Tuesday, December 28, 2010


Now that Christmas is officially over, and I'm safely back home with my icepack and chamomile within easy reach, bundled up under blankets and basking in the glow of my desktop monitor, I feel like reflecting.

The Three Day Christmas Extravanganza had some really great moments, some mediocre moments and only a handful of terrible moments. I only had to beg off for two of the five gatherings I was expected to attend, which I consider a success. My homemade gifts were well received, and they were pumpkin gingerbread muffins, banana muffins, and crocheted plastic bags. I have a few ideas of how I'll do things differently next year, but mostly I had a good time. I ate well, but in moderation. I medicated as needed, but far less than I had worried might be necessary. And I got to see my family, which was the most important part.

And it was a pretty good year, overall. I think that this was the year that I really discovered food. I started cooking from scratch a lot more and have made a point of incorporating ingredients that I have never used before. For example, I've now cracked a coconut, roasted brussel sprouts, carved a pineapple, made seitan from flour, made hummus, baked bread, perfected stir-fry, and ate a whole lot more raw. I also learned how to cut my own hair, how to use my sewing machine, and I relearned how to ride a bike!

On the medical front, I got Botox, and then a new primary care doctor. I tried antidepressants for about a minute, and a few alternative treatments (one very alternative), most of which didn't help, but there was the resounding success of a temporary high dose of vitamin D, which gave me back a serious amount of daily spoons.

Blogwise, I started replying to comments more consistently and I think my writing has improved, though I have no proof of this.

Goals for the coming year: maybe finally getting acupuncture, that'd be great. I'm going to continue to make learning new things a priority, challenging my mind and body is so important for my health. I'm going to continue to reach out to others on the internet; the connections I've made have been so helpful, so supportive, so interesting, and so validating, that I can firmly say that positive social interaction (within whatever limits one may have) is some fantastic medicine.

Recently someone told me that they didn't know how I faced each day. I agreed that life is hard, and with chronic pain it can seem hopeless. But it's not, is the thing. My daily migraine pain and associated symptoms bring me down, all the way down, flat on the ground and barely breathing sometimes, but as soon as I am able, I get back up.

I wish you all a happy 2011! I can't wait to see what happens next.


Thursday, December 23, 2010

FUUUUUU- ...dge.

I recently wrote about disability, and ended the post thinking that being disabled has probably made me a better person. Pain, on the other hand, has brought out my dark side.

Pain has taught me pessimism and paranoia, I'm always looking for the next trigger or preparing for the next big migraine takedown. It's made me fearful, and every new ache and pain now has the potential to last forever. I had a crick in my neck last month and it was terrifying. Part of me knew it was just a crick, it'd clear up on its own in a week, on the outside. But there was a little voice telling me that my head had started hurting in a similar way. It began like an oddly persistent headache. At first. That little voice pipes up way too often.

Pain has twisted my once cheerful, easygoing personality into one that is sometimes dour, sometimes angry, and sometimes depressed. I've had suicidal thoughts. I've been mean to my boyfriend. This part of me is shameful, embarrassing, and horrifying. I want to like people, and be liked in return. I don't want to destroy my relationships, and I want to have a happy life. But it can be a constant struggle against the pain.

On the lighter side, pain tends to increase my profanity usage. Not that my language is squeaky clean when I'm pain free, but I do have a modicum of control. Unfortunately, when I'm under stress, the curses come flying forth despite time, place, or company. I'm sure a lot of people experience this, the occasional expletive when injured or unpleasantly surprised. But with the chronic pain, can come a chronic potty mouth.

But lo, I can defend my salty tongue with science! I've read about how profanity, and vocalizations in general, can be soothing to those in pain, whether emotional or physical. Like while birthing or grieving. So, see? It's not just me.

I've been working on it, and I'd say I've gotten myself about 75% PG rated. Sometimes, I start to slip, and try to catch myself with a so-graceful "fuuuuuuuu- ...dge" or "son of a monkey". I don't normally condone those types of watered down profanities, I feel like if you are going to pretend-swear, just fucking swear, okay? Everyone knows what you mean. But, at those times when I'm already halfway into a really good curse and I suddenly realize I am about to be extremely inappropriate, a panicky "mothercracker" is completely understandable. I do allow myself the freedom of totally unrestrained speech, but I try to keep it in my own home. It's just me, the man, and the dog. No one is offended here.

And because I can't resist pointing out the silver lining, there are a few good things pain has given me. Meditation for one thing, and an appreciation of quiet. Empathy. My pain is giving me experience, and it's added another layer or two to my personality, for better or worse. I can't help but appreciate the entirely different life experience I am having because of chronic migraines. I had no idea this world existed until I was submerged in it. That's the naivete of the healthy, I suppose.

Before pain, I'd always wanted to write. I've been writing, in some form, since I could read. I'm the proud author of scads of mostly bad poetry, a few short stories, a big emotional vomit of a terrible book, and a scattered, ridiculous livejournal that had all left me thinking I was proficient, but maybe not too talented. It wasn't until I couldn't do anything else that I finally found a voice.

"There is no coming to consciousness without pain."

Carl Jung

"Pain is no evil unless it conquers us."

George Eliot


Thursday, December 16, 2010

Depression, Ibuprofen and Online Captions

It's been a slow week at chez steph, due to a three day stint with some serious depression that I'm pretty sure was caused by ibuprofen. Really.

I've been dabbling in depression since the migraines took over, but have thus far been able to avoid being depressed depressed. I can get out of bed in the morning and go for walks and try to make myself better on sad days with endorphins and whatnot and that usually works well enough. But for those three days last week, I just couldn't. Do. Anything. All I could do was cry and cry and zone out on the internet and happy puppy pictures. I was getting really scared that this might be the way I am now, when it suddenly lifted. I'm back to dabbling, and the only thing I can think of that might have triggered it is that I took ibuprofen, two days in a row. So weird.

Wordpress is doing this adorable holiday thing where all of their blogs have snow falling over the text. It's so festive and charming and MAKES ME FEEL LIKE PUKING ON MY SHOES. Please, wordpress, knock it off.

While I'm griping about the internet, I've got a bone to pick with online tv. Reliable captions are few and far between. Hulu is the best of them, but my estimate is that they caption 25%, or less, of their content. They blame it on their providers, and the networks blame... somebody else... I don't know. All I know, is that I've stopped watching a lot of shows that I like because I can not find them with captions. For example, any Syfy show. I've written emails to all the networks requesting that they make their content accessible to everyone. But they don't even respond most of the time. It's rather depressing. Youtube started this intuitive captioning thing for some of their videos, but it's pretty consistently terrible. This Safety Haiku is very similar to my own experience. It comes out nonsensical, totally unhelpful, and rather nauseating.

However, the recently passed Communications and Accessibility Act of 2010 aims to make the internet friendlier to those for whom audio is a problem. Within a year or two, all content previously aired on regular television will be mandated to have captioning available online as well. This still doesn't apply to user generated content, or even web series, since they wouldn't have "aired", but I do have high hopes for the auto-captioning services. Technology changes too fast for them to remain unusable for long.

And one more internet gripe: I am unofficially boycotting any websites with music or audio that starts automatically, whether it's in blogs or ads. I try to keep my volume muted, but I forget, and lately I've been smacked by unwanted noise enough times that I've just started deleting them all from my bookmarks and reader. I don't have the spoons for these assaults.

Link of the Day: Care at home is a civil right - As a disabled person who is reliant on others for daily needs, this article really resonated with me.


Saturday, December 11, 2010

Bouncing Back

Migraines knock me down nearly every day, but I keep getting back up. Because even if I stay down, even if I stop trying, I'm still going to get hit.

I thought about this when I fell off my bike recently, how I barely even checked my (minor) wounds, just got back on the bike and kept moving. What's dwelling on the pain going to do? I could cry, and I did cry a little as I rode away. But my tears dried quickly in the wind and though those bruises bloomed nicely, I enjoyed the rest of the ride still unafraid, without worry of another fall. Because a fearful bike ride is an unhappy bike ride. A fearful life... same rule.

Unfortunately, my migraines hurt more than those bruises and I tend to fall hard, every day, so I don't get down on myself for feeling a little gun shy after a particularly rough neurological shit storm. It's okay to feel fear, it's what keeps us from flinging ourselves off of buildings, and it's what reminds me to bring sunglasses and earplugs and a hat and a bajillion other little things I have stashed in my big ol' bag that I take with me everywhere I go. Fear is an essential emotion. But an important part of bouncing back is getting over the fear of constant triggers.

I remember the very first episode of Lost (I still haven't seen the last season!), Jack tells Kate that when he felt really afraid, when he was paralyzingly terrified, he'd give himself five seconds to freak the hell out. Then he would bootstrap up and deal with the scary thing, be it a botched surgery, a smoke monster, or a migraine. He didn't say the last one, but this really resonated with me.

I try to allow myself the time to deal with things things that scare me. (But more than five seconds, thanks Jack.) I write it out here or find someone I trust to talk to. Sharing pain with people who understand is empowering. Facing pain is easier when I know I'm not alone.

So, I continue to get back on both the literal and figurative bikes. I'll pedal slowly and probably wobble and veer a bit. I might fall, but I'll get back up. I will always get back up.


Sunday, December 5, 2010

The Practical Usage of Pot

Marijuana: It's not perfect. But it's the best painkiller I've tried yet.

I've tried using it in various ways. Eating it in brownies, cookies, butter, and candy tasted good but never had a noticeable affect on my pain. Vaporizing it wasn't as effective and was a huge to-do with machines and balloons and nonsense. Applying it in lotion form may have helped with some muscle tension but I wouldn't swear to it. And taking an "extract" in a pill possibly made me hyper for twenty minutes, an hour after I took it. That's not particularly helpful. I've also tried some derivatives of the cannabis plant, such as hash, which actually triggered some head pain, and keef, which I currently use in addition to substandard grades of marijuana, when I can't afford the better stuff.

Through trial and error, I've found that the best way for me to use marijuana is by very unoriginally smoking it. I most frequently use a small pipe that folds in on itself to cover the bowl, and any ash or embers, when it's not in use. When closed, it's smaller than my thumb, so it's easy to carry discreetly, and it comes apart with a screwdriver for a mostly painless cleaning process.

Marijuana doesn't totally eliminate pain, but it does reduce it, changes it, and makes the pain somehow more dealable. With marijuana, I've gone from a suicidal 10 on the pain scale to a relieved 8. Or a non-functioning 8 to a slow-moving, yet productive 6. Or an irritable 7 to a cheerful 4. After that it's just gravy.

But pot is not without its side effects. Sometimes I'll seem "high", (talking a lot, being sillier than usual, the giggles), but it's only at first, if at all, and mostly I feel normal on it. It makes me a little stupid sometimes, but usually I think better on it because my migraine isn't overwhelming every synapse. If I've been smoking frequently, I can get coughy, so if my head pain is outrunning my lung capacity, I will put down the pipe without hesitation. I've had bronchitis and it's really not fun.

Sometimes I can feel the muscles tensing in my scalp more after smoking pot (this happens more often with indica strains, so I try to stick with sativas), but it has never triggered a migraine. However, coughing has, so again, I try to be gentle with my lungs. Pot doesn't give me rebound headaches, but if I've been smoking frequently, a day off can feel sluggish. And that's it. Marijuana has less side effects, for me, than pretty much every pill I've tried. It's like nature made it just for me. And then people stumbled onto it and cross-bred it for thousands of years into its current migraine pain fighting potency. Teamwork!

My boyfriend likes to tell me about canniboids and why marijuana works for me, but it goes in one ear and out the other, so I don't have any of that information for you. Though I did do some cursory googling and discovered that Wiki looked pretty darn thorough. Though it is still wiki, so grain of salt, y'all.