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.

I think more than I write.

I think about writing many times a day. That is to say, many times a day I find myself thinking about writing. During my evening walks, I look around my neighborhood and think about all the deep, meaningful things I could say. Of all the wry observations I could make. Of all the silly commentaries I could provide to entertain myself.

But when I get back home again, I don't write. I've neglected my blogs, my letters, and my journals. I've neglected my email. I just haven't felt like writing when actually presented with the chance.

The angel on my shoulder encourages me and fills my head with stuff and nonsense: Janet, you're not writing because you don't yet know how to express all the deep, impressive, and wonderfully moving thoughts you're having. You have a Master's degree with a focus on creativity theory: you know that you must incubate before you can produce an original idea, an original creation! You're just incubating!

The cynical, self-deprecating part of me has different thoughts all together: You're a scaredy cat. From the moment you learned to put pencil to paper, you've thought--at least glancingly--that you'd become an author. You are a good writer but will never have the guts or the willpower to be a great one, the one you know you can be. So you just rest on your laurels, write nothing, and tell yourself that you'd be great...if you were in the mood to try.

Of course the truth probably runs somewhere between those two extremes. I definitely know that elements of each argument hit a little too close to home--this suggests to me that both my kind and evil sides know a bit of what's going on inside my mind regaring my self-motivation (or lack thereof).

Writing this blog has helped me in ways I could never really describe. I have a sense of community with readers and with other folks whose blogs I read. There's a whole community of us out there, a community I tapped into at just the right time, right when I was feeling most isolated about my disease. Telling my friends and family was a big step--an important one that has improved relationships and opened lines of communication. But it's also hard to post about pain and suffering when you know your mom or sister or aunt or boyfriend could be reading. Strangers out there may sympathize with our migrainous plight and wish us well, but family and friends can be hurt reading about how much of a struggle it is to live with this illness day to day.

view from my apartment in Bs. As.

Recently I've been both bummed and relieved. Strange combination, I know. The month I was in Buenos Aires was wonderful and lovely and relaxing, but my migraine frequency skyrocketed. A disappointment, to say the least, especially after I'd been doing remarkably well post-December's doctor appointment. In Buenos Aires, I had to break my healthy diet rules nearly every day, as dairy and white, enriched flour and other no-nos were sometimes impossible to avoid if I wanted to have any sustenance at all. I lived with 1-2 roommates (friends) at a time in a comfy but small apartment. This led me to a truth I'd been on the brink of already: having a boyfriend as an occasional roommate is far different from having a friend-roommate. At least if the boyfriend is J. and the girlfriend is me. I know that my friends don't need to be entertained; I know that roommates/guests don't necessarily need my help and guidance and company. But, man! It was definitely more of an effort sharing a space with them than it is sharing one with J. (We have yet to do an official move-in, but it may happen by the end of this year. Maybe. We'll see.)

But back to the matter at hand. Since I've been back from Buenos Aires, I've not had one migraine. Not a one! I've relished the mere thought of being able to eat my meals in my own house. I've eated two meals out in two weeks. (Well, three meals if you count that very necessary 3 AM snack at Huddle house with Christa last weekend.) This is not like me. I tend to eat out a few days a week. But now the thoughts of rice and stir-fried vegetables trump any desire for pizza, heretofore desirable cream sauces and pasta, etc. I feel remarkably better when I eat well, and the truth of that was emphasized by the month in Argentina when I couldn't stick to my diet rules. Now I'm feeling no migraine pain and have no tummy issues. Whew.

However, something else is afoot. I'm exhausted, achey, tired, and more all the time. The list goes on and on. I've a sneaking suspicion something else is going on with my body. Next week I see the doctor again and will figure some more stuff out. Maybe results from yesterday's blood work will yield some answers.

All in all, things are going well and I'm confident they'll keep getting better. Hope you're feeling similarly about your own lives.

Action alert--important, please read & respond!!

http://www.allianceforheadacheadvocacy.org/

It's a critical time for all of us, those with a headache disorder and those of us who know people with headache disorders. Please visit the above link and forward a letter to your government representatives urging them to increase funding for headache research. The ADHA folks make it super-easy to submit an email to your representatives, so no whining about having to do extra work--this will take you only a minute at most!

THANK YOU!

the PMS monster hath risen

This past week I suffered from awful bouts of irate anger (redundant, much?) and moodiness. Though the migraine frequency has lessened, the headaches still come up once a week or so. Until this week, the head pain wasn't accompanied by other migraine side effects other than sleepiness.

Until PMS time came. I had worse PMS than I can remember in recent history. I was moody, extremely sad (curled up on the couch listening to overdramatic songs on my iPod--not even using the stereo!), and flushed with anger at the drop of a hat. Yech. As I mentioned to my sister, I felt the way I did as a teenager during fights with my mom: in each case (picking a fight with my beau this week or with my mom 15 years ago), I could see the argument spinning out of control, could understand why the things I was getting p.o.ed about really were meaningless. But I couldn't stop being mad. I couldn't stop yelling or uttering huge sighs of disgust. Ew! Dear Lord, please don't make me a teenager every month. I hope that this week's tudiness will not replicate itself next cycle.

Am I the only one whose period brings different side effects every time? Sometimes I'm cool and collected (okay, that's rare--but last month I was like that!); other times I am the devil incarnate. Still other times are marked by awful cramps and no headache; the next month, I might have an 8-day Migraine with no cramps. I prefer predictability.

healthy boundaries for "chronic babes"

Jenni Prokopy has this wonderful article on ChronicBabe.com this week about setting healthy boundaries in order to keep yourself and your relationships going strong.

I love it! Check it out here.

how wonderful is THIS?!

Came across this in my daily news search online. Smile!

feeling like myself again

The other day I was in an excellent mood, flitting about the house getting things done, rearranging furniture, etc. As I had faintly suspected, this sense of euphoria and increased energy was a signal that the prodrome had set in. For a couple of days (and evenings) after that awesome night, I was pretty laid up and out of commission with Migraine.

Late in the evening on Tuesday--say, around eleven or so--I started to feel okay. I'd already missed a close friend's birthday get-together so felt a bit bummed out. Mainly I was relieved, though--the pain was lifting and I had a little bout of energy. I cleaned & rearranged my jewelry. I wrote a letter. I read a chunk of my book.

Wednesday I babysat for a few hours and, despite not having slept well the night before, I was happy and energetic with the kids. We played outside and I didn't once feel the need to lie down and rest. (A few weeks back, the six-year-old walked up to me shortly after I arrived at his house to sit. "Are you sleepy?" he asked me. "Um...not right now, no. Why did you ask that?" "Cause you're always sleepy," he replied in a sad voice. Wow. It's not as if I didn't know I felt run-down pretty often--it's that I'd thought that, in general, the kids saw me as an energetic, healthy person, not an "always tired" type. Hmm.)

Now it's Saturday at one in the morning, and my good mood, good spirits, and good health are all still going strong. I survived a big Thanksgiving Day (and night!) with some good friends and didn't get a migraine (!). Hours ago, the sunny and warm day turned into a chilly, rainy one, and my head didn't freak out as it usually would. Yesterday evening I had a few drinks and didn't wake up feeling extra tired or migrainey.


I've been engaging in activities I used to love but that have since fallen by the wayside due to my blah-ish indifference or my schedule--when so much of my time is taken up by Migraine, my non-sick times aren't usually spent on my goofy old habits. Here's a list of a few things I used to love doing but had kind of stopped until very recently (VERY recently):

1. played my piano keyboard, practicing notes and playing songs badly (I don't exactly have a formal piano education and can't play with two hands any better than a preschooler might--but it's fun!)
2. created many a paper craft, including a hand turkey, cut-out scissor crafts, and paper dolls
3. borrowed J.'s guitar and whipped out my cousin Bev's thirty-plus-year-old Mel Bay guitar instructional books
4. write letters to friends
5. hung lots of art & photos on the walls, art that had been sitting around for MONTHS waiting to be displayed
6. continued compiling my favorite photographs for a little photography portfolio
7. cleaned my silver jewelry (and some of the fake stuff, too, which appeared shiny and new again for about ten minutes before it re-tarnished--what gives?)
8. took a few long walks
9. snapped some photos of my neighborhood
10. made a cake (from the box--thank you, Duncan Hines)
11. repaired a beaded necklace my friend's cat chewed on and messed up approximately THREE YEARS AGO (it's been sitting around in plastic wrap since that fateful day I found it all torn up)
12. burned a CD of Costa Rica photos for my friend Rosa, a CD she requested I make in January 2008
13. sent a postcard to my cousin Laura--a postcard I bought and wrote in July 2007

+ more!!

Look at me, look at me! Now's the time when I indulge in a little fantasy about how this is how life will be from here on out. My migraines are gone for good, you see, and I'll NEVER BE SICK AGAIN. Awesome, huh? ;)

I got the kreativ* blogger award

More than three weeks ago, the very kind MaxJerz from Rhymes With Migraine sent me an email letting me know she'd awarded me with a little something called the Kreativ* Blogger Award. I was flattered, to say the least--it's strange to realize that a blog that I started to help myself has benefited others, even if it's just a sense of camaraderie we get. (For those of you who don't know it, the migraine bloggers tend to read each others' stuff and it really helps. In fact, any personal writings about chronic illness, chronic pain, and/or disability quite often benefit those who stumble across them, those who may've thought they were the only ones out there dealing with their health issues.

Anyway. I haven't done my duty as an award recepient yet, and now I'm only going to fulfill my duties halfway. You see, it was requested that I not only write down six things that make me happy--I am also to award six other bloggers with this "kreativ blogger" distinction. This part smacks of chain letter, and I just can't do it. But I will say THANKS to MaxJerz and list a handful of things that make me happy.

1. baby kittens (I know, I know--could I be more of a wuss?)
2. being engrossed in a book
3. opening my mailbox to find a real, handwritten letter addressed to ME
4. closing my mailbox after stuffing it with real, handwritten letters to friends & family (This doesn't happen as often as it used to, but I'm trying to get back in the habit.)
5. hanging out with my family
6. laughing attacks

I could probably list 4,521,984 more things, but I'll leave it at six. Here's a shout-out to the beau and my friends: you make me very happy, too.

*I do not and will not endorse the deliberate misspelling of the word "creative." Even writing "kreativ" makes me cringe. "Writing 'kreativ'" would appear on the list of things that do NOT make me happy.

great, overarching NY Times article on Migraine

I just searched The New York Times website for any articles related to migraine. Here's what I found: a very well-written, comprehensive, and easy-to-follow article on the disease. This could be a good resource to give to coworkers or friends who are curious to know more about Migraine but might not want to read an entire book.

And speaking of books: my copy of The Migraine Brain arrived today. I think I'll start it now. Also of note? I ordered the much-talked-about Sinus Buster Migraine Headache Nasal Spray. I want to try it now and see if it's as hard to inhale as it sounds--I mean, there's a lot of PEPPER in there going up your nostrils! I'll wait 'til I have a Migraine attack, though. I'll keep you posted with feedback.

Goodnight!

Out of commission

I'm on day three of a Migraine attack. It flirted around a bit on Wednesday morning and decided to move in a little after noon that day. I expected a migraine the day after election day--the deflation of all that pent-up stress and worry, the sudden rush of relief, and the election-themed shots at the bar that were such a good idea at the time.

What I didn't expect was to continue feeling this way. I've been out of commission for days now! Last week it was a cold and slight fever--this week it's migraine with slight fever. My Maxalt kicked in yesterday afternoon (day 2 of migraine) right before I went to babysit. After babysitting, I had plans to drive up to Greenville to see some friends play music, and I was pleased to still feel happy and excited about this. The Maxalt had finally kicked my migraine's butt. On the way home from the show, the left side of my face started to feel pinched and a bit numb; my vision dulled a bit. The migraine was coming back.

I woke up today with a very heavy head. Tried to rest, eat a healthy breakfast, and have plenty of liquids along with my daily herbal meds. I'd taken my triptan two days in a row (twice on Wednesday; once on Thursday), so that plan was out. Perhaps some no-impact exercise would help and would me to avoid having to take my rescue meds! I headed to the YMCA and swam laps for awhile. The water felt great, and moving around in the water distracted me from the pain a bit. Unfortunately, the visit was not an entire success: the goggles were painful to wear around my seemingly swollen head, and the water pressure wasn't doing my sinuses any favors. Afterward, my ears were killing me--I've always been sensitive to water pressure, but in recent years I've gotten earaches after swimming even if I've not gone too deep. After my YMCA adventure, I was definitely worse for the wear.

I drove home with blurry eyes and took some Lortab after all. Now I feel unpleasantly loopy, tired, and out of it. Have a big translation assignment due tomorrow that I put off at first because of my mom's visit (and the election excitement); now I'm putting it off because I am in such discomfort. I hate feeling like a slacker despite my knowing that I'm physically and mentally unable to do my best (and speediest) work right now. Still I feel bad.

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.

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

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.

guided reading/bibliotherapy

Has anyone heard of guided reading and/or bibliotherapy?  One of my graduate school professors is a big proponent and expert of this, and once I learned more about it, I realized I'd been doing it my whole life.  A teacher or mentor helps select reading material that a student may have a meaningful connection to; during and after the student's reading, teacher leads student to talk about how he/she felt while reading, what issues it brought up, and how it can help the student cope with his/her issues.  Well, that's it in a nutshell.

One thing I've noticed recently is the abundance of characters with Migraine in the books I read!  I don't mean to select works in which a main character has Migraine; I think it's more likely that Migraine is so very common that it's bound to come up frequently in both fiction and nonfiction.

Ian McEwan's Atonement comes to mind.  The mother in the story suffers from very frequent, debilitating Migraine attacks.  Think of Virginia Woolf and her struggle with headache as described in her own works, her journals, and in The Hours.  I could come up with MANY, many others if I looked at my bookshelf and gave it some thought.  

Reading about people who deal with Migraine--whether these people are real or not--helps me immensely.  Perhaps above all else is the fact that the author's choice to include a migraineur (or more) shows that he/she is immensely understanding of the disorder.  (Especially if the description of the migraineur rings true to a reader who knows the ins and outs of Migraine!)  In Atonement, Emily's children know when she's ill just by the way the house is lit, how it feels to walk in the front door.  That really resonated with me:  I remember running in the front door after school when I was young, realizing too late that I should've been quiet, that I should've heeded the signs.  You see, my mom frequently had Migraine attacks (or what I would call Migraine--I am not sure if she was ever diagnosed, but her headaches fit the menstrual migraine description to a T) and I'd know it was that time again by the cool, dark feeling of the house, the curtains in the den drawn as she slept on the couch.  Those days were always so sad.

In any case, I encourage you all to share with me (and therefore each other) any books you've read wherein a character deals with Migraine or another chronic pain disease.  If you've never read any books with such a character, I encourage you to do so:  you'll find a bosom friend who understands you.

MIgraines & aspartame

Before my own Migraine disease kicked in, I recall my mother's intolerance of aspartame (NutraSweet)--she realized after some trial and error that she got an awful headache whenever she had this sugar substitute. I kept on chewing sugar-free gum happily, not necessarily enjoying the hyper-sweet, chemical taste of the additive but not feeling sick because of it.

Cue the Migraine disease onset in 8th or 9th grade. Soon I became unable to have even a small dose of aspartame. Once, my senior year of college, I was doing classroom observation for my education minor and accepted a HALF a stick of sugarless gum. (The guy offering it was the teacher, a man a couple years older than me whom I found rather cute. Note to self and others: do not experiment with even a tiny bit of Migraine-triggering substance just to flirt with a boy! He'll end up being weird and creepy and not calling when he says he will.) Within an hour of popping the gum in my mouth (which I masticated for approximately fifteen minutes, I'll have you know), I got an aspartame-induced Migraine attack, first one triggered by the substance in well over a year.

My sensitivity to the stuff probably changes day to day, as is the case with most Migraine triggers. If I have a bunch of triggers happening all at once (stress, altitude changes, shifts in barometric pressure) and THEN I have some sugar-free gum, I'll probably get a severe headache. If I am feeling good, not feeling stressed, and the weather is flat in my low-altitude home state of Georgia, a stick of the gum might not effect me so severely. Dig it?

I'm really displeased with this article Google Reader just found for me. The FDA refutes all connection between aspartame and Migraine headaches. The article uses the incorrect Migraine terminology throughout, saying that some patients claim that aspartame causes Migraine--we here all know the key word should be "triggers" and not "causes."

Having a well-respected (ahem) governing body like the FDA purport that the connection between the substance and the disease is all in sufferers' head just leaves a bad taste in my mouth. Let me admit first that I am one part statistician (one very small part, but still) and do believe that, if at all possible, treatments should be thoroughly evaluated for safety and efficacy using a well-run, randomized study--double-blind and large, if applicable. I do think that you can't put 100% of your trust in people's anecdotal reports, especially if you're going to publish your findings in an official manner.

But.

But.

There's a LOT to be said for what patients experience that cannot be (or at least has not yet been) measured in a statistically sound trial. It drives me crazy to go to my neurologist and get up the guts to tell him about some weird reaction I think I might be having to one of the medications I'm on; it's even harder to tell his stone-faced nurse practitioner that I have weird side effects during my Migraine attacks. They seem to not believe me unless the same reaction/side effect has been discovered by one of the Big Pharma-sponsored studies. And this makes me angry. Very angry.

The aspartame-triggering-Migraine-attacks phenomenon is NOT a myth. We migraineurs are not banding together to bring down the NutraSweet company. The fact that I feel feverish despite my temperature being steady during certain phases of a Migraine attack is indisputable--but, oh wait! My doctor has never heard of that. I must be making this up.

We need to be cautious telling one another that something is a be-all, end-all cure--or a be-all, end-all, vicious trigger, for that matter. But we migraineurs' strength often lies in our grassroots effort to communicate with one another after having stepped away from the doctors' offices and pharmaceutical-company-sponsored "informative" sites. We have to open up the conversation about our disease, our pain, and what we perceive as truth. There's something afoot with the aspartame issue, and I will not lie down and pretend that I have been making up this association all along.

dishwashing dreams

Let's talk for a moment about how much my miniature (18"-wide) dishwasher has changed my life and, potentially, helped my migraine frequency.

I've been wanting a dishwasher for months--nay, years! I hate, detest, dislike, and loathe doing the dishes by hand. My kitchen is very small and there was no room for an in-cabinet dishwasher--or so I thought until I found the GE Space Saver dishwasher.

The contraption was installed a month ago and has CHANGED MY LIFE. First of all, I don't have to come home with a sense of dread, knowing that yesterday's cereal bowl (complete with rotting milk) is at the bottom of the sink under last night's pizza pan. If I don't feel well, I can still have a snack without feeling stressed out about having to wash up the dishes afterward.

Let's face it: having to deal with chores drives me crazy and makes me feel inordinately stressed out. I've been known to have minor (or major, depending on how you look at it) freak outs centered around the messiness of my house on a monthly basis. (The word "monthly" is a key word here, folks.)

Not bending over the sink to scrub means fewer bothersome neck and back pains--pains which can trigger migraine headaches!b

The dishwasher had an unintended effect as well. Obviously I don't have to worry about doing the dishes or having stinky bowls pile up in the sink. I thought the glory would end there, that not stressing would be the main focus. Little did I suspect that having clean dishes most of the time would encourage me to eat more regularly. I no longer think, "Ooh, I'm kind of peckish...but I'll just have a few cashews so I don't have to wash a plate in order to make a snack." Now I can just bust that plate out, make some delicious snack, and therefore take that extra step that prevents a hunger-induced Migraine episode.

Yay for me!

If you have a few hundred dollars to spare (or landlords that just so happen to be extremely generous parents of yours), get a dishwasher. It shall change your life!

Janet'http://www.blogger.com/img/gl.link.gifs WEGO Health spotlight

I was interviewed for WEGO Health's spotlight feature!

Check it out here.

unsolicited advice

I've found the more I learn about Migraine disease--what it is and what it is not--the stronger my tendency to deliver unsolicited advice to strangers and friends alike.

Just tonight, a friend mentioned "headaches from acute sinusitis." My first instinct was to respond with, "Did you think they were sinus headaches? Did your doctor say they were? Sinus headache is actually not a valid diagnosis. You could be having Migraines."

My friend (and former professor) has been getting terrible, debilitating headaches more and more in the last couple of years. One of her nicknames is "The Human Barometer." All we informed migraineurs know this is a huge indication she's probably suffering from Migraines: debilitating pain that makes her sensitive to ordinarily tolerable stimuli, getting awful pain each time the barometric pressure shifts? A self-diagnosis of hypoglycemia because the pain rears its ugly head each time she misses a meal? She sure sounds like a candidate for Migraine disease diagnosis.

I've eagerly pushed for her to see her doctor to discuss a possible Migraine diagnosis, but, last I heard, she wasn't buying my argument. I felt I was physically restraining myself from pummeling her with a long list of signs and indications that one might be getting Migraine attacks. I tried to keep it easy, but I wanted to cry, "I love you! I hate that you're hurting! I think I know the first step to getting you better: figuring out for sure what you have!"

My sister has been getting Migraine-like headaches recently. Her over the counter painkillers aren't fitting the bill, and when she describes the headaches they sure do sound like Migraine. With a family brimming with Migraine sufferers plus a history of childhood headache, she sure is built for adult Migraine disease. But, as yet, she's not gotten a diagnosis. I want to force her to go to the doctor to figure this out; if it is Migraine, there's probably an acute treatment she can give herself when in pain. She doesn't have to suffer!

I always stop myself. I hate sounding preachy. This is one of the reasons I have proclaimed myself "The Migraine Girl"--I feel sometimes I am speaking from the standpoint of someone whose whole mission is to cut down on Migraine frequency and severity for myself and others. I want to spread the word, to share the gospel. But, in truth, a lot of people don't want to hear it. And I should respect that.

I wonder if anyone reading this has had trouble with this: seeing the signs in other folks but not wanting to go off on your Migraine disease diatribe.

Anywho. That's all.

The Spoon Theory

I have used very similar analogies in the past, but this author, Christine Miserandino, uses spoons as a metaphor for the limited amount of energy she has each day as a sufferer of lupus.

Reading this, I teared up at several points. It reminds me of something I once wrote regarding how I have to plan each step of my day and contemplate every little decision, always hyper-aware that an everyday occurrence could be the trigger for my next Migraine.

http://www.butyoudontlooksick.com/the_spoon_theory/

Check it out. I think anyone reading my blog will find it a good, sad, realistic read.

Migraine & travel

Tomorrow morning--ahem, THIS morning--I'll leave my house early to drive to the airport in rush hour traffic. My mom and I are flying to Virginia together to spend some time with my aunt and my cousins; it should be nice.

Despite my intense, feverish addiction to travel, I often dread the first day of it. Getting up on time, worrying that I have neglected to pack something, not sure if I'll make it to the airport in time, sitting under fluorescent lights in the gate area, the air pressure shifts in the plane, etc., etc.--all of these factors combine and, more often than not, result in a Migraine attack.

For this trip, I didn't follow step one of my own advice, but I think I'm doing well with the rest of it.

Tips for traveling migraineurs:

1. Get organized a couple of days before you go. This way, you'll feel less stressed regarding the packing process and will remember to add forgotten items, as you'll have more time to realize you've not packed them. For me, counting out all the pills and vitamins I'll need during the trip (adding on an extra day's worth for good measure!) is the first step I take. Too often I've been on vacation and reached for the medicine bottle only to remember it's still in my cabinet hundreds of miles away!

2. For people like me who know fluorescent lighting is a trigger: If you're staying in a hotel or with friends/family, ask your host about the lighting situation. Will there be fluorescent lights at the hotel? Request incandescent bulbs IN ADVANCE or else your home away from home won't be as comforting and healthy as you'd like. Will there be fluorescents at your friend's or family's house? Ask them if they could pick up a few incandescents on their next shopping trip--you'll pick up the tab. And remember: always have your eyewear to protect yourself from unavoidable lighting!

For those of you with phonophobia and/or trouble sleeping: bring earplugs! You never know what will be happening around you, and missing out on good sleep will drive any person crazy--and it will make it more likely you have a migraine episode.

3. Have all your medication packed in your CARRY-ON bag. In the rare chance your luggage is lost or delayed, you can't afford to screw up your schedule, especially since your normal life routine has been shifted around for the day.

4. Have abortive meds nearby--in your pocket or in an easily accessible part of your carry-on bag. No worrying that you have to wake up the snoring man next to you in order to get your meds from the overhead bin--just keep them very close! Even if you don't have an episode, you'll be comforted by the proximity of your salvation.

5. Tell yourself (and your traveling companions, if applicable) you have Migraine disease, and tell them when you're nearing your limit or when you won't be able to participate. Don't eat foods that are on your list of triggers just because a very charming hostess has offered them up to you. Don't go to the amusement park if a long, hot day in the sun will make you sick. Be honest with yourself so you can best enjoy your free time, and don't try to pack in too many things without scheduling in some down time.

6. Carry some granola bars or other healthy snack with you to combat low blood sugar. Most of us know by now that skipping meals is a sure-fire migraine trigger for most. Keeping a snack or three in your purse or carry-on bag could very well save you from having a Migraine attack when you're rushing to and fro and have no time to get a meal.

I'm sure I could ramble on, but I'll leave it at that. I was going to write another post for this here Migraine Blog Carnival, but since I'm leaving in a few hours' time, I have travel on my mind.

Speaking of that, I need to take my own advice and remind myself that it's time for bed. ;)