Sunday, February 27, 2011

Being Complex

By now, I'm sure most of you have seen the footage of a reporter, Serene Branson, whose speech became garbled nonsense on air. There was initial speculation that she was intoxicated or having a stroke, but no, it was a migraine. I watched this news report, in which she is interviewed about the incident, and I cried.

I cried because of the fear and confusion in her face, as she realizes she can't make the right words come out. And then I cried again, watching her watch the footage. She couldn't hide her embarrassment, and I know exactly how she feels.

I've lost my speech to varying degrees. As an obsessive reader from very early childhood, I've always had an extensive vocabulary, but now it's pretty common for me to mix up words, or forget them.entirely. ("Let's go to the pony. No. The poke. No. The park. Yes. Let's go to the park! Quick, before I forget it again!") I've had a few instances of speaking straight gibberish as Serene did, though, I don't keep talking. As soon as I realize that I can't make the words come out right, I start crying. Wish I wouldn't, but there it is. I've also had quite a few experiences of not being able to talk at all. I just can't organize my thoughts enough to make my mouth work. It's all very disconnected and scary.

If I hadn't already been so suddenly stricken by all of my other migraine symptoms, I would have thought I was having a stroke, too. But since I'd already had experience with surprising and strange neurological things happening to me, with or without head pain, I was semi-prepared for those bizarre symptoms. When I first reported the symptoms to my neurologist, he hardly batted an eyelash and reassured me that I was, indeed, experiencing a rare type of aura. But he did also suggest that I call the office, or 911, if new symptoms crop up, don't just assume anything. And then he told me about the FAST acronym for stroke self-diagnosis, which does make me feel a little better when things go banana-shaped.

If you haven't heard of FAST, let me enlighten you briefly. If you suspect, even a little, that you are having a stroke, check the following::

Face: Smile and look in a mirror (or ask someone nearby). Is your smile crooked? Does one side of your face droop?

Arms: Raise both arms in front of you. Does one arm drift downward?

Speech: Try to say something simple, like what you had for breakfast. Does your speech sound slurred or strange?

ime: If you observe any of these signs, call 9-1-1 immediately.

According to this acronym, my speech symptoms could be indicative of a stroke. But I'm not going to go to the ER every week or so. Instead, I check my face and arms (Heh, I guess my acronym is FAT) to see if either of those are presenting strangely. This strategy, as well as reporting any new or severe symptoms immediately, is doctor and patient approved. And so far, so good.

I've become pretty comfortable with all of these wacky symptoms. They can still upset me, but they don't scare me nearly as much as they used to. Other people, however, don't respond as casually as I do to slurred speech, et al. I get a lot fo side-eyes and adorable questions, like, "Are you on something?"

That, not the symptoms, is really upsetting. When eyes are rolled at me, or impatience in shown, or disbelief, I just want to curl up into a corner and die, or rage out on the closest ignorant jerk. Either/or. I've gotten cozy with my invisible disability, being able to pass as neuro-typical for short periods is very convenient. Outing myself involuntarily makes me feel vulnerable. And I've never been into vulnerability much.

I'm working on that. I can't control other people, only how I much I give a crap about them. But if people like Serene, people who have visibility and a way to spread a message, keep speaking out about their migraines, maybe I won't have to get that thicker skin.

Dear Serene, thanks for talking about your migraines publicly. That was pretty cool. Love, steph


Monday, February 21, 2011

Guest Post: The Joys of Life Without Health Insurance

I'm taking a little break this week, but I still have some top quality migraine content to share! So, please give a warm welcome to a fellow migraineur and blogger, and my friend, Christine.

Hi everyone, my name is Christine. I write about eco-friendliness at Simple Savvy, love agave ketchup, and have been getting migraines once or twice a week for the past five years. I er... also don’t have health insurance.

I used to live in New Hampshire, where this isn’t an unusual occurrence. There are a lot of things like that in New Hampshire. People expect you to tough it out. “Live free or die” is the state motto, where “free” means, “don’t butt into my business, thank-you-very-much, and I don’t want to know about yours.” I’ve had to go to extensive measures managing my triggers, but doing so enables me to handle the migraines with OTC meds and some holistic remedies. Well, for the most part.

Mr. Savvy and I moved to Connecticut last month to be closer to my family. We were also escaping from a bad housing situation. I’d tell you details, but then you’d get nightmares! Suffice it to say, we didn’t get jobs before we moved. We assumed that one or both of us would be able to find something with health insurance included once we got down here. So far, nothing -- state of the economy and all that. Again, my migraines are manageable with over-the-counter pills. It’s not awesome, and it’s not easy, but it’s my way of coping, so I’m okay going without insurance for a little while.

Well, the inevitable happened: I got a migraine that needed more than I could give it. It was one of those migraines where you’re surprised by the intensity and knocked on your ass by the length. None of my usual coping mechanisms touched it, and it gave every indication of continuing forever. I was unprepared for it, and Mr. Savvy and I decided I needed a doctor to give me some heavier duty meds. In general, I like triptans. They work for me and I feel okay taking them since they’re on the mild end of migraine meds. That, and walk-in clinics usually have no problem prescribing them.

The ever supportive Mr. Savvy found a clinic, rustled up my health records, and figured out how to get there. He guided me through the check-in process and sat with me while the doctor made me wait. And it was a long wait.

And then suddenly, the doctor came in and I was addicted to narcotics. I don’t know how it happened. Maybe it was the lack of health insurance, but the doctor lectured me for a good fifteen minutes about how he was going to give me Percocets but I shouldn’t go “doctor hopping” for prescription narcotics because the police catch up with you if you do that in Connecticut, and he doesn’t know how things were in New Hampshire, but it’s just not tolerated here in the land of civility and snobbery. Or something. He also told me I could have meningitis, or maybe there’s a tumor growing behind my eye, insinuated that Mr. Savvy is a bad husband, and seemed flabbergasted that I had no one but myself managing my migraines. No, I couldn’t possibly have done any research about my condition, or know anything beyond what HE knew, which was, admittedly, very little. But anyway. He also checked me for track marks.

It was subtle -- he partially pushed up my shirt sleeve and made a big deal about how the blood pressure cuff wouldn’t fit around my wrist (wrist! not even elbow!) with my sleeve only pushed up partway. So I rolled my sleeve all the way up to my shoulder. He turned my arm inside out, saw the lack of track marks, cuffed me, and took my blood pressure.

He then refused to listen when I told him that in fact I did NOT want narcotics, a simple triptan would do. It took both Mr. Savvy and I repeatedly saying, “triptans. I would rather have triptans. Give me some triptans” for him to get it. And when we (used loosely here -- Mr. Savvy did most of the talking) confronted the man about accusing us of being drug users, not wanting narcotics, and never doctor-hopping before, he was all, “Oh right, well I’m just letting you know. In case you decide to in the future.” It couldn’t be more plain that the man didn’t believe a word we said.

Sigh. I eventually got the meds, got the help I needed, got rid of the migraine. I don’t remember ever feeling so low before over a doctor’s visit. I’ve certainly never been accused of abusing drugs. Lying about the migraines, making up the frequency, intensity, food triggers -- sure. That’s an everyday occurrence. But narcotics? Never crossed my mind.

And you know what gets to me the most? The fact that I can laugh about this, that I almost have to. It’s so typical of chronic pain experiences that there’s nothing else to do except use this as a good line at parties. “One time, this doctor accused me of being addicted to drugs. Har har!”

You can read more by Christine over at Simple Savvy, the simple living blog where migraine posts are in short supply, but there's plenty of puppy love to go around.


Monday, February 14, 2011

For Valentine's Day, I'm Wrapping Up Christmas

There were some loose ends from Christmas that have been nagging at me. Pictures were taken but have remained unposted, and leftover baked goods were taking up valuable real estate in my freezer, long past their expected move-out date. So, I woke up today with a plan.

I gave everyone I saw during the holidays a crocheted plastic bag and some muffins, banana or pumpkin spice. I was panicked all December about making enough muffins for the masses, so I made way too many. But instead of handing out even more to friends and family, I decided I wanted to distribute them to people who don't normally get home baked muffins, the homeless.

I called a few shelters, but they refused them, so I determined that we should take them to one of our neighborhood parks, the one that is always filled with homeless and poor people. I didn't plan to do it on Valentine's Day, but it worked out perfectly. The weather was cloudy today, but not too cold. I wasn't feeling amazing, but I was well enough to walk a mile or so, and do a little talking and smiling. I was a little afraid of getting a bad reaction, but everyone was really nice. Some people said thank you and some didn't. One man was sleeping, so I left a muffin next to him on the bench. A group of kids made jokes about whether they were edible, until I smilingly said they didn't have to take one if they didn't want one. One boy laughed and said he was just kidding, banana please! Some people said no thanks, and that was ok too. It was nice to be outside, talking to others, sharing food and making people smile. I spend so much time in my house, and in my head, that it's easy to lose perspective. Today reminded me that I am a citizen of this world. And I am very proud to have fed a small portion of my comrades.

The boyfriend and I were arm-linked and silly on on the walk back home, a little giddy on giving. He suggested that we should do it again, maybe try to make it a tradition, and I heartily agreed. Happy Valentine's Day to us.

So, now that I have all of this freezer space, I feel I should empty out my "to blog" photo folder a little, too. Specifically, those christmas bags have got to go. 

I kept this water-bottle sized bag.

This was the last one I made. I felt pretty fancy with the color changes.

Tri-color close-up!

Ahhh, that's better. Merry Christmas. Happy Valentine's Day. And to all a good night.

Friday, February 11, 2011

Gardening, 2011

I was hesitant to garden again. My last one was nearly two years ago. It started out with sprouting a few seeds from grocery store produce. Then a few more. Then a sad seedling had to be saved at the farmer's market. And wouldn't it be nice to grow our own salads? Before I'd really thought it through, I had a couple of tomato plants, three kinds of peppers, strawberries, eggplant, zucchini, greens, some carrots and radishes, and several herbs, including mint, basil, oregano, stevia, rosemary, feverfew and chamomile. Even with my boyfriend filling in for me constantly, I didn't do much else that summer but garden, too often in the bright, hot sun.

I should have anticipated that gardening would be rough on my head. If you go back to that post I Iinked and try to find the follow-up I promised at the end there, you won't. I took a few pictures over the summer, but I never got around to writing about it because I was struggling damn hard not to hate every other second. When I wasn't tending to my 37 tomato seedlings or trying to keep the whiteflies off the zuccs, or fighting with the landlord over water-related disputes, I mostly slept. The sun, bending and crouching, manual labor, and stress all tend to be migraine triggers. That summer, they worked as a team.

So, last year I was not interested in gardening in the least. Besides keeping the plants I still had alive, I did nothing. I love the plants I have (probably a little more than is normal), but I just couldn't bring myself to start any seeds last year and even the seedlings in the farmer's market, which I would normally squee over, made me feel tired. I was burnt out.

However, I also remember it being prolific. We had so many tomatoes, we gave them to neighbors and ate them with every meal.

My front steps two summers ago, when the early girls were just starting to fruit.

From having a garden, I learned to love cooking with fresh herbs and veggies. I felt like a master of the universe pollinating my zucchini flowers. I created LIFE! And then I ate it! But, my favoritest thing about having a garden was sitting on the still hot porch just after the sun had gone down, looking over my bounty and lazily harvesting whatever looked good and immediately eating whatever looked best. That was my zen, for a while. So, as relieved as I was for the break from gardening, I missed it terribly.

Consequently, I'm giving it another go this year, but I'm going to keep it small, real small. I've got a few things started already, a long planter of garlic cloves (sprouting already!) and onion seeds, another filled with some special New Mexican chili pepper seeds, a pot with some oregano seeds, and a young thyme plant snagged at that big farmer's market last weekend. Nothing dramatic, and it's mostly blank soil still, but I've got the dirt under my nails and the sun on my skin again, and I can't wait to reap what I grow.

Mint, a survivor from two summers ago.

Thyme, the baby of our little plant family. Isn't she just adorable?


Sunday, February 6, 2011

Outings: Good and Bad

I got a couple of Old Navy giftcards for Christmas and my birthday. So, I tried to spend them last week. Tried.

I walked into the store, and the music was loud. Like, raise your voice to be heard loud. I put a second earplug in and was disappointed when the noise was only dampened. The whiny rock the kids listen to these days (lol) pierces my cranium, earplugs be damned. My boyfriend asked an employee to turn it down, but they said that they needed the manager for that, and the manager would be back in ten minutes. We were on a schedule, so I tried to tough it out, but ended up bolting from the building just a few minutes later. I'm going to try again, hopefully this week, but I'm going to have my boyfriend call ahead to make sure someone with the power of volume control will be available. I checked out their website, but I'm irked by shipping costs. This is probably the dumbest thing I have ever blogged about, I mean, first world problems much? But it happened and it was frustrating.

After we left the store, I was in a haze. I was sort of blind and sick and confused. All I could think was to grab for the pipe in my pocket, lean against a wall and take a toke or two. This is only really notable because this was the first time I'd medicated in public without feeling guilt or anxious or uncomfortably conspicuous. For the first time, I just did it, (discreetly, as usual), without any furtive looks around, or worrying about who could see me or what they would think. It's possible that I only had this moment of aplomb because I was so far gone that feeling sneaky was nowhere on my list of priorities. It was all about breathing, standing, not dropping anything and not crying. It's easy to forget about the rest of the world when your head's about to fall off.

This morning, I went to the huge farmer's market with my parents, brother and boyfriend. It's beautiful here today, in the high 60's, sunny, with just a light breeze. It's a big enough market to be intimidating, though, I played it just right: I ditched everyone else at the first sign of loitering. I don't have spoons for idle standing and jibber-jabbering. I kept moving, my eyeses on the prizes. And when I had finished the circuit, I found me a seat on the ground. There was one bench, but it had no back, so I was better off on the ground, leaning against the bike lockers.

By the time everyone else had caught up, I was fit to go again. At least, enough to get back to the car. And then I had another twenty minutes of freeway to rest before I had to tackle the insurmountable challenge of my front steps. Once inside, another half hour of rest and medicating, and I managed to take the dog out for the slowest walk ever and get a few chores done.

I'll spend the rest of today like this, with lots of resting, watching the superbowl, but also some light cleaning, and maybe a little gardening, too. It's shaping up to be a lovely Sunday.