Alice in Wonderland Syndrome · crazy · Crystal Light · epilepsy · fat · food · headaches · Internet · medication · migraine · neurology · pain · seizures · stress · triggers

There’s A Word for That?



 someone who suffers from migraine headaches.
Earlier this week, I was doing some research online, trying to see if there was a connection between the two glasses of pseudo-Crystal Light I’d been having now that the weather is warming up and the massive migraines I’d been having, when I learned some nifty things. Such as the word migraineur. Makes sense that there’s a word for people like me, but it had never occurred to me.
Reading about triggers was rather enlightening as well. I wasn’t all that surprised to learn that artificial sweeteners are a big migraine trigger, since they cause all sorts of problems. I try to avoid them, preferring natural sugar, really I do. But for some reason, every summer, I go through this diet drink frenzy where I consume Crystal Light, or the fake store brand equivalent, in all it’s many flavors. No more of that for me. I’d rather be fat than in pain. Sugar is a trigger for many people, but I have to consume a huge amount before it gives me a headache; same with caffeine. Alcohol, on the other hand, give me pain within an hour or two of my first cocktail. No big deal, since I’ve never been a big drinker. Some of the other common food triggers are chocolate, cheese (hard or fermented), processed meats, and gluten. To the best of my knowledge, none of these are triggers for me. Good thing, too, because I don’t want to give up chocolate. Life is hard enough. Other triggers include weather changes, bright lights or loud noises, perfumes, lack of sleep, stress, missing meals, dehydration, hormonal changes, and crying. Yep, one reason I avoid the cosmetics counter at department stores. Those perfume samples are killers. Same as the laundry detergent aisle in the grocery store. First I sneeze, then I get a headache. No fun.
Migraine Triggers infographic
Here’s what really came as a surprise to me, however. In an article called ‘What’s Your Strangest Migraine Symptom?’ I learned that several things that have been happening to me for years are likely migraine-related. And here, I thought I was just crazy. Or had a brain tumor.
One of these symptoms, Alice in Wonderland Syndrome, is a disorder that causes a person to believe that body parts (and in some cases their environment), are changing shape or size. For me, it usually means that I feel as if one hand is growing larger and larger, as if it’s a huge clown glove, filled with air. It never lasted very long, but felt as if it did. Once, when a migraine was so bad I had to go to the ER for treatment, this happened after they gave me the fun shot; that time, I felt as if my ears were getting bigger and bigger.
The first time I remember this happening I was eleven-years-old. I had been reading in the afternoon during summer break, and suddenly, my right thumb began to grow. It didn’t last long, or get very big, and I don’t remember if a headache followed it, but I do remember being totally freaked out. Until recently, I never told anyone about it.
When I was in junior high, I read Stephen King’s ‘The Dead Zone’ for the first time, and one thing from that book has stuck with me ever since. The neurologist asks Johnny if he ever smells anything unusual, like rotting oranges, or feces, when there is nothing there; apparently this  a sign of a brain tumor. Well, it turns out these types of sensory hallucinations are also a migraine symptom, one I’ve had often. I was pretty sure I didn’t have a brain tumor, because I’ve had my fair share of MRI’s & CT scans, thanks to the epilepsy, but thanks to Mr. King, I was always scared. Now, I don’t need to.
I do wish that one of the neurologists I’ve seen over the years had pointed some of this stuff out. I’m especially cheesed that the migraine specialist I’ve been seeing for the last year never mentioned any of this. I appreciate that there are all these online communities, but shouldn’t a doctor have said something?!
I’m sure there’s a word for how I feel.
blogs · book reviews · books · exercise · fat · food · headaches · · Jennette Fulda · medication · pain · skinny · topamax · weight · writing

Read This Book!

I’ve spent the last two weeks obsessed with Jennette Fulda. I began by reading an excerpt of her newest book, Chocolate and Vicodin:My Quest For Relief from the Headache that Wouldn’t Go Away, and then searched out her first book, Half-Assed: A Weight-Loss Memoir at the library. This led me to the blog she’s known for, It’s been difficult to tear myself away!

Jennette, at her heaviest, weighed nearly 400 pounds, and by changing her eating habits & exercise, she lost half her body weight! I loved reading her stories of this change, partially because she’s honest, and not one bit self-righteous, but mostly because she’s just plain funny. I laughed out loud (lol) when she says “I felt confident enough to sign up for a 5K race. The former fat-girl bylaws dictate that you must run a 5K or you will be forced to gain back all the weight.” Seems that every formerly fat-girl I know is now running 5k’s and I think perhaps that’s why I’m still fat. I don’t want to run.

Jennette’s second book, Chocolate and Vicodin is in stores now. It’s the story of the headache that wouldn’t go away. In February 2008, she got a headache, and has been searching for a cure ever since. Chronic pain is nothing to laugh at, yet she manages to make it funny; the woman has a gift.

Now, I haven’t had a chance to read the book yet; it was just released last month, and I am too broke to purchase it. (It is on hold at the library, and my birthday is coming up, so..) I have read a couple of excerpts and the blog, and I must say, I am feeling very in sync with Jennette.

In the search of a cure for never-ending headache pain, she’s given a number of medications, and I have personal knowledge of several of these. The section of her blog that put my feelings into words is quoted below.
“To complicate things further, although the Topamax was making it easier to eat less, it was also making me stupid. It’s nicknamed “Stupamax” and “Dopamax.” It made it harder to speak right, like someone had placed the English language on the top shelf where it was just out of my reach. I could still see it, but I had to stand on my tippy toes to grab words, and even then I was just knocking them over instead of grabbing them firmly. I just felt…dumb. I found myself unable to focus as well. It put a damper on my mood. The crazy switch was turned off, but the stupid switch was turned on.”

I took Topamax for nearly 4 years, as an anti-seizure medication, and hoo-boy, do I remember that feeling. When I couldn’t find the words I wanted I used to say my brain was skipping, like a scratched record. My neurologist would test me to see how my verbal skills were, and eventually, as they deteriorated, and the Topamax wasn’t controlling the seizures, we switched meds. Right now I’m on a very low dose of it again, to help with chronic headaches (ugh), and I’m skipping every so often. But it is helping me lose weight.

Jennette Fulda writes in a real & humorous manner about things that are happening in her life. It’s feels like talking to a friend. I think this is why I’ve been unable to tear myself away from her blog archives for the last two weeks–I was getting to know my new friend! She’s smart, snarky, strong and talented. Read her books! I promise you won’t be disappointed.

change · eating · exercise · fat · food · goals · happy · resolve · skinny · weight

The Incredible Shrinking Jonna

Food & eating is a strange thing for me. While I don’t actually eat large amounts of anything, I do have a tendency to snack on things like potato chips. Easy enough to fix–if I don’t have it in the house, I can’t & won’t eat it. Same with my major weakness– Pepsi. I’m a junkie: I can’t have just one, and if it’s in the house, I’ll guzzle it until it’s gone. But if I’m not around it, I’m okay. So I don’t buy it.

I’m the wrong person to take to those “all-you-can-eat” type restaurants, because, I am not a big eater, and I never eat enough to justify the price. Everyone else is going back for thirds & fourths, and I’m sitting there, waiting to leave, drinking my sixth glass of Pepsi.

At regular places, I’m fine, because while I’m somewhat picky, I also like to try new things. And because my eyes are bigger than my stomach, I always have a doggie bag to take home!

My boyfriend, Steven, asks me at least once a day “Did you eat anything today?” because he knows I get involved in what I’m doing, and forget, until suddenly it’s five-thirty in the afternoon, and all I’ve had all day was that cup of coffee at nine. No wonder my head aches!

You’d think that someone who seldom eats, or eats very little would be a tiny little thing, wouldn’t you? Well, you’d be wrong. I’ve been struggling with my weight since I was nine-years-old! When I had my tonsils out at age 13, I lost about 20 pounds, because I refused to eat for 2 weeks (I was scared it would hurt to swallow.), but that didn’t last. Again, at age 35, I lost quite a bit of weight as a side-effect of an anti-seizure medication I was taking. The pounds just fell off, and I felt great–while it lasted, which was for about 19 months. And then it all came back, with friends, after changing meds. Of course, now I know that my body chemistry, my thyroid & pancreas, and a whole bunch of other things are all messed up, and have been since I was about nine, which is part of the reason I’m fat. But a bigger part, I know, is that I don’t eat well, and I seldom, if never exercise.

Yes, I admit it. While my internal chemistry may have triggered the weight gain, I’m responsible for it staying. (Never thought I’d actually say that out loud. And I didn’t– I typed it. You can’t prove this is even me…)

Yeah, yeah, I know, you’ve heard all this before. Fat girl gonna change, Yadda yadda yadda.. Since last September, when I first posted, I’ve actually lost weight, in spite of myself. In spite of doing very few of this things I said I would do, for various reasons. Seems as if whenever I make & declare plans, the Universe says “Oh, no, you don’t!” and throws up a roadblock. Well, look out, Universe, I just got a GPS that’ll get my by whatever you got! In September, I was weighing in at about 206 pounds, on a good day. (Another thing I never thought I’d tell the entire world.) Today, the scale says 188. I’m pretty damn happy, considering that I’ve not been able to get to the treadmill since before Christmas!

Still on a body that’s only 5’2″, with small bones, 188 is a lot of weight. So I am determined to make sure those numbers continue to go down! The picture above was taken in August 2010, and is my official “Before” shot. Look for pictures of the incredible shrinking Jonna coming soon!

breast cancer · Buttercup · exercise · fat · pain · Shel

Suck It Up, Buttercup!

In a post titled Wisdom of Fat, I swore that I’d get myself off the sofa and onto the treadmill. I wanted to break my lifelong habit of laziness & bad health with some daily exercise, other than the walk between bookshelf & fridge! When I made this promise, I was determined to change things, and yet, nothing has changed.
The last few months I’ve complained a bunch about being in pain: I’ve had almost daily headaches, body aches, and toothaches. As usual, I’ve let this derail me from almost everything I’ve wanted to do. NO MORE!
In my lifetime I’ve probably made this kind of promise as many times as an alcoholic says they’ll give up drinking. Nearly every day I say to someone “I’m going to start exercising (insert time here). ” And I always mean it. But something always stops me: something big, like a seizure, which can knock me out for days; or something small, like a headache, or wanting to finish watching an episode of Seinfeld. Valid or not, I’m through making excuses.
My BFF, Shel, has spent the last 2 years fighting breast cancer, and I need to take her advice:
“Suck it up, Buttercup!”
Yes, I’m sure I’m still going to have pain. Big deal. If Shel can get through it, so can I. We buttercups are pretty tough, after all!
books · exercise · fat · food · Oprah · realizations · self-esteem

Wisdom of Fat

“Believe in yourself, and others will, too.”
That’s what my Facebook fortune cookie told me today. Somehow, I find it easier to believe in the wisdom of an imaginary Chinese treat than in the truth I hear in my own head each day.
I am a woman in 21st Century America. This means I have “body issues,” and “self-esteem issues,” and “food issues.”
I was not aware I had food issues until recently. As with many things, Oprah told me about it. I was aware I had problem with my weight; yes, I am a fat girl. (That’s right, I used the f-word! Get used to it.) I’ve gone up & down the scale since puberty, and have never liked the higher end. A lot of fat girls will tell you “Oh, I never eat more than a salad!” and you know they’re lying. With me, it’s true. Well, partly. I don’t eat much salad, but I don’t eat much of anything. I am the fat girl who doesn’t eat a ton.
Until age 9, I was the smallest, skinniest girl in class. Also the loudest, bossiest and surrounded by friends. My life changed between second and third grade, when I got glasses (not a bad thing–I was delighted to be able to read without a headache!) and gained 30 pounds! When school began in September, I looked like a different girl, and the same kids who had been my friends treated my like an outcast. I was stunned. Since I hadn’t changed what I ate, my relationship to food didn’t change then. The doctor only said “she’ll grow out of it,” which I never did.
I finished my years in that school miserable, and was thrilled when my family moved to a new state. It was a chance for a fresh start. I made new friends in that school, friends I still have today, 30 years later! And by high school, I realized I wasn’t as fat as I thought I was. I was still one of the bigger girls, but it didn’t matter, and I had fun! College was up & down, in many ways. I gained and lost jobs, friends, and weight, and grew up.
But I still did not realize I had issues with food. With how I looked, yes. How could I avoid that? I love glossy magazines. I am always ticked that my hair doesn’t look like the models, even when I follow the step-by-step directions! My lipstick never lasts, and my nail polish chips. Invariably, I miss a spot when I shave my legs. Yet I look in the mirror, and don’t see a goblin. I see a beautiful woman. A fat woman, too.
Watching Oprah a few weeks ago, I was struck by the stories of an audience full of women who say they’ll never need to diet again. All of them had read the guest’s book, Women Food and God, and have stopped being compulsive over-eaters. I watched, with tears in my eyes, and rushed to get a copy. But as I read, I realized –I am not this woman. I don’t eat to hide from pain, or out of denial. (I do tend to go overboard on the potato chips when I’m bored, but it’s not quite the same thing!) In spite of what Oprah and Geneen Roth say, I don’t have “food issues!” Whoo-hoo!
Turns out my issue is that I’m lazy, which my sister has known for years. If I’d get up off the couch and do some exercise, I’d be fine. Easier said than done, right? Am I willing to do an hour on the treadmill if it means I’ll be able to buy that dress I spotted yesterday? Maybe. But if it means I will feel alive again, get a grip on my life, and stop focusing on food all the time, then yes! As much as I hate to sweat, I despise feeling like a stranger in my own body more. Next stop–treadmill.