Just another Oct. 31

I skipped Halloween tonight. This seems pretty sad at first: I mean, I have always loved Halloween and tend to dress up each year--if you exclude a handful of early high school Halloweens when I was too cool (and too old, according to my parents) to dress up and go trick-or-treating.

I've told you a little bit about my dear friend HT before. She and I are very similar in a variety of ways--it's not just our height and Germanic looks. (What an odd non-Janet-sounding sentence. I'll keep it.) We get along well for many reasons; it helps that she is perhaps the only real-life person I know who genuinely understands what it's like to live with a chronic illness. Because our personalities and senses of humor are so similar, our perspectives are that much more in sync.

Earlier this week, I called her to see if she'd be interesting in spending the night IN on Halloween. As the night is her favorite holiday, I knew she might be reluctant to commit. As she'd been pretty sick off and on for the weeks prior, I knew she'd probably end up being able to hang out with little old me. As it turns out, we did get to spend time together. We had dinner, chit-chatted, and watched The Shining for the first time in over a decade (for each of us). Let me just tell you: this movie is AWESOME. I somehow remembered it as being sort of slow and boring until the final scenes--but my 28-year-old self now scolds my high school self for not having realized how wonderfully suspenseful the film is. The experience I had watching it was lessened by the pain and discomfort I felt during the loud scenes or very bright shots. I thought to myself a few times, "Wow--this would REALLY be painful in a movie theatre!" I asked HT to turn the volume down once or twice, but the high-pitched, sitting-on-the-edge-of-your-seat squeaky strings still got to me. When I watch TV with my boyfriend, I almost always have to ask him to turn it down for me. (He's a musician who must already have irreversible hearing damage; I'm an ultra-sensitive girlfriend who is getting paid back by karma for all the times her older sister used to tell her to turn down the volume.) I can relax pretty well on my own, but now even laid-back activities are threats of pain and discomfort. I don't like that, even when I'm in a friend's quiet, smoke-free house--a place that should be lovely for a migraineur--I have to ask her to make many adjustments to accommodate me.

I suppose I feel as if I'm always on guard; that a trigger could be waiting around the corner. IS waiting around the corner, and I've got to be quick enough to catch it.

Even now I'm affected by the unintentional elements of my visit. When HT gave me a long hug goodnight, I could smell hand sanitizer on her, hand sanitizer with a strong scent (strong for me, at least). Even the hug couldn't be an enjoyable goodbye--instead I was thinking, "Oh, I hope she doesn't hold on too long, because that smell is going to wear off onto my clothes and it'll bug me!" Now I'm sitting at this computer, 30 minutes after saying goodnight, and the hand sanitizer smell is wafting through the air and sending daggers through my nose into my brain. Sorry.

So yeah. Back to Halloween. We drove downtown once to deliver HT's husband's i.d. to him--he'd forgotten to carry it along with him in his costume. We got to see a few costumes and were creepily incognito: we wore bags on our heads as we parked outside my favorite bar and waited for HT's husband to come out. Only he and two other friends knew who we were; they snapped a few photos of us. I looked beyond them and saw many of my friends outside the bar, no one knowing I was near. And then we pulled off.

And you know what? I'm not sorry I didn't got out. At this pinot, the night is over for most folks in town and I'm sure they had a great time. So did I. I continue to get used to this lower-key Janet who chooses to stay in when she used to be social, social, social. I hope I stop questioning her choices so much and trust her to do the right thing.

Y-M-C-A!

I have had the scholarship application for the Athens YMCA in my hands for months now. The duty of acquiring all the official documentation to prove that joining the Y is out of my budget...? Well, that's a duty I wasn't accomplishing.

Yesterday, I put "finish YMCA scholarship app." on my things-to-do list. I had a couple of questions for the Y, so I emailed the man in charge. Come to find out the scholarships are for kids. Uh.... Oops. Nevermind the fact that the forms don't mention that.

The friendly contact person did tell me that adults in need could have the "building fee" waived in an attempt for them to be able to afford the Y. "How do I go about applying for that?" I asked in an email last evening. This morning I got a reply from him--he just asked that I print out his email stating the building fee was waived for me.

Done and done.

How easy as pie was that? I love how I lazed around with that defunct application for months only to find out all it took was a simple email interaction and request.

Procrastination = bad
Being proactive = good

Now...back to avoiding my work.

save healthcare & our country!

Hi, guys. The Obama campaign folks sent me the following list and I thought I'd take their advice and repost it. If you're not pro-Obama, rest easy--I'm not going to pressure you to change your mind (even though I really think you should!). If you are pro-Obama, reading the following list is very important!! Repost this list if you desire.

TOP 5 REASONS OBAMA SUPPORTERS SHOULDN'T REST EASY

1. The polls may be wrong. This is an unprecedented election. No one knows how racism may affect what voters tell pollsters—or what they do in the voting booth. And the polls are narrowing anyway. In the last few days, John McCain has gained ground in most national polls, as his campaign has gone even more negative.

2. Dirty tricks. Republicans are already illegally purging voters from the rolls in some states. They're whipping up hysteria over ACORN to justify more challenges to new voters. Misleading flyers about the voting process have started appearing in black neighborhoods. And of course, many counties still use unsecure voting machines.

3. October surprise. In politics, 15 days is a long time. The next McCain smear could dominate the news for a week. There could be a crisis with Iran, or Bin Laden could release another tape, or worse.

4. Those who forget history... In 2000, Al Gore won the popular vote after trailing by seven points in the final days of the race. In 1980, Reagan was eight points down in the polls in late October and came back to win. Races can shift—fast!

5. Landslide. Even with Barack Obama in the White House, passing universal health care and a new clean-energy policy is going to be hard. Insurance, drug and oil companies will fight us every step of the way. We need the kind of landslide that will give Barack a huge mandate.

If you agree that we shouldn't rest easy, please sign up to volunteer at your local Obama office by clicking here:

http://pol.moveon.org/obama/office.html?source=blog&id=14534-5183653-nFgmwbx&t=1

achy and lazy

Saturday I woke up tired. Tired and sore. Most likely that's because I stayed up pretty late Friday night and had one too many vodka-sodas. Fair enough. I didn't feel hungover OR migrainey (miracle of miracles), but I was achy and tired much of the day. When night fell, however, I was awake and energetic and inspired. J. and I had some sushi, went to see a friend play music downtown, and then rented a movie. I was in a silly, hyper, ridiculous mood until I fell asleep around 1:30.

The next night (last night, Sunday), I was up really late again. I saw a movie with my friend and, after walking home, took my nightly meds and planned to go to sleep. But THEN my beau came over to hang out, and we ended up making pizza at one in the morning (I had only snacked for dinner instead of eating a real meal, so I was hungry!) and watching a movie. Again, despite having a tired, achy day, my night was fun and silly and giggly. (I am pretty weird in real life, this I must admit--the last two evenings I exploited this trait for all its worth.)

I was wired and couldn't fall asleep last night. Eventually I shut the light off around 3:45 AM; of course that meant I didn't wake up 'til an embarrasingly late hour today. I've accomplished some things around the house (wrote a couple of emails, did the dishes, tidied up, visited with a good friend I've not seen in a LONG time, etc.), but I feel unaccomplished, tired, achy, and lazy overall. Wholly uninspired. It could be that my lovely time of the month is settling in for its visit. Perhaps the achiness is due to that. It could be because I skipped out on this week's exercise and yoga. Maybe none of the above. Maybe all of the above.

In any case, I feel like I'm watching myself from the outside, knowing that getting up and being active is the way to go. But since I have work tonight and a big editing assignment coming in the mail tomorrow, I feel like vegging while I can. So I continue in this pattern of achy laziness.

Let's hope I'm not so down on myself tomorrow.

When meds make you lose your mind

To everyone who's ever felt out of it or stupid while taking a brain-altering drug: this short but poignant New York Times article by Judith Warner is wonderful! I responded to the article with this long letter (which initially started as a short comment). Links throughout lead you to relevant blog entries.

Dear Judith,

I confided in a friend a few weeks back about how stupid and out of it I felt while on my preventive drug (Zonegran) for around 1.5 years. He forwarded me this article this morning--I'm so glad it was published in such a large forum!

I joked a lot about the potential side effects ("difficulty word-finding," "cognitive impairment") when I first started popping Zonegran, but I never thought I'd actually be one of the patients affected. My cognitive impairment didn't kick in until a few months into drug treatment--and the patient leaflet said that all the cognitive side effects are usually here and gone after the first six weeks of treatment. I decided I was just getting stupid. For the first time, I wasn't in school or doing academic reading. I couldn't work a 9-5 job because of my migraine attacks. Maybe I just lost my brain.

Madge (commenter above), it seems you're admonishing Judith for not having said something sooner to her doctor or pharmacist. It seems to me that Judith took action pretty quickly. As for me, I was embarrassed about the side effects and not even sure if they were side effects from Zonegran--maybe they were just side effects of life, the new and not-so-improved Janet. I'd always prided myself on my writing and thinking ability and suddenly that was disappearing. This phenomenon is so strange, so unfamiliar, and so hard to pinpoint that it's not easy to see that it's connected to a drug you started months ago. I didn't say anything to my doctor or pharmacist about it until months later.

Someone named "cla" commented before me about how busy doctors are today, how perhaps we patients should adjust our expectations instead of expecting doctors to be at our beck and call (I'm paraphrasing here--hope I've not taken any liberties, cla). This is b.s.! I KNOW that doctors are overwhelmed with insurance claims, paperwork, bureaucracy, and five visits a day from drug company peddlers who overwhelm them with ads and sample medications. I think that cognitive side effects should be treated as seriously as physical side effects, that doctors should be honest and up front with patients. Migraine disease is so much more than a series of episodes (which may or may not involve a headache)--it's a disorder that affects your ability to function, your ability to have a so-called "normal" life, your ability to enjoy what you have without being worried about the next attack. If doctors are focused entirely on how the body is affected (if they're focused on that at all and not distracted by their bureaucratic duties) and not focused on how the patient and her life are altered due to the disease (or drugs given to treat the disease), those doctors need some lessons in patient-doctor communication. They need to learn more about migraine's ins and outs and realize that, just because the clinical trials didn't reveal a prevalence of a certain side effect, LOTS of people are losing their minds, their selves, while on certain prescription meds.

After over a year and a half on Zonegran, I finally weaned myself off (with doctor's straightforward assistance and little care as to why). I still don't feel as smart as I used to. I still have trouble finding the words that used to come so easily to me--but I have to have the faith that this will come back to me. That I've taken brain-altering drugs and it might just take awhile for the firing synapses to resume their old speed.

In closing, thanks for this article. Thank you so much.

Get thee behind me, Big Pharma!

I was contacted by a very friendly and persistent woman named Kelli regarding this Big Pharma-sponsored website that's supposedly created for the needs of migraine bloggers like us.

What follows is my response to the site, toned down for an email to Kelli, who wanted to know what I thought of the site, if I would use it, etc. I didn't point out to her any of the grammatical or spelling errors I found, nor did I mention the occasional link that led to the incorrect article or video.

Grrr! It makes me so angry that Big Pharma is even trying to worm its way into our grassroots patient-oriented blog community!

Dear Kelli,

Thanks for keeping in touch regarding the website. I would've forgotten to look at it were it not for your helpful reminders.

Unfortunately, I don't anticipate ever using the resources on my blog. First and foremost, there's not a whole lot of information available I can't get on my own through web searches and a bit of basic research. The hints and such are good for people who are just starting out in the world of Migraine sufferers & doctors; they're not so useful for we Migraine bloggers who already know a bit more about how to handle the disease and learn to cope with it.

I had high hopes for the video section, but all the videos felt like advertisements--very glossy commercials. Lo and behold, there was an advertisement for the pharmaceutical's prescription drug at the end of each snippet. I would not put that on my site, ever.

The links take a while to load, too--maybe someone is working on improving speed?

One glaring problem with the site is that it's BRIGHT white--and the links are light blue. Most migraineurs are very sensitive to bright light (especially fluorescent or blue-tinged computer light), and looking at your site made me squint even though my screen was dimmed as low as it could go. I highly recommend you change the background color at the very least so it's readable and doesn't hurt migraineurs' eyes.

Overall, I appreciate your personal effort in making this site and getting in touch with bloggers. I am not attempting to drive more traffic to my blog, so the "bring more people to your site" pitch does not appeal to me. I think there's a LOT more information, articles, etc. you could post to make it more useful. Unfortunately, some other sites (MAGNUM's, other blogs, etc.) already have a comprehensive list of online resources, so there's not much use for yet another site like yours--especially since yours is sponsored by Big Pharma.

Again, I do appreciate your effort but won't be using the site. Thanks for thinking of me and asking for my input.

-Janet G.

mine nose is mine enemy!

In the last several months, my sensitivity to light, smell, and sound has skyrocketed. I don't know what the deal is, but times are tough. I won't even go into the fact that going to rock shows (which is one of my favorite things to do in this entire world) has become painful to me even when I wear my omnipresent earplugs. Let's save that tragedy for another post.

Let us focus on my borderline live-in boyfriend for a second. J. is thoughtful, lovely, kind, smart, and extremely goofy. Wonderful traits. J. wears a combination cologne-deodorant that my 19-year-old self would have swooned over. (Swooned!). He smells so wonderful when he sprays the mist into his pits. Unfortunately, the smell has gotten worse. A couple of years ago, I asked him if he would wear the blue-bottle scent instead of the green-bottle scent because greenie and I didn't get along. Then came a lovely period when he used normal stick deodorant like most of us. A month or so ago, he bought his old brand again...and this time I CANNOT TAKE IT.

Despite my feeling like a crotchety old lady, I asked him that if he was going to get ready for the day at my house could he please spray the deodorant outside on the porch? Affirmative. Except for the times when he forgot and I had to turn on fans and lie down. (One time in particular I got a migraine attack within thirty minutes despite my going as far away from the Spray Site as possible!)

It's been awhile since I trained him to spray outdoors (ew--I sound like I'm talking about a feral cat). Tonight he sprayed his deodorant on the deck and reentered the house. Kind soul.

Too bad the smell is shooting straight up my nostrils into my brain! So gross! I am in my office, door closed and window open. I still cannot shake the smell that he sprayed nearly two hours ago OUTSIDE.

When I was a younger lass, my mom's inability to be around strong sensory stimuli drove me crazy now and then. I'd come in the room after a shower and try to sit with her on the couch, but my shampoo smell was too potent for her and she'd ask me to get up (or even leave the room). When Bath & Body Works lotions were all the rage in eighth grade, I became a fan of the ever-popular "sun-ripened raspberry" line. My mother couldn't stand to be in the same room as I after I slathered myself in the overpriced body lotion. (Again, I will not discuss her other types of overexcitabilities here, but suffice it to say she is very sensitive to her environment.)

It made me sad and hurt my feelings when my mom wouldn't be able to hug me because I smelled. To be honest with you, my friends, I thought she was being overdramatic. (Sorry, ma--I was a 'tudey teenager anyway, eh?) Surely no one could have physical reactions to smells that were so mundane yet lovely! Right?

Wrong.

I am turning into my mother. Yeah, yeah, most adult women come to that realization some time or another. Truth be told, I am proud to be very much like her. Too bad part of that similarity is extended to my nostrils' oversensitive nature. I can't be around strong smells. My boyfriend is going to change deodorants. I hold a shirt over my face if I'm around cigarettes, thereby marking myself as one who is trying her best to passive-aggressively judge the smokers around her. (While I detest cigarette smoking, I am only covering my nose to help stave off the migraine attack, not to pass judgment with a gesture.)

So Ma, I'm sorry. Sorry I doubted the power of your nostrils all those years. Sorry, sorry. For now I am you! Aaaahhh!

The end.

how TMJ dysfunction can ruin a cheesy couple shot

Here's a photo I took of me with the beau this afternoon. (Thank you, iMac webcam. I love you and your lack of judgment when I take fifty thousand self-portraits.) I started to make a silly face when my jaw popped loudly (and painfully). The camera took our photo RIGHT as I was reacting to the TMJ pain.

Candid TMJ dysfunction photo op! This doesn't happen every day, eh?

(Photo is a bit garbled because I was trying to use a special feature.)

James's tips: be a critical consumer when it comes to Migraine news!

I think you should read these tips from Headache & Migraine News on how to effectively evaluate migraine-related news articles you come across. A succinct, smart, and straightforward guide for anyone, not just migraineurs. Thanks, James!

NEW BEGINNINGS blog carnival up

The September edition of the How to Cope with Pain blog carnival is up. This month's theme? "New Beginnings." Check it out here!