ChronicBabe Blog Carnival #17: Gratitude

So I rarely participate in blog carnivals these days (these years?). Hope that'll change soon.

For the time being, though, I like to read blog carnival posts. Readers of my blog will probably find lots of support and warm words at Jenni Propky's ChronicBabe site. In addition to providing great content for women (and men!) dealing with chronic illness, Jenni coordinates a monthly blog carnival. Here's this month's feature about GRATITUDE: http://www.chronicbabe.com/articles/867/

Enjoy!

If you miss school, you can't go to the dance in the evening.

Growing up, I remember how excited we'd all get for those rare school dances. This started as early as third grade, I think--it wasn't 'til junior prom that I attended dances where people actually danced, but that's another story all together.

In the morning and afternoon announcements the days leading up to the Big Day, a teacher would consistently remind us that if we were absent the day of the dance, we would not be allowed on school property for the evening event. At the time, this rule bugged me a bit, but I couldn't put words to why it didn't seem fair. Always one for specifics, I could think of several different reasons why the school should make exceptions to this rule. (Truth be told, I did this any time there was a blanket, one-size-fits-all rule that was imposed on us.)

Today I feel crappy, plus Jim's doctor reinstated his bed rest prescription. (Jim had a tonsillectomy over a week ago and was on the mend but, after some un-scary bleeding, he had to go back to squishy foods and no exertion. This means I'm his nursemaid.) There's a lot going on in town today, too, things I don't want to miss. My migraine-plus-cold situation means no Indie Craftstravaganza for me, no neighborhood party, and no neighborhood association meeting at 4. Earlier I was feeling too blah to take my Maxalt, worried that maybe this was a "normal" headache associated with my cold and not a migraine (though time has shown that this is indeed a migraine; just have to convince myself to stand up and walk to the bathroom to fetch the meds). Then I thought, "Well, even if the Maxalt does work, I won't be allowed to go to the fundraiser party tonight. If I don't make it to the neighborhood association meeting in the afternoon, I can't go to the party in the evening."

You can see why I thought of my days in school, listening to the teacher as she told us in a scolding voice that missing the day of the dance meant no dance.

Of course I know that, when they work well, migraine-specific medications can wipe out the attack and render the migraineur able to function somewhat normally within hours. That if Maxalt works as it does 65% of the time for me, I could rest at home for a bit and end up at the fundraiser party at 7 in top form.

But my neighbors don't know that. I can't help but think, "What will they say if I email to cancel my participation at the meeting and then show up at a party hours later? They'll think I'm a faker!"

Of course this is an issue that's faced by many chronically ill folks like me. What have your experiences been? I am wary of overexplaining the ins and outs of my illness to people (close friends and strangers alike), but I don't feel comfortable showing up for a social function after having skipped the more boring duties earlier in the day.

I am on Twitter. Please tweet with me.

I love using Twitter to learn about bookselling and the book world (and to connect with readers). I thought I'd launch a personal Twitter account in addition to my bookstore account. Find me and we'll chat!

Here's my handle: @themigrainegirl

this strange sickness

I’m not used to having crappy days that aren’t migraine-related. This feeling is strange and uncomfortable—I almost expect to feel my head pounding when I stand up.

But I feel fine, physically speaking. My eyes are tired and I would love to curl up for a nap, but my head is okay and I’m not at all nauseated or headachey.

For someone who is used to chronic illness, it can be off-putting to feel sick for some other reason. Some reason that is, at least on the surface, unrelated to the usual culprit. Sometimes, during particularly bad migraine attacks, I think, “I would take any other ailment! Like, give me a sore throat or a cough, but get rid of this migraine!” When my yearly or biyearly cold comes around (as it always does), I curse my migrainous self. Sore throats KILL. Coughing so much that you can’t sleep is a form of agony all its own.

Now for this funk. I don’t want to be in the midst of a migraine episode at the moment, but at least in that case I’d have a reason for feeling lethargic and ever so blah, emotionally speaking.

This morning I woke in an uneasy mood. I hadn’t slept well due to loud noises outside my window. Have I mentioned I live within two hundred yards or so of an active train track? I can usually sleep through the whistles and chug-a-chugs, but when the conductors feel the need to couple their trains at 3 AM, this leads to horrifically loud crashing and banging. Imagine freight train cars slamming together hard enough to connect, and you’ll know what sorts of noises woke me up every few minutes in the night. The stress-infused nightmares didn’t help my mood upon waking.

Do you ever feel extra-out-of-sorts when you feel sick/depressed/blah/tired for reasons not attributable to your migraine? It’s really throwing me for a loop.

wishful thinking?

I don't blog much about migraine disease anymore, but that's not because the disease is behind me, it's just that I devote my online time to other things. (Speaking of that, I've really missed writing about migraine; turns out writing was a more powerful coping mechanism than I'd ever thought. Might have to return to the blog!)

Each day I get an email full of articles about migraine in the news (thank you, Google Alerts). Football player Percy Harvin is mentioned daily. I don't know who is is apart from the fact that he suffers from severe migraine attacks and is getting criticized in the news (which makes me irate, as you can imagine).

This morning I saw a headline about Harvin's claim that he thinks he's put the migraines behind him. This is just a blurb of an article, but it seems so naive. It's frustrating, too, that such a major figure has many people's attention right now and he could use this as an opportunity to educate people about this disease.

http://nbcsports.msnbc.com/id/38900552/ns/sports-player_news/

For his sake, I hope I'm wrong and he has found a miracle cure most of us have never stumbled upon despite years of trying.

aspartame fears strike again

This article strikes me as a little alarmist, and I can't seem to completely trust the content on the Huffington Post. That being said, I'm sure that much of what Mercano has to say is well-founded.

Here's the link to an article about the evils of aspartame!

As I've mentioned before, just one piece of chewing gum sweetened with aspartame can knock me out with a migraine for a day or two. Splenda and sucralose do the same thing; luckily I eat pretty well and rarely ingest these chemicals accidentally.

Still, the questions this article raises brings up an undeniable truth: we must be careful of what we put into our bodies! Yes, many "natural" chemicals can hurt us. And the lab-created foods and sweeteners aren't evaluated in longevity studies, meaning there's no way to really know what the buildup of unnatural chemicals may do to our systems over our lifetimes. Be healthy & cautious, friends!

support migraine research & perhaps win a prize!

The tireless folks at the Migraine Research Foundation (who happen to be very supportive of health bloggers like me) have a really great website set up. Donating to migraine disease research has never been so much fun! Donate to this very important cause and you'll be in the running to win any number of cool prizes. See this website for details.

the lost day

Around lunchtime today, I was rooting around the kitchen, looking for something to snack on. I saw a to-go box from a sushi restaurant and remembered having a lovely dinner with J. at a downtown sushi restaurant the night before.

But then I did a double-take. Was dinner last night? Or the night before?

It took me at least 30 minutes to properly reconstruct the events of the last two days. Sushi dinner was Monday night, all day migraine (including two long naps that broke up the day and made things even more confusing) was Tuesday. Today, Wednesday, felt like Tuesday since I never really had a real day yesterday. Tuesday was my lost day.

This happened to me a lot more frequently when I was more ill. When I served full-time as an AmeriCorps member in Florida years ago, I'd lie down on my bed after work on Friday for a quick read and not wake up until 15+ hours later; clearly I needed to recharge after a hectic week. Time felt out of joint and, though I could logically explain where the hours had gone, my mind and body remained confused about the passage of time.

From what I understand, this happens to a lot of people with chronic pain and/or chronic fatigue & immune dysfunction syndrome. Pain and exhaustion lead to marathon naps that are disorienting and, in many cases, not all that refreshing or healing.

So now I'm playing catch-up but still feel run down and operating at about 80%. Such is the migraine attack postdrome, I suppose. As always, I am being pretty hard on myself regarding how much (or rather, how little) work I've gotten done this week, but I know I need to cut myself some slack.

For now, I need to catch up on some work. ;/

April Migraine Blog Carnival posted!

Check it out here.

I submitted an old post but it's not on the blog carnival page for some reason. Here's what I wrote about bibliotherapy/guided reading.

perfect timing

I've mentioned before how grateful I am to have discovered the Partnership for Prescription Assistance (http://www.pparx.org/en/prescription_assistance_programs). I enrolled quite a while ago--with my doctor's prescription (and a low enough salary to make me a deserving candidate), I now pay less for drugs than I did when I had insurance. And when I say "I pay less," what I mean is I PAY NOTHING.

Yesterday and today I've had morning migraine attacks followed by druggy, semi-wasted afternoons. I love the quickness of Maxalt but not the ghost of a Janet it leaves behind. I've been working like a madwoman of late, so maybe this is a good chance to catch up on reading. (Today I finished three books!)

But taking Maxalt yesterday and today meant I was already halfway through with the samples my doctor gave me a few weeks ago. What to do if another migraine hit in the next week? Did PPARx ever get my application? Would I be approved for more prescription drugs through their service?

I checked the mail and voila: 5 packs of Imitrex just waiting for me. All it took was filling out the application, proving I am not rich, and getting my doctor to check me out and write a new prescription for triptans.

How my mind is eased when I know I have drugs if I need them. Sometimes just having them on hand makes me feel a million times better.