Quick, Like a Band-Aid

12 Apr

Everybody has a story. (Or two, or three …)

So, I’m not sure why I’m sharing mine for everyone to read, but I am. I know I never want people to feel like they’re alone in their struggles. I know I have an insatiable need to write, and that need hasn’t been fulfilled lately. I also know that I’ve been inspired by one friend in particular who has shared her horror story on Facebook recently, and I’ve been so appreciative of it, even though I’ve never been through what she’s been through. She’s brave, but vulnerable, and I admire her candid approach to getting through the tough parts of life. Scratch that – all parts of life are tough, really. Even the really beautiful parts can be hard. I have alot to share. Plus, my mom has been bugging me for years to write a book about my life (which, indirectly, would also be about her life, because we’re very close.) I haven’t done it because it all just seems so self involved, but I’ve realized that if you’re not a little involved with yourself, you can’t really be involved with anyone else. Blogging is the next best thing to writing a book, right? I mean, people who write books write blogs. It’s better, really, for me, because I don’t have an editor or a deadline or anything else breathing down my neck. If you stick around, you’ll learn I’m too nervous for that. I may get carpal tunnel in trade for nasty hand cramps from writing the old-fashioned way, but I’m thinking it’ll be worth it.

If you don’t deal well with illness, humor about illness, or frank-ness or things of the like, you don’t have to read any further. Seriously, my feelings won’t be hurt. I can promise that the whole blog won’t be a journal of my aches and pains, but I give you permission to click the red “x” or the back arrow button right now. Actually, the blog is just going to be about my life, which just happens to include aches and pains. FYI, I’m the kind of person who deals with the hard stuff with a little humor, which is sometimes a little twisted, and I know that makes some people uncomfortable or seems inappropriate. It can also seem like I’m undermining the strength it takes to get through serious situations, but strength comes in all shapes and sizes. I feel like God gave me humor to cope. Humor is one of my strengths. (Oh yeah, and I’m a Christian, so God has something to do with that strength.)

I’m a pretty open book – if you know me, even slightly, you probably know that. When I share things about myself with others, there are no dumb questions, and rarely a question too personal. I probably overshare, actually. It’s always a little painful, though. So here it goes, quick, like a Band-Aid:

First, a little back story (Reader’s Digest version.) I spent 5 years that I can only describe as ridiculous from elementary to high school spending quality time with doctors who poked and prodded me, accused me of what we kids would have called back then being a “big faker,” accused my mom of making me sick, put me on crazy diets, etc., etc. It started with some icky gastrointestinal issues, which led to an EGD (esophagogastroduodenoscopy – yeah, why can’t they just call it a scope?) which led to what was probably my first seizure. No one knows for sure, because all I recall is waking up with a tube down my throat, being held down by multiple nurses, and the hallucinations I had because of an allergic reaction to the anesthesia *and* the drug they give you to make you forget any of the procedure. Nice going, body. (It’s actually a pretty hilarious and nightmarish story, which I’ll probably share in detail later.) Finally, an awesome, young and dashingly handsome neurologist named Dr. Chudnow overheard my mom talking to a nurse and took on my case. Within a few months, he diagnosed me with epilepsy and had me on the path to wellness with a good combo of meds to boot. Now, my friends know I’m epileptic, but if you’re not my friend you didn’t know that until just now.  If you’re my friend, you may also know that my mom is, too, along with her mother, and my dad, who has had seizures, had an epileptic brother . You’d think that bit of info would have helped out the 12 docs who couldn’t seem to figure things out … Something that not even some of my friends know, because I sometimes forget to tell people this, that I have a very rare type of temporal lobe seizures (the misfiring goes on in the area around my temples.) So rare, that only one other case like it is documented in the U.S. What can I say? I’ve always been different. I’ve also always wanted to meet that other person, if they’re still around. I don’t picture anything special, just a chat over some unhealthy food like ice cream or a burger.

Anyway, fast forward, and I haven’t had a seizure in a really long time (yay!), because, like lots of kids with epilepsy, I grew out of it in my teens. Along with that whole experience, though, came what has become a lifelong battle with anxiety (including “white coat” anxiety,) some weird body image issues (at my sickest, around 12 years old, I weighed 67 lbs.,) obsessive compulsive tendencies, and amnesia from that period of time in my life. I guess while my brain was busy making me convulse, it felt guilty and tried to make up for it by making me forget. Friends and family will mention things that happened during those years, and I come up with zilch to recall. Sometimes it’s simply because they forget I wasn’t there to experience it with them (thanks, guys,) but most of the time it’s because I was there and don’t remember. It’s good in lots of ways, but part of me wants to try hypnotherapy to recover some of my memory. If anyone reading this has ever done that, let me know exactly how freaky it was on a scale of “bad dream” to “actually being chased by a guy with a chainsaw.”

That stuff I went through as a kid was tough. I was teased, people were scared of me, and at one point everyone thought I was going to die from a brain tumor and pretty much ran away. These last 5 years, though, I’ve encountered a new kind of tough.  Around the age of 21, I was diagnosed with Fibromyalgia. If you’re not familiar with it yet, it literally translates to “pain in the muscle fiber.” It’s oh so much more fun than that, though. You discover there are many different kinds of pain – stabbing, radiating, nerve related, burning sensations – and those pains move around randomly, which makes you sound like a complete hypochondriac while trying to describe it. You got your muscle weakness, spasms and twitches; I’m especially fond of the glute twitches. They always happen during a serious conversation with someone, without fail. (I just want to say, “I’m sorry, could you hold that very important thought for a sec? It feels like a gnome is tapdancing on my right butt cheek.) You also got your fatigue and brain fog (think chemo brain or pulling an all-nighter in college and not getting to crash after the test.) They call it FMS for short, and the “S” stands for syndrome. In other words, doctors don’t get it. They’re starting to understand it, but I think I speak for everyone with FMS when I say the understanding can’t come quickly enough. I say I think I speak for everyone – I know I speak for my mom and my dad, who both have FMS, too. Before the idea that the illness might be hereditary was popular, that one really used to raise the docs’ eyebrows. Ironically, I was diagnosed in the middle of going to school to become a massage therapist, which happens to be on the Top 10 Most Physically Strenuous Jobs list, so you can imagine that didn’t work out so well. I somehow finished school, did my internship, and got my license. I worked professionally for a few months before I was a total zombie, and probably not a very nice one at that. I miss it, but the whole experience did give me an extra arsenal of knowledge of my own body and potential ways to manage my newfound pain. (All for the low price of $8,000 tuition, but who’s counting?) It also makes me happy to be able to help my husband with his Anatomy & Physiology homework while he works on his kinesiology degree. I feel smart and stuff.

Also, about 3 years ago, I got some “abnormal” pap results. Sorry, guys, I’m going to be talking about girly bits now. Avert your eyes and skip down a couple of paragraphs if you’re not up to it.  My mom and I both got some abnormal results around the same time. Remember how I mentioned we’re close? We’re so close, we share multiple illnesses, apparently. So, we get these results back that say we’re abnormal (duh,) and I’m thinking, out of the two of us, I’m the one who’ll get cancer. I don’t know why, I just thought I’d be the one. I was wrong, though. My mom went through treatment for cervical cancer (AKA “hell,”) and since I’m the only child and the only family member around, I’ve been there for every bit of it. Even though we share issues, my poor mom has alot of health problems I can’t even imagine dealing with. The list starts with Lupus, an autoimmune disease, and goes from there, since so much of her illness is secondary to that, like Fibro and Type 2 Diabetes. Mix in the cancer treatment and you’ve got a cocktail for polyneuropathy (she has very little feeling from her hips down,) anxiety, depression, and PTSD. She’s had some abnormal tests since her treatment ended, but for right now, the cancer is technically gone. She’s pretty much my hero. When I was young, she used to say she felt guilty for passing epilepsy on to me, but I told her that if she hadn’t experienced it herself, that she wouldn’t have been able to handle it with such grace and fight for me through the whole thing. I tell her the same thing when we talk about Fibro.

I just had my regular biannual checkup for the precancerous cells inhabiting my cervix, and there still doesn’t seem to be a change. I had (another) biopsy done, and, let me tell you, I’m not a mom yet, but hats off to all the women whose cervixes (is that the plural of cervix?) have been in pain. Of course, I know the Fibro has alot to do with the way my body responds to the pain, but OW. I can only imagine childbirth is a doozy. This time, at least the doctor thinks he was able to remove the part of my cervix with the stubborn precancerous cells. It’s unusual for dysplasia to stick around so long without going away or progressing, so I’ll be very, very happy if it’s gone. I’ll have a little going away party and do the Snoopy dance if it’s gone.

Lately, over the past year, my anxiety level has skyrocketed. It’s dealing with chronic illness, the before/during/after of Mom’s treatment, being a wife, making a major life change and moving into an on-campus mission at a local college, the death of my aunt last summer … it’s all kinds of things. So, I finally asked for help. My new primary care doctor heard part of my story and noticed my anxiety, and recognized right away that I needed to see someone in what they call “behavioral health.” I guess “mental health” sounds too mental. So, hopefully I won’t feel quite as crazy in the next couple of months, because, believe me, I’ve been a mess. I’m just skilled at hiding it.

So, that’s about it. I’m starting out telling you all of this as a total mess. That way, we can really only go up from here. It’s like a first date; if you make a fool out of yourself, and you’re lucky enough to get a second date, things can only get better. I hope I get a second date. I mean, I’m married. I just hope you read my blog again. Next time, I’ll tell you about the good stuff that’s happening in my life. Promise.

Gentle hugs,



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