Wednesday, July 25, 2012

School and Resources

Remember when this used to be a migraine blog? School hasn't even started yet and it's already taken over my brain.

My counselor is a lovely woman. Also, we aren't communicating well. I was under the impression that she was kind of my educational agent, that I'd go through her for all of my needs, since I have oh-so-many of them. I've been realizing slowly that that isn't the case. She can be amazingly helpful at times, but in the past few weeks I've had some spectacularly frustrating conversations with her.

There was the thing about going to campus, about how it hurts me real bad and can't I please submit forms digitally and register online and do all of this via email? The answer was no until the middle of last quarter and now suddenly it's a resounding yes. Oh, except for financial aid situations, maybe.

And I know this because my financial aid forms for this year still aren't completed. I submitted my fafsa, but because she'd helped me fill out the financial forms last year, I figured my counselor would be on top of it this year, too. I assumed that when I asked her, "Are there any other forms I need to fill out to make sure I can get my disability and financial assistance?" and she said, "No." that it actually meant "No." and not "I have no idea and you better be finding that out on your own or you'll be in trouble come fall quarter."

So, that's what that means, and now I'm in this scramble to register and pay and file forms and it's probably not nearly as complicated as I make it out to be, but it's a pretty big source of stress and confusion right now. I've registered, but can't pay yet, so I'm not sure how long they'll hold my spot.

When I got a hold of Financial Aid, they didn't want to let me submit anything electronically and my counselor also said that I'd have to come in. When I reminded her that we'd just established that I needed to stick to emailing and isn't this why I have a disabilities coordinator (nicer and slightly more subtly, though), her response was pretty much,"Oh yeah. Go ahead and fax it. This once." So, I faxed it all in and they took a week to update my online account to reflect only two out of three forms done, one's been returned as incomplete, and they've added two more.

I emailed my counselor, but she had nothing helpful to say, so I emailed financial aid and hope they'll have more advice than "Come in to the office", because that really doesn't work for me. By the time I'd get there, I'd be confused and irritable and wouldn't understand and/or remember anything they were saying anyway, which would maybe be fine for them, they'd get a signature out of me and we could all move on... until next year, when I AGAIN have no idea what I'm doing because no one explained it to me properly in the first place, in a context I could comprehend.

I'm trying to be patient. This will all be over soon and I'll be stressing about actual class instead!

On the academic side, I'm going to be taking poetry in the fall and I have a feeling that this class will be a challenge. I love to write and to read, and I used to write some terrible poetry myself, in my teen years, but honestly, if I had my choice now, this class would not be on the top of the list. I enrolled in poetry in the way back days and didn't withdraw properly when I decided it wasn't for me, so to get that negative mark off my record, I have to retake it. This is actually the first quarter that I've seen it offered as an online class, so I knew I had to jump on it, in case it doesn't last. I think I'll enjoy it in the end, but I predict that I'm going to have to WORK, and I'm feeling a little intimidated.

On a less stressful note, we went to our sorta-local community assistance place. In our old city, it was stark and huge and the experience was dominated by overhead speakers and bright, bright, bright fluorescent lighting. The workers were unaffected and often disdainful. I never, ever left those buildings without crying at least once from pain, humiliation, or both. But, this place was so different, I wasn't sure how much they'd be able to help us. There were well-used but clean and comfortable couches in the center of the place and a line of old computers against a wall which we saw a woman walk in and use, we found out later that they are available to anyone for job-searching purposes. There were pamphlets about social services everywhere. I tried to look at them all, you never know what will be useful, but it was a sea of WIC and domestic abuse and legal aid, and I counted myself lucky that I even saw the low income auto insurance one and the one about local food resources.

We sat on the couches and filled out some paperwork. We waited a few minutes and our assigned advocate called us in to her little office and started going over our details. She quickly identified a mistake in our utility billing which will save us quite a bit. Then she called the utility company, right there, to start the process of fixing it. She's a pro, this one.

When I asked about food resources, she told us that they host a free farmer's market two days a month. I was shocked. In our old city, we could get a bag of processed foods, most of which I couldn't eat, once a month. Here, I can get actual produce. I'm delighted.

And when conversation drifted to migraines and pets, she also told me about an acupuncturist who operates on a sliding scale, and let us in on who's the most affordable vet in the area. We left there feeling very lucky and like we'd found an empathetic resource, someone who wants to help us and wants us to succeed. After five years of dealing with social services, it's nice to have met someone who still cares.


Sunday, July 15, 2012

It's Not A Break

School's out and it's real life for the summer. I have to stay productive or I'll implode, so I've been narrowing down a few options for keeping myself busy.

It's not that I'm ever really idle, even when I'm collapsed in my chair, in pain and ill, I'm still trying to fold socks or fill out surveys. And when I can move, I'm never caught up on housework, so I've got that to look forward to. But, I need, and deserve, to have a life outside of household chores and the computer.

I've made a few new friends, so maybe it's time for some socializing! I haven't made many friends since migraines, so it's kind of a big deal for me to be spending time with new people. So, this summer, I have been and will continue to partake in social activities like: walking dogs, taking photos, and having interesting conversations.

But, my busy social calendar won't actually take up much time, since I can't handle more than one or two outings a week, and really not at all during heat waves. To fill my inevitable indoor time, I signed up for another survey-type site. I'm still active at several others, but I don't qualify for as many surveys since I don't often buy most of the things they are researching for. And now that I'm avoiding packaged foods, it's dwindled even further. I know, I just said I need to get away from the computer occasionally, but this new site will hopefully give me back a little more income. Christmas is coming!

For personal enrichment, I been wanting to supplement my photography knowledge. I'm embarrassed to admit that I don't know how to use my camera very well. I know a few tricks, but never paid the technical aspect of photography enough attention, and I'm starting to see it in my work. I was thinking of taking a class over the summer, but couldn't afford it, so I've started looking online for free articles and tutorials and I think I should be able to educate myself pretty thoroughly, with a little luck and perseverance. Luck mostly, because my camera's in the process of breaking and I have no funds for a new one. This is upsetting but I have no idea what to do but keep taping it back up and hope for a miracle windfall to replace it before it shatters into bits.

Well, I think that'll about top me off. Friends, photos, learning, and money-making attempts will keep me plenty busy, and school isn't really that far off again, so I'll need to start planning for that right quick.

Didn't I say I needed a break?


Wednesday, July 11, 2012

Nutrition Now

My eating patterns have evolved quite a bit over the years and the nutrition class I just finished has changed them even more.

Before migraines, I was a lazy, uninformed eater. I bought a lot of frozen and prepared foods, ate out whenever I could afford it, and though I did try and purchase more organic and natural items, I didn't consume a lot of produce. I was afraid of most veggies, so we ate a lot of pasta with jarred sauce, noodle bowls, quesadillas, scrambled eggs, frozen burritos, and mac and cheese. Not that a person can't eat a balanced diet while eating these items, a person can, if a person tries. I wasn't really trying, is the thing.

After I got sick, I started reading quite a bit about migraines, and nutrition was a subject that kept coming up over and over. Foods to avoid were stressed, but more importantly, I found advice pertaining to the foods that we should be eating. More plants, everyone said. The experts seem to disagree about everything else, but that one point: Eat more plants. So, I started buying produce without having a clue what I was going to do with it. I'd get it home and google recipes until I came up with something that sounded tasty. There were failed attempts, and there were some rousing successes, and gradually, amazingly, I started to get good at cooking vegetables.

Once I knew how to cook the healthier foods, I had to start working on how to decrease my unhealthy food intake. There were certain obvious pitfalls to avoid, like deep-fried, processed, and fast foods, but I still wasn't sure what good choices I should make. When I was a teenager I tried to go vegan and ended up feeling crappy and getting sick because all I ate was ramen and spaghetti. I've come a long way since then, but I still didn't feel confident at all that I was getting all the nutrients I needed.

Before the class, I didn't eat meat, but I did eat a lot of eggs and dairy, and fish rarely. I'd started making an effort to work veggies into most meals, but didn't always succeed. I'd been consuming nutritional yeast regularly, as it's a good source of b-vitamins, which vegetarians can be low in, but I hadn't taken a multivitamin in I don't know how long. I regularly read food labels, but didn't always know what they meant and didn't always care.

After the class, I'm definitely eating a more plant-based diet, and I always check the veggie drawers first when planning meals. I still read labels, of course, and I know what most of it means now, but I'm not buying nearly as much packaged food as I once did, so my new talent is wasted. Supplements are the same, I sprinkle my food with nooch, but still don't take vitamins. They're expensive and my textbook (which can awesomely be found online) said that as long as a person eats balanced and doesn't have a absorption issue, that supplements are usually unnecessary. (I do, however, plan on purchasing some, because I tend to get anemic and I'm not positive that diet alone will raise my iron stores if needed. (Iron is much more bio-available in meats (which I don't eat) than it is in plants.) Iron deficiency anemia is the most common nutritional deficiency in the world, fyi.)

My class actually encouraged eating dairy, but my curiosity on the subject led me to some independent sources that said dairy can affect some people's bodies negatively. I decided to try and cut down, for migraine, digestive, and other reasons, and I've been surprised by how little I miss it. The first week or two was rough, but since I've reduced my dairy consumption, whenever I do eat it, I end up feeling really heavy and sluggish, and sometimes more headachy. Or maybe that's how I always felt before and I'm only noticing it now because my body isn't constantly bogged down by cheese. I've also noticed improvements in my skin and last month my normally AWFUL cramps were nearly nonexistent. That's the part that's blowing my mind and I almost can't wait until my next period to see if it continues.

The one dairy product I've been hoping to reintroduce regularly is yogurt. I love yogurt for it's probiotic properties and for it's versatility in meals and desserts, but it may have triggered a massive migraine the last time I had it, so I'm experimenting, carefully.

Most of the what the class taught felt like nutrition common sense, but really in-depth. Which vitamin does what to which parts of the body, how metabolism works, how our needs change over our lifetime; these things were interesting, but I doubt I'll retain them for much longer.

What I really got out of the course was a new perspective on food. I learned that we (USians) tend to eat way more protein than we need and too little fiber. I learned that the cultures around the world that base their diets on vegetables, fruit, nuts and fish, in that order, live the longest and have the least chronic disease. I learned that nutrition is important, every day, and that what we eat now affects us for the rest of our lives. I learned that if we can make healthier choices, if we can afford fresh or frozen produce, if we can buy local, organic meats, if we can make all of our meals from scratch, without preservatives and artificial ingredients we don't need, we'll feel better and live longer.

I know, it's idealistic. A lot of us can't afford fresh, healthy food. A lot of us can't even access it. A lot of us don't have the time or energy to make meals from scratch. A lot of us have health issues that wouldn't be affected at all by diet change. But, a lot of us aren't making changes that we could, and it's those changes we should all be thinking about right now. Cut down on bacon, or make one vegetarian meal a week, or stop salting your food before you taste it (my latest challenge), or chop up some bananas and strawberries to dip into that chocolate for dessert. It can be the little things that add up to big changes in the end.

Here's a list of some meals I've made recently, to give you an idea of how I'm eating now:

-Halved, roasted acorn squash, covered with a mountain of a wild rice/lentil mix to which I added onions, roasted garlic, mushrooms, almonds and pineapple.

-Soft tacos stuffed to the brim with wild rice/mushroom/lentil/almond/pineapple filling*, roasted eggplant, butter lettuce, a little fresh tomato, topped with a cool yogurt dill sauce and a drizzle of salsa verde, for funsies.

-Roasted eggplant* and potato* burrito

-Grilled tilapia* sandwich on whole wheat bread with a fat layer each of cucumber, tomato, and romaine, and a healthy sprinkling of sauerkraut.

-Soft tacos filled with lentils, mushrooms, caramelized onions, lettuce, tomato and avocado.

-Tons of chopped, steamed broccoli and bell peppers over baked golden potatoes*, covered in a roasted garlic and mozzarella sauce.

-Egg and soymilk omelet scramble, with a big bunch of baby kale, mushrooms, onion, garlic, with some mozzarella sauce* over the top.

-Grilled zucchini and bell peppers over leftover wild rice/lentil mix*, topped with caramelized onions

-Quesadilla stuffed with grilled veg*, caramelized onions* and wild rice mix*, with a thin layer of mozzarella.

So, I'm eating well, for the most part. I still eat unhealthy foods when I really want them (toaster oven s'mores ftw), I just make sure to consume them in moderation. I can see that there's a lot of repetition in my menu, partly because I get into food phases and crave the same five foods for weeks or months, and mostly because I purposely make huge amounts of whatever's for dinner, so I can use the leftovers for the next meal or eight. In the above menu, I've put an asterisk* next to the items that were leftovers for that meal. Recycling and repurposing previous meals saves me precious time and energy in the kitchen, making it possible for me to cook as much as I do. Most of our meals are made from leftovers, simply because I don't have the ability to start from scratch every time. I know my limitations, now it's all about learning the workarounds.

Oh, and you may have heard me whining about how I was only going to get a B in that nutrition class and I'd worked so hard and my woe threatened to swallow us all, but then final grades were submitted and I somehow got myself an A+.

Asskicking, yes I am.


Wednesday, July 4, 2012

Having Heat Hate

Summertime sucks the most.

It's hot, it's bright, and everyone wants to do everything outside, in the bright heat. And staying home isn't always a respite; the temperature climbs even in our shady, mountain forest, and when it gets hot out here, it gets humid, aaaand we don't have air conditioning.

For me, a heat wave is a guaranteed migraine. I try to beat the heat with frozen washcloths, a spray bottle of ice water, cool showers, wetting down my hair, drinking tons of water and iced tea, slurping on popsicles, and most importantly, by having a fan pointed straight at me at all times.

As for getting out and enjoying the summer, that's not really something I do. I barely tolerate the summer, at best, and in return, summer tends to try to kick my ass as hard as it can. But I am forced to go outside sometimes, into the bright, white-hot, summer sun, and for those occasions, I prepare, prepare, prepare. Often by making lists. Oh, look, I've made a rather rambly list for you. You are very welcome.

In The Summertime, I:

1. Carry with me at all times: Water, extra water, sunscreen, sunglasses, an umbrella, a hat, and an extra hat. It can be burdensome to have all this baggage, but when I need something, I Need It, so the heavy bag (or two) is worth it.

2. Wear loose, lightweight clothing because my body is totally intolerant of constricting, non-breathable fabrics when it's above 75. I've burst into tears of migraining, confused rage in public because I was wearing the wrong bra on a hot day, so this is something I have to be very careful about.

3. Limit my exposure. I can't spend hours in the sun without the next week or two being compromised, so I arrive late, or leave early, or both if I have to. I miss a lot of the summer fun, and it makes me sad sometimes, but my health has to come first.

4. Count on recuperation time. If I want to make it to that family barbecue, I have to plan to do nothing for at least a day following, and up to five. The dishes will pile up, the dirty laundry will gain sentience, and clutter seems to breed on its own until I'm able to climb back out of the hole and then I have to clean what I've missed cleaning and end up back in that same hole again. This cycle happens in winter, too, but it's much more extreme in the heat. All I can do is expect it and plan for it.

5. Say no, a lot. It's just not worth it to brave the elements, quite often. I can see these people in a few months, when it's not as difficult for me to be out of the house. Perspective is important when it feels like everyone is having fun without you.

This post was written for the July 2012 Headache & Migraine Disease Blog Carnival, hosted by Diana at Somebody Heal Me.


Monday, July 2, 2012


I've really been fighting the blues.

Desperation, suicidal thoughts, feeling the urge to self-harm, feeling isolated and angry, lonely and sad, stressed and anxious; my life isn't what I want it to be, not at all. I'm fighting every day to make it better, but the struggle is starting to feel like it's defining me. Is this all I am anymore, pain and strife?

It doesn't help that I feel disapproval all around me. If I can smile, why can't I work? Only one class at a time, I'm obviously not trying very hard. People who are negative, people who discourage, people who look bored when I try to explain how hard I work to be only a little productive, they wear me down. As much as I try to be a honeybadger, we are social creatures and being told that I'm not doing it right, or well enough, can be defeating. All this effort, and I'm still a disappointment. All this fight, and I'm no closer to happiness.

I've been told that people just don't understand, that I'm so private about my pain, that I put up such a front, that people can't see what I'm going through. So, I reached out on Chronic Migraine Awareness Day and posted a status update on facebook. I said, "Today is the first Chronic Migraine Awareness Day. [Posting a serious, personal status] isn't usually my kind of thing, but I happen to have chronic migraines. There is no cure, and for many of us, no effective treatments. This neurological disorder, which is most closely related to epilepsy, is disabling and life-changing for the 2% of the population who are affected. If you'd like to donate to migraine research, here's a good place to start:"

Not a single person commented, liked or shared it, besides my partner, and not a single person liked or commented on his post. Maybe they didn't know what to say. Maybe they didn't care. Whatever the reason, being ignored hurts.

Exercising has been difficult. I wake up stiff and sore almost every morning, and the tiniest overexertions trigger my head faster than grandma's perfume. Light yoga, some easy weights when I remember I have them and short, slow walks are about all I can manage lately. Unfortunately, moving my body and getting my blood pumping is my favorite form of therapy when I'm feeling down, so my inability to really move is affecting much more than my muscle tone.

I just finished up my nutrition class and I've been beating myself up because I got a B. I worked as hard as I could and still couldn't reach my goal, which was an A+, of course. I'm aware that perfectionism is self-defeating, I'm hoping my perspective on this will improve whenever this depressive fog lifts.

I'm tired, physically and emotionally. It's exhausting trying to be happy through pain and the limitations of this disease can make life so boring. It's tempting to simply give up, let the darkness take over and let go of this life turned awful. Sometimes I just wish I could get a break, a vacation from the stress and pain. I'm tired of being so poor it's impossible to feed ourselves healthfully, I'm tired of wanting more from my life.

All these stresses, big and small, add up. When my head gets bad, when my burdens seem too great to bear, the only thing that keeps me from killing myself is the toll it would take on the people I love. I'd rather live the rest of my life in agony than leave the scars of suicide on those I care about. I keep pictures everywhere to remind me, on my bad days, of what really matters. They help bring me out of the dark and back into the dim. I may be having trouble shaking this depression, but I'm sure as hell not going to let it shake me.