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.

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.

a note to those who are considering Zonegran

I was just on MyMigraineConnection.com, perusing articles and looking up information on Zonegran withdrawal symptoms. To my chagrin, there's a general lack of specificity when it comes to lists of withdrawal symptoms. As the drug is prescribed off-label for Migraines (it's an epilepsy treatment), the medical websites all tend to point out that one should exercise caution while weaning off Zonegran due to increased risk of seizure and "other side effects--talk to your doctor."

So far my withdrawal process has been a lot easier than I'd expected. I'm halfway through and am sure my happiness with daily life has a great deal to do with my increased energy (a combination of getting off the energy-zapping Zonegran and getting all that B2 in my vitamins and my Petadolex, as I have mentioned before). Today I really took a turn for the worse, however, and hope hope hope it was just for one day.

Last night I went downtown with friends for a low-key night of chatting and carousing. Around 9:30 I decided to walk home, feeling a headache coming on. It was such a low-grade pain that I figured getting into bed early with a book and some chamomile tea would heal me right up. Boy, was I wrong. A raging Migraine headache took over within an hour of my arrival home. My stomach felt swirly but I was too nauseated to fetch a wastebasket to use as my emergency receptacle should I become sick to my stomach. (Luckily I didn't end up needing this option in the first place.)

This morning I woke up in a foul mood. A gray mood. A gray mood with fiery, jagged edges that caused me to lash out at everything from my boyfriend (who was suffering from a Migraine himself) to the dishes in the sink to the broom to my neglected plants. I. WAS. EXTRAORDINARILY. ANGRY. AND. BITTER. For no known reason. The closest I've come to such unreasonable anger would be in times of PMS, but I just finished my period, and this mood was far more sour and impossible to climb out of than any routine PMS funk.

What was I going through today? I see that agitation and irritability are side effects of Zonegran withdrawal; they can also accompany some people's postdrome stage, though feeling anger at this stage is infrequent for me.

In my rather fruitless search for Zonegran withdrawal symptoms, I did find a few pages on MyMigraineConnection.com on which people solicited the advice of others who may've tried Zonegran--what's our opinion of the drug as a Migraine treatment?

Here's my response. For those of you who read my blog frequently, you'll see nothing new. But it felt good to put it on paper--er, screen.

I have been on Zonegran for 22 months. The frequency, severity, and duration of my Migraine attacks decreased overall, but I still had super-duper Migraine months (especially during hot Augusts or stressful holiday times, for example) and was relying on my acute medication, Relpax, just as much as ever.

For me, the side effects of Zonegran far outweighed the positive. My doctor mentioned the possibility of some side effects, but both he and the drug literature mentioned that the effects would probably go away within 4-6 weeks. This was not the case for me. I lost a LOT of weight and the more bothersome side effects--memory loss, difficulty word-finding, near-constant fatigue, and simply a general feeling of dumbness!--were harder to pin down and took longer to emerge. I thought I was going nuts until I found a whole community of people out there who'd had the same things going on in their brains.

I'm now going through the withdrawal process and will be off Zonegran in three weeks. Petadolex is my new herbal drug of choice, and thus far it's working well!

Merry Migraine!

Holiday parties are coming. Strike that--holiday parties are here. And it's only the first full weekend of December. Friday night there were two parties, and I had a slight Migraine headache before we even got to the first get-together, which started at five or so. A funny thing happened at the first gathering: I hung out with professors from the graduate program I finished a while back and did a lot of the obligatory catch-up talk. Somehow I had the energy to do this, putting my headache on the back burner while I laughed and talked with old classmates and teachers. The moment my boyfriend and I left the house and walked to my car, the pulsating pressure returned to my temples and the left side of my forehead. While most of the pain was gone (I'd taken my Relpax before the party), I didn't feel ready for the night ahead.

Instead of looking forward to the next party, I merely felt overwhelmed by the social commitments that lay ahead. As we drove toward the next party, I thought to myself, "I'm only 25% done with this weekend's parties. And I've barely scratched the surface of all the December obligations!" My head pounded more insistently. I thought about driving the car home and just staying there.

I trucked on, though. And the Migraine came back full-force the next morning. And the morning after that. (Granted, I'd had a few drinks Friday and Saturday nights, but the drinks were vodka and I drank in moderation. Usually clear alcohol + water consumption + not overdoing it = no Migraine!)

The holiday season doesn't seem like it should be particularly stressful for me--I have a laid-back family and no one obsesses over gift-giving or party-throwing or keeping with meticulous customs. But I tend to get pretty headachey each year anyway. Why is that?

Paying for medication is extra-stressful when I want to spend my money on plane tickets to visit loved ones or gifts for friends and family (or myself, dammit!). But extra headaches mean extra calls to the pharmacy. More $120 charges for Relpax, here we come! Another $135 neurologist appointment is coming up, as is more monthly medication.

But let's look on the bright side. The holiday season doesn't have to mean focusing on others, what they want, parties they're throwing, commitments we're expected to fulfill, etc. What is it we're told over and over again? Oh yes--the season is about giving. Let's learn from this.

1. Give to yourself.

If you're not up for a party, don't go. Pushing yourself could mean you make yourself sick. Maybe it won't, but why risk it? You are THE most important thing in your life. (Or one of the most important, if you have others you're very close to!) Take care of yourself. Don't stretch yourself too thin.

Maybe you could pamper yourself a little bit. Have you ever had a massage? Oh, I highly recommend this. A tip for you: be sure to tell the massage therapist about your Migraine patterns and any spots on your body (esp. back or neck) that when tight and in pain might be triggers. An experienced masseur will know how to treat you. My massage therapist is a TMJ specialist and dons some latex gloves so she can massage way back in my cheeks, relieving my TMJ like you wouldn't believe.

2. Expect that others will be there for you, too. 'Cause they will!
Your friends want you to be well. I'm guessing that they're aware of your Migraine disease (or whatever chronic pain disorder you might have). If you need to bow out of get-togethers, if you're overwhelmed and need to leave a party early, or if (as in my case), if you can't afford to get as many Christmas gifts as you'd like because your "extra" money goes to prescription drugs, that's okay! And your friends will understand. That's why they're your friends. Trust that they'll be there for you.


Merry Christmas to me! I guess I'm buying myself some drugs.
I wish you all well.

*If all goes as planned, this will be part of the HeadacheBlogCarnival. Link to follow.

2 days in a row with no headache? Can it be?

As I may've mentioned in my last post (I'm too lazy to look back...), I have been suffering from the longest stint of Migraine-infused days in my recent history. This streak beats even my worst menstrual Migraines--I've been repeatedly put out of commission for days on end as the temperatures in my town soar and hover right around the 100 degree mark.

Friday night I worked for a couple of hours while suffering from a pretty bad headache. I had taken Relpax and Naproxen around 9:30, but by 11:20, I felt no relief, just the ever-throbbing pain getting worse. Being around people and music and noise and chatter wasn't helping, so as soon as my duties were done at 11:30, I split, taking up my beau's offer for him to close up shop for me. (All that was left to do was count up some money and pay myself and the band I was working the door for.) In any case, I was home in bed by midnight, utterly awake but unable to do anything but lie still.

Saturday, no pain to speak of.
Sunday, same scenario.

I feel as if a great weight has been lifted. I timidly step into this painless territory after nine or ten days of not being able to have a normal life, and I'm even more nervous than usual that I carry a teensy, ticking time bomb, that my pain-free hours are short-lived and that I'd better live it up before I get another Migraine headache.

That's all. Hope everyone is feeling good!!

owwwww....

I've been quite under the weather lately, trying REALLY (I mean really!) hard to resist taking my Relpax + Naproxen combo when headachey since the pain has been so consistent. I can't tell if I'm suffering from the much-researched, much-talked-about medication overuse headache (MOH), spring weather trigger overload, or just a particularly bad Migraine bout. I haven't had daily headache battles in quite awhile, and I feel pretty upset about their sudden return in the last few weeks. It's gotten me pretty down.

If I don't take Relpax right away, then I sit around feeling awful and am horrible company for others and, most notably, myself.

If I do take it, I worry that the next day my pain will be worse and I won't be *allowed* to take any more since I have to limit myself to two triptans a week.

Ay. Woe is me.
Sad hours seem long.

The end.

O! Canada

What with Patriot Act-driven paranoia seeping into my mind just a little bit now and again, it strikes me that this might not be the best idea, but I'll say it anyway: I bought some prescription drugs from the internet. A legit site in Canada that sent me my drugs WAY below cost what they would have been at my local pharmacy. For a girl who has zero insurance (with no insurance or full-time job with benefits on the way), this was a necessity I had to cash in on eventually, and eventually came in February 2007.

The service prompt, the pharmacists thorough and understanding. I'll do it again in a heartbeat and for a fraction of the cost. If you're interested in what company I went with, I'll let you know--I'm not about to advertise for any particular place out here in the open, but I will recommend what worked for me if you're daunted by all the options and are scared of getting a place that seems apt to take your money and run.

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.

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.

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...

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 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

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