ChronicBabe Blog Carnival #17: Gratitude

So I rarely participate in blog carnivals these days (these years?). Hope that'll change soon.

For the time being, though, I like to read blog carnival posts. Readers of my blog will probably find lots of support and warm words at Jenni Propky's ChronicBabe site. In addition to providing great content for women (and men!) dealing with chronic illness, Jenni coordinates a monthly blog carnival. Here's this month's feature about GRATITUDE: http://www.chronicbabe.com/articles/867/

Enjoy!

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

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

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

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

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

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

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

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

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

this strange sickness

I’m not used to having crappy days that aren’t migraine-related. This feeling is strange and uncomfortable—I almost expect to feel my head pounding when I stand up.

But I feel fine, physically speaking. My eyes are tired and I would love to curl up for a nap, but my head is okay and I’m not at all nauseated or headachey.

For someone who is used to chronic illness, it can be off-putting to feel sick for some other reason. Some reason that is, at least on the surface, unrelated to the usual culprit. Sometimes, during particularly bad migraine attacks, I think, “I would take any other ailment! Like, give me a sore throat or a cough, but get rid of this migraine!” When my yearly or biyearly cold comes around (as it always does), I curse my migrainous self. Sore throats KILL. Coughing so much that you can’t sleep is a form of agony all its own.

Now for this funk. I don’t want to be in the midst of a migraine episode at the moment, but at least in that case I’d have a reason for feeling lethargic and ever so blah, emotionally speaking.

This morning I woke in an uneasy mood. I hadn’t slept well due to loud noises outside my window. Have I mentioned I live within two hundred yards or so of an active train track? I can usually sleep through the whistles and chug-a-chugs, but when the conductors feel the need to couple their trains at 3 AM, this leads to horrifically loud crashing and banging. Imagine freight train cars slamming together hard enough to connect, and you’ll know what sorts of noises woke me up every few minutes in the night. The stress-infused nightmares didn’t help my mood upon waking.

Do you ever feel extra-out-of-sorts when you feel sick/depressed/blah/tired for reasons not attributable to your migraine? It’s really throwing me for a loop.

wishful thinking?

I don't blog much about migraine disease anymore, but that's not because the disease is behind me, it's just that I devote my online time to other things. (Speaking of that, I've really missed writing about migraine; turns out writing was a more powerful coping mechanism than I'd ever thought. Might have to return to the blog!)

Each day I get an email full of articles about migraine in the news (thank you, Google Alerts). Football player Percy Harvin is mentioned daily. I don't know who is is apart from the fact that he suffers from severe migraine attacks and is getting criticized in the news (which makes me irate, as you can imagine).

This morning I saw a headline about Harvin's claim that he thinks he's put the migraines behind him. This is just a blurb of an article, but it seems so naive. It's frustrating, too, that such a major figure has many people's attention right now and he could use this as an opportunity to educate people about this disease.

http://nbcsports.msnbc.com/id/38900552/ns/sports-player_news/

For his sake, I hope I'm wrong and he has found a miracle cure most of us have never stumbled upon despite years of trying.

aspartame fears strike again

This article strikes me as a little alarmist, and I can't seem to completely trust the content on the Huffington Post. That being said, I'm sure that much of what Mercano has to say is well-founded.

Here's the link to an article about the evils of aspartame!

As I've mentioned before, just one piece of chewing gum sweetened with aspartame can knock me out with a migraine for a day or two. Splenda and sucralose do the same thing; luckily I eat pretty well and rarely ingest these chemicals accidentally.

Still, the questions this article raises brings up an undeniable truth: we must be careful of what we put into our bodies! Yes, many "natural" chemicals can hurt us. And the lab-created foods and sweeteners aren't evaluated in longevity studies, meaning there's no way to really know what the buildup of unnatural chemicals may do to our systems over our lifetimes. Be healthy & cautious, friends!

support migraine research & perhaps win a prize!

The tireless folks at the Migraine Research Foundation (who happen to be very supportive of health bloggers like me) have a really great website set up. Donating to migraine disease research has never been so much fun! Donate to this very important cause and you'll be in the running to win any number of cool prizes. See this website for details.

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. ;/

April Migraine Blog Carnival posted!

Check it out here.

I submitted an old post but it's not on the blog carnival page for some reason. Here's what I wrote about bibliotherapy/guided reading.

perfect timing

I've mentioned before how grateful I am to have discovered the Partnership for Prescription Assistance (http://www.pparx.org/en/prescription_assistance_programs). I enrolled quite a while ago--with my doctor's prescription (and a low enough salary to make me a deserving candidate), I now pay less for drugs than I did when I had insurance. And when I say "I pay less," what I mean is I PAY NOTHING.

Yesterday and today I've had morning migraine attacks followed by druggy, semi-wasted afternoons. I love the quickness of Maxalt but not the ghost of a Janet it leaves behind. I've been working like a madwoman of late, so maybe this is a good chance to catch up on reading. (Today I finished three books!)

But taking Maxalt yesterday and today meant I was already halfway through with the samples my doctor gave me a few weeks ago. What to do if another migraine hit in the next week? Did PPARx ever get my application? Would I be approved for more prescription drugs through their service?

I checked the mail and voila: 5 packs of Imitrex just waiting for me. All it took was filling out the application, proving I am not rich, and getting my doctor to check me out and write a new prescription for triptans.

How my mind is eased when I know I have drugs if I need them. Sometimes just having them on hand makes me feel a million times better.

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.

March 2010 Headache Carnival posted!

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

when you're partner's in pain, too

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

7/24/09

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

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

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

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

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

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

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

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

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

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

question for my fellow migraine bloggers

Do y'all still use Wellsphere at all? I get about 50 emails a week from them (slight exaggeration?) but never click into the site. Now I only vaguely remember why I decided to stop being involved, and I'm too lazy to do research to pick at my old-self's brain.

So I'll just ask you: do you use Wellsphere? Is there any point to my keeping the account open (assuming I get more active in the health blogging world again).

Thank you. exes and ohs to you.

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.

absent migraineur

Can't say why exactly I've not been writing on here. The obvious answers refer to my very busy bookstore life (I'm opening my own independent bookstore in Athens this year), my busy personal life, and my not wanting to be on the computer after a long day of work. I have been doing pretty well, migraine-wise, and I like that I don't think about attacks during pain-free days as much as I used to. That being said, I miss the community of health bloggers and must admit that nothing beats getting a warm email from a reader who says, "At last--someone who understands what I'm going through!"

I logged into my Blogger account this evening and found 43 unmoderated comments. Unbelievable. (And few of them were spam.) For those of you out there who noticed I've been gone, I'm sorry if I've disappointed you by disappearing!

Life is good. Had a 3-day migraine attack during my birthday weekend in Miami a few days ago, but I handled the pain well and was able to have a fulfilling, fun vacation all the same. I feel that, for the most part, I'm better at coping with migraine attacks than I used to be.

My primary care doctor put me on the birth control pill, which is really helping my migraine attack frequency but wreaking havoc on my menstrual cycle. Supposedly that will clear up soon, but man! 20 day periods are not my cup of tea. Maybe it's just menopause, a couple decades early. :)

Oh, and speaking of decades: I've wrapped up 3 of 'em now. Time to change my blog description at the top of this page, as I'm no longer a "20-something"!

Finally, I'll refer you to this month's How to Cope With Pain Blog Carnival. The moderator was kind enough to include me even though my posts have all but grinded to a halt.

Take care, be well, and let me know what's new with you.

Mindfulness-Based Stress Reduction

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

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

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

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

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

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

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

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

stuffy head or migraine?

I'm not sure if it's my freshly diagnosed autoimmune issue, my mucositis (yech), or just bad luck, but I've gotten lots more colds in the last couple of years than I ever had before. I don't mind them so much--sometimes I enjoy the scratchy, sultry voice (it allows me sing in lower registers as I belt along with the radio in my car--I'm amazing).

Perhaps it's not the frequency of colds but their duration that has changed in recent years. I used to get a cold for 2-3 days and then have little to no trace of it left. Nowadays it seems my cold develops slowly and takes a long time to leave. This one's been around for at least a week and a half. It started with sneezing and stuffy-headed-ness. Then it moved into my throat, where it settled in and made it hard for me to speak loudly enough for people to understand me well. After my voice started coming back early last week, I figured the cold was on its way out. WRONG. It moved back into my head, focusing mainly on the left side of my sinus cavity.

Here's the rub: I can't always tell the difference between the beginning stages of a migraine and sinus congestion. From what I understand, a lot of migraineurs confuse the two. (Let's not rehash the sinus headache issue here, though.) This past Wednesday, I went to bed early with a congested head; I woke in the middle of the night a couple of times because my head was so heavy and it was hard to breathe. After awaking Thursday and walking around the house a bit, I realized I was not suffering from just sinus congestion: I had a migraine that was rapidly progressing. I kicked myself for not having taken a triptan in the middle of the night.

But it had been so hard to tell the difference between sinus pressure & the early stages of migraine!

This morning I awoke with so much sinus congestion on the left that I immediately opened my bedside table drawer to get a Maxalt tab. There was no such tab in the drawer, so, favoring another hour in bed over getting up to look for my triptan pill, I took a nasal decongestent (I have an emergency drug arsenal next to my bed, of course). Upon waking in earnest, I dared to try my neti pot again. (Months ago I had a strange experience wherein using my neti pot led to an immediate and severe migraine--not sure how I screwed up, but I did and it HURT. I've been scared to try the pot again ever since despite its having worked wonders pre-pain-incident.) I can't claim that any one thing cured today's head issues, but the decongestent + neti pot flush rid me of the migrainey feeling I had. Interesting.

Do any migraineurs (or folks with sinus problems like me) have any tips as to how to know when to use a triptan and when to focus on the sinuses? How do you tell the difference between the beginning of a migraine and a side effect of sinus problems?

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

This makes me angry!

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

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

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

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

April Headache & Migraine Blog Carnival posted!

A helpful potpourri of writers' favorite posts from the past month. Enjoy!