying someone less intelligent…as long as he doesn’t mind a wife who can’t cook…

Back from the Mostly Dead

I’ve been out of it for a bit – I’m seeing a new doctor for the migraines and he wanted to take me off the painkillers I’ve been using, because they may be causing rebound headaches. He seems to have been right, to a point – I’ve been having fewer of the really, really bad days and smoothing out to a constant lower pain level, but withdrawal has been just a lovely process. The still here, though. I’m in the process of moving AGAIN – the boyfriend/fiance of the last 4 years and I are splitting up (totally amicable, we’re still going to be good friends; really, the last year or so that’s been where we both have been emotionally but driving each other nuts in living together and the stress of my health getting worse and worse, partly because I can’t really do much, so I’m pretty hermit-like, and partly because the financial side of things, since my salary was providing most of the rent/utilities/etc). So I’m moving across town, with my mom.  The crappy part of moving in with her (we get along fine), apart from just the basic fact of moving back in with a parent at 28, is that she’s allergic to cats, so I have to leave them with the ex until I can get my own place, whether with disability of some sort or getting better enough that I can start working again.

Oddly, or maybe not so, is that I’m almost afraid of the migraines getting better. They’ve dismantled so much of my life that I’ll have to put it back together from scratch. Realistically, now that I have some real world experience, I don’t think I’d be happy with anything but research, and that in the core design/neutronics/nuclear physics area. Ideally, I’d like to go back to space propulsion reactor design, but I don’t think there’s much happening there right now. And I learned my lesson with my master’s – I definitely don’t want to do anything with the radiological assessment/dosimetry/shielding area. And GT has, since I graduated, gotten some huge grants to work on core design, so that would help. But I’d still have to start from a) being out of academia for 3+ years, and b) restarting life, really, since I’d want to get my own place and get used to not living with someone, unless I got a roommate.

Still Alive

The move has been an extremely crazy experience. I’m still getting things settled, and I’m living half between my new place and half between my boyfriend’s mom’s place – she’s out of town and someone needs to keep a relatively close eye on her cat, who is not well. I’m also trying to figure out a couple of weird medical things that came up, whether just because my body’s just spastic or because I pushed my body a bit too far during the packing, move, and some of the unpacking/settling that’s been done so far.

I’ll have internet at my place soon, I hope, and I’m going to write something about at least some aspects of the move.

Ummm…this was a bit unexpected…

Hi, everyone! I had completely expected to get a few things posted, futz around with the behind-the-scenes bits of WordPress and get used to it (the blogging I’ve done before was years ago, and I did all the HTML myself when the code was much simpler and the backgrounds were neon and the titles were blinking – I started early) and then start putting the link out on GoodReads and maybe Facebook and see if anybody showed up…

But I’m very happy to see you! As I mentioned in the introductory post, things may be a bit sporadic for a little while. I’m in the midst of both a move and few other things, so it’s kind of crazy. But as you drop in, either just passing or following the blog – would you leave a comment as to how you found it? Because I’m really so very curious now…

Edit (12/6/7 13:35): Until things are a bit settled and I’m moved, I’ve got this as a sticky/introductory post at the top of the blog page. And pages will be changing constantly, so check back often!

Also as a side note regarding writing content – there will definitely be some short fiction bits, and hopefully later some longer fiction, but as things rolled around in my head today, the underlying theme of a lot of the little abstract bits will likely be pain. The move is one of my attempts to help the immediate, all-consuming pain, but in the process of the move it is pretty excruciating.

Edit (15/7/12 16:07): Un-stuck.

Needles

Needles, unseen but not at all unfelt, enter my flesh with sharp motions. They stand in groups, like tufts of grass in a dirt lot. Like grass with an underground flow of water, the needles are there to connect with the flow of chi. Unlike the water, they are to help it move rather than to draw it out.

She asks me to exhale as one, then another, are inserted quickly near toes. There is very little pain despite her expectation. When a similar needle is inserted into my hand, shallow and into a fleshy area rather than the bony contour of my foot – pain. Immediate. But leave the needle. Maybe after a few minutes, the pain will go away.

That has been my refrain for almost 10 years. Maybe after a few minutes, the pain will go away. Maybe we just need to try one more thing and it will be the solution. Maybe the next test will find something to fix. Maybe the next doctor will have an idea. If I just keep trying, if I just hold out long enough, the pain will go away.

After five or ten minutes, I have to call her back to remove the needle. The pain didn’t go away; it just got worse. From my thumb and forefinger almost to my elbow felt like someone had applied a strong stimulus directly to a nerve, even though I know the needle wasn’t anywhere near one.

8 hours later, the arm still hurts. But I have a little gold bead to help the chi.