I am on Twitter. Please tweet with me.

I love using Twitter to learn about bookselling and the book world (and to connect with readers). I thought I'd launch a personal Twitter account in addition to my bookstore account. Find me and we'll chat!

Here's my handle: @themigrainegirl

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. ;/

a favor to ask

Friends and fellow health bloggers,

As many of you know, I'm opening a bookstore this year in Athens, GA. Deciding to start my own business was not a choice I made lightly--every step of the way, I had to guess at how every aspect of business ownership would affect my health. After weighing the pros and cons, I decided to move full speed ahead. Once we open our doors to the public toward the end of this year, I will make sure I have a plan in place for when I'm too ill to be at the store. (To start, I'm setting some rules for myself, including a rule that I can't work more than X hours per week, no matter how much there is to do. Health comes first.) Thankfully, working on my business plans each and every day has improved my life and given me more focus, something I really needed. I have more of a routine now that I'm working multiple jobs (freelance work, babysitting, medical document editing, and the as-yet-unpaid bookstore work!). I'm thrilled about my new business and the feedback I've gotten from friends, family, colleagues, and the community at large.

Now's when I ask for a couple minutes of your time. Please visit my bookstore blog and see how you can help me get this project to the next level through free clicks, small (we're talking a $1 minimum!) donations, and even formal investments.

If you've only got a second, just click here to vote for us in the Pepsi Refresh Everything project, and spread the word. You can vote daily!

Many of you out there have your own Facebook pages, your own blogs, your own businesses. Would you consider posting the link to my Pepsi Refresh Project so your friends and customers can vote, too? I'd be most grateful.

Thanks to Eileen Gray and Teri Robert, who are already helping out.

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.

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.

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!! :)

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

a quick stumble off the wagon

Today I grabbed a roast beef sandwich from a local bar/restaurant and went to another bar to hang out with Handicapped Twin, who just started bartending. I scarfed down the delicious sandwich and enjoyed every bite.

Hours later, as I was getting up to leave, I had an epiphany. "Oh my god!" HT: "What?" Jan: "I just realized I ate white flour and cheese for lunch--and I didn't even think twice about it. It didn't even occur to me that I was not following my diet!"

Oops.

Perhaps it's coincidence, but this afternoon my tummy has been jumpy for the first time in many days.

9 days and counting

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

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

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

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

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

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

I wash my hands of this!

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

Yay! Joy! Heaven!

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

Whew.

green snot alert

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

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

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

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

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

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

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

I'm off to blow my nose. Jealous?

feeling like myself again

The other day I was in an excellent mood, flitting about the house getting things done, rearranging furniture, etc. As I had faintly suspected, this sense of euphoria and increased energy was a signal that the prodrome had set in. For a couple of days (and evenings) after that awesome night, I was pretty laid up and out of commission with Migraine.

Late in the evening on Tuesday--say, around eleven or so--I started to feel okay. I'd already missed a close friend's birthday get-together so felt a bit bummed out. Mainly I was relieved, though--the pain was lifting and I had a little bout of energy. I cleaned & rearranged my jewelry. I wrote a letter. I read a chunk of my book.

Wednesday I babysat for a few hours and, despite not having slept well the night before, I was happy and energetic with the kids. We played outside and I didn't once feel the need to lie down and rest. (A few weeks back, the six-year-old walked up to me shortly after I arrived at his house to sit. "Are you sleepy?" he asked me. "Um...not right now, no. Why did you ask that?" "Cause you're always sleepy," he replied in a sad voice. Wow. It's not as if I didn't know I felt run-down pretty often--it's that I'd thought that, in general, the kids saw me as an energetic, healthy person, not an "always tired" type. Hmm.)

Now it's Saturday at one in the morning, and my good mood, good spirits, and good health are all still going strong. I survived a big Thanksgiving Day (and night!) with some good friends and didn't get a migraine (!). Hours ago, the sunny and warm day turned into a chilly, rainy one, and my head didn't freak out as it usually would. Yesterday evening I had a few drinks and didn't wake up feeling extra tired or migrainey.


I've been engaging in activities I used to love but that have since fallen by the wayside due to my blah-ish indifference or my schedule--when so much of my time is taken up by Migraine, my non-sick times aren't usually spent on my goofy old habits. Here's a list of a few things I used to love doing but had kind of stopped until very recently (VERY recently):

1. played my piano keyboard, practicing notes and playing songs badly (I don't exactly have a formal piano education and can't play with two hands any better than a preschooler might--but it's fun!)
2. created many a paper craft, including a hand turkey, cut-out scissor crafts, and paper dolls
3. borrowed J.'s guitar and whipped out my cousin Bev's thirty-plus-year-old Mel Bay guitar instructional books
4. write letters to friends
5. hung lots of art & photos on the walls, art that had been sitting around for MONTHS waiting to be displayed
6. continued compiling my favorite photographs for a little photography portfolio
7. cleaned my silver jewelry (and some of the fake stuff, too, which appeared shiny and new again for about ten minutes before it re-tarnished--what gives?)
8. took a few long walks
9. snapped some photos of my neighborhood
10. made a cake (from the box--thank you, Duncan Hines)
11. repaired a beaded necklace my friend's cat chewed on and messed up approximately THREE YEARS AGO (it's been sitting around in plastic wrap since that fateful day I found it all torn up)
12. burned a CD of Costa Rica photos for my friend Rosa, a CD she requested I make in January 2008
13. sent a postcard to my cousin Laura--a postcard I bought and wrote in July 2007

+ more!!

Look at me, look at me! Now's the time when I indulge in a little fantasy about how this is how life will be from here on out. My migraines are gone for good, you see, and I'll NEVER BE SICK AGAIN. Awesome, huh? ;)

I got the kreativ* blogger award

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

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

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

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

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

stinky stinks

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

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

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

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

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

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

Anyone else experience this phenomenon?

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!

Just another Oct. 31

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

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

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

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

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

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

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

Y-M-C-A!

I have had the scholarship application for the Athens YMCA in my hands for months now. The duty of acquiring all the official documentation to prove that joining the Y is out of my budget...? Well, that's a duty I wasn't accomplishing.

Yesterday, I put "finish YMCA scholarship app." on my things-to-do list. I had a couple of questions for the Y, so I emailed the man in charge. Come to find out the scholarships are for kids. Uh.... Oops. Nevermind the fact that the forms don't mention that.

The friendly contact person did tell me that adults in need could have the "building fee" waived in an attempt for them to be able to afford the Y. "How do I go about applying for that?" I asked in an email last evening. This morning I got a reply from him--he just asked that I print out his email stating the building fee was waived for me.

Done and done.

How easy as pie was that? I love how I lazed around with that defunct application for months only to find out all it took was a simple email interaction and request.

Procrastination = bad
Being proactive = good

Now...back to avoiding my work.

save healthcare & our country!

Hi, guys. The Obama campaign folks sent me the following list and I thought I'd take their advice and repost it. If you're not pro-Obama, rest easy--I'm not going to pressure you to change your mind (even though I really think you should!). If you are pro-Obama, reading the following list is very important!! Repost this list if you desire.

TOP 5 REASONS OBAMA SUPPORTERS SHOULDN'T REST EASY

1. The polls may be wrong. This is an unprecedented election. No one knows how racism may affect what voters tell pollsters—or what they do in the voting booth. And the polls are narrowing anyway. In the last few days, John McCain has gained ground in most national polls, as his campaign has gone even more negative.

2. Dirty tricks. Republicans are already illegally purging voters from the rolls in some states. They're whipping up hysteria over ACORN to justify more challenges to new voters. Misleading flyers about the voting process have started appearing in black neighborhoods. And of course, many counties still use unsecure voting machines.

3. October surprise. In politics, 15 days is a long time. The next McCain smear could dominate the news for a week. There could be a crisis with Iran, or Bin Laden could release another tape, or worse.

4. Those who forget history... In 2000, Al Gore won the popular vote after trailing by seven points in the final days of the race. In 1980, Reagan was eight points down in the polls in late October and came back to win. Races can shift—fast!

5. Landslide. Even with Barack Obama in the White House, passing universal health care and a new clean-energy policy is going to be hard. Insurance, drug and oil companies will fight us every step of the way. We need the kind of landslide that will give Barack a huge mandate.

If you agree that we shouldn't rest easy, please sign up to volunteer at your local Obama office by clicking here:

http://pol.moveon.org/obama/office.html?source=blog&id=14534-5183653-nFgmwbx&t=1

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.