Sunday, August 29, 2010


The heat has been beating me down, hard, and getting out of the house has not been a priority. But this morning I awoke with the desire to walk half a mile to the farmer's market, even though I knew I'd be going to my parents' house for dinner later. Most of the time when I do this, it ends badly. Going out in the heat, in the sun, subjecting myself to noises and smells and then carrying several pounds of produce home would very likely trigger a migraine. And having already committed to a reliably exhausting social activity, well, I was practically guaranteeing it. But such is my life and I won't let fear rule me. So there.

So I woke, I wrangled my man and dog, I sunscreened up, packed my bag and headed out. I stopped twice to drink water and took my time, walking as slowly as I felt necessary. Which was actually a decent speed, thanks to some training on the treadmill, yay me! I arrived at the market and slowly assessed my options, not letting myself get overwhelmed by the choices or the people. Once I had successfully purchased my produce we walked back home. A slightly slower clip, a few more water breaks and a pee break for the dog made the walk back seem endless, especially under the weight of the the summer sun. I caught myself wilting and remembered my umbrella. I walked the rest of the way home smugly under shade of my own manufacture. Again, yay me.

Got home and recharged only briefly before heading over to my parents' house for some socializing and dinner. A visit to their house is never a passive for me. Besides the normal talking and eating, which is draining in its own right, I cut my (step)dad's hair, straighten my mom's, then help her pick out outfits for the next week or two, including shoes and jewelry. It can be taxing, but it's nice to be able to do things for other people, and to feel needed. After I finished my chores (heh) I accepted payment in the form of an amazing dinner. My dad is a SERIOUS COOK. Tonight he made seafood paella on the grill. It was pretty phenomenal and a wonderful ending to this fantastic day. Oh. And then there were cannolis that were so good I'm pretty sure eating them counts as sex.

Then I came home. We talked and laughed about this great day we had, the first in so long. I did some stretches in a hot shower and made myself some mint chamomile tea. It's a beautiful life, I remember.

I really needed this day. This wonderful, charmed day that was not without pain but was totally without negativity. I am so happy right now.


Thursday, August 26, 2010


I think I officially have a needle phobia now.

I got an order for a massively comprehensive blood panel and urinalysis from my doc. I was and wasn't thrilled. I mean, yay tests, maybe something will come back that's helpful. But then there's the needle/blood thing. I've learned to warn phlebotomists, and explain my mild aversion. It's never been a big deal, I just don't look, and they are required to warn me before the needle goes in. As long as these things happen, I'll walk away smiling. Unfortunately, the last few times I've had blood drawn and/or an IV it's taken more than one try to get blood flowing and it's been mentioned more than once that my veins are not easy. I don't know what changed, I used to never have a problem. Since the last guy who stuck me mentioned that I might be dehydrated, I drank a ridiculous amount of water beforehand, hoping it would help. So, I don't know if it was me, or the phlebotolady, but she stuck me twice and got nothing. And she forgot to warn me the first time and only sort of warned me the second time with some weird baby talk, "Aaaaaand eeeeaaasy now." What? And then she spent five minutes prodding at my arms and tying the rubber tubing ever tighter to try and find a source of blood in my apparently bloodless limbs. I suggested tapping my hand, since that was the last successful stick I'd had but she demurred, saying that fourteen vials of blood would collapse those small veins. Fourteen. And then I started quietly crying. Not noticing, she continued to blather on about how she would probably have to stick me at least twice anyway, since that much blood would likely collapse any of my teeny veins. Then she laughed a little and looked at me. I was nodding, tears rolling down my cheeks, trying to be strong but failing so miserably.

I think that freaked her out because she finally admitted defeat, which I appreciated. I'd rather she admit she was stumped than keep trying and failing. She suggested we try the guys downstairs, a different lab company in the same business complex. I wasn't thrilled, but really did want it over with. We went downstairs (more nauseating elevators, weeee!) and waited. I was getting more and more stressed. I took a valium, which never kicked in. I suggested that we leave, that I was too stressed out, and then the door opened. Crap. But the new and improved phlebotoguy was a humongous, gentle-mannered man. And I think my boyfriend warned him that I was teetering on the edge because he quietly explained every step of everything he was doing, and the next few that were coming. He had me lay down for the actual draw, warned me gently but clearly, (no babytalk necessary, amazing!) stuck me, then reassured me when the blood started to flow. Once he got down to the final three vials, he started counting them down. He was fabulous. But I still cried a little anyway. I was okay, just mostly relieved and crazy-stressed with the beginnings of a migraine making me even more frazzled.

As soon as it was over, I pretty much bolted out of there, despite being dizzy. Did I mention I'd had to fast, too? As soon as I got out the door, I dug an apple out of my bag and ate it in about three bites, but I was already seeing spots. I've had ice on my head ever since. But at least it's over, and hopefully that'll cover every blood test they could possibly ever run on me. Though I'm a little worried about my urine test. I drank so much water, it was totally clear. I hope they can still get their readings out of it. Whatever, I can always pee in another cup.

Thus ends another eloquent blog post.


Friday, August 20, 2010

Football, Other People and Onions

My google alerts has been blowing up my email with stories about an american football player, Percy Harvin of the Minnesota Vikings, who has migraines, and has been sidelined from practice. Poor guy. I mean, the migraines are bad enough, but to have every sports related news outfit commenting on it constantly has got to be stressful. Thankfully the paparazzi has not yet gotten wind of my mysterious chronic migraines, but I expect them any day now.

My boyfriend was born in Minnesota and still has family there. When he reconnected not too long ago, someone sent him a care package. One of the things they sent was a bright purple, adjustable, Vikings ball cap. Now, I'm the football fan in the house, and I'm a 49ers girl, if anything, but when my head started up with the crazy scalp sensitivity, that hat, on its loosest setting, was the only one I could wear.

Unfortunately, the Vikings had just been to the superbowl, so my bright purple ball cap was a political catalyst every time I left the house. I was a poser, or a johnny-come-lately, or a traitor. I was yelled at in the streets. Really. To those people, I made an uncomfortable face and said, "It's just a hat. I've got a migraine." If they said anything else, I didn't notice because I was walking away and had earplugs in.

Oh, but the earplugs. Amusement has been ensuing with the earplugs. So, I've been using them consistently for a long time now. I'm comfortable with them, my close friends and family are comfortable with them. Nobody really thinks about it anymore, until someone is talking to me for five minutes and I don't hear a word of it. This happens all the time! And some people get so mad! I don't apologize for it anymore. It's just as much their fault as it is mine, really, because who just prattles on without noticing my total lack of normal social response? Hilarious. Though, I imagine it's frustrating to have just wasted your breath, and have to repeat yourself. And it's probably embarrassing to some people because they feel purposefully shunned, as if my earplugs have it in for them. Or my migraines. Or me.

I get that same reaction with the scent thing A LOT. People get SO UNCOMFORTABLE when I tell them that their perfume/air freshener/incense bothers me. I used to apologize for this, too, but I've stopped that nonsense. And I've learned to kind of enjoy the space that hangs in the air after I announce the presence of an everyday toxin. It's a test of character for the people around me. Can they adapt? How will they react? With anger, disbelief, irritation, pity, or interest? The last is a delight, those people are rare. Nobody wants to hear about other people's problems. Not that I want to talk about mine all the time, but every aspect of my life is influenced by my head, and it comes up pretty frequently, so the people who roll their eyes every time I say migraine, it's noticeable.

Someone once asked me, "We have to make accommodations for you, now?"


Or I leave. I mean, pick one. And don't act like it's a surprise when I LEAVE. It's my health. And then they get mad. And I go from irritated to bemused, because, really, who should be pissed off, here?

But let's go back to the people who show interest. The ones who treat me like a normal person, who happens to have an illness and disability. Those people are so refreshing. They ask questions, they offer to help, they turn down or off any triggers that I mention. They wash their perfume off and put the scented oil bathroom tchotchke outside. And then, ideally, they let it go and we can go back to normal conversation. There are a few weirdos who want to talk about nothing but my head. They like to pat my hand and "comfort" me, quiz me about my treatments and my symptoms. I like to stand up and walk the hell out of there.


I had a really great breakfast this morning, green onion and tomato with scrambled eggs. I have read, quite frequently, that while onions are commonly a migraine trigger, green onions are widely accepted as the exception to this rule. Well, they are wrong. Green onions have led directly to an oniony feeling migraine. I knew I should have cooked them longer, but the exception made me cocky. Next time, they will be unrecognizable mush before I turn off the heat. Lesson learned: There are exceptions to exceptions to rules. And I need to go lie down.


Monday, August 16, 2010

Internetting With Migraine

My computer is a confirmed migraine trigger. This is less than desirable. Several months ago, I had to go offline for a whole week because every time I looked at the screen I had severe eye throbbing and temple stabbing, plus nausea, wooziness, exaggerated afterimages, and the sense that the words were moving on the screen. Since that week, I've learned a few tricks to keeping the migraines at bay.

Every computer I use, if even for a few minutes, I adjust to suit my needs. Toying with display colors, screen brightness, and setting the refresh rate at its highest are tasks that I am so comfortable with, I could make these changes with one eye closed. And have. On a PC, you can find these settings in your Control Panel, under Display. I prefer the High Contrast Black color scheme, which turns letters white and the background black, and I always have a dark-colored, non-patterned wallpaper in the background.

The next most important change I make to my computer is my internet browser. In both internet explorer and firefox, the colors can be changed by choosing the Tools drop-down and then clicking on (Internet) Options. In firefox, click the colors button, and don't forget to uncheck the option for pages to "use their own colors" which would override your settings.

Firefox: Tools-->Options-->Colors

On internet explorer, the colors button is under the general tab, but you'll also need to click the accessibility button to disallow webpages from overriding your preferences.

IE: Tools-->Internet Options-->Colors/Accessibility

Again, I go with a dark background and lighter letters, white or gray or light blue sometimes. If I'm feeling sensitive, I'll block the automatic display of pictures, and stop java from auto-running, which can help to cut down on nauseating animations and unpredictable bright colors.

I always make sure I've turned down the sound. Too often have I innocently stumbled onto a new blog or website only to be assaulted by music or advertising. Sudden noise can send me from a 2 to 12 in a matter of seconds, so I'm very careful about this one. I aim to keep the sound on my computer on mute, if it's not actually in use, but I've started just avoiding websites and blogs that have noises that load automatically.

Also really helpful, I have a volume control above the keyboard, so if I am taken by surprise I don't have to navigate the cursor to that tiny little volume button, I can just reach over and stab blindly at the mute button. I must say that one of my favorite things in life right now is mute buttons. On television remotes, car stereos, and on laptops, the mute button makes every day a (very quiet) holiday.

With all the potential for triggering my very sensitive head, one would think that I'd stay away from the computer. I'd watch TV instead (which, btw, is also somewhat triggering, but in a different way), or read a book (heh, also triggery), or stare at the walls vacantly (not a trigger, but very boring). Why would I subject myself to the possibility of pain?

Because the internet keeps me connected. Email, instant messaging and various social networking sites let me be a part of the world, even when I am forced to be so apart from it. And the internet keeps me educated: healthcentral (Speaking of, they keep an updated list of clinical trials for migraines and I just emailed about two that I am interested in!), webmd (symptom checker, anyone?), and google are my best friends when it comes to keeping up to date with chronic health and patient issues. Also, and sometimes most importantly, the internet keeps me distracted: Youtube (Have you guys seen Old Greg? It gets funnier every time I watch it. (Also, NSFW.)), Gamershood (when I can't escape my room, I play "escape the room" games. Har de har.) and my favorite drug in this entertainment cocktail, Hulu.

Even with these changes (and distractions), sometimes my eyes just can't handle the reading, or the light, or whatever it is that day that is just intolerable, and the computer has to be turned off. On those days, I kind of relish the quiet. My mind takes a long, lazy stretch and welcomes the break from the the usual barrage of information overload. The vacation is nice.

But I wouldn't want to live there.


Tuesday, August 10, 2010

Coffee Will Eff You Up (Or Maybe It's Just Me)

Oh man, I have no tolerance for caffeine anymore. I only consume it medicinally, to treat my head, and never more than twice a week, per the rules of rebound headache avoidance. But I still love the taste of coffee, so I have to be really careful when I do drink it because I can easily forget, drink two cups and end up giggling maniacally and twitching until four in the morning which leads the following four days to be face-meltingly painful and somewhat crazy-making. And here I am.

I love nature shows lately. When my head is really bad and I feel like death and/or dying, watching a documentary about how the sun is going to fry and then freeze our solar system in a million trillion years or so, or about how an asteroid named Apophis might hit us in 2036 is somehow comforting. It makes my experience smaller, I guess. Puts it in perspective.


I love electricity. (I'm a little delirious, but stay with me. Electricity is pretty great, you know.) Without it, I wouldn't have my treadmill, or sewing machine or dishwasher and they are the holy trinity of household appliances. And my blender. Let's make it a quartet. Actually, I shouldn't neglect the other appliances that make my life easier, because they might find out and stop working. Like my air conditioner and fan. The refrigerator. The microwave. A special shoutout to the greatest little laptop that could and the waterpik. Am I just naming appliances now? Toaster.


I wonder how new acquaintances see me. Probably aloof and snobby, or shy and weird. I smile and wave to the neighbors, when I see them, and make occasional token efforts with my boyfriend's friends. I'm not trying to narrow my social field, but I don't have the energy for casual friendships anymore. People that I don't really like tend to suck the soul right out of me, so avoidance is survival. And casual social interaction is taxing, at best, and I'd rather save my energy for cleaning my house, training my dog or spending quality time with my man. Maybe not in that order.


Hey, I taught my dog a new trick! The one where you put a treat on their nose and they have to wait to eat it. She's been comfortable with sit, stay, up, down, shake, roll over and drop it for years but we had hit a bit of a wall with new material, so learning a new trick was exciting for all of us. Though I think she hates it. As soon as I put the treat on her nose, her ears go back and she gives me the victim-eyes. I am one of those people who talks for my dog and her reaction is very, "Moooooom! Why are you doing this to meeeee???? Just let me eeeaaaat iiiiit! ZOMG TREEEEEATS!" She's a whiner, but she waits. Such a good dog.


I've been crocheting plastic bags. I know, weird. But they are easy and quick (with my massive hook!) and they might be perfect for christmas gifts. Look at me, thinking ahead. There is something really cool about making trash into something useful.


So, this is what you get when I overindulge in caffeine four days ago. Scattered, irrelevant blogging. Let's bring it back to the head with some awesome links of interest: An open letter from a doctor to all chronically ill patients, this month's Migraine Blog Carnival is up, and magic mushrooms can be useful in (cluster) migraine treatment. You're welcome.


Wednesday, August 4, 2010

How I Cope on A Bad Day

When I saw that the theme of this month's Migraine Blog Carnival (hosted by the ever-lovely Diana at Somebody Heal Me) is "How do you cope with your headache disorder?" I was all, I totally know this one! I write about coping quite a bit. In fact, as of this moment, dealing is my most frequently used tag. I write about it so much, I focus so much of my energy on handling myself, my migraines, and my life, that I can sometimes lose the forest for all the trees. So now's a great time to revisit the subject. How do I cope? Well, it really depends on the day.

On Good Days, I don't even think about it anymore. Avoiding major triggers is habit by now and coping with low levels of migraine activity is second nature. My primary focus on Good Days is keeping my stress low, second is getting stuff done and third is having a good time. (Those last two might be switched.) So, I make quiet plans with friends and family, I do household chores as I feel capable and devote time to productive hobbies, like sewing (which I am getting better at!), writing and photography. Ergo, when I'm talking about coping, it's not the Good Days I'm really talking about. It's not the Good Days that I struggle with.

And I really have two types of Bad Days. On my (Good)Bad Days I am strong and flexible, and bend in the wind without breaking. I take care of myself easily, I ice and medicate, distract myself with silliness and forgive myself for my weaknesses. On my (Bad)Bad Days I am brittle like old glass, and am prone to shattering everywhere, cutting anyone who comes near. I give up, wish for death, slip into depression and blame myself for everything, everything, everything that has gone wrong.

On the (Good)Bad Days I hurt, but I've still got my wits about me. I am slow and careful and do my best to avoid antagonizing the beast by keeping it dim and quiet. I try not to bend, reach, or lift. I take a hot shower, request a foot rub, medicate regularly and responsibly, and eat and drink well. Watching funny tv or playing puzzle games keeps my mind from dwelling on the negative. Regular, gentle stretches keep my body from stiffening from the stress of pain and a little productivity, like replacing a button or feeding the dog, can go a long way to improving a darkening mood.

But when the mood is already dark, when I'm being held hostage by pain and despair and can't find my way out, it's my loved ones who pull me back out. My boyfriend, my friends, my family, my brother. My boyfriend is there, in the trenches with me, getting dirty. He is my strength on those (Bad)(Bad)Bad Days. He feeds me and holds me and keeps me from self-destructing all over myself. My friends and family, I don't usually ask them for help, literally (though I often wonder how someone goes about doing that). It's more the thought of people who love me and know me, who accept me and don't judge me, who encourage and comfort. I look at pictures, I remember Good Days. And, most importantly, I remind myself of the consequences of giving up. How many people it would damage, how they would carry that pain forever and would never be able to think of me without feeling that horrible hurt. My brother. I would live the rest of my life in torment gladly if he would never know pain. I could never leave him. On my bad days, it's about survival. And sometimes I have to guilt myself into it.

I've been here three years. Not long, really. But my previous life seems like a dream. Was I really so wild? So energetic and free? I was spontaneity and intensity. I think. It's all so hazy now. Maybe I've idealized it, how easy and fun everything was. But it does no good to dwell, either way. Maybe I'll get it back, or maybe my life will continue down this difficult path. Everything changes, for better or for worse.

Mostly, I think I cope by recognizing the truths; I have pain, but I have love and a roof and I can still laugh, just quietly.