Saturday, August 31, 2013

Migraines of a Forgotten Era

I've had migraine symptoms since I was a child, but no one ever called it that. "Sick headaches" was the closest anyone in my family ever got to saying migraine, and I remember my grandmother telling me that was what I had, as she lay a cool rag on my forehead and told me in the quietest voice I ever heard her use that I just needed to go to sleep and I'd feel better when I woke.

It can be an odd feeling to look back on memories with a new perspective, whether it's realizing all those seemingly unrelated and random symptoms were actually connected by a common disease, or that your parents weren't really wrestling that time you barged in at six am. The dawn of understanding sheds a light on our experiences that may not always be flattering, but damned if it's not interesting.

Another vivid migraine memory is of riding in the passenger seat of my mom's car on the way to school, and the sun being so blinding and bright, it was intolerable. My eyes would water and shut involuntarily, and all I could do was cover my face until it passed. It felt like a sort of eyeball/brain-seizure -- with the same buzzy feeling I've mentioned before that accompanies some of my weirder symptoms -- and the pain was terrifying. It would only last a few minutes, and it didn't happen often, but it happened more than once on the ride into school.

I've seen halos around lights for as long as I can remember. Streetlamps at night, in particular, would trigger this effect. I always thought it was pretty.

Sleep disorders aren't strictly migraine-related but they are more common in migraineurs. When I was small, I experienced night terrors. I grew out of that to become a sleepwalker. It was pretty frequent when I was a kid, I'd wake up in weird places or hear stories the next morning about the strange conversations I had with someone.

All of the symptoms and migrainous events I can remember from childhood were directly related to stress. I was tired, or had been in the sun too long, or I'd been crying. While these symptoms were frequent enough to be familiar, it apparently didn't seem worthy of any significant mention to my parents. I can only recall experiencing one "real" migraine before they went chronic on me -- no wait, I just remembered another.

In high school, I was at color guard practice in the morning, and the sun was bright as hell. We were in the middle of learning a new routine when my head went swimmy and I was confused and pissed off for no reason, so I sat down, refused to twirl my flag anymore, and started crying instead. My head hurt, but it was in the background, mostly I was confused. I couldn't explain what was wrong, I had no words, and my coach sent me to the nurse's office. It was a morning practice, before classes, so the nurse wasn't there yet. I sat on the floor outside her office and cried some more until an older student walked by and asked if my head hurt. I remember being so relieved that she had asked me that, I never would have been able to tell her if she hadn't said the words herself. I tearfully nodded and stopped crying, suddenly much less freaked out. I don't remember the rest of it, whether I made it through the day or the nurse called my mom to come get me. Maybe she just let me take a nap, because I actually remember doing that quite a few times over my school career. I was always on a first-name basis with the school nurse. Huh.

I've probably always had migraines, I just never had a name for it.


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Tuesday, August 27, 2013

Clotheslined

So, our clothes dryer died and I've never been happier to be in the middle of summer.

Line drying clothes is more labor intensive and time consuming than using a dryer, but it's not impossible and is preferable, in some ways.

My clothes are never wrinkled if I forget about them on the line. We use less electricity. I get a little exercise putting the clothes up and taking them down, and it's an excuse to putter around outside, which is almost always good for me.

But, on my bad days, the extra labor makes laundry that much harder to tackle. Reaching to hang and retrieve from the line, bending into the hamper, the sunshine peeking from behind the trees at me when I least expect it, and the negotiation of our often treacherous hillside all require a certain level of physical and mental stamina that migraines can take away very easily, and suddenly.

And once winter comes, I don't think line drying will work very well at all. Our shady, often damp section of the forest isn't at all ideal for line-drying, because even in the middle of summer, it takes about 12 hours to dry cotton t-shirts, and often more than 24 for jeans. Once the temperature dips a few degrees, or the rains hit, I have no idea how I'm going to get our clothes dry. I've got my eye on craigslist, so hopefully a used dryer will pop up before then.

In the mean time, I'm counting myself lucky that it wasn't the washing machine that went out. Or the dishwasher. I love you guys, don't ever leave me.


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Friday, August 23, 2013

Medical Edibles

Marijuana-infused edibles have become an invaluable part of my self-care routine.

I'm no stranger to the common brownies and cookies that are sold at every dispensary, but nausea comes along to my migraine parties and sometimes those rich foods are impossible to gag down. At home, my boyfriend makes me ginger cookies, which are a near-perfect delivery system, but if we're out and have the cash, we'll sometimes check around and see what the local guys have for sale.

And I'm rarely impressed. Massive cookies, or syrupy hard candies, or the uber-chocolate-explosion-cocoa-mouthbomb-death-fudge-brownies are not at all what I'm looking for when my head hurts and I feel like barfing on everyone around me.

Sorry for talking about barf during an edibles review. But, it's pertinent, because I finally, finally, FINALLY found something in a store that doesn't exacerbate my barfiness. While visiting our favorite local dispensary, my boyfriend was gifted a sample of these delightful "ginger bites" by lifted elevated edibles. The packaging states that "all ingredients used are vegan, gluten-free and organic", which I appreciate, as a vegetarian trying to cut down on her GMOs. The texture is a soft, dense cookie, with bright flavors of cranberry, lemon and ginger that really pop, in a small size that makes ingestion quick and easy, with not a trace of cannabis flavor to be found. It's a two to four dose, which is a pretty subjective measurement in the medical cannabis world, but I started with half on a moderate-bad day, then ate the rest an hour later when my head was unfazed. A half hour after that, I was feeling pretty fantastic, so I cooked dinner, cleaned the kitchen, and wrote this review with no additional medication for the rest of the evening. On a moderately bad day, these things individually are very difficult, so to be able to accomplish all three, then sleep awesomely and wake up smiling, it feels like a dream I don't ever want to wake up from. I don't review most of the edibles I try anymore, because our homemade version has outshone everything by miles and every review would be the same, "Too big, too barfy." Until now. I love these ginger bites and would use them all the time, if I could.

When the edibles hit me right, I feel practically normal. My head still hurts, but often only if I look for it, or really push it, and I'm still nauseated, but to a lesser degree. My body weariness largely fades away, my mood brightens, and my stamina blows me away. If it's been a while since we could afford for me to medicate this way, I can actually get weepy from the relief edibles offer. To suddenly have the freedom to do a thousand things I'd been unable to, marijuana is truly a miracle drug for me and I need to throw a quick shame-on-you to the FDA or DEA or whoever it was that decided marijuana was bad and restricted it so heavily for so long. JERKS.

But, there are two factors that keep me from medicating consistently with edibles: The first is tolerance. An effective starting dose of edible cannabis is a high one -- much higher than a person could smoke comfortably in a sitting -- and after only a few regular doses a person will start to notice that they need more to get the same effects. And if a person suddenly stops taking regular doses, especially higher doses (which are inevitable if a person medicates regularly in this fashion), withdrawal effects can be uncomfortable for up to a week. (Of course, note that I describe the withdrawal experience as uncomfortable, not painful, not unendurable, never permanently damaging, and certainly much less dramatic than getting off the average anti-seizure, anti-psychotic, anti-depressant, or narcotic. The only withdrawal effects I've ever experienced are irritability and a decrease in pain tolerance, which were only bothersome for a few days, if that.)

The other barrier to regular medicating via cannabis is the cost. Store-bought edibles can run from 5 to 20 bucks a dose, which isn't something I can pay easily. Honestly, the only reason I can afford to medicate the way I do (instead of taking whatever Medicare will give me, which is nothing much useful anymore) is because we live in a sort of "green belt" in which every other person we know here grows and sells their own medical marijuana and half of them are super into bartering with my man for things like car repair, which is pretty amazing. It's all above-board with licenses and verifications, but it's much, much cheaper than the dispensaries, for often the same quality.

I'm very lucky to have the access I do. The difference in my quality of life can not be undersold: before marijuana, I was merely surviving, now I can actually live.




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Sunday, August 18, 2013

Friendship and Illness

I must have rewritten the email ten times.

It took me countless attempts and tears; I was anxious, afraid of saying all the wrong things and being rejected. I wished I could just hide and never have to tell anyone my horrible secret ever again because I'm just so embarrassed at being sick, at being weak, that I would almost rather alienate myself completely from everyone who "knew me when" than have to face their pitying or disbelieving looks. Or to have another person fade away, having apparently decided that a relationship with me is too difficult.

I came across some old pictures of my group of friends from middle school, so I scanned them in and emailed them out. One of the girls, the one I was closest to back then, emailed me back and suggested we meet up. I think she knew about my chronic migraines already, I saw her briefly when they first started, but while working out how we were going to rendez-vous, I realized I was going to have to come clean about how sick I am.

It just filled me with panic. I feel so ashamed, like I'm back at the beginning of getting sick where I think it's all my fault and wish I could wish it all away, so instead of anything productive, wishing becomes a huge distraction. I'd start writing the email, crumple into tears and wishes, and close the window without replying. Again. It took me a while to finally compose a simple message, and when I finally sent it, my anxiety only increased.

How would she receive it? Would she think I was a liar?* Would she never write back and tell all of our old friends that I'm a freak? Am I back in high school or am I a 34 year old woman who's been dealing with chronic illness for over six years? Back in high school, then? Well, I guess bring on the anxiety.

*Okay, if she thinks I'm a liar, she's an asshole and I don't want to be friends with her anyway, but still. Not to be believed by someone you love, or once loved, it hurts more any migraine. I'll never get used to that pain, and I think it actually hurts worse every time it happens.

So, maybe she'll be like, "Whatev, I'll just accommodate her and we'll hang and be bffs 4 eva." Or maybe she'll go, "Huh, steph is clearly a big weirdo now and I'll have to think on this." Or maybe I'll never hear from her again.

If migraines have taught me nothing else, I know that as creatures in this vast universe, we aren't entitled to a damn thing in our lives. Friendship, health, food, freedom - so much of it is luck, it can be terrifying and lonely to realize how vulnerable we all are. But I don't have a choice, I hunger for food and for friendship, so I have to keep searching them out, no matter how starved I become or how toxic it all seems, I know there are nourishing relationships still to be had, and have them I will.

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Friday, August 16, 2013

Short Hair

I cut all my hair off again.

We cut it at home, my boyfriend and I, and we're both kind of shocked it came out well. I wrapped an old shower curtain around me, we buzzed the sides and back to an inch and scissor-cut the top into long pixie. I like it very much. Oddly, this short style feels more feminine to me than my long hair did and I actually feel more comfortable with short hair, though I've had hair past my shoulders for 95% of my life.

For a while now, I've been feeling disconnected from my own image. Pictures don't look like me, though I know rationally that they do. Even the face I see in the mirror only resembles my own. She is older, sadder, fatter, uglier, and I feel bad for that woman whenever I catch her image. Her clothes fit badly, her hair is unstyled, and she always looks tired. As a person who has struggled with body image and disordered eating, I've been unsure how to become comfortable with myself again.

But, cutting my hair has helped realign my mind and my body somewhat. I look in the mirror and I'm finally seeing myself again, not just a haggard, sick, fat, old, tired version of myself, but the real me. I mean, I can still see the weight, the exhaustion, how migraines have affected me and how my skin is changing as I'm seeing the first signs of middle age approaching, but it's not all I see. My face is mine again, without all that weight attached to it. Who knew I was just trapped under all that hair?

I do miss elaborate braids and wearing it all fancy, but I haven't been able to wear my hair like that in years anyway, my constant scalp tenderness makes any but the loosest of low ponytails intolerable. Besides, I'm always wearing a hat outside the house, what's the point of styling my hair to just smush it down?

I was hoping to see some migraine benefits from lopping it all off, but no dice. In fact, I've had a tension-like headache around the back of my head ever since we cut it, almost as if my scalp misses the weight.

The reactions I've gotten from other people have been entertaining. My mother hates it, but she always hates my hair short, so part of the fun of cutting it has always been watching her battle against herself to say something nice. She fights the urge to criticize me, and I know it really bothers her that HER mother (my grandma) gives my mom a hard time for straightening her hair, so she recognizes the pattern enough to not want to repeat it. My grandma thinks curls are THE THING and can't imagine why anyone wouldn't want them and makes a comment nearly every time they see each other. Therefore, my mom strives to be supportive of my hair choices, but sometimes makes this pursed-lips disappointed face, sighs, and touches my head like she's wistfully recalling when my hair was past my butt and took up HOURS of every day. I will never have hair that long again, sorry mom.

So, for the success of my new short 'do, I would like to thank the following people: Anne Hathaway and Ginnifer Goodwin for sporting the same style and being photographed from a thousand angles. The hairstylists I used to work for, and their techniques that I copied. Youtube. My boyfriend, for his epic patience. And C, for buzzing her own head and making it look like NBD.

Cutting my hair off was a feminist act, for me. So many people have discouraged me from going short, they said my face would look fatter (oh no!) or I would look like a lesbian (OH NO!), and those people were both assholes and wrong, because going shorter actually frames my face better, and sexuality can not be determined from hair length.

Moral of my story: If you want short hair: cut it. Or pay someone else to, but don't listen to the naysayers. It's hair, worst case: it'll grow back.



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Thursday, August 8, 2013

Yes, We Cannabis!

Sanjay Gupta came out adamantly against marijuana legalization in any form in 2009. In a segment with Piers Morgan last night, Dr. Gupta completely changed his position, and expressed support for use by patients, stating that "sometimes marijuana is the only thing that works."



(In case there are any embedding issues, here's the link: http://www.youtube.com/watch?v=shIgg42cTME)

This is just a short segment, twelve minutes of empathy and information from Dr. Gupta and Piers, interrupted occasionally by some truly illogical anti-marijuana arguments from a suspiciously crackpotty naysayer. Can they not find someone legit who doesn't like pot anymore? I don't normally watch Piers Morgan, though, maybe that's just his format.

Anyway, Dr. Gupta is airing a documentary on CNN this Sunday, August 11th, called Weed, and I know I'll be watching.

Marijuana is the only thing that helps my head. Painkillers, migraine abortives and preventatives only made me sicker, if they did anything at all. Marijuana eases the pain, the nausea, the irritability, and exhaustion of migraines, it dulls the outside stimulus that can cause me so much pain, and relaxes the tense muscles that can exacerbate a mild irritant into one that flattens me for a week. I smoke pot so I can do the dishes, walk my dogs, do some laundry, do homework, or participate in life in any meaningful way. The stereotype of a pot smoker is someone who lays on the couch watching TV, eats incessantly, and never gets anything done. That's me without pot. Migraines render me useless and inert. Marijuana enables me to get up and have a life.

It's nice to have the outside world validate my experiences.

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Sunday, August 4, 2013

Diversions, Entertainment, and Preoccupations

Self-distraction is the most surprising and valuable survival skill I've developed from dealing with 24/7 migraines.

My favorite, but least used form of distraction is reading. I can't remember not being able to read. I learned at a very young age, and used to compulsively read everything in my sight. Actually, I still do that. But since migraines, my eyes ache when I read for long periods, and I often have trouble focusing on what I'm reading. Because I have to do a fair amount of academic reading for my classes, I've been gravitating towards lighter literary fare and have been relishing the opportunity to read the Sookie Stackhouse books. They are some awesome, fluffy fun.

When my brain won't let me read, but I'm not quite willing to go totally inert in front of the tube, I play me some thinking games! Puzzle, room escape, hidden object, word games, adventure, anything that involves exercising my brain and I'll love it. I play online, free, usually at gamershood.com.

Of course, I spend quite a bit of time without the capability of thinking, and then I turn to tv and movies. I'm still watching TNG, on season 4 now, and on some recent bad days I binge-watched Orange is the New Black and Orphan Black, which are my favorite new shows and I want more episodes now. It's odd that they both start with O and end with Black, makes my brain skip a beat whenever I look at the titles together.

When I'm capable of physical exertion despite my head, I've found therapeutic benefits in cleaning. Our kitchen is full of shelves of boxes and stuff to be sorted from my boyfriend's mom, and I've finally turned back to it this week. I've organized the kitchen stuff and seriously purged my sewing stash, which has been inaccessible since we brought all this crap home. It's still cluttered in there, but I'm finally making progress again, and seeing the results puts my brain in a much happier place. I may go very slowly on this project, but I'll get there.

Clearing out my sewing stash has inspired me to create a few scarves out of old shirts and I even did a little dyeing to save some items from the bin. These were some easy-peasy crafts, fun, not requiring much brain-power or physical exertion and the result of having something new to wear or use at the end of it is such a happy bonus. And even if it doesn't work out, the dye doesn't take or I botched the sewing big time, I get to add it to my out-going donations pile, which is also extremely satisfying.

Other excellent sources of distraction are our sweet, funny puppies. Having another dog in the house has been a challenge but such a joy. Both dogs have social issues, so it's taking them longer than I expected for them to get used to each other, but after more than two months together, they've finally started playing. Not often, and they both still freak each other out sometimes, but when they get the hang of it and start chasing each other around, my smile goes so wide my head might just snap in half. In a good way.

It's been a rough month for me, and I remember musing last summer that perhaps I get the opposite of SAD, because my bouts of depression in the summertime are intense, and much harder to get over than the piddly sad days of winter. This summer's been tough, but I'm muddling through, and I owe many, many days of survival to my above list of distractions. If it was just me and my head, I can't imagine how I would stay sane.

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