the best is yet to come!

I've been doing better and better at staying positive--it helps that my migraine frequency and severity have both plummeted in the last month and a half, I know.

Goals for 2009:

• Eat well (and according to doctor's instructions) -- this means limiting dairy (wah) and cutting out as much refined & white flour as possible. This means eating more fresh fruit and veggies. No regular intake of sugary sweetness.
  
• Exercise frequently. No need to pressure myself to become a runner or hard-core cardioaddict. Just regular, gentle exercise. Slow laps in the pool, long walks around the neighborhood, yoga class. Take it easy while staying in shape and keeping those delicious endorphins and serotonin levels coursing through my body.
• Accept my life as it is and figure out which goals of mine are realistic. Don't take on too much. Meditate. Learn to calm myself down and lower stress. Don't overcommit. Do make time for friends and family when possible and healthy. Don't give myself guilt trips for not accomplishing every single thing I have ever considered.
  
• Sleep as regularly as possible. Try to cut out naps (wah). Wake up around the same time each day.
• Don't get intimidated by the above goals! Any little bit I can do will help; the more I do, the better off I am.
  

I wish you all good health and happiness in 2009. I haven't been blogging as much because I haven't wanted to think too much about migraine while feeling well. No, I don't think I'll jinx myself or anything; it's just that, for the moment, I don't need this outlet as much. Oh, okay--and I think I'll jinx my current good fortune just a bit.

That being said, goodbye for now! Talk to you next year.

9 days and counting

Excuse me if I sicken you with my sickly sweet view of the world again, but I'm feeling great! The past few days I have been staying at my friends' new house in Atlanta, and I've been overexposed to triggers that usually work on me like clockwork, causing me to pop a few triptans in order to function.

Here are the things that usually tip me over the edge, especially over Christmas:

drinking a fair bit of alcohol (two nights in a row, at that!)
sleeping in a place where cats might jump on you and meow in the middle of the night
slight cat allergies (sad.)
changing weather patterns (sunny to cloudy, cloudy to rainy, rainy to soaked, creepily warm to freezing)
interrupted/disrupted sleep (2:30 AM bedtime one night, 4:45 AM the next, 11:45 PM the next)
driving in the car in unfamiliar, trafficky areas
having my period
exposure to fluorescent lights
exposure to cigarette smoke
loud music

In the last four days, I have experienced inordinate amounts of the above-listed triggers and am still alive to tell the tale. Nine days without the need to take a Relpax or Maxalt--and on those days I've felt really good, not half-blah as I often do on my non-migraine days.

Of course I'm hesitant to chalk it all up to the 4-6 weeks of regular exercise, but I do think that's the key player in this equation. Add that to the fact that I am hopeful--truly hopeful!--about my chances of operating like a normal human being again and you get one optimistic, good-feelin' girl.

Merry Christmas. I hope my next post is just as pain-free, and I wish you all happy, HEALTHY holidays!

hope!

I had my much-anticipated appointment at one of our city's hospital's Mind-Body Institute today. The doctor met with me from 10:10 AM - 12 noon, uninterrupted, in a room lit with two small lamps. We talked the entire time about my health and my life (which he'd taken the time to read about already in the extensive intake forms they send to you before your appointment). I have a long list of things to do to help myself, all focused on regulating my serotonin levels and keeping them up. As I've seen a huge change in my pain and fatigue levels since beginning more frequent exercise nearly a month ago, I have the highest hopes that continuing to keep myself active, fit, and well-nourished will lead to less pain.

I'll write more about it later--I must go get new tires put on my car. But for now I just wanted to drop by and say that, for the first time, I have hopes of really improving my health and cutting migraines out of the picture most days of the month!

Love,
me

I wash my hands of this!

After nearly four years of being on my condo association's board of directors (first as secretary, then as secretary/treasurer, and now as treasurer), I have felt some relief: due to my urging, we are going to hire an association management company to take over! I'll still retain my fancy title but with 99% of the work going to the management company and not to me. No more putting notices in people's boxes, asking them to clean up their yards! No more invoicing neighbors for their late, monthly condo dues! No more meeting with accountants multiple times a year to work out the books and file the taxes! No more emailing homeowners asking them to get their tenants to clean up the remnant's from Friday night's party! No more emailing association members repeatedly with getting very little in return! No more feeling guilty because I didn't do as much as I felt I should have (despite no one else doing much at all)! No more reminding people once a month that they cannot leave garbage in piles OUTSIDE of the cans! No more calling the garbage service to ask them to clean up extra mess! (See photo.)

Yay! Joy! Heaven!

There's still more work to go, but that works is OURS (and not mine), as it should have been all along. I can't say how many neighborhood-related woes have contributed to migraine attacks.

Whew.

Dinah won't you blow, Dinah won't you blow...

WARNING: THIS POST MIGHT HAVE TOO MUCH INFORMATION FOR THE NON-MUCUS-FRIENDLY OR FEINT OF HEART.

I have had this bout of sinusitis for at least (at least!) a week now. Despite a Z-pack, lots of rest, and some doctor-recommended over-the-counter meds, the cough and mucus are not going away as quickly as I'd expect. Ugh.

On Tuesday night, the night before my doctor's appointment, I was doing the routine nose-blow-before-bed move when, all of a sudden, liquid started coming out of my right nostril. A lot of it. For a few minutes, I continuously blew my nose and clear, very warm water (water?) came out of my right nostril. At first I couldn't help but be relieved: it seemed that as soon as this strange liquid was brought forth, the pain in my cheek and ear immediately became MUCH better. So much better. But then I got a little nervous. I've never seen anything like that happen before and even thought about calling J. to see if it'd ever happened to him. "Oh, you're worrying for nothing," thought I. After the few minutes of the clear stuff (which was nothing like mucus, mind you) coming out, it seemed the coast was clear. I sat on my bed cross-legged and--suddenly--plop! It was dripping from my nose and onto my pant leg. GROSS. A couple more tissues and everything was fine. As if it'd never happened.

I told the doctor about this episode because it seemed so strange to me. Okay, my cyberchondriac self knew the chances were slim, but couldn't there be a chance I was leaking cerebrospinal fluid? (I didn't voice this concern to the doctor, but I had voiced it to myself the night of the weirdness after a twenty minute internet search.) As I told her about the episode, she frowned and looked at me: "Well, since you edit medical documents, I'm guessing you might be a bit concerned about a cerebrospinal fluid leak?" "Yes!" (I didn't mention that I don't edit anything dealing with CSF leak ever and that it was a late-night Googling session that made me aware of the problem in the first place. Let her think I have professional interest.) She told me that she really doubted there was a CSF leak, but that if it happened again like that I should call her and make a trip to the ER. She said it was quite possible that the severity of my sinus problem could have meant that for days my mucus has been building up in my sinuses. I was staying well hydrated, and the water I was drinking wasn't able to mix well with the older, thicker, nastier mucus so the watery stuff was sort of building up behind the old, gross mucus. Once I cleared that old, super-green mucus out for the moment, the watery stuff was released in a gush. Maybe. (Yuck, right?) She then said, "And it's not as if you've had any head injury lately, right?" "Actually, I was in a car wreck in mid-November and had a minor head injury." Oh. Then let's keep an eye out just in case something else is up, kids!

The waterfall phenomenon has not happened again, but that doesn't mean I'm not keeping an eye (a nose?) out just in case.

And then tonight something strange happened. I have been feeling a bit better today--just a few coughs and much less need to blow my nose (though I certainly am obviously sick, both audibly and visibly). Had a migraine this morning (period-related) but Imitrex wiped it out immediately. I blew my nose before settling into bed when suddenly I realized I couldn't stop. Couldn't stop blowing my nose, that is. I spent five minutes blowing my nose, people--and everything was coming from the right nostril. It seemed each tissue must be my last, but within 2-3 seconds I could feel more coming immediately. Then the clear feeling for a second, then the need to blow my nose. (Here's when I go into even more detail, for those of you who are as gross as I and have continued reading this far!) The mucus was green but not as thick as it's been for the last few days. It was green and really thin and liquidy. And it kept coming. For 5-7 minutes. TWELVE tissues' worth.

Does anyone have any insight? I'm hoping this all can be easily explained. I have never had such a sinus problem last so long, so perhaps this is just par for the course when sinusitis has progressed as far as mine has.

Still--let me know your thoughts, even if you are as gross and crazy as I have sounded in this post!

Goodnight!

doctor's diagnosis: sinusitis

I was nervous to go to the doctor today. I called around to a few clinics and urgent care centers yesterday afternoon to see what places could take me soonest and at what price. Despite reading a couple lackluster reviews for the health center closest to me, I booked an appointment anyway. Were I needing to see someone about Migraine, perhaps I would have been a bit more cautious. But since I was going in to get some antibiotics for a seemingly routine sinus infection, I figured it wouldn't hurt to see a family doctor and hope for the best. The initial appointment is only $50 (over $110 cheaper than my second option, and 4 miles closer to my house!); after that, you pay on a sliding scale based on income information you provide to the clerk. The maximum payment for a doctor's visit is $50, however. Awesome.

It's been over two years since I had a good, old-fashioned, regular (read: non-neurologist, non-ER) doctor's appointment and I was pretty nervous. I prepare myself for a meeting with someone who might not be a good listener, who might not be warm and caring. Despite his being warm and kind, my former neurologist was not the best listener--his NPs were atrocious, but that's a whole other story.

This feels silly, to be basking in the glow of a great doctor's appointment. Who does this? Someone who has been treated as if she were just another routine appointment to check off the list during a very long, very typical day? I'm not sure. Someone who's used to people trying to play her (contractors for home improvements, car repair folks, insurance companies)? Maybe. In any case, I was really happy with almost every aspect of my time spent at the place.

First off, I must give props (ew--I've never said that before and hope never to again; I'll keep it in to remind myself of that solemn oath) to the receptionist I spoke with yesterday afternoon when making the appointment. She heard how stuffed up I was and was really warm and very helpful: "Oh, honey, you don't sound good! Let me see if I can squeeze you in tomorrow morning. And I'll call you if something opens up this afternoon!"

Despite my better intentions, I drove to the center instead of walking. Hey, it was raining and I felt sick and the .9 mile drive probably didn't kill the environment all that much. By the time I left, the rain was POURING down and I was grateful to have a car. I walked in to a room half-full of families of various races. Seemed most people had colds or the flu--it is a rainy December, after all. The guy at the desk was really friendly, even when I walked up to the window after an hour to ask when I would be seen. Yeah, that was the frustrating part--my ten o'clock appointment ended up being at 11:05. Alas. Luckily I didn't have anything better to do than sit and read.

Oh, oh! The WAITING ROOM! I'd brought my red-tinted shady glasses to protect my little eyeballs and brain from the inevitable fluorescent lights, and guess what? The waiting room was softly lit with low-wattage incandescent bulbs. Oh, what a relief, especially when the wait was a bit long! Even my highly revered neurologist, a headache specialist, has glaring fluorescents in the waiting room. (I really don't mean to rag on him and his staff so much--apparently I have some pent-up bitterness!)

I got weighed and was a bit disappointed--turns out the post-Zonegran weight I successfully gained has, for the most part, dropped off again. Still technically underweight by a couple pounds, but I don't look creepy-skinny or anything. Not at all. I waited in the exam room for a while between nurse and doctor visits, but I passed the time by reading an outdated People--I hadn't realized just how bad the writing and stories and fluff had gotten! Not my style. The doctor walked in and I immediately felt a sense of relief--she was young, smiling, and genuinely apologetic about the supposedly atypical wait. She seemed knowledgeable about Migraine disease, patiently listened to my whole story of the cold-turned-sinus-trouble, and made some OTC drug recommendations as she prescribed an antibiotic. I mentioned something else troublesome to her and she was really comforting and helpful on that front, too--more on that later. For now I'm freaking myself out a bit over a symptom that could very well be nothing, so I'll just wait it out 'til I forget about it again.

All in all, I was really pleased--can you tell? What a sense of relief! How great to have a ten- or fifteen-minute appointment with a doctor who listens, who's friendly, and who didn't act like I was crazy when I mentioned weird symptoms I was concerned about. Three cheers for new doctor! I have a checkup next week. If I'm still this infatuated, maybe she will become my regular family doctor! Yippee.

Very sleepy and very sinusy and very drugged up.

No significant migraine pain for eight days, kids. EIGHT DAYS! True I have this sinusitis frustration, but it sure does beat a migraine episode!

blog theft!

Dude, what the hell? (Sorry if I revert to Bill & Ted talk, but I'm quite miffed!)

I got a Google blogs alert for a blog entry called "the migraine girl: what's so pernicious about feeling good?" The document is mine, but has been rewritten to include random spaces, deliberate misspellings, and the like. I of course posted an entry called "what's so bad about feeling good" on November 30. I did NOT post it on some b.s. site called "Best Farma Online." I've been stolen from! Right?

I recall talk from other migraine bloggers awhile back about a guy stealing their content and posting it on his supposedly authorless site. (No author listed, harder to know who's behind it.) I can't remember what action they took or how they got him to remove the plagiarized material.

Help, bloggers!

For the moment, I'll be posting a comment on this person's web page immediately. I'm so annoyed and angry!

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.

December headache blog carnival posted!

And no, I didn't get around to posting this month. Yet again I forgot! :(

Happier Holidays: December 2008 Headache Blog Carnival

green snot alert

Gross title, I know. But apt if you were to step into my life this very day.

I've had a cough/cold/stuffy head for over two weeks now. We all know I get angry about my own (and others'!) lack of health insurance, but at times like this that anger really flares up. I am confident that this is a cold. I am not being helped much by over-the-counter medicines and, now that the cold seems to be morphing into a sinus infection, I feel that I may soon want a doctor's help/antibiotic prescription. But I won't go to the doctor for this. First off, I don't have a general practitioner anymore. Used to have one but, as per UGA policy, I can't go see her now that I'm not affiliated with the university. Alumni not welcome. Wah. Never bothered getting another GP because, well--I had no insurance and no inclination to drop a few hundred bucks to see a doctor just so I could establish a relationship with him/her.

So now I'm green-snotted and stuffy-headed. Sinus infections can be extra obnoxious for us migraineurs, as we're oft used to having stuffy heads related to migraine attacks. Stuffy heads can lead to migraines or be a side effect of certain stages of migraine. I don't want my stuffed self to turn into stuffed-and-migrainey self. So far so good, but still.

I'm so mad that I can't call up a friendly doctor and say, "Hey there, this is your patient, Janet! What's going on? Listen, I'm feeling icky and think I might have a sinus infection. Could you be old-fashioned-doc for a sec and call in a prescription for me? Oh, you can't? That's okay--how about I make a drop-in visit to your office this afternoon. Cool? Cool."

Last time I made a doctor's appointment I was told it'd be over TWO MONTHS 'til I could get in to see the doctor. That two months is almost up--I have my appointment with this guy in mid-December. Many an Athenian has told me he can work wonders with migraineurs, focusing on lifestyle changes. I love a good holistic doctor who's not a quack--this guy is supposedly the real deal. I'll drop a couple hundred with fingers crossed and get back to you. It's gotta beat the rude service and hyper-prescribing tactics I ended up encountering at my neurologist's office.

Scratch that: EX-neurologist. I think I may have forgotten to mention that I dumped him a month or two ago. Yay, me! I gave him and his office a chance to keep me, but they didn't seem to give a crap. Alas.

Anywho. The 15+ day cold isn't much aggravating my head, though a big cough can certainly give me a burst of mild head pain. Ick.

I'm off to blow my nose. Jealous?

attempt at ponytail: fail

I put in a tiny little ponytail this afternoon--it's the first time I could put most of my short hair up and have it stay. I figured I could wear it for a couple hours before it started hurting my scalp.

Scratch that plan: it's been twenty minutes and I'm taking the thing down. Boo!

Little annoyances like this of course don't matter in the grand (or not-so-grand) scheme of life, but they really bug me. I can't even wear a ponytail if I want to! I can't sit in a friend's house if a scented candle is lit! I can't wander into a bar where smoking is allowed even if I love the band that's playing! Wah, wah, wah.

how wonderful is THIS?!

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

what's so bad about feeling good?

Well, there's really not so much bad about feeling good. Now the mission is to find what's good about feeling bad, I guess.

The rain came in yesterday and continued without ceasing for hours upon hours....In fact, it's 1:15 AM early Sunday morning, meaning that, as far as I know, it has rained every moment of the weekend.

The mood I was in while writing that last post seems so far away from me! I'm not feeling awful, but I did have a rough day chock full o' migraine pain that would not dissipate despite two Imitrex tablets and a Naproxen sodium pill. Alas. The last few days were so wonderful, though--I think I have more of those to come. I'm going to try to make a point of being more creative, productive, and active on the days I feel well.

This evening I did get some q.t. in with friends and a certain little week-old baby I know. That does a body good. (Pass it on.)

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.

stinky stinks

Yes, we know that strange smells bother many migraineurs, and I am but one of that many. More often than not, smells really get on my nerves but don't trigger migraine attacks. Occasionally, though, the smells are so strong or my brain's state is such that one sniff of an undesirable fragrance can spin the migraine gears into action, bringing about a bad attack.

As much as I dislike cigarette smoke, I appreciate one thing about it: I can tell when it's coming. You can see the smoke, and you can (usually) walk away. I anticipate the smell and ready my brain for it; often I pull my hands up to my face and create a makeshift mask from the loosened sleeve of my shirt or jacket. I can walk away, or I can ask the smokers (if they're friends) to get clear away from me. In the grocery store, I can create a wide berth between me and the fish counter; if I catch a whiff of a strongly cologned shopper, I can relocate to another aisle and leave my nose in freedom.

What is irking me at the moment is the awful, horrible, plasticky chemical smell that seems to have taken root in my nostrils and my mouth, seemingly leaving my tongue with a gross coating, as if I'd stuck my tongue out and colored it with a Sharpie and topped it all off with a dash of turpentine.

I bought a spool of new CD-Rs and decided to take a blank one out and finally make the photo CD for a friend who asked for it ten months ago. (Lazy Jane strikes again!) The packaging was a bit hard to get off, but once I removed the crinkly plastic, I was ready to lift the cakebox-like lid off the CDs and grab a blank one.

The smell wafted toward--nay, slapped!--my face. The stench of melted plastic, old permanent marker ink, manufacturing chemicals, nastiness. Yech. I replaced the lid immediately after removing a CD, but it was too late. The smell now lives on and in me!

Do you ever feel as if a smell has stuck with you, that there's nothing you can do to rid your body of the scent? This happens to me all the time, but when I mention it to others, they don't seem to know what the heck I'm talking about. I could leave the office right now and step outside, but the smell of these CD-Rs would still linger in my nostrils and in my mouth. It takes a while for me to shake smells away, to have them leave my system. Sniffing a strong perfume is not something that lasts just a moment for me--the smell takes up residence in my nose and mouth and won't leave me for quite a while.

Anyone else experience this phenomenon?

curses to you, prodrome--bearer of false hopes!

I've been having a rough time of it lately, migraine-wise. This is the tenth day this month that my life has been moderately to severely affected by Migraine attacks. (Since attacks can last up to 3 days--and sometimes more--it's hard to say how many attacks I had this month. It's simpler and more significant, perhaps, to say how many days were affected by Migraine.)

Ick.

Last night I started to feel wonderful. Just wonderful. I had more energy than I remember having for weeks. I dashed around the house, firing off emails and reorganizing jewelry and hanging up all the posters and artwork that's been waiting to be hung for months. La di da! Janet felt awesome. A little voice in the back of my head warned that this could be the euphoria that sometimes accompanies my prodrome. I thought to myself, "Self, you're being overdramatic. There's no way another migraine could be coming along--you JUST got over one this afternoon! This is what it's like to feel normal! Enjoy it."

This morning, Tuesday, I awoke a bit earlier than usual to meet with my friend C. for his birthday--we had breakfast together. While sitting at the restaurant, I felt that old familiar feeling behind my right eye and in the left side of my sinus cavity. Ignore it, ignore it. I had a few tiny cups of coffee (amounting to 20 oz. total, probably). Drank a couple glasses of water. Ate some breakfast. C. asked if I'd be at his birthday get-together that evening, a roller skating party (hearkening back to elementary school party traditions). "Yeah, I don't see why not!" I said in a cheerful voice; in the meantime, I could feel my head throbbing and figured I might be in for yet another day in bed.

It's been seven hours since I had breakfast, and the pain is a little bit worse than before, but not horrible by any means. What I don't like is the way it teases, the way I think I'm feeling great and then suddenly, harshly realize I'm wrong as I move too fast or bend down to pick something up. I don't want to miss another party. I don't want to miss out. I want to feel the way I did last night.

For now I'll continue spending time by myself. I can't take any triptans since I already took 'em to the limit this week, and Naproxen doesn't do much good for me. I'll just wait. And hope for a better day tomorrow.

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!

my mean thought for the day

I've said before that I wouldn't wish the pain, disability, and frustration of Migraine disease on anybody. Now I'm calling myself out--I'm a big, fat liar.

I DO wish every single person in the world could have just one Migraine attack. I don't wish chronic Migraines on anyone, not even my former next-door neighbor who was inconsiderate and rude, with a tendency to party LOUDLY well into the wee hours of morning despite my asking him to shush. I don't want people to have the worry that comes with chronic migraines; I don't want anyone to frequently break plans, feel unreliable, and feel guilty for not being as active and healthy as others.

But man, oh, man. I wish people could experience an entire Migraine attack. I want those disbelievers to know for themselves that Migraine is not just a headache. I want them to feel how difficult it is to conduct any normal activity while having a Migraine. I want them to realize the disease is very real and not imagined or psychological.

Maybe I'll ask Santa for this wish this year--if he doesn't scold me for being mean-spirited and then give me a lump of coal instead.

wreck wreck wreck

Yesterday I was in a little thing I like to call a car wreck. Got hit on the driver's side and front of my car when a distracted dude ran a red light. Yeow!

My car's condition is in limbo: will it be declared totaled, or will a shop repair it and try (but fail) to restore it to its old glory? It's sitting all lonely and sad in a local tow yard. Poor baby. The whole front section of the car got knocked off--when you look at the car from the front, it looks like a burgundy colored face whose jaw has dropped clean to the ground. Surprised at something.

Various fluids of varying colors poured from the car and down the asphalt. Not sure what exploded, but it sure did leak.

To my happiness, no one was majorly injured. J., the beau, was in the passenger seat and ended up with lots of muscle strain/sprain and a headache. I hit my head on something (don't know what) and had a REGULAR HEADACHE plus some muscle straining and pain. Now I am achey but expect the feeling to go away after a few days. I hope this doesn't spur further health issues.

I don't know what the point of this post is. I feel oddly out of it. I'm used to taking Lortab as a Migraine attack rescue med now and again, but taking it for muscle aches along with this muscle relaxer makes for a very out-of-it Janet. I may well be writing nonsense here. So be it.

I can't tell you the last time I had a headache that wasn't a migraine. It was such an unfamiliar feeling: tightness all around my head, a dull ache that didn't throb or pierce. It's gone now, thank goodness, but it made me think about those who have tension headaches and NOT migraine. Recently a friend told me that she used to be one of those people who thought migraineurs were big sissies, that migraine headaches were actually just pretty bad regular headaches. Migraineurs were whiners. Wimpy whiners. But then she got her first migraine attack and finally realized she'd been wrong all that time--the pain of migraine is nothing compared to your average headache.

What if I could always have headaches like these instead of migraines? thought I. It seemed almost a luxury to have head pain that didn't distract me from life, pain that was irrefutably present but not debilitating. I'm jealous of the millions of people who don't get migraine. I'm so very jealous.

We've now reached the end of my rambling. Tomorrow I get to resume what is already another kind of headache: endless calls to insurance companies and the hospital. Wish me luck!

clean house!

Tomorrow morning, a wonderfully friendly (and highly recommended) house cleaner is coming over here. I'm so excited. She's going to clean my house from top to bottom!

Here's the sad truth, folks. I hope you don't respect me any less (assuming you respected me in the first place) and hope your judgment is not too harsh. But let me lay it all out for you: I do not clean. Really ever. I can pretty well count on two hands the number of times I've thoroughly swept my house's hardwood floors. I can count on one hand the days I've mopped the floor. (There was that 5 AM after party mopping session conducted by my friend D. and me--we had to go over the living room floor literally 7 times in one night to clean up. But it WAS a good party. We'll count that as one mopping session, however.) Once every couple of months I clean the stove, and I'll wipe the linty baseboards in my bathroom-cum-laundry room if they happen to catch my eye. Getting down on my knees to scrub hurts my back, irritates my mood, and leaves me feeling generally unwell. Even if I were entirely healthy, I can't say that I'd be a cleaner.

What I can do--if I so choose--is organize. I love shelving (alphabetizing & organizing) books, rearranging picture frames, making sure my desk is just so, and having my bed made most days. Though it doesn't often look too impressive, I like having the bathroom counter organized and fairly sparse. I like the laundry to be folded immediately after drying and put away promptly. But I do not--repeat, DO NOT--scrub and polish and scour.

I'll leave that to my maid.

Oh, I'm so excited!!! Hiring a cleaner is yet another step in my slow-moving, quite unofficial plan to remove stressors from my life that I don't really need. I was stressed out about the election--hey, I think everyone was. That's normal. I get stressed about work and try to remind myself that remaining calm is better. I get stressed about my Migraine disease but try not to let that get out of hand. These, to me, are legitimate reasons to worry once in awhile. Keeping a house clean is not.

So here's what I've done so far to help myself be less strung-out and annoyed over highly controllable things:

1. I got a dishwasher. I save myself hours of back-bendingly uncomfortable dishwashing each month. I load up the dishwasher as I use dishes, so there's never any counter mess. I love it.
2. I have started giving things I NEVER use and no longer love away to friends and on freecycle. Just a few weeks ago, some girlfriends and I had a clothing exchange party: we turned my entire house into a modest consignment store, putting different types of clothing in each room. Each of us ended up with at least a modest loot; the remaining clothes and accessories went to one of our city's wonderful thrift stores. I have posted lots of giveaway items on freecycle, ridding myself of old toaster ovens, tables, accessories, etc. I no longer need.
3. I bought one of those over-the-toilet shelving units I swore I'd never get. It's a bit weak and blocks some of the light from the window, but it has saved me lots of room. Now my bathroom cabinets aren't stuffed with crap; in fact, they're fairly organized and have stayed that way for weeks!
4. I have tried more and more to be less hard on myself for not keeping the house clean and organized all the time. Practice may not lead to perfection, but I'm getting better at not beating myself up too much for being messy and/or dirty.
5. I hired a house cleaner. And I should probably get out of this chair so I can see if there's anything else I can put away (aka hide in drawers) before her morning arrival! Wish me luck.

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.

move aside, CFLs--LEDs are coming in

Check this out! They're still expensive, but LEDs are slowly but surely making their way into the marketplace.

Here's my comment on the article:

As fluorescents (including CFLs) trigger vicious migraines for me and many other migraineurs, I can say I've been anxiously awaiting the arrival of household-use LEDs for quite awhile. I can't wait to use a bulb that will [at least soon] be even more energy efficient than any fluorescent bulb--and no pesky mercury worries and no barely-discernible flickering that'll trigger migraine attacks. Hallelujah!

http://themigrainegirl.blogspot.com

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!

yoga nidra

On Sunday at noon, I went to one of Athens's many yoga centers for a yoga nidra class. (I just wrote "noga yidra" and had to erase it. Thanks, Imitrex, for your charming effects on my brain.) My friend A. was about thirty seconds into her explanation of it when I decided it would indeed be for me.

As someone who's done yoga nidra twice, I don't feel equipped to aptly (or accurately) describe it. From a layman's perspective, it goes a little something like this:
1. Lie on your back on the floor, preferably on top of a yoga mat or comfortable, thin cushion.
2. Cover your eyes with a soft cloth or eye mask. (For people who can tolerate the smell, a lavender-infused eye mask is nice.)
3. Adjust your body so you are as comfortable as possible.
4. Listen for instructions.
5. 45-75 minutes later, you're done. You have not moved that entire time.

This yoga can be done by even those of us who aren't flexible or super-athletic. Let me reiterate: YOU DO NOT MOVE FOR AN HOUR.

The teacher (or kind British voice on the free mp3 recording) will have you get in position and relax first. Then you'll "rotate consciousness" (skeptics, just go with it) by focusing on one body part at a time. The "61-point" focusing exercise is repeated 2-3 times and really does leave you feeling relaxed and mushy and good. Then you are led through some relaxing breathing exercises and visualizations. The goal afterward is to feel more refreshed and ready to live life, as a properly done yoga nidra session is supposedly as restorative as four hours of deep sleep.

Interesting stuff. And it feels so good! It's also interesting to willingly put yourself in that stage that occurs between wakefulness and sleep, that lucid dreaming zone where it seems as if you're having an out-of-mind experience, watching how your brain works as your body calms down. It's really, really interesting. I promise.

I refer you to this Wikipedia link and really encourage you to read it. Yoga nidra is especially recommended for those whose brains race, who have chronic pain, who have been feeling stressed or anxious, and more. It takes awhile to get used to the practice, but I'm told by the yoga teacher and other practitioners that every time you do yoga nidra it helps you--and every time the session is different because you yourself have changed since the last time you practiced.

gentle yoga, part 2

I had another good hour-long yoga class yesterday. It was hard to believe that an entire week had passed since my last class! Of course I started to give myself a hard time for not going to yoga several times a week, but within a few minutes I refocused my thoughts and patted myself on the back for finally making the time and effort to go once a week. I'll build up to more classes as my body and schedule allow. (It helps ease the guilt when I see that the other relevant classes at my nearby studio are offered when I am working.)

The teacher gave me a couple good tips for taking care of my head. The most important recommendation for yoga movements (according to her)? Try not to put my head below the rest of my body to avoid having the blood rush to my head. (For example, in child's pose, she thought it'd be good for me to rest my head on a soft yoga block instead of having it all the way down on the ground. As I detest the feeling of blood rushing to my head, I will take this advice!)

"narm!" (arm numb...narm!)

For those of you who are Six Feet Under fans, there's a slim chance you know what I'm quoting in today's post title. If you're confused, worry not: I shall not enlighten you. I will tell you to watch Six Feet Under, however. I've watched the entire series twice over. I love it.

But back to business: my left arm has been a state of discomfort for a few days now, and my hand has hurt off and on. I suspect a pinched nerve. Yeow! You know when you awaken after sleeping on your side and your arm feels out of whack and slightly numb in spots, slightly painful in others? That's how my arm has been feeling for DAYS. My sneaking suspicion is that my usually funky back has done something shady to the nerves that run down my arm. I'm going to give it a little more time before saying uncle and spending the dough on a doctor. It's crazy how large a portion of my ever-dwindling money pile goes to health costs.

Sometimes I wonder if I'd be more apt to see a doctor if I had insurance. My immediate response is "YES," as I now feel I would not take health coverage for granted as I did for the first 26 years of my life. I can't imagine being able to see a doctor and not having to pay an arm and a leg--the thought has become hard to wrap my mind around. When I did have insurance, I didn't like going to the doctor, though. I postponed visits and didn't have a tendency to make appointments to investigate such things as numb arms. Maybe now that I've grown older and wiser I'd change my habits. Maybe the subject is null and void since I don't have insurance and won't have it for awhile.

Poop da loop. Off to a productive day!

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.

stinky stinky transportation

I had the best intentions of writing about all the migrainous adventures I had in Panama & Costa Rica, but that has yet to happen. This morning I was reminded of one element of my trip I should definitely describe: the stinky transportation.

You're probably imagining fumes, exhaust, and dust in an overcrowded capital where there are no auto emissions laws, and you're right. But dangers accompanied the swankier rides I took in private vans (for work) and in a big ol' pickup truck that was all decked out (one part of the long journey between Panama & C.R.). The relatively comfortable passenger van that picked us up at the hotel each morning and dropped us off each evening was operated by a really friendly, smiling guy named Achurro (sp?). All the seat belts worked! There was enough room for everyone!

The problem? The car potpourri/deodorizer. I couldn't see one of those obnoxiously overbearing scented cardboard trees hanging from the rearview mirror; in fact, the smell seemed to be pumping out through the air conditioner. Ugh. On a few rides, the smell didn't bug me so much; on others, I held my hoodie up against my nose, as I am wont to do in a smoky bar before I make my escape.

I survived the flowery van stink, but since I was immersed in a sea brimming with Migraine triggers that week, it probably did me more harm than good to be in that van 1.5 hours/day on average.

Cue Stink Ride #2: Jim and I got a taxi in Changuinola, Panama to drive us to the Panama-Costa Rica border. This time, I could see the culprit: two of those stinky cardboard trees dangling menacingly from the rearview mirror. "Unwind your window," Jim gestured to me. I did so despite the unpaved roads and the air conditioning the driver had generously turned on. The driver looked back after a couple of minutes and pleasantly asked in Spanish if I would roll up the window. I felt downtrodden and on the edge of tears (as I tend to feel when I'm getting a Migraine and feel there's no end in sight for the next while), but I sucked it up and explained why I had the window open. The driver's eyes lit up, and he explained to me that he, too, was sensitive to the smells--this, in fact, was the only one of the scented trees that didn't give him a headache. He totally understood and we rolled windows down further to look out at the endless banana plantations. For that moment, I was safe again.

People sometimes shut you down, I know, but--for the most part--it's rather touching how understanding others are if you just speak your mind.

yoga at last!

Today, after my eye exam, I went to the closest of my neighborhood yoga studios and took a free (donations-based) yoga class! Titled "Gentle Yoga," today's class was just that. It lasted about an hour and did not involve any hard-core stretches; the teacher repeatedly told us that one of the focuses of her gentle yoga class was to get a feel for how your body reacts to different stretches, how it feels to breathe in different positions, and how to balance your body better. I had a good time, and (dare I say it?) for a minute there I actually felt like I was doing some good. And by that I mean I think I am going to be sore tomorrow.

As a girl who used to be in excellent physical shape, it's sometimes hard for me to hold back a little when I get active again. I must remind myself that I am no longer capable of the exertion and exercise that were once easily within my power, that I must work up to the point where I can be a super-duper exercise woman. Oftentimes, I am fed up with my inability to perform as well as I did at age twelve and give up. I don't want that to happen this time.

Speaking of overdoing it because I was convinced my body still held its youthful pre-teen powers.... Once I took a kickboxing class with my AmeriCorps friends in Florida. I was all over this class, pumping my fists in the air, kicking my legs high, and doing ceaseless lunges while pretending not to be winded. That night and the next day, my comrades were wiped out and sore, while I felt great.

And then came the day AFTER that. And the several days that followed that one. I was sore, sore, sore, and the soreness in my body helped trigger a lovely little spell of Migraines. I had ignored the teacher's warning to take it easy if we'd never had a kickboxing class before, that it was okay to hold back now and again rather than overdoing it. Oops.

Today in the yoga class I was tempted to stretch more than my body was willing to--I wanted to show those people that I had innate yogic ability! I could suddenly be flexible in my legs even though I have NEVER been able touch my toes. But then common sense whispered in one ear while the teacher spoke in the other: listen to your body. Be mindful of how different movements feel, and don't do certain positions if something feels wrong.

So then I chilled out and enjoyed myself more. My favorite part was the last five minutes of relaxation with a lavender-infused eye mask, though. Maybe in a few months' time I'll say that the hardcore stretches are my favorite, but for now I liked the lie-down-and-rest-while-breathing.

Hello, Four Eyes

I'm going to a franchised eyeglass/eye exam store today to get glasses. I looked at the prices/selection at one of the only local eye businesses, and the prices were just too high. Sorry, local business. I've bought from you before but can't do it this time around.

I'm going to Pearle Vision, whose eye exams are purportedly half the price of Lenscrafters' exams. (Pearle = $40. Lenscrafters = $80.) Let's hope the people are as friendly and helpful in person as they have been over the phone.

In a sense, I feel as if I'm givin' up the dream--the Irlen dream. But my two attempts to reach the only listed Irlen representative in Georgia have been unsuccessful, and the rose- and anti-glare-tinting Pearle offers will help a LOT, I think. I think.

Right now I feel daunted by the high prices I'm about to pay. Clearly I will be spending a lot, despite the lovely AAA 30% discount and any other specials they throw at me. Getting new glasses is a HUGE investment, so part of me--a BIG part of me--is tempted to try to cheapen the deal, not going for all the fancy lens coatings and filters they offer. (A well-trained skeptic, I sometimes go overboard in my mistrust of salespeople and the things they offer unto me.) But lots of [unofficial, online] research and some reading of official manuscripts in medical journals has led me to this: I will buy those fancy filters. I'm goin' for as many as I can get, as different people and different studies suggest that each of the fancy filters I'm about to list has helped with glare, night driving, computer-staring, and--tadum!--fluorescent lighting. I'll go for the rose tint on a pair, added to the UV filter, polarized lenses, and non-glare coating. I'll be migraine-free--and broke--before you know it!


Tee hee.

I do pay tons to visit my less-than-steller neurologist & company in Atlanta every few months. Considering the price of gas, the 1.5-hour ride, and the $135 appointment fee (not payable by my credit card), I sure do pay a lot to TREAT my migraines. Why not pay a lot to help prevent?


Fingers crossed. Thank god for my AMEX and the necessary things it helps me buy. Can't wait til my first work paycheck comes in and I can pay off some of my Migraine-induced debt!

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.

Panama week 1

As some of you know, I went to Central America for a couple of weeks; I got back this past Saturday. Before getting there, I looked up reviews on our hotel on TripAdvisor.com and was alarmed to note that customers had problems with the service, the mold, the humidity, and the dirtiness of the hotel. Great. Before leaving for Panama City, I emailed the hotel and requested a clean, dry room with incandescent bulbs. Got no response.

Oh, the room was even worse than I'd expected! The pages of the novel I brought were wrinkly within fifteen minutes of my taking it out of my bag--that's how humid the room was. I asked for incandescent light bulbs at the front desk TWICE. I'd understand if they didn't have any, but what I didn't understand was the fact that there was utterly no response to my request. Nothing. No "I'm sorry, we don't have them," or "We'll see what we can do." Nothing. My friend/roommate/coworker was in the midst of a horrific sinus infection, so the humid and dirty room made her sick, too. The hotel problems go on and on, my friends. On and on. The second night onward we stayed in another hotel (as arranged by our very understanding boss).

The entire first week of the Panama trip had us in a conference room for up to eight hours a day looking at a projected Power Point presentation talking about editing. The sessions were informative but tedious. My coworkers were kind enough to turn off the fluorescent lights much of the time, but sitting in a desk chair looking at, in essence, a gigantic flickering computer screen on a white wall helped intensify my Migraine. Combine those workplace triggers with stress, daily thunderstorms (shifts in barometric pressure), having my period, having stayed in a mold-infested room, and really loud construction & traffic noises whenever I stepped out doors and you have a week-long Migraine attack! Ugh.

Most days I was run-down but felt better with my triptan therapy. Once I ran out of chances to take my Maxalt, I had to drug up with Lortab and hope for the best. Wednesday we left the workshop around 3:30 to take a city tour. The tour guide was a Panamanian coworker who is, indeed, a professional tour guide. Too bad I felt HORRIFIC and ended up with my head between my legs in the back of the van for the last hour of the trip. My roommate (who's also one of my very best friends) guided me up to the hotel room and brought me some sushi in bed--first time for everything!

Here's a photo of me after receiving my food tray in bed. Look how nicely the chef arranged and packed the sushi for transit after hearing that the diner was ill! (In the photo, I am making an extra-sick face for show. All the same, you can see how pale I am--it's rare that I see photos of myself taken during a migraine attack. I think they're kind of scary.

travelin' again

I'm leaving for Central America today. I'll spend the first week at a medical document editing workshop (wowsers), supposedly from 8 AM - 6 PM Monday through Friday. Please let it not be that intensive, as sitting in [what I presume will be] a fluorescently-lit room and talking about editing all day sounds rather...overwhelming? (And I'm the sort of dork who likes to talk about punctuation and spelling!)

Last time I was in Central America, I had one migraine in six weeks. Did you hear that, kids? One big'un in six weeks--and that was the day I found out my grandmother had died. I won't have the same liesurely schedule as that 2004 trip, and I'm only staying for 2 weeks and not six. But maybe...maybe...Costa Rica & Panama are the answer!

Wish me luck. I'll keep you posted if I have the means and inclination.

an unexpected (but unsurprising) side effect of Migraine

Sorry to not have much original content on this post and the last one, but this story caught my eye! I have oft said I wish I had an extra-strength prescription in my glasses for when I'm getting a Migraine--my vision gets worse during my aura and the headache itself.

http://www.metrowestdailynews.com/news/x1657300501/Police-say-migraine-led-to-Trolley-Square-crash