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. ;/

one of those days

Last night I said to J., "I feel really hopeful." "Good--you should!" "I always feel hopeful and excited about things, but today feels special. Something really good is going to happen. And I really think I stand a chance with this grant giveaway." "Of course you do!"

Cue 12:01 AM, when I tried and failed to submit my Pepsi project. A few hours later, adrenaline still rushing through body after having tried to troubleshoot the technological issues that held me back from submitting my little grant application, I lay in bed trying to fall asleep.

And then today was a doozie. It's rare that I'm discouraged or down in the dumps, but man--today did a number on me, and nothing even happened! (Why did I refuse to note the signs of a migraine coming on?) While running errands, I noticed that the daylight made me squint, and my vision was blurry. I took down my photo show from the Flicker Bar, and ended up getting super-teary-eyed. Not sure why, as I know I sold well (I sold enough photos to reach my goal of having enough dough to launch the Avid Bookshop website!) and had a really successful art opening on February 1st. Hell, even if I'd sold nothing, I still would've felt proud of myself for having my first-ever photo show, for doing something public with a hobby I think I'm pretty good at.

So it wasn't regret that made me teary-eyed, and it wasn't the usual reason that I cry at the drop of a hat (um, PMS, anyone?): I think it was that I was getting a migraine. Yesterday evening, I was feeling particularly euphoric, more encouraged and productive and active than I've been in weeks! But then the prodrome really set in (my blurred vision, the bright sun, the weepiness, incessant yawning) without my realizing (or wanting to acknowledge) what it was.

Now, 22 hours after my hopeful, euphoric outburst, I'm feeling okay. A little down in the dumps, a little discouraged, and a little distracted by the discomfort that's not quite settled in behind my left eye. Tomorrow I'll begin anew, having a couple of bookstore meetings and dealing with some bureaucratic bill pay stuff that will surely find me sitting on hold, book in hand for a little while.

Hope you're well.

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.

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.

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!

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? ;)

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.

achy and lazy

Saturday I woke up tired. Tired and sore. Most likely that's because I stayed up pretty late Friday night and had one too many vodka-sodas. Fair enough. I didn't feel hungover OR migrainey (miracle of miracles), but I was achy and tired much of the day. When night fell, however, I was awake and energetic and inspired. J. and I had some sushi, went to see a friend play music downtown, and then rented a movie. I was in a silly, hyper, ridiculous mood until I fell asleep around 1:30.

The next night (last night, Sunday), I was up really late again. I saw a movie with my friend and, after walking home, took my nightly meds and planned to go to sleep. But THEN my beau came over to hang out, and we ended up making pizza at one in the morning (I had only snacked for dinner instead of eating a real meal, so I was hungry!) and watching a movie. Again, despite having a tired, achy day, my night was fun and silly and giggly. (I am pretty weird in real life, this I must admit--the last two evenings I exploited this trait for all its worth.)

I was wired and couldn't fall asleep last night. Eventually I shut the light off around 3:45 AM; of course that meant I didn't wake up 'til an embarrasingly late hour today. I've accomplished some things around the house (wrote a couple of emails, did the dishes, tidied up, visited with a good friend I've not seen in a LONG time, etc.), but I feel unaccomplished, tired, achy, and lazy overall. Wholly uninspired. It could be that my lovely time of the month is settling in for its visit. Perhaps the achiness is due to that. It could be because I skipped out on this week's exercise and yoga. Maybe none of the above. Maybe all of the above.

In any case, I feel like I'm watching myself from the outside, knowing that getting up and being active is the way to go. But since I have work tonight and a big editing assignment coming in the mail tomorrow, I feel like vegging while I can. So I continue in this pattern of achy laziness.

Let's hope I'm not so down on myself tomorrow.

yoga nidra

On Sunday at noon, I went to one of Athens's many yoga centers for a yoga nidra class. (I just wrote "noga yidra" and had to erase it. Thanks, Imitrex, for your charming effects on my brain.) My friend A. was about thirty seconds into her explanation of it when I decided it would indeed be for me.

As someone who's done yoga nidra twice, I don't feel equipped to aptly (or accurately) describe it. From a layman's perspective, it goes a little something like this:
1. Lie on your back on the floor, preferably on top of a yoga mat or comfortable, thin cushion.
2. Cover your eyes with a soft cloth or eye mask. (For people who can tolerate the smell, a lavender-infused eye mask is nice.)
3. Adjust your body so you are as comfortable as possible.
4. Listen for instructions.
5. 45-75 minutes later, you're done. You have not moved that entire time.

This yoga can be done by even those of us who aren't flexible or super-athletic. Let me reiterate: YOU DO NOT MOVE FOR AN HOUR.

The teacher (or kind British voice on the free mp3 recording) will have you get in position and relax first. Then you'll "rotate consciousness" (skeptics, just go with it) by focusing on one body part at a time. The "61-point" focusing exercise is repeated 2-3 times and really does leave you feeling relaxed and mushy and good. Then you are led through some relaxing breathing exercises and visualizations. The goal afterward is to feel more refreshed and ready to live life, as a properly done yoga nidra session is supposedly as restorative as four hours of deep sleep.

Interesting stuff. And it feels so good! It's also interesting to willingly put yourself in that stage that occurs between wakefulness and sleep, that lucid dreaming zone where it seems as if you're having an out-of-mind experience, watching how your brain works as your body calms down. It's really, really interesting. I promise.

I refer you to this Wikipedia link and really encourage you to read it. Yoga nidra is especially recommended for those whose brains race, who have chronic pain, who have been feeling stressed or anxious, and more. It takes awhile to get used to the practice, but I'm told by the yoga teacher and other practitioners that every time you do yoga nidra it helps you--and every time the session is different because you yourself have changed since the last time you practiced.

"narm!" (arm numb...narm!)

For those of you who are Six Feet Under fans, there's a slim chance you know what I'm quoting in today's post title. If you're confused, worry not: I shall not enlighten you. I will tell you to watch Six Feet Under, however. I've watched the entire series twice over. I love it.

But back to business: my left arm has been a state of discomfort for a few days now, and my hand has hurt off and on. I suspect a pinched nerve. Yeow! You know when you awaken after sleeping on your side and your arm feels out of whack and slightly numb in spots, slightly painful in others? That's how my arm has been feeling for DAYS. My sneaking suspicion is that my usually funky back has done something shady to the nerves that run down my arm. I'm going to give it a little more time before saying uncle and spending the dough on a doctor. It's crazy how large a portion of my ever-dwindling money pile goes to health costs.

Sometimes I wonder if I'd be more apt to see a doctor if I had insurance. My immediate response is "YES," as I now feel I would not take health coverage for granted as I did for the first 26 years of my life. I can't imagine being able to see a doctor and not having to pay an arm and a leg--the thought has become hard to wrap my mind around. When I did have insurance, I didn't like going to the doctor, though. I postponed visits and didn't have a tendency to make appointments to investigate such things as numb arms. Maybe now that I've grown older and wiser I'd change my habits. Maybe the subject is null and void since I don't have insurance and won't have it for awhile.

Poop da loop. Off to a productive day!

Thursday is TODAY

Well, as I suspected, the pattern continues. I felt really great this afternoon and, the moment I realized how great I felt, tried to push the thought of an impending Migraine attack. (As I've mentioned before, I often feel wonderful right before my head pain sets in.) J. and I went grocery shopping and it was at the store I started feeling light-headed and icky. An hour later, I was home but not any worse for the wear. I managed to tidy up very slightly for this evening's book club meeting at my house and even baked some brownies and made guacamole!

Around 9:15 or so, the blurry vision took ahold and the left side of my head started feeling...well...not right. I don't tend to consciously feel my head when I'm well; it's only when I'm coming down with a Migraine attack (or head cold, for that matter) that my body remembers my head is even there.

It's 10:30 and I am going to lie down in bed after taking an Imitrex and my nightly regime of pills.

Somehow I'm comforted by the fact that the Thursday Migraines are getting predictable. This logic seems screwy--I don't want to EXPECT them, but I do want to be prepared. Oddly enough, Thursday has been my favorite day of the week since I was little. I intend to keep it that way--Migraine, you will not get me down!!!

my near-death experience

Today I had one of those Migraine attacks during which I felt so awful and so sick that I gave up all my hopes and dreams and figured there's no chance in hell I'll ever accomplish even one-tenth of what I want to do. I lay in bed, afraid to move for fear of waking the nausea beast. My duties weighed heavily on my mind: call the leasing agent to talk about the bookstore; talk to the staff at the shelter about tutoring adults; clean the house; make sure everyone knows tonight's girls' night is canceled; send off those letters I keep forgetting about; make sure I have all my meds and clothes packed for this weekend's trip; oh my god I have nothing to wear to the high school reunion Saturday; oh my god why do I care?

As you can guess, it was hard for me to fall asleep and rest.

While babysitting this morning, my head acquired that good ol' stuffy feeling it's been getting most days for the last several months. Driving in the car, E., the three-year-old, was singing to herself in the backseat and her higher-pitched words pierced my ears. "Oh no," I thought, "is this the beginning?" An hour later, I was leaving the kids' house and my vision felt blurry. I tried to ignore the signs, for oftentimes they end up melting away into nothing and I feel fine and migraine-free.

That was not the case today.

I decided I needed a power nap. I woke up feeling less sleepy but more achey. I called the mom of the kids I babysit as I made soup, leaving a message in which I asked if I could call off for the afternoon. I had a Migraine and it didn't seem to be going away. If she needed me to come, I could, but I'd probably want to lie on the couch while the kids played.

I sat down with my bowl of hot soup and dipped my spoon in. The first time I brought it to my mouth, a wave of nausea overtook me and I thought I'd be sick. I stood up to ready myself for that disgusting trip to the bathroom but was too dizzy to stand. In the space of ten minutes, my Migraine had gone from tolerable to utterly debilitating. I cancelled the babysitting date for good and lay down for hours. HOURS. Two Imitrex pills, one Naproxen, and several mini-naps later, I emerged feeling woozy but pain-free.

Now I don't feel so despondent and hopeless, but today's episode did give me pause. Most Migraine attacks are ones that I can medicate quickly and all but cure. This one and the one I had two weeks ago were especially resistant to treatment, and I wondered what I'll do when one of these stubborn ones come on while I'm a bookstore owner. Who will take over last-minute? Can I put a "Back in 5...hours" sign on the door? These are issues I definitely have to work out, but I cannot--CANNOT--let them stop me from opening my business. Right?

notes from the insomniac

A couple of days ago I mentioned weird shooting pains I was having on the right side of my head. They were gone the next day and have yet to come up again.

Here's the best thing I could possible interpret from them in light of the fact that I've been Migraine-free since Sunday: THE PAINS WERE MY MIGRAINE EPISODES SAYING GOODBYE! Several especially painful Migraine episodes from the past were doing their own version of waving goodbye, having set up residence my head for years. They finally decided to leave me alone, and as the most painful ones left my world forever, they zapped their way out for a memorable exit.

Welcome to my dream world, folks.

In truth, I felt pretty amazing Monday, health-wise (especially in the evening), a feeling I've not experienced in a while now. Tuesday was even better, and today's pretty good but not as good as the first two days of the week.

Let's talk about what's not so hot: NOT BEING ABLE TO SLEEP. That's right, kids: that little insomnia problem I've not mentioned much on here reared its ugly head again. (Awhile back, a friend led me to a little song I love about insomnia--I pretend the song's about Migraines. I mention it in a post that's over two years old. Unfortunately the link to the free download isn't working right.) In the last couple of years, I've had some sleep issues, and they've really plagued me during their short stays. When I got off Amitriptyline a few months back, the glorious side effect it causes--sleepiness--was gone. I had trouble staying asleep through the night, and forget about 3 AM bathroom breaks. Those left me tossing and turning for what seemed like forever, nervous I would miss out on too much sleep and be tired or headachey the next day.

This insomnia is markedly different. I can't fall asleep at first but am not worried or frustrated about the problem. In fact, I haven't been sleepy at bedtime in a few days now! Very different from how I was feeling up until last week when I was exhausted almost all. the. time. Usually I feel exhausted when I wake in the middle of the night, it's just that I can't fall asleep. For the past few nights, I've felt energized and wide awake during sleepless times. Last night I couldn't fall asleep 'til 1 (after having climbed into bed at midnight). Woke up at 2:30 to pee and was up until 3:45 or so. Fell asleep for thirty minutes or so and was back up again at 4:15 and stayed awake 'til 6. My alarm went off at 7:20 and I snoozed a bit (yes, in the morning I was able to snooze) and then got up and was pretty chipper and energetic.

This afternoon I took a nap, which was probably a mistake for someone who wants to sleep normally at night. But I cannot read a book without getting sleepy-eyed (even if it takes an hour during insomnia bouts), and around 4 PM I fell asleep despite my not feeling tired.

I'm a real piece of work, I tell you. Let me know if you can identify with this issue--and definitely let me know if you think I'm right about the Migraines waving goodbye and leaving me forever. Ha.

once upon a mattress

I can't wait to go to bed tonight. And no, this desire is not directly connected to the constant tiredness I've been feeling lately. (Yes, I'll call my neurologist about this. Maybe even as soon as tomorrow!)

You see, I bought a new bed today. Miracle of miracles: you can't feel the springs in it when you lie down! AMAZING. It's soft yet firm. And inches wider than the full-sized, hard bed I've had for seven years. To top it all off, it was one of the less expensive models the store had to offer--and (surprise of surprises) I BARGAINED WITH THE SALESMAN. True story, folks: you can haggle over mattress sales. I got the thing for $80+ less than I would have had I not asked the guy to strike me a deal. (A few months ago in Boston, my friend got a deal on a mattress by staging a walk out. The salesman, really wanting a sale, called her back as she was exiting and offered her a deal. We are awesome.)

So that's the story. I've been waking up with back aches for many a week now, knowing I had to purchase a new, supportive mattress soon. And today I bit the bullet as soon as the Maxalt kicked my menstrual migraine out of the picture. Maybe tomorrow I'll feel stupendous!

how to survive a vacation tip 1: don't trust the website

A couple of weeks before Memorial Day weekend, I had an epiphany: I needed a vacation. Not an action-packed trip, mind you, but a vacation. No commitments. No one to answer to. No schedule. A vacation.

Considering my health situation and limitations caused by the seemingly incessant Migraine attacks I've been suffering through the last two months or so, my first instinct was to assume that I had to go alone. Having another person there would mean I'd feel guilty if I had to bail on plans to go to the beach for a couple hours or if I sat through dinner with my ice water glass against my forehead. So I concluded I'd go it alone.

Until I thought of a certain friend of mine, one of my best and dearest friends. In the interest of privacy (read: she doesn't know I'm talking about her on my blog as we speak), I shall call her by the nickname each of us has taken to calling the other: Handicapped Twin. HT for short. She is a woman near my age with rheumatoid arthritis--this year in particular she's had a really rough time of it and we've taken turns being laid up at each other's house to watch movies and zone out in our drugged hazes.

A week or so before Memorial Day, I emailed HT, who was finishing up a particularly hectic week at work. I said something to the effect of, "I need a vacation. I'm going to the beach. You're the only person I can think of who'd be the perfect company. Interested?" Within a couple hours I got an all-caps response: "HELL YES!!!" And thus The Plan was born.

I researched lots of hotels off the coast of Georgia and South Carolina and decided we should go to Jekyll Island, a gorgeous and (for now) well-preserved island I've been visiting since I was a wee little thing. Turns out HT and her family went to Jekyll since the 70s or early 80s as well, so she was up for some relaxing and reminiscing. I showed HT the top five hotels I'd found, and we selected one with a sharp website and a claim that the entire property had just been renovated. After confirming there was a hot tub and beach access, we booked it.

A five or six hour drive on Friday afternoon led us to Jekyll. We parked in front of the lobby at what looked like a long, stretched out motor lodge. "Maybe it's nice inside," thought I, thinking simultaneously of how the hotel room price and the facade did not at all match. We got our hotel room key and anxiously wheeled our luggage to the door. First thing I noticed? Cracks and cobwebs and rust by the dingy front window. I reassured myself again: "Maybe it's nice inside."

It wasn't.

The room smelled of stale smoke and mildew. (When we left for dinner, HCTFebreezed the whole joint--after asking me if the scent would bother me. What a great handicapped twin!) The hotel had graciously put in incandescent bulbs for me but, when I went to turn on the lights, the lamps weren't working. The "new" carpet was torn in a couple of spots, there were spider webs in the corner, and the stuccoed ceiling looked almost furry in texture. I dared not look too closely above my head for fear of figuring out what the dark matter in between the white fibers of the ceiling was, exactly. The bathroom light was a fluorescent, so I brought in one of the lamps to plug in and set on the counter. Turns out the only outlet functioned only when the overhead fluorescent was on. Attempting to remove the sticky, dusty, yellowed cover off the fluorescent bulb proved disgustingly impossible. The bathroom fan cover was suffocating with dust, dirt, and "debris," as HT so affectionately called the clumps of mysterious gray matter on the intake screen.

I called the front desk about the nonworking lamps and said, "Also: I was wondering if you had any renovated rooms available..." "What room are you in?" "617." "That one is renovated, ma'am." "Um, what exactly was renovated? Because..." (Then I proceeded to give a brief description of the horror I've already described above.) "Oh, each room got new paint, new carpet, and furniture."

Oh. Well then. Ignore the typical hotel tradition of cleaning the rooms and making sure the electricity works, I guess.

That night, I fell asleep in my double bed not feeling so hot. In the middle of the night, I had to take some medication and at last fell back into a hazy, fitful sleep. In the morning, I felt great--that is, until I lifted myself from the bed. Pressure rushed to my sinuses and the Migraine attack restarted in earnest. I left the room to read outside, but the blaring sun was too much for me to take when in so much head pain. Heading back into the room to lie on the bed to read meant another rush of stale mustiness, which made everything feel worse again.

When HT woke up, she too was feeling worse for the wear and completely congested, as I was. She said, "It's the mold." "What mold?" "The mold. On the ceiling. Look." "Wait--that dark stuff is MOLD? Are you serious!?" Eventually, after we'd decided we'd leave in order to save our poor bodies, I climbed on a chair to scrape at the ceiling with a ballpoint pen. Sure enough, the white ceiling material stayed put as the wettish mold scraped off with little work.

DISGUSTING.

We went to the front desk, ready with my camera full of evidence in case the receptionist said we had to pay for the next two nights, too. Instead, the impersonal but effecient woman quickly printed up a receipt for one night and said we weren't committed to Saturday and Sunday despite the internet agreement we were supposed to adhere to. Cool.

We drove out of there and scoped out more hotels, eventually deciding upon an expensive (but aptly priced) condo farther down the main road. The space was open, clean, personal, and--get this!--not moldy in the least. We felt pretty good for a couple of days and, unsurprisingly, those pesky sinus issues cleared up as soon as we were away from Room from Hell for a few hours.

That brings me to lesson 2 in tips for surviving a vacation: paying for what you need may cost more than the cheapy places, but it's NOT splurging if you're putting your health first.

tired of being tired

I'm so tired all the time. I've a sneaking suspicion this has to do with the weather, as pollen has permeated every breath I take for a couple of months now. When I'm not in the Georgia air, I am traveling--and traveling makes me tired, too.

When I first started taking Petadolex and rid myself of Zonegran, I was happily shocked at the energy boost I felt. "Wow," thought I, "turns out it's not normal to want to take a nap ALL THE TIME." I wanted to do things; I cleaned the house without complaint while blasting music or This American Life (my life's blood).

But recently I've become tired again. In the last week, I've attempted to go to bed at the same time each night and rise at the same time each morning. Maybe I'm getting too much sleep at once? (In a week I've not yet avoided my obnoxious pattern of waking up in the 3-5 AM range--grr.) I get up and at 'em and have even been getting exercise recently. Seems like the new me would be ready and rarin' to go.

But no. I just want to close my eyes. Is it working on the computer? Maybe, but not being on the computer doesn't guarantee wakefulness. Instead of my long walks resulting in an energy boost, I want to curl my sweaty self up on the couch and doze off for awhile. Driving makes me tired. Reading makes me tired. Walking makes me tired. Immobility makes me tired.

What to do?

Oh! One more thing. Maybe this nugget is my savior, the piece of the puzzle that will soon right itself and make it so I can live energetically again. I cut out caffeine completely about two weeks ago. I had cut down a lot and was only having caffeinated coffee when headachey or (in one case) slightly hungover. But after one cup I'd switch to decaf (a la my parents).

Now I'm clean, kids. I'M CLEAN! But I'm tired. The boost that caffeine provides is brief, I know, so having a cup of joe is not the solution.

I ingest six BILLION* pills of riboflavin (B2) each day and take my multivitamin in the morning. I have been eating breakfast, including delicious fruit smoothies and chock-full-o-goodness juices and snacks.

What gives? Does anyone see something obvious happening that would explain my sleepiness, my laziness? Am I missing the obvious or am I doomed to a sleepy existence forever!?

* or so it seems

missing out on all the fun

My friend just called me from the Okkervil River show. One of my favorite songs of theirs, "Our Life is a Not Movie or Maybe" (which plays when you visit their site) blared through my cell phone speaker, peppered with high-pitched screams of delight from the audience and some whistles.

You see, I was supposed to be at that show. L. bought me a ticket a month or so ago as a birthday gift, and I was thrilled by the fact that I was really into BOTH bands--the opener (Okkervil River) and the headlining act (The New Pornographers). This evening, I did some yoga stretches for my neck and then took a warm shower, telling myself this was a recipe for a good evening. I'd taken a nap earlier in the day to have extra reserves of energy at my command so I could stay out late and still wake up early for work tomorrow. I did everything right.

After my shower, I wanted to creep into oversized jeans and a hoodie for comfort; instead, I put on an equally comfortable but cute dress in an effort to convince myself I was feeling better. See? Look at me! I have mascara and a dress on, plus some earplugs in my pocket to boot. Surely I'm going to have a great night out!

Went to dinner. Tried to park downtown in a [free after 6 PM] metered spot but had no luck. When I went to my ol' trusty backup free lots, I was alarmed to see that BOTH of them now charge $5 to park. Frustrated and inordinately enraged (was that me or the steroids that wanted to crash the cars in the parking lot?), I drove back through the city streets 'til I found a spot. I wanted so badly to honk obnoxiously over and over to assert my premier position as another guy tried to deftly slide into the spot I'd been waiting for for a good sixty seconds, but I refrained and kept it at a light tap. Oh, I was ANGRY. Far angrier than I should've been, I realize. I tend to get fed up easily when I'm not feeling well, when I'm out of control--I'd bet the "extreme irritability" that comes along with the steroids for some people didn't help. (Last night I nearly had a temper tantrum in the middle of the night because the damned sheet kept getting tangled--I wanted to rip the stupid thing off the bed and burn it. 'Roidy, much?)

So there I was. I parked, took a deep breath, and walked to meet my friend C.--I was now 15 minutes late. We hopped restaurants a few times 'til we found one with no wait, and, after a strange coughing attack (my throat has felt weird lately), I sat down and eagerly awaited my sub sandwich.

It was at that point it hit me. I was exhausted again. My 45-minute outing had zapped my energy. I'm sick of sleeping, sick of lying down, sick of being inside my house. But going to a loud rock show was going to be a silly move, most likely. In any case, there's no way for me to see which one would be the better option in reality, to go to the show or to skip it--I have to choose one path with every decision I make and there's never any knowing what could have been. Maybe the show would've had me relaxed, jumping up and down, and feeling better. And maybe the crowded theater, the loud music, and the high-pitched cheering would have been a recipe for disaster.

L. came to where I was sitting with C. and hung out for a couple minutes. She has always been so loyal and so good to me regarding my Migraines. "I don't want you to go if it's going to make you feel bad," she said, and having her support allowed me to officially bail out, guilt free. I've known her for years now, and instead of getting more frustrated at my self-set, self-preserving limitations I make as time goes on, she's more understanding and less apt to pressure me to do something my body can't handle.

As I walked past the theater on the way to my car, I heard another favorite song ("A Hand to Take Hold of the Scene") playing from the stage. I paused. I peered in at the stage and saw the small figures bouncing to the sound of their music. The trumpets joined in.

I kept walking, the sounds of the music echoing off the small city block. As soon as I climbed into my car, there was someone else waiting to take my spot.

what gives?

I'm nearing my second day of the steroids. Granted, I took my first set of pills last evening around 8:30, so really the first and second days' worth of 'roids have only been in my system for a little over 24 hours. (Gross--did I really just write "'roids"?) But still--what gives!?

There's so much pressure in my sinuses, neck, and head. My neurologist (or rather, the assistant who always calls on his behalf) instructed me to not take any of my regular acute or rescue meds, so I feel screwed right now. It's been years since I've had to suffer through a Migraine attack this long.

I must have become more wimpy over the years, cause I just can't take it anymore. In high school and college (especially college), I pretty much went triptan-free. (I was diagnosed and given Imitrex when I was 21, about to start my senior year at college.) Before the diagnosis, I would have to muddle through the pain and side effects for up to days at a time. Now I can't let one go one for long before reaching for my emergency kit. Perhaps having an official name for my disease made it more real for me--I realized I wasn't just nursing a recurring, frustrating headache--instead, I was treating symptoms of a serious, life-altering disease.

This afternoon my beau and his friend dropped by for a bit, and I had a good hour or so of feeling okay--no major pains, but still a general sense of uneasiness and weakness. I made sandwiches and cut up fruit for dinner, but that seemed to be the last straw--as soon as I took my last bite, I was ready to lie down again despite my utter boredom with my bedroom at this point. A few hours later, I reemerged from my room for a warm bath. Using this pain-relieving ointment I got recently on my neck and upper back proved to feel amazing when combined with the warm bath water--I felt as if my neck was both chilled and warm at the same time as the hot water splashed on the ointment. It felt goooood. But the respite the bath allowed me was brief, and I got up and tried to do a couple of things before feeling bad again. Had a nice conversation on the phone with one of my best friends, but the last ten minutes or so became a struggle as I tried to sound chipper despite my head's throbbing.

I'm not sleepy. I've been sleeping so much. Sitting up hurts; lying down hurts. I can't take medication other than the steroids I'm on for three more days or the daily meds I pop. No Imitrex. No Maxalt. No mind-numbing Lortab.

When will this kick in? Am I continuing to get new Migraine attacks because of stress and the omnipresent Georgia pollen, or is this the same Migraine continuing its awful journey?

I guess I'll try to convince myself I'm tired again. The last few nights I've fallen asleep listening to guided visualization tapes and/or NPR podcasts (This American Life, Radio Lab, and Selected Shorts are my favorites).

Goodnight.

pain that woke me from sleep

For the first time in many months, I had such a bad migraine headache last night that I woke from sleep as soon as the Lortab wore off (around 5 AM). I called off work last night and lay on the couch, listening to radio show podcasts and watching stupid TV (after having dimmed the screen as dark as it would go and putting on sunglasses!). When my boyfriend came over after work, he encountered a girl lying on a couch in PJs with a washcloth over her face, a heating pad on her back, a TMJ dysfunction FaceCaddy around her neck (it had fallen), and a guided imagery CD playing on the computer. The heating elements had been turned off for awhile, and he commented that I was burning hot. He found the thermometer, took my temperature, and discovered I was hovering at 97.5 despite my hot, hot skin and face.

As I mentioned before, this has been a record week for BAD headaches. I'm used to going through times where there are a few minor ones and one major one in a week, but five big ones in six days is making me feel like I did brief periods years ago. AAAHH! I'd scream if it didn't hurt so much.

Because I've gone the forbidden route and taken three triptans already this week, I was too nervous to take another last night. Had one Lortab (7.5) mg and a snack before bed to absorb it; at 5 I woke up and took two more. Now it's 9:33 and the achiness seems to be returning despite the continued tingling effect of Lortab.

Lots of this has to do with stress, mainly stress from a neighborhood situation. I'm voluntarily on the board and have recently been pummeled by a series of emails and requests that give me WAY more responsibility than my body can take; the thinly-veiled personal insults aren't exactly helping either.

Let it go...let it go...let it go.

My neck hurts. My head hurts. I want to give up.

fifth time's a charm...right?

I've had the worst streak I've had in awhile. Sure, there've been days I've had some mild pain day after having been icky for a while prior. But today marks the fourth day in a row of having a moderate Migraine headache--and since I'm not supposed to take triptans more than two days a week, I feel stuck between a rock and a hard place. (Sorry for the cliche--can you blame a half-wit like migraineous me for not coming up with original witticisms?)

You all saw how I bitched (justifiably, I know--thanks for the reassurance!) on Wednesday about that sudden Migraine headache. I had high hopes that I'd filled my quota for the week then, but no such luck.

Flying into Virginia Thursday was uneventful, but as soon as I was in the car headed from the airport to my our hotel, the sure-fire symptoms began. Took half of an Imitrex (despite the label's order not to split them, I figured I'd cut the 100mg pill and take around 50 mg, thinking that'd be enough to kill the headache) and lay down. The pain was mostly gone in an hour or so. The next day, Friday, I woke up with a headache again but pretended it wasn't there. After all, it was a spa day for my cousin, my aunt, my mom and me! Surely a massage and a facial would heal me right up. Wrong. The pain got worse at lunch, post-spa, and I popped the other half of that Imitrex.

I took a nap at my aunt's and woke up feeling headache-free but extremely groggy and antisocial--not good when there was a casual dinner party over here and I was trying to be much more animated than I felt. (I failed my own test.)

Today I felt bad again but couldn't break the rule even further--after all, Friday marked the third day in a row having a triptan, and I couldn't face the possibility of a rebound headache by taking another triptan. So...I took a nap, my third one in three days. Woke up feeling rested, but the pain returned and is sitting here now, running up and down the left side of my neck, behind my cheekbone, and behind my left eye. An old, obnoxious acquaintance setting up house once again.

I'm traveling. The weather is fluctuating greatly here in VA, and my period ended today. The pollen and allergens in the air are icing on the cake.

I can't wait to feel good again. I realize I ain't got nothin' on the chronic daily headache or Daily Persistent Headache folks, but man! I've had quite enough!