If you miss school, you can't go to the dance in the evening.

Growing up, I remember how excited we'd all get for those rare school dances. This started as early as third grade, I think--it wasn't 'til junior prom that I attended dances where people actually danced, but that's another story all together.

In the morning and afternoon announcements the days leading up to the Big Day, a teacher would consistently remind us that if we were absent the day of the dance, we would not be allowed on school property for the evening event. At the time, this rule bugged me a bit, but I couldn't put words to why it didn't seem fair. Always one for specifics, I could think of several different reasons why the school should make exceptions to this rule. (Truth be told, I did this any time there was a blanket, one-size-fits-all rule that was imposed on us.)

Today I feel crappy, plus Jim's doctor reinstated his bed rest prescription. (Jim had a tonsillectomy over a week ago and was on the mend but, after some un-scary bleeding, he had to go back to squishy foods and no exertion. This means I'm his nursemaid.) There's a lot going on in town today, too, things I don't want to miss. My migraine-plus-cold situation means no Indie Craftstravaganza for me, no neighborhood party, and no neighborhood association meeting at 4. Earlier I was feeling too blah to take my Maxalt, worried that maybe this was a "normal" headache associated with my cold and not a migraine (though time has shown that this is indeed a migraine; just have to convince myself to stand up and walk to the bathroom to fetch the meds). Then I thought, "Well, even if the Maxalt does work, I won't be allowed to go to the fundraiser party tonight. If I don't make it to the neighborhood association meeting in the afternoon, I can't go to the party in the evening."

You can see why I thought of my days in school, listening to the teacher as she told us in a scolding voice that missing the day of the dance meant no dance.

Of course I know that, when they work well, migraine-specific medications can wipe out the attack and render the migraineur able to function somewhat normally within hours. That if Maxalt works as it does 65% of the time for me, I could rest at home for a bit and end up at the fundraiser party at 7 in top form.

But my neighbors don't know that. I can't help but think, "What will they say if I email to cancel my participation at the meeting and then show up at a party hours later? They'll think I'm a faker!"

Of course this is an issue that's faced by many chronically ill folks like me. What have your experiences been? I am wary of overexplaining the ins and outs of my illness to people (close friends and strangers alike), but I don't feel comfortable showing up for a social function after having skipped the more boring duties earlier in the day.

the lost day

Around lunchtime today, I was rooting around the kitchen, looking for something to snack on. I saw a to-go box from a sushi restaurant and remembered having a lovely dinner with J. at a downtown sushi restaurant the night before.

But then I did a double-take. Was dinner last night? Or the night before?

It took me at least 30 minutes to properly reconstruct the events of the last two days. Sushi dinner was Monday night, all day migraine (including two long naps that broke up the day and made things even more confusing) was Tuesday. Today, Wednesday, felt like Tuesday since I never really had a real day yesterday. Tuesday was my lost day.

This happened to me a lot more frequently when I was more ill. When I served full-time as an AmeriCorps member in Florida years ago, I'd lie down on my bed after work on Friday for a quick read and not wake up until 15+ hours later; clearly I needed to recharge after a hectic week. Time felt out of joint and, though I could logically explain where the hours had gone, my mind and body remained confused about the passage of time.

From what I understand, this happens to a lot of people with chronic pain and/or chronic fatigue & immune dysfunction syndrome. Pain and exhaustion lead to marathon naps that are disorienting and, in many cases, not all that refreshing or healing.

So now I'm playing catch-up but still feel run down and operating at about 80%. Such is the migraine attack postdrome, I suppose. As always, I am being pretty hard on myself regarding how much (or rather, how little) work I've gotten done this week, but I know I need to cut myself some slack.

For now, I need to catch up on some work. ;/

March 2010 Headache Carnival posted!

Diana Lee's at it again, and at last I've gotten it together in time to contribute a post. Check out the March 2010 Headache Blog Carnival, Opening Up to Family & Friends: March 2010 Headache & Migraine Disease Blog Carnival.

when you're partner's in pain, too

I wrote this during summer 2009 for ChronicBabe.com, but I never heard back from the very busy Jenni about whether or not she wanted to publish it on the site. So here it is in this form.

7/24/09

Overnight, tons of percussion instruments appeared all over my house. Congas in the living room, bongos in the bedroom, an African balliphone in the TV room, and a collection of maracas in the office. After three years together, my musician boyfriend moved in with me.

In truth, we've been pseudo-roommates since the summer we met. Downtime is at my house, dinner time is at my house, coffee time is at my house, and oh-my-god-I-hurt-so-much-I'm-going-to-throw-up time is at my house. That's right: I cope with migraine disease, chronic fatigue, and a host of other chronic problems, and my boyfriend has some chronic pain and migraine issues himself.

When I'm really low, J is a loving, caring nurse, albeit one who loses patience with his patient now and again. In some way or another, we've all been in his position: someone we love is hurting terribly and is unable to tell us how we can help simply because there is no solution, no cure. My college psychology professors would tell you that, when faced with a friend's problem, women will focus on listening while men will try to figure out what action they can take. There have been several instances wherein I've watched J's back as he left my darkened daytime bedroom--he shuts the door briskly in frustration as I've told him yet again that there's really nothing he can do.

We were pretty spoiled for awhile there: rare was the day when both of us were struck down. Then came last year. I'm not sure what happened to us, but last spring we turned into arthritic, achy 60-somethings overnight. Suddenly we were both sick and bedridden at the same time, and it. was. awful.

J and I are both fiercely independent (it took a couple months of exclusive dating and confessions of love before we actually admitted that we were boyfriend and girlfriend) and have trouble relying on others for help. Oh, another thing that's fun, especially when we're sick? Each of us is right all the time. Makes for some productive conversational volleys.

So let's return to the scene last year, when I was having some particularly rough migraine spells and his back was, after years of wear, was finally beginning to tear. We two were lying in bed, too worn out to take care of our own lives, let alone each other's. We bickered. I glared at him when he turned over in bed and woke me from my hazy, migrainey nap. He winced with a sharp intake of breath as I tried to hug him--no matter what, I always seem to forget how much his back hurts and squeeze him too hard.

It can be exhausting to be with someone burdened by health problems. Sometimes J's empathy is heightened and he really identifies with what I'm going through; other times, I think he sees too much of himself in me and, consequently, is a little too harsh and judgmental. (Same goes for me.)

Here are some things I try to tell myself when dealing with a stressed-out, ailing fellow:

1. Don't assume you know how he feels. Yes, you have similar diagnoses. No, you don't know how his pain affects him physically and emotionally.
2. Choose your time wisely. Have most of your health-related discussions while you guys are feeling good and healthy. Too often, we start Serious Health Talks when one of us is down for the count. I'm guilty of preaching to him about making more frequent doctor visits while he's completely tuckered out and feeling awful.
3. Remember that you have a choice in how you deal with what life gives you. As Jon Kabat-Zinn might say, it's important to respond to what you encounter and not necessarily react to it. The emotions you experience may not be under control, but increased self-awareness can allow you to choose between ignoring or indulging in those feelings.
4. When feeling healthy, teach each other what you'll need when you're sick. I know where J's medications are and will have them at the ready as soon as he asks; he sometimes knows where mine are, but there are lots of bottles and supplements and it can get confusing. Note to self: make a list he can consult so that next time you're in bed with migraine you're not calling out to the dude in the bathroom (as your head throbs with exertion), "No, not that bottle. The other one. The one on the right? NO, THE OTHER ONE!"
5. Give your partner the benefit of the doubt. Always remember that he loves you and wants the best for you, and make sure he knows the same is true for you. Try to be extra patient when he is in pain and vulnerable.

Our health problems have been addressed thoroughly, and each of us has seriously evaluated our futures: can we handle being with someone this sick? Can we hack it if our loved one's problems grow dramatically worse? Will we be okay if one of us is miraculously cured and no longer depends so much on the other? As for now, we're confident we can handle what the future brings--after all, we have a pretty good record so far.

Mindfulness-Based Stress Reduction

Last week, I started formal training in MBSR, mindfulness-based stress reduction. I sound a bit stodgy calling it "formal training," but that description serves to differentiate my class experience from the half-assed mindfulness meditation I've been attempting on my own (with varying degrees of success).

I'm still at the point where, in the first few seconds after hearing the word "meditation," I think of chanting and swamis ordering me to completely clear my mind. I think of orange robes, big gongs, and Asia. I think of hippies and LSD. Yes, I am operating entirely on stereotype.

But after those first impressions have passed, I begin to think of meditation for what it is in my life, for what it is to me. Mindful meditation does not ask you to magically erase your mind. Mindfulness encourages you to be completely in tune and at peace with what's going on, to focus on the present and only the present. There's no point in scolding yourself for a wandering mind: the mind's nature is to wander, and that wandering is part of the mindfulness process. The key is to notice that your mind is drifting and then to bring it back gently to whatever you're trying to focus on.

I'm not doing the program justice. Do a google search, download some mindfulness tapes, enroll in a class. Jon Kabat-Zinn, one of the main folks who popularized mindfulness, has written (or co-written) several books on the process, and several of those books are accompanied by CDs. Worth the investment.

My instructor told us that if we could keep a journal about our mindfulness meditation practices, we'd learn a lot about the nature of our individual minds and would also notice patterns of thought. This evening I listened to a CD track of the body scan, a 30-minute process during which you slowly and methodically focus on one body part at a time. It can be extremely calming, but tonight I was just not into it. More than once I thought about getting up and turning the stereo off. I kept going, though, continually redirecting my thoughts as I got distracted again, and again, and again by potentially stressful things in my life.

So far I am most easily distracted by my to-do list. I have so much to do, so little time. And when I do have time, I waste some of it on frivolity. Other times I am not feeling at my best physically but beat myself up for not being able to plow through the discomfort in order to keep trucking.

In any case, the to-do list popped up over and over as I meditated, and I continually redirected my focus to whatever body part I was *supposed* to be focusing on. And you know what? About half the time it worked. I feel a lot more calm than 45 minutes ago before I hit "play," and I'm glad I didn't turn off the CD. The times you are most tempted to NOT engage in stress-relieving activities are most likely the times you need the most stress relief. Note to self: remember this.

Has anyone else tried MBSR? If so, any reports from the field?

stop faking it, people--you're giving us a bad name!

This makes me angry!

Figures it'd be something frustrating to get me back here on the blog after such a long absence. When I first read this headline ("Migraines now top excuse for calling in sick,") I was ready to fill out a comment on the Telegraph's page. I can hear myself starting to preach now: "You really should have used the word "reason," not "excuse." Migraine is a disease, not a..." You guys know the drill.

Imagine my surprise to find out that the word choice in the article title was right on!

If you are a migraine sufferer and are willing to be open with your boss(es), then more power to you: you increase awareness of the disease when you are honest about why you can't be at work. Yes, there are risks. Yes, that bitter woman in the back might snicker at you yet again and think you're a wimp who can't handle a headache. You know what? Screw her! Take care of yourself.

If you are NOT a migraine sufferer, then don't use our illness as a reason for you to take a vacation day. Admitting that you're faking it doesn't really help your case or ours: it just makes people less likely to believe all of us next time they hear the word "migraine."

I think more than I write.

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

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

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

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

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

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

view from my apartment in Bs. As.

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

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

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

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

Creating a Migraine-Friendly Environment

Diana Lee has the March headache blog carnival posted. Once again, I slacked and missed the boat--this time I didn't even clue in enough to know what the topic was. Too bad, too, because I have a lot to say about migraine-friendly spots. (I have oft thought of writing reviews of restaurants, offices, etc. based mainly on the places' migraine-friendliness!)

Read the blog carnival entries here!

bad days, good days

The past week has been a mixture of amazing fun and terrible bedridden-ness. I had several days affected by migraine but got by okay with my triptans. Disturbingly, the drugs worked okay only half the time--they limited the pain but didn't erase it all (or the other side effects). That was frustrating, but at least post-triptans I could function okay.

Thursday I missed a bonfire party at a friend's house. I'd been looking forward to this. Friday I babysat and felt really good during the day, playing like crazy with the kids in the 70-something degree weather. Friday night was crappy, but I had an okay time lying low and watching The Wire. (Not uplifting, exactly, but so very well-done!) Saturday I woke up extra-migrainey but the drugs worked okay by the afternoon. I spent many an hour with my honey bunny and had a lovely evening. The migraine started to creep back in the evening but I ignored it. Mistake? Perhaps.

Sunday.
was.
terrible.

I got out of bed to pee a couple of times--other than that, J. waited on me hand and foot. Around ten p.m. I was okay enough to take a shower, but I had to sit down in the water stream and rest halfway through. When the shower was over and I was dry and p.j.ed, I felt as if I'd spent three hours working out. Wah.

Many of you don't know this, but I LOVE MARY TYLER MOORE. I love her. LOVE HER. This love is deeply connected to my love for The Mary Tyler Moore Show, and I've had the pleasure of seeing a couple MTM Show stars in real life. (That was thrilling.) Months ago, one of my friends told me that Ed Asner ("Lou Grant") would be in Athens on February 15 to perform in a play for Darwin Day. She scored us free tickets (yess) and the countdown began.

That show was Sunday, 2/15. I couldn't go. Not even triptans could help save me: I'd taken my allotment for the week. I was too busy being in pain despite the Lortab, lying in bed hoping to throw up to ease some of the discomfort. (I've known many migraineurs who feel this way--once you get to feeling bad enough, you know that getting sick to your stomach will bring you some relief.) I missed Lou Grant! I also missed a Sunday night party I'd been looking forward to. Wah. Poor me.

It was the worst day I'd had in a long time. I'm hoping that its being out of the way (along with my period, which I'm joyed to wave goodbye to for a few weeks) will give me another few weeks of success. Fingers crossed.

my therapeutic yoga class

Okay, jury's in: I love my therapeutic yoga class. I was really overwhelmed after my first session--everyone in the class is amazing in his or her own way, and everyone has at least one (at least!) major health obstacle she's trying to cope with. All those fears about not being flexible enough, about not being able to keep up, about not doing things "correctly," have flown out the window. Slowly but surely I'm taking to heart my experienced yoga teacher's words: if your movements are painful, you're not doing yoga. Everyone's body is completely different from the next, so one person's ability to move in a certain way should not be judged against the next person's. In doing some arm exercises, I pushed myself to keep my arms high despite their beginning to get tingly and painful. After the class, I mentioned the discomfort to my teacher, who told me to lower my arms significantly--if that didn't work, we'd figure out another modification that would perhaps allow me to do this exercise.

Each class is two hours long but is not rigorous or stressful in the least. We move slowly and mindfully, paying attention to our breathing and always taking note of how our movements make our bodies feel. (I speak as if I'm a self-proclaimed guru at this point--this is far from the case, but speaking confidently about the practice sure can't hurt!) It's hard for me to slow my mind down, to not pay attention to the racing thoughts that flit across my brain like so many little birds.

There are two other severe chronic migraineurs in the class, and I completely misjudged how wonderful it'd be to talk with them in person. I've gained so much through web-based relationships on this blog (and in using other health websites), but to see someone's face as she describes her life with migraine is such a different experience. One woman's headaches were daily and severe. She, like me, made TONS of lifestyle changes all at once. She continually reassures me and encourages me, telling me how happy she feels that I have already begun to find hopefulness where before there was despair. This is a person who has been coming to this particular therapeutic yoga class for seven years, a chronic daily migraineur. Guess when her last migraine attack was? Over six years ago. Can you imagine that? I'm beginning to allow myself to imagine that. I'm not planning on it, mind you, but I am allowing myself to believe at last that this is possible, that after all this searching and medication and vitamins and doctor's visits there could be something that has a drastically wonderful effect on my life.

It's not easy to change everything at once. This evening my friend told me how she was about to order a greasy, delightfully cheesy Papa John's pizza. As soon as I was alone again, I thought about that pizza. Thought about dipping it in those notoriously fatty cups of garlic sauce and how wonderful it tastes.

And then I got home and heated up rice, broccoli, and onions for dinner. I feel satiated and healthy. No cheese-induced tummyache for me. But man--I do love pizza.

People, I want you to allow yourselves to be hopeful. I want you to imagine that it will be possible to live your lives without fear of a migraine coming on at the slightest provocation. For too long I have treated myself too gingerly--much of that was necessary and safe, I know, but it kept me from living my life well. KEEPS me from living my life well. (There goes Guru Jan again, acting as if she's got it all figure out, when really I'm play-acting here and there, only partly able to fully believe how healthy I am becoming.) It's so hard for me to imagine that any of these changes I've made could NOT help most of you. This from the girl who gets really frustrated when people, out of the goodness of their hearts, push so-called miracle drugs onto her--if Topamax works for so many, it MUST work for you, Janet! You're probably just not taking it right!

I fear becoming the person who pushes her ways onto you. At the same time, I can't resist trying to engage some of you in this discussion, to encourage some of you to incorporate healthier habits in an attempt to curb the number and severity of your attacks. Please let me know if I'm annoying you. Please let me know if you are interested in talking more. Please let me know if I should abandon this blog all together before driving you all crazy!! :)

the streak is over

After 22(ish) days of no migraine, I had to take a Maxalt today. In recent weeks I've felt very heavy-headed and icky upon waking; when I move about the house and get ready for the day, the feeling dissipates and I start to feel a-okay. This morning my head felt heavier than it has in a while, and something just didn't feel right. I made coffee and, after messing around the house for awhile, walked to meet some friends for lunch. To my surprise, my stomach was really upset within minutes of eating the meal. I hadn't had anything on my forbidden list, so I was a bit confused.

After my post-lunch long walk, I returned home and felt that cool, airy pain beginning on the left side of my forehead. There's a particular type of discomfort that accompanies my initial PMS symptoms, and this was it. "No way!" thought I, "I just had my period!" One look at a calendar showed me that my menstrual-related migraine was right on time. D'oh!

I took a Naproxen tablet in the hopes it could stave off the real migraine to come, but this afternoon I could feel the symptoms worsening and took my Maxalt. Now I feel airy and tired and a bit out of it--good ol' Maxalt + PMS will do that every time.

I'm proud of my streak and not surprised that my period has helped trigger this migraine episode. I'll deal. When my period's over, maybe I can start a new tally and get higher than 22! And maybe not. Either way, I'm cool. I thought I'd be really disappointed and discouraged when the streak ended, but I'm not. I'm pretty confident I'll have another pain-free stretch coming up soon.

3 WEEKS!!!

I had to share this with you all: in a few hours' time, I'll have hit my three-week NO MIGRAINES mark! My last migraine was very, very early 1/15. I can't believe this--I can't believe it!!

Though I'm trying to remain in the moment, to realize that this is how I'm feeling now and no guarantee for how I'll feel at any point in the future, I can't help but be happy. In the last few weeks, I've been able to let go of a lot of migraine-related anxiety. When I encountered cigarette smoke indoors at a rock show in Atlanta, I didn't go into panic mode, didn't think, "Oh, no! I must cover my face immediately or else I'll be sick!" I did get away from the cigarette smoker and his billowy stench, but I didn't feel panicky about it in the least. I've been so much more calm, cool, and collected. Trying not to take this for granted, and trying my damnedest not to preach to you all about how I really and truly believe the changes I've made to my life could help you in some way. It's really hard not to preach, though. Really hard.

Love,
Janet

the best is yet to come!

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

Goals for 2009:

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

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

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

healthy boundaries for "chronic babes"

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

I love it! Check it out here.

I got the kreativ* blogger award

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

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

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

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

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

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

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

Ick.

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

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

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

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

wreck wreck wreck

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

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

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

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

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

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

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

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

clean house!

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

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

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

I'll leave that to my maid.

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

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

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

Just another Oct. 31

I skipped Halloween tonight. This seems pretty sad at first: I mean, I have always loved Halloween and tend to dress up each year--if you exclude a handful of early high school Halloweens when I was too cool (and too old, according to my parents) to dress up and go trick-or-treating.

I've told you a little bit about my dear friend HT before. She and I are very similar in a variety of ways--it's not just our height and Germanic looks. (What an odd non-Janet-sounding sentence. I'll keep it.) We get along well for many reasons; it helps that she is perhaps the only real-life person I know who genuinely understands what it's like to live with a chronic illness. Because our personalities and senses of humor are so similar, our perspectives are that much more in sync.

Earlier this week, I called her to see if she'd be interesting in spending the night IN on Halloween. As the night is her favorite holiday, I knew she might be reluctant to commit. As she'd been pretty sick off and on for the weeks prior, I knew she'd probably end up being able to hang out with little old me. As it turns out, we did get to spend time together. We had dinner, chit-chatted, and watched The Shining for the first time in over a decade (for each of us). Let me just tell you: this movie is AWESOME. I somehow remembered it as being sort of slow and boring until the final scenes--but my 28-year-old self now scolds my high school self for not having realized how wonderfully suspenseful the film is. The experience I had watching it was lessened by the pain and discomfort I felt during the loud scenes or very bright shots. I thought to myself a few times, "Wow--this would REALLY be painful in a movie theatre!" I asked HT to turn the volume down once or twice, but the high-pitched, sitting-on-the-edge-of-your-seat squeaky strings still got to me. When I watch TV with my boyfriend, I almost always have to ask him to turn it down for me. (He's a musician who must already have irreversible hearing damage; I'm an ultra-sensitive girlfriend who is getting paid back by karma for all the times her older sister used to tell her to turn down the volume.) I can relax pretty well on my own, but now even laid-back activities are threats of pain and discomfort. I don't like that, even when I'm in a friend's quiet, smoke-free house--a place that should be lovely for a migraineur--I have to ask her to make many adjustments to accommodate me.

I suppose I feel as if I'm always on guard; that a trigger could be waiting around the corner. IS waiting around the corner, and I've got to be quick enough to catch it.

Even now I'm affected by the unintentional elements of my visit. When HT gave me a long hug goodnight, I could smell hand sanitizer on her, hand sanitizer with a strong scent (strong for me, at least). Even the hug couldn't be an enjoyable goodbye--instead I was thinking, "Oh, I hope she doesn't hold on too long, because that smell is going to wear off onto my clothes and it'll bug me!" Now I'm sitting at this computer, 30 minutes after saying goodnight, and the hand sanitizer smell is wafting through the air and sending daggers through my nose into my brain. Sorry.

So yeah. Back to Halloween. We drove downtown once to deliver HT's husband's i.d. to him--he'd forgotten to carry it along with him in his costume. We got to see a few costumes and were creepily incognito: we wore bags on our heads as we parked outside my favorite bar and waited for HT's husband to come out. Only he and two other friends knew who we were; they snapped a few photos of us. I looked beyond them and saw many of my friends outside the bar, no one knowing I was near. And then we pulled off.

And you know what? I'm not sorry I didn't got out. At this pinot, the night is over for most folks in town and I'm sure they had a great time. So did I. I continue to get used to this lower-key Janet who chooses to stay in when she used to be social, social, social. I hope I stop questioning her choices so much and trust her to do the right thing.

When meds make you lose your mind

To everyone who's ever felt out of it or stupid while taking a brain-altering drug: this short but poignant New York Times article by Judith Warner is wonderful! I responded to the article with this long letter (which initially started as a short comment). Links throughout lead you to relevant blog entries.

Dear Judith,

I confided in a friend a few weeks back about how stupid and out of it I felt while on my preventive drug (Zonegran) for around 1.5 years. He forwarded me this article this morning--I'm so glad it was published in such a large forum!

I joked a lot about the potential side effects ("difficulty word-finding," "cognitive impairment") when I first started popping Zonegran, but I never thought I'd actually be one of the patients affected. My cognitive impairment didn't kick in until a few months into drug treatment--and the patient leaflet said that all the cognitive side effects are usually here and gone after the first six weeks of treatment. I decided I was just getting stupid. For the first time, I wasn't in school or doing academic reading. I couldn't work a 9-5 job because of my migraine attacks. Maybe I just lost my brain.

Madge (commenter above), it seems you're admonishing Judith for not having said something sooner to her doctor or pharmacist. It seems to me that Judith took action pretty quickly. As for me, I was embarrassed about the side effects and not even sure if they were side effects from Zonegran--maybe they were just side effects of life, the new and not-so-improved Janet. I'd always prided myself on my writing and thinking ability and suddenly that was disappearing. This phenomenon is so strange, so unfamiliar, and so hard to pinpoint that it's not easy to see that it's connected to a drug you started months ago. I didn't say anything to my doctor or pharmacist about it until months later.

Someone named "cla" commented before me about how busy doctors are today, how perhaps we patients should adjust our expectations instead of expecting doctors to be at our beck and call (I'm paraphrasing here--hope I've not taken any liberties, cla). This is b.s.! I KNOW that doctors are overwhelmed with insurance claims, paperwork, bureaucracy, and five visits a day from drug company peddlers who overwhelm them with ads and sample medications. I think that cognitive side effects should be treated as seriously as physical side effects, that doctors should be honest and up front with patients. Migraine disease is so much more than a series of episodes (which may or may not involve a headache)--it's a disorder that affects your ability to function, your ability to have a so-called "normal" life, your ability to enjoy what you have without being worried about the next attack. If doctors are focused entirely on how the body is affected (if they're focused on that at all and not distracted by their bureaucratic duties) and not focused on how the patient and her life are altered due to the disease (or drugs given to treat the disease), those doctors need some lessons in patient-doctor communication. They need to learn more about migraine's ins and outs and realize that, just because the clinical trials didn't reveal a prevalence of a certain side effect, LOTS of people are losing their minds, their selves, while on certain prescription meds.

After over a year and a half on Zonegran, I finally weaned myself off (with doctor's straightforward assistance and little care as to why). I still don't feel as smart as I used to. I still have trouble finding the words that used to come so easily to me--but I have to have the faith that this will come back to me. That I've taken brain-altering drugs and it might just take awhile for the firing synapses to resume their old speed.

In closing, thanks for this article. Thank you so much.