Friday, January 2, 2015

Authoring with Chronic Illness: The "Something's %$#@! Wrong" Stage

I've been sick for years.

Beyond the common cold and normal everyday illnesses that affect everyone, I've been ill. As far back as I can remember, which is a long time, there has always been something wrong. And the problems have always centered around my gastrointestinal system. I see the bounty of commercials so prevalent lately , advertising this pro-biotic or that supplement to regulate your system and cure your GI problems, and I get angry. Because it's not true--for many of us, nothing helps. No amount of pro-biotic or "healthy gut" juice is going to make me healthy.


I'm finding that out the hard way.

See, even though I've been sick a long time, with symptoms that have progressed over the years to the point I'm at right now--typing this from my bed, a place I've rarely left in 2 weeks--I've been stubborn to do anything about it. Because I've tried many times over the years, I've tried. And I've gotten no where... at least, no where that's given me any definitive answers. What it did give me was a hell of a lot of shame and doubt and embarrassment, and now, days upon days of devastating symptoms.


Why should you care about any of this? Really, I don't expect the majority of people to care. But there might be those few who read this with interest because they're living it, too. And if they are authors like me, they might find themselves staring into space, fighting a bevy of symptoms and wondering how they are going to meet their next deadline, or find the energy to interact with their fans today.

Mostly, I'm writing this for me because that's what I do: I write. While this post, and those that follow, won't be poetic or carefully plotted and worded like my books are, I don't mind. There is nothing cohesive or poetic about chronic illness anyway. This disease rambles and attacks with spurts of viciousness that lends me to feel that when I write about it, I can be as random as I like. What does it matter? The disease doesn't care how it looks on me, as long as it's heard. And trust me, I hear it loud and clear.

Inflammatory bowel disease.

Doesn't that sound pretty? Like something you can't wait to talk to your best friend about, or bring up as dinner conversation? Everyone wants to know all about your inflamed bowel, trust me. And they can't wait to hear about how it disrupts your life because you are chained to the closest restroom for hours, if not days, at a time.

Listing your symptoms is especially fun as a conversation starter at parties: Joint pain, severe abdominal pain, life-altering fatigue, anemia, not to mention the reason you can't leave the bathroom in the first place. Follow that up with constant nausea, hunger with the inability to eat anything, and if you're really feeling brave, bring out your "potty diary" and pass it around.

 johnny depp animated GIF

Once you've snagged their attention, be sure to play on their curiosity by telling them HOW MANY TIMES you had to see a doctor before you were given a smidgen of helpful diagnosis or advice. Maybe yours was like mine:

As a teen, I suffered chronic abdominal pain and GI issues. Doctor said to take me off wheat and put me on birth control. Um... okay.

In my early 20's, I brought up my constant need to use the restroom, along with scary blood in places there shouldn't be blood and never-ending abdominal pain. He told me I probably had pelvic inflammatory disease and accused me of cheating on my military spouse while said spouse was on deployment. Uh... wow. Right, because PID causes you to have blood in your poo, right? And every 20 year old woman is incapable of NOT sleeping around and getting PID?? Ugh.

No. Down with that idiot.

annoyed animated GIF

While pregnant with my second child, the abdominal pain and constant need to use the restroom (right the hell now. RIGHT NOW!) was completely life-altering. I got a head pat and reminded that I was pregnant, silly woman. Of course everything is out of whack. Geesh. Not helpful, considering the symptoms remained for months afterward. It was hormonal... you'll be fine. Drink lots of water and exercise.

tyrion disapproves

Third child: The same.

After birth of third child, the exhaustion was all-consuming. A few months later, joint pain developed, along with a recurrence of chronic abdominal pain and days in which I couldn't leave the house because I couldn't risk being away from a restroom. Diagnosis? Another head pat and the told I likely had fibromyalgia. Drink lots of water. Get out of the house. You're probably depressed. Oh, and by the way, you're too young to go on disability, so if that's what you're looking for, please don't ask me to fill out paperwork for you. ??? What the actual hell? Work NEVER came up during that conversation, but I did ask for a gastroenterologist consult which was DENIED. I went out to the parking lot, all three kids in tow, and cried in my car after that appointment. Cried. So hard I had to wait to drive home.

Follow-up appointment with my primary MD resulted in much the same: You're a stressed young mother with three kids and two jobs. You're not getting enough sleep. Take Imodium when you need it. By the way, you're anemic so take a multi-vitamin. Colonoscopy? No, there's no need for that. Exercise more. Even though I was taking up to 8 Imodium per day with NO RELIEF.

leonardo decaprio as a bulldog in wolf of wall street

Exercise more when there are days I can't wait to put my kids on the bus so I can go back to bed and SLEEP THE ENTIRE DAY? That's when the joint pain lets me get comfortable, and when I don't have to go to the bathroom every hour or less.

At this point, I'm like, please, someone. Just get on the same page as me, M'kay??


Five months ago, I went in again and was told I was anemic. Take a multi-vitamin. Get some rest. Exercise the fuck more. See me in three months. Instead, I saw a surgeon who is also a family friend. For all that is good in the Universe, he listened. 30 years later, and he was THE FIRST DOCTOR WHO LISTENED. He recommended a colonoscopy. Yes! Said I had all the indicators of Inflammatory bowel disease, likely Crohn's disease based on the location of my chronic abdominal pain and other GI symptoms, including my recurring anemia, off and on weight loss. But first, I had to see a primary care doctor.

Ha. Hahaha, hahahahah, yes! Finally.

I don't have a positive diagnosis, YET. Either way, he's assured me the symptoms are beyond irritable bowel syndrome, so they are calling it pseudo-Crohn's until we know more. It's been a few months and I'm finally ready to find out for sure. I won't lie. I had to work myself up to this. It's embarrassing to talk about. It's frustrating to know there are tons of tests and lots of money staring me in the face until I have more answers.

But it's time.

My family doesn't understand--all they know is that I'm feeling poorly all the time. After 21 years, my husband is apathetic to hearing me say that I don't feel good, and I don't blame him. My children don't understand because I don't understand. All I know is that mommy doesn't feel good enough to go outside and play.

Mommy is lying in bed trying to write and meet her next book deadline. Mommy has been in the bathroom 18 times in 6 hours, and hasn't eaten more than a couple bites in 2 weeks. Mommy is exhausted and in pain and missed 6 days of work last month because of her symptoms. Mommy wishes she was someone else. Someone healthy, or perhaps better, someone with a true diagnosis so she can start getting better.

2 weeks until testing, and then, hopefully the acceptance phase can start.