no work again for me today...:(

It's probably the changing of the seasons. At least that's what I'll blame for my increased jaw pain (I didn't think the constant ache could get any worse!) and general fogginess/slight pain in my head that hasn't left me alone for days.

Through my regular job, I found out about another opportunity that would get me out of the house on Friday mornings. Wanting to have a tangible reason not to sleep the morning away my only day off (excluding weekends), I thought I would take it. Delivering food to kids whose families perhaps can't afford to feed them over the weekend is an uncomplicated job. I see lots of people at several schools around the county and have a couple of hours of driving, listening to music. It's pretty pleasant, overall--and a really sweet deal. I do have to do lots of lifting and carrying of boxes, though, and that's what I just wasn't up for this morning. I woke around 8 and couldn't rid myself of the feeling of dread. I don't feel horrible at the moment, but I am fairly certain that hours of picking up and carrying boxes will mean a guaranteed, full-blown headache instead of this fuzzy pain I feel in my jaw, cheekbones, and eyes. Can't risk getting a major attack--had to cancel work.

I feel like I'm pretending, like I'm that kid on the playground who can't keep up with the rest of them so fakes a quick injury to solicit pity and have an excuse to give up. Logically, I know this is not who I am. But I feel not only guilty but lazy, unmotivated, etc. A few days ago I wrote about coping with guilt when I have to bail. I really need to get better at feeling at peace with my choice to say "No, I can't make it."

help for those having trouble paying for prescription drugs

Someone on MyMigraineConnection.com mentioned getting free and/or affordable medications through programs found on this site, Partnership for Prescription Assistance. I just finished filling out my applications and am hopeful! I applied for an insurance plan recently, too, so some of this HAS to pan out so I can finally afford to take care of myself!

Thought I'd share this resource with you all.


Goodnight!

an outpouring of support

It's been fewer than twelve hours since I posted a link to this blog on my myspace & facebook pages. I wanted friends & family who were interested to be able to look at this blog that's been somewhat of a secret in my life for two years now.

Imagine my delight to get such an outpouring of support even before the clock struck noon! My aunt, a couple friends in Athens, a good friend in Europe, and some old high school buddies all sent messages to let me know they had read some (or most, in my aunt's case!) of the blog and sympathized with me. Apparently I hadn't let on how much trouble migraine disease causes me on a day-to-day basis. My tricks to try to look like I'm living a totally normal life seem to be going over well! Ha.

Thanks again for reading. I've said it before, and I'll say it again: I think blogging is really helpful and therapeutic for those that want to write or read about migraines and chronic pain. I hear tell of a Teri Robert-run yahoo group for migraineur bloggers--I'll be sure to update you when I learn more.

I'm coming out!, or, shredding this veil of secrecy

Well, kids, it seems high time I finally just tell you who I am. I'm sure only 2 of you out there are even wondering, but I feel it's an important step for me to say who I am once and for all. As it stands, my mom and sister know about my blog, and they're two of the people who could get hurt most by it (not due to any secrets I spill, more because reading about my illness makes them upset).

My name is Janet Geddis. I am a 28-year-old resident of Athens, GA. As you may already know, I've had migraines since I was 13--unfortunately (for myriad reasons, the most significant of which was doctors' not reading the signs) I wasn't diagnosed until June 2001. I'm a tutor, storyteller, and general carouser--I am in the market for more stimulating work that's just as meaningful as helping kids and teens.

Here is a photo of me mid-sentence. Quite thrilling, indeed.

That's all for now. Just thought I'd share.

Writing this blog has been so very therapeutic for me; to know that there are others out there who can truly sympathize has worked wonders for the sadness that's often concomitant with this disease. Thank you all.

patients helping patients

http://uk.reuters.com/article/healthNews/idUKCOL76981320080227

This is a pretty interesting update! It's certainly not surprising. I feel that those of us in the blog community (readers and writers both) are helping each other similarly!

I can't make it--I have a migraine.

I cancel plans. I cancel plans a lot. One of my least favorite things about having migraine disease is my need for lots of quiet alone time, even if I don't want it. I love being social; I love spending time with friends, going to shows, grabbing a beer, or sitting around having craft night. But the migraines often get me down.

Sometimes I just don't commit to something I would love to attend. That late-night party down the street, the one that's sure to be fun and full of dancing and friends? "Maybe--if I don't feel bad." The movie I've been wanting to see is playing the night before my period is to arrive--most likely I'll have a migraine then, so going to a movie is just ruled out before I even consider making plans.

Other times, I bail in fear of a migraine. Big events like weddings, funerals, holidays, and other much-anticipated events are almost sure to be accompanied by an attack. A couple of years ago, I got an invitation to a good friend's wedding. I took some factors into consideration: 1, most weddings entail my pretending to have fun and socialize when really I have throbbing pain behind my eyes; 2, going to an old friend's wedding doesn't guarantee you'll actually get to talk to that person; 3, The venue was nearly two hours from my home--and I didn't have the inclination or money to spend the night in the same town as the wedding--that means I would have a long drive there and back--more triggers.

Out of fear, I wrote a sweet note to my friend and declined the invitation. Turns out she was hurt and disappointed--she'd really wanted me there; I was one of the first friends she'd met as a seventh grader in a new town. So I went. And I had fun. And I got a migraine on the way home.

Mostly I cancel plans at the last minute when I have an attack coming on. Even if the meds I take do work, the postdrome means I'll be sleepy and out of it and not in the mood to socialize. A few years ago, I'd pop Imitrex or Relpax while at a busy rock show at midnight, sure the headache would be gone in a few minutes so I could continue dancing and rocking out. I was usually right in my judgment then and ended up back up to par an hour or so later, ready to continue to the night. I don't feel that way anymore. Now I skip out when I feel the migraine coming on and head straight home, realizing that if I push myself I'll feel worse.

Canceling plans makes me feel terrible; my guilt merely compounds the pain and nausea I'm feeling, and that simply doesn't help anyone, the friends I've canceled on or myself. My friends and family are extremely understanding: they know of my health condition and their first priority (and usually mine) is to take care of me. But I still cannot get over the feeling that maybe, just maybe, they think I'm flaky. That I've let them down. That I can't be counted on. And I can't seem to figure out how to get over that.

I read others' blogs, read mantras about taking care of myself, read stories about people going through similar things. Maybe one day soon all that will click. Logically, I know the the choice I make to go home and try to relax is the only healthy choice I can make. Emotionally, I continue to feel like I'm undependable, and that feels pretty rotten.

please insure me!

I sucked it up and spent the last couple of hours learning about insurance plans (again), reviewing optional plans (again), looking up insurance-related vocabulary (again), and filling out details about my health (again) in the hopes that an insurance company will let me be a part of their money-grubbing workings and not reject me (again).

Thank goodness for ehealthinsurance.com--I like being able to see all my options laid out at once. There's also a "chat live" icon you can click--a chat window opens up and you can ask the folks whatever questions you might have. There's a longer wait time for this feature on Saturdays, but hey--they're around on SATURDAYS!

I'm trying not to already feel hopeless about this, but man! It sure did take me a long time to fill out all the forms the last several times I tried to get insurance, and everyone rejected me. Perhaps cutting down the number of prescription drugs I'm on should help.

Anyone have a particularly good plan that helps a lot with your migraine care?

Have a nice afternoon/evening, depending on where you live!

crying wolf

Most of us chronic pain folks have written or talked about it before: that uncomfortable feeling you experience when you're trying to figure out if you are having a pain attack or not. For the last few days, I've had this general feeling of unwellness. Chalk it it up to the allergens floating around my head, chalk it up to the fluctuating temperatures in my town. In any case, I haven't felt good in several days, not ever for more than a few minutes at a time. Always lurking, always waiting, is that dull pain that may or may not signify the coming of a migraine.

Should I take my preventive meds (now Maxalt, formerly Relpax) to stop the pain in its tracks? Or should I just try to relax and not let the pain get the better of me? In the former case, I fear I'm taking a $20+ pill for a migraine attack that will never escalate. In the latter case, I skip out on the meds and, a short time later, look up or wake up to realize I have a class-A migraine headache on my hands.

The pharmaceutical industry would have me pop a triptan the second I have any "sure" hint of a migraine appear. But what is a sure hint? How about the many days I just feel less-than-okay, just a little under the weather and not sure if my situation will get worse? I certainly can't pop a Maxalt each time I feel the beginnings of a headache, as that status is rather frequent in my life and I would have my maximum amount of allowed triptans already in my body by the time a Real Headache rolled around. I would have cried wolf on my subtle pain so many times that by the time the Real Pain took over, I wouldn't be believed anymore, wouldn't be allowed to take the drug that could let me escape.

A conundrum. A problem. One I've been dealing with for years now with no real results. Anyone have any comments about this?

helpful treatment for TMJ dysfunction and migraine?

I was perusing the comment section under Jeff Tweedy's insightful blog on The New York Times site when I saw that one of the inventors of the Face Caddy had posted. I rarely follow people's self-published links to websites that profess to know the answer to my pain, but this was different. First off, the writer didn't annoy me with any obnoxious claims that the product would definitely cure a migraine or TMJ pain. Second, the website (http://facecaddy.blogspot.com) for the product doesn't reek of shameless self-advertisement. The guys who invented this product initially made it for those recovering from a common operation we like to call "the mini-facelift." I have a family member who suffered for weeks after her operation, and something like the Face Caddy would've come in handy.

But let's not go off on a tangent just yet. The folks at the site then went on to say that they didn't have the response they'd expected from plastic surgeons. Surely the doctors they spoke with would be happy to recommend a lush, stay-in-place recovery tool instead of the usual "hold a bag of frozen peas to your face" remedy. Right? Wrong. The plastic surgeons they spoke with didn't care one way or the other for this implement and the inventors hadn't gotten any further with their creation. That is, at least, until they happened to speak with a chiropractor, who said he wanted to order several of them for his patients who suffer from TMJ dysfunction and migraines.

I took the bait and ordered one on the spot. You see, another reason I was so ready to buy a product I'd ordinarily dismiss as another false promise was this: the pain in my jaw and near my right ear hasn't let up for well over a month now. I used to be an occasional sufferer of TMJ dysfunction, experiencing pain only for brief stretches of (usually stressful) time. Not the case now. Weeks straight of not being able to open my mouth as widely as I should. Jaws cracking and popping at the smallest yawn or bit of food. I started wearing my mouth guard again and even have some muscle relaxers I pop now and again before bed to decrease the chances of my grinding my teeth.

But to have something I could wrap around my head and fill with either heat or cold, cold relief? Whenever I was feeling especially bad? Even if this product wouldn't rid me of TMJ pain entirely, at least it would soothe it in doses. Right? I hope so.

I just got back in town from vacation and my Face Caddy was on my porch. To the delight of my boyfriend, I wore it the entire time we watched a movie last night, alternating between the heat packs and the cold packs (you have to order an extra set of packs to be able to switch 'em out quickly like that). It felt gooooood. And when the boyf woke up in the middle of the night with extreme shoulder and neck pain, we wrapped the Face Caddy around his shoulder so it became a shoulder caddy. It's so much softer than a traditional rubber water bottle.

I think this means I like it. And it brings me much pleasure to say "face caddy" as many times as possible in a brief period of time. Face Caddy, Face Caddy! Ha. A cheesy but entirely apt name for what seems to be a soothing product. I'll let you know if there are any significant updates either way.

a sudden cloudy feeling; relief

When I awoke this morning, I heard rain outside my window. Great. This is the day each week I do my traveling-and-loading-and-carrying-indoors-and-out job, and doing all that in the rain didn't sound like the most amazing situation. Rainy days have been triggering fewer migraines for me of late, and I was happy to notice that this pattern seemed to be continuing: upon waking and hearing the rain, my first thought was, "Oh no! Headache day?" Sitting up and having a sip of water or three with my morning Petadolex rid me of my fear--no headache, not even the dull, stubborn, moderate pain that was affecting my neck and head as I tried to sleep.

The ever-helpful beau traveled with me today to deliver food boxes. (One of my gigs involves delivering food to kids in need every Friday, food that will allow them enough snacks and meals to last them all weekend until the school week begins again.) The migraine didn't attack until we were all done and sitting in a Peruvian restaurant having chips, salsa, black bean soup, and tacos. Unlike the majority of episodes I've had in the last several months, this one escalated rapidly--I was unable to tolerate the noise of the kids two tables away all of a sudden, when just twenty minutes before I hadn't much noticed their babbling and yelping.

"I have to get out of here," I must have said five separate times. The waiter seemed to be moving in slow motion. Would it be better to go outside to the car for my meds or just wait until we'd paid the check? Should I cover my ears to block out those whining kids or should I lean back and rub that space between my thumb and forefinger that seems to dull my head pain?

I placed a dissolving Maxalt tablet on my tongue, expecting quick relief.
Two hours later, I lay in my bed and had a Naprosyn sodium tablet and another Maxalt.
Fifty minutes later, I decided to grab my laptop and see if I'd missed any important emails while working or lying down. I put the laptop on the bed, half-lay next to it, and suddenly felt this refreshing cool, cloudy feeling rise from my chest all the way to the space behind my eyes. Waves of this cool fog came through my body over and over, even more intensely as I bothered to take note of them.

It's been a while since I last was awake and fully conscious during the sudden relief of a headache. My trusty Relpax slowly began to be less and less effective, so I usually ended up falling asleep until a couple hours later, waking to find I was no longer in pain.

This time I was aware. Awake. Grateful.

That doesn't mean I'm not going to sneak in a nap for an hour or so. Goodnight.

Wilco's Jeff Tweedy speaks out at last!

I'm pretty thrilled about The New York Times migraine blog, as you probably will have noticed by now. From the first day I spotted it, I noticed that Jeff Tweedy (Wilco, Loose Fur), one of my favorite musicians, was to be a contributor. Day after day, I checked the site and saw nothing from him. Imagine my delight when tonight I checked the site again and he had written a really honest, beautiful post about living with Migraine, panic attacks, depression, and an unceasing love of music.

Here's the comment I made:
As a HUGE Wilco fan who never knew you had migraines until this website launched in February, I've been waiting with baited breath for your post. I have been reading every writer's post and think that yours is my favorite thus far in terms of how well I can relate.

By the way, beginning just weeks after buying A Ghost is Born, I started fast-forwarding the end of "Less Than You Think." Once I told a friend it reminded me of having a headache approach. Little did I know that was the inspiration. You achieved the goal!

Thanks again for writing. I hope you have some more to say about it later, in this forum or another.

muscle relaxer for TMJ dysfunction: an experiment

I've mentioned my trials and tribulations (more trials than tribulations, of course) with TMJ dysfunction. In the past several weeks, I've had daily pain and can't open my mouth too far--bad when you're an outspoken, semi-ridiculous human like me. On Monday, my neurologist gave me a prescription for Baclofen in the hopes that I could wake with less pain each day. I took one pill two hours ago or so and don't really feel anything except slight boredom (watching bad TV while you're typing is the reason for that), an achey back, and the usual jaw pain. No headache to speak of, though--that's a good sign.

No more Mr. Nice Girl

As some of you may know, I had a checkup at my neurologist's office early Monday morning. In a post a couple weeks back, I showed you the letter I wrote to him requesting that he be the only person I see during my visit. I suppose I shouldn't have been surprised to receive a call from his assistant/receptionist person and not him. She started out the voicemail all wrong, calling me by the wrong name (the name she chose, and quickly corrected, is one I really dislike--though it sounds a lot like my first name, it drives me NUTS when people call me it; in seventh grade I won the most prestigious award in school and the principal announced this name instead of my own--ew!). She had a message from Dr. _____ himself for me (if they talked about it, why couldn't he have called me himself): he wanted me to know that he takes the time to see every single patient at each visit but that it's just not possible to guarantee that I'd have my visit with only him. The point that he visits with every single patient was reiterated twice. (Um, shouldn't a doctor see his patient? Am I to feel honored that he bothers with a personal visit at all?)

I was not impressed with the outcome.

On Monday morning, I showed up on time for my appointment, having commuted the night before. (I slept at a friend's house in the big city so I could be ready and rarin' to go in the a.m.) I asked told the never-smiling-yet-never-exactly-rude receptionist (NOT the one who called me, mind you) that I requested to visit with just Dr. _____, even if it meant waiting a little longer for the appointment to start. She was, to put it mildly, unhelpful. "There's probably no way that can happen," she began unapologetically. "That's just not how it works. We have to follow protocol, and there's no way to know in advance who's going to be free to take you back for your initial consult."

"I understand that. I did write a letter requesting this, though, and--"
(Interrupting): "That's just not how it works. It doesn't matter if you write a letter or call or ask now, you just go back with whoever's free." Interrupting. Unsmiling. Unhelpful.

I retreated tearfully to the fluorescently-lit waiting room, adding one last deflated, "I get it, but for the record, that's my request." I lost.

Moments later, my Least Favorite Nurse Practitioner emerged. She's the entire reason I ever began requesting neurologist-only visits; though my request was only granted once in a few years, I did have the good fortune of having a better NP take me back for the initial consult during my last several visits. To my relief, she called back the only other patient waiting with me. A moment later, that patient reemerged and she said, "I'm sorry--I meant to call you, ____. I haven't had my coffee this morning." "Neither have I, no problem," I said, hoping that for once we had established some kind of friendly banter.

We walked into the room in which the patient sits and answers questions using the frustratingly simplistic Likert scale questionnaire. The shades on the windows, which cover an entire wall, were all drawn. The overhead fluorescent light was only feet above me, ready to start an attack. "Do you mind if we dim the lights a little?" I asked in what I heard as a pleasant voice. Nearly every doctor or professor or any other person with lights like this I have seen in the last few years has been more than accommodating when I make this request--surely someone who specializes in migraine treatment would understand, eh?

Wrong.

"Um...we could, but I wouldn't be able to see," she said. I am not one to assume folks are talking down to me; in fact, when I find out that someone isn't a big fan of mine I tend to be pretty shocked. Therefore I do not think I was imagining the slight touch of patronization in her tone. (Duh! Darkness means you can't see! Why didn't I think of that? I guess I was foolish to believe that she could open the blinds and let the sunlight come in. I'm so dumb.)

Cue the teary eyes again. I knew this wasn't going to go my way.

She asked me the open-ended question, "How have your migraines been?" but only listened for the first couple seconds. She had opened my file and was reading the letter I'd written to the doctor, the letter in which I requested I not be seen by the likes of her. Great. She zoned out while I talked about my condition. This was probably extraordinarily productive, and it certainly made me feel as if she cared. Ha.

We began the classic "On a scale of zero through three, how bad have your headaches been? How many days have you missed work? How many social events have you missed?" routine. Any time (seriously--ANY time) I tried to clarify my answer ("Well, that's a 2, but only if I've had alcohol the night before..."), she looked at me or the computer screen blankly, finger hovering over the mouse button, waiting for me to end. Every time I was finishing my explanation she'd cut me off with, "Okay," and then launch into the next question. GRRRRR!!!!

The visit with the neuro. was okay. The NP had updated him on my answers, my weight, and all that jazz, so he just had some questions about how well I was tolerating the Petadolex and wondered if I wanted to try Imitrex. "You've never been on that, right?" he asked, repeating the question she'd asked me. "Uh, yes. For three years or more." "Oh." Thanks for reading my file before my visit. (Granted, this error in forgetfulness would have been excusable had I not had the buildup of frustration already.) He slapped his legs lightly with the palms of his hands, indicating he was about to stand up and walk out. "Oh, I do have a long list of questions for you." Boom. There I go taking the visit into my own hands. Go me! Except it didn't feel good, or victorious, or especially helpful. I felt beaten down and rushed despite his understanding smile and pretty good answers.

I think it's time for a new doctor.

Thanks for bearing with me.

MigraLens, Irlen, etc.--do special lenses work?

I write in the hopes you can help me. I am interested in biting the bullet and finally buying sunglasses that were made with the photophobic migraineur's needs in mind. Does anyone reading this have Migralens or glasses made by Irlen? If so, tell me what the lenses are like and how they're working for you. I'm especially interested in their effectiveness in combating fluorescent lights.

worst day in awhile...

I awoke this morning around 8 AM knowing I'd have a migraine soon. I made myself eat some breakfast, and I had a cup of tea (two teabags: one traditional black tea bag, one herbal peppermint tea bag) in the hopes that the smell would calm me and the caffeine would help. No such luck. Breakfast seemed to zap all the energy I had, and I took a nap for a couple of hours in the hopes of waking up refreshed.

In the evening, I got up to shower and begin my day at last. The vague pain and fatigue that had been bothering me all day set in completely--within five minutes of standing up and walking around my house, the pain was sharp behind my left eye and I decided to take some meds. I got a little desperate today and now have way too many things in my system: I took a Naproxen tablet this morning, had three Petadolex as an abortive measure (you can use P. as a preventive and/or an acute treatment), and eventually took my Relpax when I realized the other pills were doing nothing. Still no results. Last but not least I had one Lortab--this is my barely used last resort.

I didn't want to cancel my plans, so I went out with my friend. As we walked downtown, I said, "Wow--the lights on the buildings look so sharp and bright tonight. And beautiful. Don't you think so?" "I don't see that." "Really?" "Yeah. Oh, no! Does this mean you're getting a migraine?" "Oh, I already have one. I've had one all day."

An hour into our dinner all the medication seemed to hit at once. I felt the telltale tingle of the Lortab (followed by the itchiness that is an obnoxious side effect!) as I sipped the coffee I'd ordered, my vain last attempt to rid myself of the pain. It all helped at once and I had a great night despite all the foreign chemicals rushing through my veins. I really don't like being hopped up on meds, but the way I feel now is far superior than drifting painfully through that fog I waded through all day.

Goodnight.