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!

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.

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.

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.

April Headache & Migraine Blog Carnival posted!

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

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.

Pain Blog Carnival

Check it out here!

http://www.howtocopewithpain.org/blog/705/pain-carnival-march-2009/

In other news, I'm back from my month-long sojourn in South America. I have had many blog ideas drift through my head, but I've not been in the mood to write. We'll see what the next couple of weeks hold...

Hope everyone is well.

Creating a Migraine-Friendly Environment

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

Read the blog carnival entries here!

warm weather triggers migraines

Science has confirmed what many of us migraineurs already knew. I certainly get migrainey when the weather is super-hot and/or when I suddenly get overheated. I love warm weather but fear it when I know I can't escape from it when necessary.

I know the migraine bloggers will be all over this, so I'll be brief and give you some links:

http://www.webmd.com/migraines-headaches/news/20090309/warm-weather-may-trigger-migraines
http://health.usnews.com/articles/health/healthday/2009/03/09/warmer-than-average-temperatures-raise-migraine.html

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!! :)

attention fellow bloggers

I've been remiss in adding some of you to my blog roll. Whether or not we've ever met online, please shoot me a message if you'd like for me to add your name to my links list. There are lots of you out there who read my blog and also maintain your own--I'd love to include your blogs on my page, too!

Thanks.

Grand Rounds posted!

Check this out--what amazing blog posts from all over the web. Ladybloggers are awesome. Please excuse me for using the nonexistent word "ladybloggers."

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.

blog theft!

Dude, what the hell? (Sorry if I revert to Bill & Ted talk, but I'm quite miffed!)

I got a Google blogs alert for a blog entry called "the migraine girl: what's so pernicious about feeling good?" The document is mine, but has been rewritten to include random spaces, deliberate misspellings, and the like. I of course posted an entry called "what's so bad about feeling good" on November 30. I did NOT post it on some b.s. site called "Best Farma Online." I've been stolen from! Right?

I recall talk from other migraine bloggers awhile back about a guy stealing their content and posting it on his supposedly authorless site. (No author listed, harder to know who's behind it.) I can't remember what action they took or how they got him to remove the plagiarized material.

Help, bloggers!

For the moment, I'll be posting a comment on this person's web page immediately. I'm so annoyed and angry!

December headache blog carnival posted!

And no, I didn't get around to posting this month. Yet again I forgot! :(

Happier Holidays: December 2008 Headache Blog Carnival

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.

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.

Get thee behind me, Big Pharma!

I was contacted by a very friendly and persistent woman named Kelli regarding this Big Pharma-sponsored website that's supposedly created for the needs of migraine bloggers like us.

What follows is my response to the site, toned down for an email to Kelli, who wanted to know what I thought of the site, if I would use it, etc. I didn't point out to her any of the grammatical or spelling errors I found, nor did I mention the occasional link that led to the incorrect article or video.

Grrr! It makes me so angry that Big Pharma is even trying to worm its way into our grassroots patient-oriented blog community!

Dear Kelli,

Thanks for keeping in touch regarding the website. I would've forgotten to look at it were it not for your helpful reminders.

Unfortunately, I don't anticipate ever using the resources on my blog. First and foremost, there's not a whole lot of information available I can't get on my own through web searches and a bit of basic research. The hints and such are good for people who are just starting out in the world of Migraine sufferers & doctors; they're not so useful for we Migraine bloggers who already know a bit more about how to handle the disease and learn to cope with it.

I had high hopes for the video section, but all the videos felt like advertisements--very glossy commercials. Lo and behold, there was an advertisement for the pharmaceutical's prescription drug at the end of each snippet. I would not put that on my site, ever.

The links take a while to load, too--maybe someone is working on improving speed?

One glaring problem with the site is that it's BRIGHT white--and the links are light blue. Most migraineurs are very sensitive to bright light (especially fluorescent or blue-tinged computer light), and looking at your site made me squint even though my screen was dimmed as low as it could go. I highly recommend you change the background color at the very least so it's readable and doesn't hurt migraineurs' eyes.

Overall, I appreciate your personal effort in making this site and getting in touch with bloggers. I am not attempting to drive more traffic to my blog, so the "bring more people to your site" pitch does not appeal to me. I think there's a LOT more information, articles, etc. you could post to make it more useful. Unfortunately, some other sites (MAGNUM's, other blogs, etc.) already have a comprehensive list of online resources, so there's not much use for yet another site like yours--especially since yours is sponsored by Big Pharma.

Again, I do appreciate your effort but won't be using the site. Thanks for thinking of me and asking for my input.

-Janet G.

James's tips: be a critical consumer when it comes to Migraine news!

I think you should read these tips from Headache & Migraine News on how to effectively evaluate migraine-related news articles you come across. A succinct, smart, and straightforward guide for anyone, not just migraineurs. Thanks, James!