pushing the menstrual migraine out of the picture

In late October, I had my regular checkup with my neurologist. I let him, as well as the nurse practitioner, know how horrifically painful my menstrual Migraine had become. The night before my period comes, the pain sets in behind my eyes, following a brief aura marked by blurry vision and eye twitching. It's a Migraine, all right, but its pain is different somehow, different from the other Migraines I get the rest of the month. I get it in the evening and, sure enough, my period's there the next morning.

Six days later, the pain will start to recede. Hundreds of dollars in medication later, I start to function moderately normally again.

As I've probably said before, I can't do what a lot of women who have menstrual problems do: because I have Migraine with aura, it's dangerous for me to take the combination pill (birth control), which could help lighten my periods and therefore lessen the pain. So I have to muster through it, right?

Wrong. There are options. And my doctor presented one to me.

I'm at the end of my cycle now, and I've not had the menstrual Migraine that's plagued me for at least a decade. I can't believe how great I feel. Starting two days before my menstrual headache begins, I take Frova once a day; twice a day I take Naproxen. Now that my period's gone, I can stop the regimen and not take these drugs again until my next period.

I can't believe the menstrual Migraine's not here. Something I saw as an inescapable reality has been, for at least this month, escaped.

stories from the moneyless trenches, or, "well, that certainly explains a lot."

For numerous reasons, I just compiled a list of all my out-of-pocket medical expenses for 2006. For the first three-quarters of 2006, mind you. Before I reveal how much of my own cash I've dished out to pay for treatment, over-the-counter medication, and the ridiculously overpriced prescription medication I rely on to function somewhat normally, keep the following tidbits in mind:

1. I have had a health insurance plan all year. True that it switched last month, but I've been covered all year, and total money I've spent, the total I'm set to reveal, does not include health insurance plan costs. My sweet parents helped their then-student daughter with that burden.

2. I have had a health insurance plan all year. But I still pay exorbitant amounts for prescription drugs. That's all I'll say about that.

3. I'm only counting costs of things for which I could find receipts. Those of you who know me well know that I am not the best at holding onto small bits of paper with teensy numbers written on them, so who's to say what I might be forgetting?

4. I don't have a steady source of income. Seeing this number might not seem like much to you, but when you think of how I only work a handful of hours a week and have not even a steady part-time job (let alone a full-time one), it might hit home that this amount of money is what it takes me to make in surprisingly lengthy periods of time. But finally it makes sense to me why I don't have money--it's true that I spend almost everything I have on Migraines. Yay, head! Suck up my money! Yeehaw. (It's true that seeing this grand total, though shocking, is a source of some relief--at least I know that I had money at some point, and that it wasn't all a dream.)

Okay, here we go: $2,625.

*I mean my tone to be matter-of-fact, not whiny.

ten days and counting

I'm used to having a minor headache every morning and evening, but a full-blown Migraine headache each and every day for the last ten days? Give me a break! I called my neurologist a few days ago and asked for even more Relpax--my prescription ran out a bit ago but I keep having to order more to fill in the gap of time until I can go see him for my appointment in four weeks. Usually eighteen pills (three boxes at ungodly prices per box) would last me awhile. The first of the eighteen I asked for a few weeks ago. The most recent batch of six I bought from the pharmacy just three days ago--there are only two left, and I have 32 days until my appointment.

I'm going to have to call and beg for more.

I'm going to have to get the seasons to stop changing so that the weather doesn't aggravate my head.

I'm going to have to get the rain to stop coming and going as it does so that the barometric pressure doesn't wreak havoc on my brain.

I'm going to have to find something to do before I become a drugged-up hermit forever.

a surprise in the mail

I got a bill from the place where I got my MRI in late June. My insurance didn't cover the MRI, as it turns out. I owe $2,260.

Remember how I mentioned that I have $48 in the bank?

it's getting hot in here (so hot)

Does anyone else feel a slight increase in body temperature when a Migraine has set in (or while it's beginning to set in)? I don't know if this is something new with me or if I've just begun to notice it in the past several months, but it's probably something I should take note of.

The other night I was talking with my friend J., who has had her bouts with Migraine disease for quite a while now and only recently has become more informed about her ailment. She has a perhaps related (perhaps unrelated), as-yet undiagnosed thing going on where her temperature will suddenly go up and she cannot concentrate. Is this part of a Migraine aura? Is it connected to Migraine at all? She says her temperature only goes up one or two degrees, but it's enough that she cannot focus on whatever task is at hand and she feels immediately flustered and out of control. She has had lots of blood work and tests done; no doctors have figured out why her body temperature is so out of whack.

Since she was only recently diagnosed with Migraine, I'm wondering if the body temperature fluctuations are indeed related to Migraine--but since she hadn't been an "official" Migraineur until recently, doctors didn't have the wherewithal to connect the two elements. Or maybe I'm just making this leap since my own temperature has been up a degree or so during Migraine episodes in the last few months (or longer).

Any thoughts? I suppose I won't generate much feedback since I don't have readers. But I am curious--so if you're one of the few people out there who's looking at this, let me know if you have any thoughts on the matter!

Thanks!

a partner in crime

In her essay "In Bed," famous migraineur Joan Didion mentions how fortunate she is to have a husband who is also a Migraine sufferer. Don't get me wrong here: she's not grateful that he has to go through painful headache episodes. Rather, she highlights the invaluable importance of connecting with someone who understands that a Migraine is not "just a headache."

As a woman in my mid-20s who sees her default status as "single," it's always been hard for me to accept the idea of depending on someone else for assistance. This, in part, may be one of the reasons I've not actively sought after a boyfriend figure for many years. One hurdle I feel I am never ready to jump over is the Migraine revelation: in the words of All in My Head author Paula Kamen, I rarely feel comfortable or prepared enough to "come out" as a Migraineur. Men (or boys, as they case often was) who've heard about my CDH and Migraine disease have had a variety of responses, both long- and short-term. No one has responded in a deliberately negative fashion, thankfully. I've had the ones who react with the, "Yeah, we all get headaches, so why don't you just plow through it or take an Advil?" (but delivered politely). And I've talked with people who have been patient with me, wanting to do their best to help me through the pain but not really having any idea what I was going through. Maybe it was my fear, but I really felt as though they would not have wanted to stick around for real life with me: as much fun as my life often is, there is a darker side to it, a side where I am teary-eyed and blinded with pain, needing to be locked in my room with earplugs in as I try to block out the world. I don't think that anyone I've dated thus far has been prepared to stick around for that; I don't know if I've wanted any of them to be the ones to do it, either, so I'm not trying to badmouth them.

As I mentioned in my last entry, I started dating someone a few months ago. I believe it was during our first long conversation out on my screened in porch, only hours after we had met, that I went ahead and told him about my Migraines. (I could be wrong--maybe it was a couple of nights later--but it was very soon into the dating period for me, uncharacteristically soon, which speaks well of him and of my comfort level.) He told me that he, too, suffered from debilitating Migraines and had had them for decades. Fast forward three months later, and we have had the [un]fortunate opportunities to take care of one another during our times of illness: times when he felt so sick he had to lie down on the cool hardwood floor under the bed, times when I felt so awful I sobbed until he quietly held me and patiently explained how crying would probably increase the pressure in my head and make the pain worse, and could he make me some herbal tea instead?

Knowing that someone understands what I'm going through has made a world of difference. I do have friends who suffer from Migraines, friends with whom I discuss Migraine attacks, possible triggers, and medication. But in recent years I've not had someone there to help take care of me when I'm in severe pain, and it is turning out to be some of the best medicine around.

I'm still ill, and I don't think any one thing or one person will cure me: I'm beyond such wishful, nonsensical thinking. But I do find all these things to be grateful for that are all around me. I have only $48 in the bank right now, but I have a credit card that's not maxed out, so I can pay for my drugs when I need them, and I realize how fortunate that makes me. My friends and family will be there emotionally whenever I call for them and, quite often, when I don't. I think I do need to learn to call for them when I need the help they're so willing to provide.

As usual, I feel I've gone off on a tangent, so I'll close for now.

Goodnight.

it's been a long time...

I suppose I should address this blog to myself and not to my nonexistent readers. I started it as a tool to help myself and instead of sticking with it, I sort of let it fall by the wayside. No, I definitely let it fall by the wayside. I could chalk it up to the Great Computer Crash of 2006 (read: spilled a whole glass of water on my old laptop) or to lots of travel from May - July that interrupted my writing patterns, but I won't. I had plenty of time to write and didn't use it. I should have made it more of a daily thing and I didn't. And that's that.

From early June until mid-July, I had an amazingly wonderful time in my little old head. (Or, as the case may be, my oddly large head--though I am a thin young lady, I usually have to wear hats in size XL...hmm.) I could count on one hand the number of times I had to take a Relpax pill to take care of a Migraine attack, and my daily headache pain was at a nearly undetectable level. I tried to avoid a feeling of invincibility, but it sure was difficult: I felt GREAT!

Some of this had to do with the stress of school being over and done with. I finished all my course work and comprehensive exams for my Master's degree in early May. Maybe a couple weeks after that my body got used to the new feeling of not having school-related stress. I let go of some dating situations that were causing me grief, and maybe that contributed to my overall feelings of health. I also had had time to get used to the Zonegran, so maybe I was experiencing that wonderful period where my brain was working well with the new medication and getting along quite well with it. There often comes a time when new medicine kicks in, so to speak, and works really well. (Unfortunately, this miraculous period usually has an end.) A few weeks into feeling pretty good, I had the pleasure of beginning a new romantic relationship, one with a great deal more potential than any others I had had in the past several years. The accompanying feelings of euphoria (and the upped levels of serotonin that went along with that giddy beginning) probably helped, as well.

But in late July the pain returned a little bit, here and there. And in August it really made itself known. By late August and early September, I was having a really rough time of it yet again. I've been trying pretty hard not to take Relpax too often (see older entry regarding rebound headaches; also think of how expensive it is to purchase said medicine when your insurance doesn't cover prescription drug costs), and I've been aiming to break the drug cycle in general. This doesn't help the immediate pain, but I think it might help in the long run. (Of course when I feel the pain pass a certain threshold I most certainly do take a Relpax--I'm not going to torture myself when I know there's a way for me to feel better. I'm talking about the moderate levels of Migraine pain, not the severe ones.)

Point is: the pain levels have been fluctuating over the past months. I partly gave up on writing this blog for awhile because I got a bit cocky and figured that perhaps I was getting better at last. I need to realize deep down that CHRONIC PAIN IS A WAY OF LIFE for me. Some days I'll be able to control it better than others.

That's all for now.

"unusual thoughts" a side effect? then what will happen to someone like me who's never had a usual thought?

...especially when you get several of them within a few days of beginning the medicine!!!

Below I've copied a list of side effects for my newest drug, Zonegran. It's an anticonvulsant created to treat epileptic seizures, but it's also used for Migraine patients. Keep your fingers crossed. I, meanwhile, will be suffering from nausea. Ick.
(I've put in bold the side effects I'm feeling, having completed week 1 of treatment.)
"The most common side effects of Zonegran are drowsiness, loss of appetite, dizziness, headache, nausea, and agitation/irritability. These side effects usually occur within the first 4 weeks of therapy."

Luckily, I've not had any of the severe side effects listed below, but the ones in bold crack me up (and frighten me at the same time, of course).

Special Warning(s) with Zonegran:

Some people taking ZONEGRAN can get serious reactions including:

• Skin rash (may be a sign of a dangerous condition)
• Fever, sore throat, sores in your mouth, or bruising easily (may be signs of a blood problem)
• Sudden back pain, abdominal (stomach area) pain, pain when urinating, bloody or dark urine (may be signs of a kidney stone)
• Decreased sweating or a rise in body temperature (especially in patients under 17 years old)
• Depression
• Unusual thoughts
• Speech or language problems
• Drowsiness
• Difficulty concentrating
• Coordination problems

and after all that, I awoke with a Migraine...

The alarm went off at 8:05 even though my first official commitment of the day doesn't start until 7:30 PM. I snoozed a bit more than I intended to, but I felt as if that was forgivable since I hadn't fallen asleep until 2 AM or so.

I woke up, rolled out of bed, and a few minutes later finally acknowledged that the pain wasn't just morning grogginess, as I had naively hoped. No, kids, 'twas this: a morning Migraine. Dammit.

a walk to ... forget.

In an effort to control the five trillion things that trigger my Migraine, I've made an attempt to wake up at a consistent hour for the last few weeks. The mornings have been refreshingly, surprisingly lovely. It's spring now, though it feels more like summer, and the morning hours are the perfect time to stroll downtown for coffee or open all the windows and listen to music before the heat sets in.

There was a short period of my life (last year or so) when I awoke with terrible head pain almost every day. Of course there'd be those few moments when I'd open my eyes, stretch, and feel that hope that accompanies a bright morning: "Is it true? Could I actually feel well today?" In a flash of eagerness, I'd swing my legs out of bed and feel a rush of blood and pain in my head before my feet even had time to hit the floor. Morning Migraine. At this stage in my ever-shifting life, the mornings are good for me and the Migraine sets in during the afternoon or evening, mimicking the pattern that has dominated my illness since I started getting severe headaches as an eighth grader 12 or so years ago.

The question is, what should do with these rare hours of sickness-free time? If I start on work (which is unlikely, since I'm the most infamous procrastinator of all), I end up with a stress-triggered headache very quickly. I want to have times where I can enjoy walks, cups of coffee, time with friends, and hours with books before the pain sets in. This is how I chose to indulge myself this morning. Woke up around 8, eventually walked to a bakery to meet a friend for breakfast, b.s.ed with some buddies who happened to stroll by, nearly finished the novel I'm reading this week, made some phone calls, and enjoyed the morning.

"Time to start the work for the day," I thought to myself as I pressed play on my little iPod and started to walk the mile back to my house. As I walked up the slight incline of my street, I could feel pressure behind my left eye and felt a dull pain rear up in my sinuses. "Ignoreitignoreitignoreit' was a chant going off in my head, so subtle and well-rehearsed that I barely would have noticed it if the pain didn't suddenly increase as I got closer to home, closer to work and closer to the hour when the daily headache usually sets in.

But, as I explained in previous entries, I don't feel free to take Relpax and Naproxen the moment a headache kicks in, as indicated by the label. When you have CDH (or even Migraines that are more frequent than a couple times a month), you're warned against abusing the drug for fear of dependence, rebound headache, and the eventual tolerance you'll build against the drug's effectiveness. The pain and discomfort, as usual, wax and wane depending on my activity level and approximately 4,231 other factors. Right now I am sitting with my back against the headboard, typing as I sit/lie in bed and hear birds chirp excitedly outside. The left side of my neck has a rope of pain that throbs at its own unpredictable schedule.

For now, I feel okay...

my head hurts if I don't sit still/it's an itch that I'll never stop scratching

Once in awhile, I hope to post excerpts from books, songs, poems, movies, etc. that speak to Migraineurs in some way or another.

Waiting for insomnia (often a side effect of Migraine) to pass is like waiting for the headache to kick in, waiting for it to get out, or waiting for it to just remain stagnant for a bit so that you know if you'll be able to move again or not.

Here's an awesome one my friend L. sent me. You can download the song at http://www.3hive.com/2006/01/electric_president.php.

"Insomnia" by Electric President

There's a lightbulb dangling from string
It's slowly swaying over my head now
As I jot down the words that will never be solved
And wait for my headache to numb

And the wind sounds as if the world's sighing
And the moon's just a torn fingernail
As the TV flickers and hums by the wall
And I wait for my eyesight to fade

So, so, so, it's so damn slow
So, so, so, it's so damn slow

Not pride, I choke on ambition
And the old folks circle their graves
And the young ones are busy destroying their heirs (?)
And the heirs are still just wasting away (?)

I sit and watch this screen for a message
Some kind of sign that says we're okay
But the screen stays blank till I turn the thing on
And wait for my conscience to break

So...
So, so, so, it's so damn slow
So, so, so, it's so damn slow

I hope you are learning to listen
And I hope you are learning to stay
And I hope you find what you are missing
And I hope they’re making your way

And I'm a headcase if I don't keep moving
And my head hurts if I don't sit still
It's an itch that I never stop scratching
It's a hole that I’ll never quite fill

So...

the migration of pain

In the last few weeks, I've felt better than usual on my good days but worse than usual on my bad days. That is to say, the pains are more painful and the comfortable days aren't marked by as much pain.

Yesterday I had a particularly stressful day full of assignments and work. The stress was only compounded by the fact that I seem to have misplaced my motivation and gusto for anything other than reading books and writing on my own. I blame part of my distractability on my withdrawal from Effexor XR, which brings up strange little side effects. The rest? My fault. My laziness.

In any case, I met some friends out but didn't last long. I started to get a slight "ponytail headache," the kind where your hair follicles actually start to ache from the pain of holding all your hair up in a small rubber band. Only thing was, I had no rubber band in. At least it wasn't a Migraine, right? 'Cause my Migraines almost always start behind my left eye with dash of right eyeball attention. My town no longer allows smoking indoors, but my hypersensitive nostrils still caught plenty of sharp whiffs of the cigarettes people were puffing on directly outside the open door. The pain behind my nose and cheeks intensified; the throbbing in the very center of my head staked its claim on my skull and encouraged me to call it a night.

Because I am fearful of taking Relpax + naprosyn every time I feel a headache coming on (more coming on that fear in a later entry), I avoided the drugs by going to bed. Woke up about 3 hours earlier than usual with throbbing pain that wouldn't leave me alone. Gave in and took the meds and am already worried about tomorrow's rebound headache that will most likely manifest itself as soon as my intensive 10-hour work day begins.

In the meantime, I tilt the computer screen back so it barely sends its glow to me, and I squint my eyes in pain as I scroll through the menus on my cell phone, trying to call the pharmacy for even more prescription refills my insurance no longer covers...

Pity party is now declared...over!

a kindred spirit...

http://www.thedailyheadache.com/

getting off the drugs

Last week I was in my cruise ship stateroom, unpacking my toiletries on the first night of vacation, when I realized I had left my Effexor XR bottle at home. My loving friend kept me calm when I wanted to throw a tantrum, a tantrum that would surely lead to (yep!) a Migraine attack. I contemplated not telling my parents about the forgotten medicine, the medicine that's marked with warning after warning about how it's dangerous to miss doses and (god forbid!) stop cold turkey.

I splurged and called my neurologist, wanting to leave a message for the doctor about needing a new prescription faxed in. Unfortunately, you can't leave a message unless you're having an emergency. Great. The next day I talked with a nurse, who scolded me and half-yelled into my pained and Migrainous ear that I was late with my appointment and shouldn't be skipping doses of meds and blah blah blah. I refrained from becoming overly defensive and politely relayed the faxing information and fax machine number on the ship. This was Monday; the fax was to come in that afternoon and I could take the paperwork to a pharmacy the next time we were on land on Wednesday.

The fax never came.
The only time I could have called the neurologist again was when I'd get the answering machine that doesn't accept incoming messages.

I have been off Effexor for 8 days. The withdrawal wasn't too odd at first, but in the last couple of days I've had a pounding heart (ha--thank god for that! what I mean was, my heart is pounding a little more dramatically than usual) and a not-quite-with-it way of walking, talking, and attempting to focus.

What is really comforting is knowing that my doctor will scold me and think me foolish for going off this seriously strong medication.

Okay, I'm being negative and sarcastic.
What IS really comforting (and I don't kid) is knowing that I have garnered the courage to tell the doctor that I want to wean myself off some of the meds and see what can be done with fewer drugs (and fewer dollars). Wish me luck.

a little human touch...

So maybe having someone hug me, hold me, talk to me, or stroke my hair is particularly soothing during a Migraine attack mainly because I am an extraordinarily affectionate person to begin with. But I just wanted to say how incredible it is to have others' support while I'm feeling awful.

I've mentioned before that I don't always tell people what's going on with me, health-wise: "Oh, I'm just tired." "Oh, I have a lot of work to do." "Oh, something came up--I'm just not going to be able to make it." In recent months, I've really tried to tell friends the truth as to what's going on in my brain: chaotic, throbbing pain.

To my relief and joy, people have been supportive. Here are just a few snippets of what some exceptional people have contributed to my life lately, causing me to smile and helping the pain be just a little less sharp.

1. My friend R. learned about my Migraine disease several weeks ago during a chat over beers. He has turned out to be incredibly supportive of my search for new methods to help my pain. Some things he's done? Well, he told me he would give me his head if he could. (Silly, but the sentiment was genuine!) He also has done research on Migraine and has forwarded me some enlightening articles.

2. I've said before that I've been getting "weekend headache" during the last several months. A couple of nights ago, I had to go home early due to the pain. Wanting to be supportive of my friends tipsy hunger, I told L. I would try to eat with her downtown. Unfortunately, the restaurant's lighting was entirely too bright and I couldn't stand it. She made her order a take-out one and stood outside with me, making me change benches so that the seemingly glaringly bright street lights wouldn't blind me--she stroked my head as she stood strategically in between my throbbing eyeballs and the street lamps.

3. That same night, I got home and took my medication. Checked my email for the hell of it and one of the boys I'm not-dating-but-not-not-dating was online. As one who's especially vulnerable when trying to endure a Migraine attack, I told him what was going on with me. He stayed online with me as I typed to him how I was feeling. Though he lives really far away, he let me know how he would hug me and hold me if he could. As cheesy as it sounds, that support was so very comforting.

4. Final vignette, and then I'm off to bed.

My insurance plan allows me to spend $1000 on prescription drugs before I have to start paying for the medications myself. Surprise, surprise: with the cost of Migraine medication, my allotment was out after only 3 months of being on my 12-month insurance plan. Recently I got my refill on Relpax & Effexor XR (for Migraine treatment and not for depression, as it's commonly prescribed). The pharmacist was kind but impersonal as she had me sigh the check. "So, you don't have insurance?"
"Oh, I do, but the prescription allotment ran out."
(No comment from pharmacist.)
The grand total for one month of Effexor plus 12 Relpax pills was well over $300. I tried to beam like a champion as I signed away what little money I have in my account. I wanted the pharmacist to smile or do something to acknowledge my situation. Nothing.

Then, as I handed her my signed copy of the receipt, she looked at me and said, "God bless you, ____." I'm not religious, and I must note that her tone was more of one used by a lovely girl raised in the South who uses the phrase frequently rather than one who is extremely Christian.

Just those words, along with her look of genuine empathy, were enough to drive me to tears. I said a quick thanks and made my way out of the building as my eyes filled with water.

Just these little moments make things feel so much better. Just having someone make the effort to connect with me and say that he/or she understands a bit of my struggle means the world...

that's not doing the trick, either....

sleep nor medications nor the warm eye patch nor relaxing nor fresh air nor food nor water nor tea nor trying to get comfort from others.

nothing's doing the trick, and i'm sleepy and migrainey and tired and incurable.

love,
sad migrainegirl

goodnight again...

Lately I've been getting a whole lot of sleep, and I've certainly been keeping hours that are at odds with the normal person's schedule. Staying up until at least 3 AM each night guarantees that I'll wake up after noon the next day--without an alarm clock set, my body won't rouse itself until part of the afternoon has already passed, filled with lucid dreams that feel the way drug-induced sleepiness must feel.

Good news? The Migraines have been at a minimum, and the daily headaches have been almost nonexistent!

Bad news? I've become even more lazy than before, not getting much done at all and letting it all pile up.

an enlightening chat

Last night I had a chat with a good friend, and for the first time I think I was able to better articulate why I want this blog to be anonymous, and why I don't want to tell my friends & family just how severe my Migraines are.

It's not beautifully written, but the conversation is as follows:


friend: how is school and your migraines?

12:27 AM me: school is okay, migraines have been pretty awful lately

12:28 AM friend:what's wrong with you??? have you always had these headaches?

me:

12:30 AM It's a disease... & I'm trying to be more okay with it, talk about it more, etc. It's always been bad but I didn't "come out" about it full-force until recently, just mentioned it once in awhile to certain people.

Had it since I was 13 or so

12:31 AM friend: do you have them more when you have your period?

my friend M. gets them debilitatingly bad, but only then

12:32 AM me: usually. I was on the pill to help that for awhile, but the pill can also increase migraines in general and it wasn't helping me, so I just went off it

I have chronic daily headache (CDH) and migraine disease, which means for me that I have 1/3 of a migraine 5 or 6 days a week and it gets terrible 2-3 of those days

12:33 AM if you don't tell anyone, I can tell you about my new top-secret blog that might help you understand more!

http://themigrainegirl.blogspot.com

I don't want people to know it's me b/c I am still afraid of coming across as complaining.

friend: WOW!!!!

12:34 AM you're like a super undercover medical....i lost my train of thought on that one, but I think it's grat that you're blogging it. It's helpful for others AND

me: AND?!

hee hee

12:35 AM friend: it really good for you to "complain" (although that's silly to say that) and get it off your chest, ya know, ventilate.

I look forward to reading it and won't let on about your secret identity

me: it's true. I'm trying to realize that more.

thank you.

12:36 AM I have to figure out more how to make it all top secret. must make up a fake email address

friend: but why?

12:37 AM me: I don't want people to know it's me

I don't know why

friend: are you embarrassed?

me: sort of to make it that it's common, not an "everyman" kind of thing

but just that the more specific I make it to ME (with a name, location, etc.) it's as if it's my story in particular, when really my life mirrors MILLIONS of others.

Hard to explain. Maybe I'll change my mind eventually.

I'm not embarrassed

12:38 AM but since I've come out about it and talk about it a lot more, I am a bit wary of talking about it too much. My friends are totally supportive, but still.

friend: I understand that..

me: I also know it hurts my friends to know I'm so sick, and it kills my family. And letting them know about the blog would be like letting them know it's far worse than they think it is

12:39 AM friend: okay, i get it. I did the same thing...down play something that's really really wrong for the benefit of others...

12:40 AM

friend: But is this going to be fatal...i mean are there links to that?

me: no, no links for me.

it's not terminal, just chronic

the correlation for stroke is higher for people with migraine with aura, but it's not dangerous

12:41 AM

friend: Is that why you can't have fake sugar?

me: yep

or fluorescent lightss

or be around strong perfumes and cigs

or stress out

or have stress relieved

or have red wine sometimes, but I never know when it'll affect me

's a mess with all the triggers

12:43 AM friend: what about loud music!!

me: that too

sometimes

it's hard to explain--the neurological disease is always there, and those things we mentioned are triggers, not causes

12:44 AM so the disease is always there, and my threshold for the triggers changes. sometimes I can go to a loud rock show and be fine--that's almost always the case. But other times it will kill me

so I have to always be in tune

and sort of save my energies and decide how I want to spend my time, etc, know ing I'll be sick sometime but having to decide what's worth it and what's not

12:47 AM friend: I'm very glad that you told me. i know it can be annoying to be "the sick girl" or have people always worried about you, but it's also a very very lonely world to keep the big things to yourself.

12:49 AM me: sorry

got kicked off for a sec

thanks for listening, though

and feel free to check out ye olde blog

12:50 AM friend: i am right now you little ghost writer :)!

friend: okay...sweet dreams