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.

a favor to ask

Friends and fellow health bloggers,

As many of you know, I'm opening a bookstore this year in Athens, GA. Deciding to start my own business was not a choice I made lightly--every step of the way, I had to guess at how every aspect of business ownership would affect my health. After weighing the pros and cons, I decided to move full speed ahead. Once we open our doors to the public toward the end of this year, I will make sure I have a plan in place for when I'm too ill to be at the store. (To start, I'm setting some rules for myself, including a rule that I can't work more than X hours per week, no matter how much there is to do. Health comes first.) Thankfully, working on my business plans each and every day has improved my life and given me more focus, something I really needed. I have more of a routine now that I'm working multiple jobs (freelance work, babysitting, medical document editing, and the as-yet-unpaid bookstore work!). I'm thrilled about my new business and the feedback I've gotten from friends, family, colleagues, and the community at large.

Now's when I ask for a couple minutes of your time. Please visit my bookstore blog and see how you can help me get this project to the next level through free clicks, small (we're talking a $1 minimum!) donations, and even formal investments.

If you've only got a second, just click here to vote for us in the Pepsi Refresh Everything project, and spread the word. You can vote daily!

Many of you out there have your own Facebook pages, your own blogs, your own businesses. Would you consider posting the link to my Pepsi Refresh Project so your friends and customers can vote, too? I'd be most grateful.

Thanks to Eileen Gray and Teri Robert, who are already helping out.

March 2010 Headache Carnival posted!

Diana Lee's at it again, and at last I've gotten it together in time to contribute a post. Check out the March 2010 Headache Blog Carnival, Opening Up to Family & Friends: March 2010 Headache & Migraine Disease Blog Carnival.

when you're partner's in pain, too

I wrote this during summer 2009 for ChronicBabe.com, but I never heard back from the very busy Jenni about whether or not she wanted to publish it on the site. So here it is in this form.

7/24/09

Overnight, tons of percussion instruments appeared all over my house. Congas in the living room, bongos in the bedroom, an African balliphone in the TV room, and a collection of maracas in the office. After three years together, my musician boyfriend moved in with me.

In truth, we've been pseudo-roommates since the summer we met. Downtime is at my house, dinner time is at my house, coffee time is at my house, and oh-my-god-I-hurt-so-much-I'm-going-to-throw-up time is at my house. That's right: I cope with migraine disease, chronic fatigue, and a host of other chronic problems, and my boyfriend has some chronic pain and migraine issues himself.

When I'm really low, J is a loving, caring nurse, albeit one who loses patience with his patient now and again. In some way or another, we've all been in his position: someone we love is hurting terribly and is unable to tell us how we can help simply because there is no solution, no cure. My college psychology professors would tell you that, when faced with a friend's problem, women will focus on listening while men will try to figure out what action they can take. There have been several instances wherein I've watched J's back as he left my darkened daytime bedroom--he shuts the door briskly in frustration as I've told him yet again that there's really nothing he can do.

We were pretty spoiled for awhile there: rare was the day when both of us were struck down. Then came last year. I'm not sure what happened to us, but last spring we turned into arthritic, achy 60-somethings overnight. Suddenly we were both sick and bedridden at the same time, and it. was. awful.

J and I are both fiercely independent (it took a couple months of exclusive dating and confessions of love before we actually admitted that we were boyfriend and girlfriend) and have trouble relying on others for help. Oh, another thing that's fun, especially when we're sick? Each of us is right all the time. Makes for some productive conversational volleys.

So let's return to the scene last year, when I was having some particularly rough migraine spells and his back was, after years of wear, was finally beginning to tear. We two were lying in bed, too worn out to take care of our own lives, let alone each other's. We bickered. I glared at him when he turned over in bed and woke me from my hazy, migrainey nap. He winced with a sharp intake of breath as I tried to hug him--no matter what, I always seem to forget how much his back hurts and squeeze him too hard.

It can be exhausting to be with someone burdened by health problems. Sometimes J's empathy is heightened and he really identifies with what I'm going through; other times, I think he sees too much of himself in me and, consequently, is a little too harsh and judgmental. (Same goes for me.)

Here are some things I try to tell myself when dealing with a stressed-out, ailing fellow:

1. Don't assume you know how he feels. Yes, you have similar diagnoses. No, you don't know how his pain affects him physically and emotionally.
2. Choose your time wisely. Have most of your health-related discussions while you guys are feeling good and healthy. Too often, we start Serious Health Talks when one of us is down for the count. I'm guilty of preaching to him about making more frequent doctor visits while he's completely tuckered out and feeling awful.
3. Remember that you have a choice in how you deal with what life gives you. As Jon Kabat-Zinn might say, it's important to respond to what you encounter and not necessarily react to it. The emotions you experience may not be under control, but increased self-awareness can allow you to choose between ignoring or indulging in those feelings.
4. When feeling healthy, teach each other what you'll need when you're sick. I know where J's medications are and will have them at the ready as soon as he asks; he sometimes knows where mine are, but there are lots of bottles and supplements and it can get confusing. Note to self: make a list he can consult so that next time you're in bed with migraine you're not calling out to the dude in the bathroom (as your head throbs with exertion), "No, not that bottle. The other one. The one on the right? NO, THE OTHER ONE!"
5. Give your partner the benefit of the doubt. Always remember that he loves you and wants the best for you, and make sure he knows the same is true for you. Try to be extra patient when he is in pain and vulnerable.

Our health problems have been addressed thoroughly, and each of us has seriously evaluated our futures: can we handle being with someone this sick? Can we hack it if our loved one's problems grow dramatically worse? Will we be okay if one of us is miraculously cured and no longer depends so much on the other? As for now, we're confident we can handle what the future brings--after all, we have a pretty good record so far.

question for my fellow migraine bloggers

Do y'all still use Wellsphere at all? I get about 50 emails a week from them (slight exaggeration?) but never click into the site. Now I only vaguely remember why I decided to stop being involved, and I'm too lazy to do research to pick at my old-self's brain.

So I'll just ask you: do you use Wellsphere? Is there any point to my keeping the account open (assuming I get more active in the health blogging world again).

Thank you. exes and ohs to you.

one of those days

Last night I said to J., "I feel really hopeful." "Good--you should!" "I always feel hopeful and excited about things, but today feels special. Something really good is going to happen. And I really think I stand a chance with this grant giveaway." "Of course you do!"

Cue 12:01 AM, when I tried and failed to submit my Pepsi project. A few hours later, adrenaline still rushing through body after having tried to troubleshoot the technological issues that held me back from submitting my little grant application, I lay in bed trying to fall asleep.

And then today was a doozie. It's rare that I'm discouraged or down in the dumps, but man--today did a number on me, and nothing even happened! (Why did I refuse to note the signs of a migraine coming on?) While running errands, I noticed that the daylight made me squint, and my vision was blurry. I took down my photo show from the Flicker Bar, and ended up getting super-teary-eyed. Not sure why, as I know I sold well (I sold enough photos to reach my goal of having enough dough to launch the Avid Bookshop website!) and had a really successful art opening on February 1st. Hell, even if I'd sold nothing, I still would've felt proud of myself for having my first-ever photo show, for doing something public with a hobby I think I'm pretty good at.

So it wasn't regret that made me teary-eyed, and it wasn't the usual reason that I cry at the drop of a hat (um, PMS, anyone?): I think it was that I was getting a migraine. Yesterday evening, I was feeling particularly euphoric, more encouraged and productive and active than I've been in weeks! But then the prodrome really set in (my blurred vision, the bright sun, the weepiness, incessant yawning) without my realizing (or wanting to acknowledge) what it was.

Now, 22 hours after my hopeful, euphoric outburst, I'm feeling okay. A little down in the dumps, a little discouraged, and a little distracted by the discomfort that's not quite settled in behind my left eye. Tomorrow I'll begin anew, having a couple of bookstore meetings and dealing with some bureaucratic bill pay stuff that will surely find me sitting on hold, book in hand for a little while.

Hope you're well.