Friday, May 29, 2015

Pieces of My Insides

NO CURE. This is my life now. I look in the bowl and see pieces of my insides. But ask me how I am and I say I'm fine. When I have a flare, like now, my immune system is literally tearing up the inside of my colon. That’s what ulcerative colitis is.

The day I got scoped at the hospital back in September when I was finally diagnosed, one of my docs said to imagine sliding into home plate wearing shorts. Do you know how your leg would look like ground meat? He said that's what the inside of my colon looked like that day. And there's no freaking cure.

So last fall the switch was flipped and this is my life. For life. 'Cause there's no dang cure. It's a life sentence. I take about 8 (on this particular day) prescription meds plus vitamins, probiotics, Tums, etc. It could easily be more. Every 8 weeks I get a 3-hour IV of a magic med.

[Excuse me, bathroom break.]

And we just keep tinkering with meds to try to find the right combination that's going to keep my body from eating my body. I'm a chemistry experiment. There are people like me out there who eventually lose their colon in an effort to save their life. And there's no cure. No answers. People do die from this. So I guess I am lucky. At least for now.

And who knew that a colon-related disease could ‘cause severe fatigue to the point that I.just.can’t. So you stay in bed all day. And joint pains so bad that you feel like if you straighten your arms your elbows are going to crack. Both arms. Because these weird pains are often symmetrical. Fortunately, I haven’t had the joint pains in awhile. Autoimmune diseases are weird and come with all sorts of possible symptoms like this. Fortunately, my usual non-colon symptoms are just severe fatigue and migraines.

I try to be upbeat about it and try to educate the masses on these diseases. I think I’ve done pretty good so far. I really think tonight was my first real lonely pity party since my diagnosis about 8 months ago. C’mon, I can’t pretend to be happy all the time. And this was a pretty crappy week at work.

Oh, I didn’t mention that what can trigger a flare isn’t known for certain. One thing that many do agree on as a trigger is stress. Stress at work. Stress on your body. Stress on your mind. And so the stress can lead to a flare, and then a flare can get you down and cause stress, and did I mention stress is thought to be a trigger for flares?

Oh, and just one more thing. Meds I take to keep my immune system from attacking my body work by weakening my immune system. I had a cold I couldn’t shake for several weeks recently. To the point that I had to go for a chest X-ray to make sure it wasn’t pneumonia. It wasn’t. So I called it “not-pneumonia” and kept hacking up my lungs. Did I mention stress on the body can potentially trigger a flare? And that flare could lead to more meds that hinder your immune system which could lead to other illness which could lead to a flare which could lead to other illness…

Oh, and I may end up with arms of a junkie, because I have to have routine blood work to make sure my meds aren’t killing me. One of my meds can cause blood cancer. And the disease itself can lead to cancer. And like cancer, there’s no cure. And like cancer, people die from it. But it’s lesser known. Because there are fewer of us.

I’m done rambling. I feel better. This time, please no comments. No messages. No “get well soon” - did I mention this is my life and there’s no cure, so there’s no getting well soon? I shared my inner thoughts tonight for educational and awareness purposes. And because writing is good therapy.

These are just the a few of the rambling thoughts in my head tonight, I'll save the rest for another time. 

I'm running the Rock n Roll Half Marathon in Vegas this fall to raise funds for a cure for IBD (Inflammatory Bowel Diseases - Crohns & Ulcerative Colitis). If you'd like to make a contribution to help fund a cure, please go to The Crohns & Colitis Foundation of America (CCFA) is one of the top charities out there. 80% of funds raised go toward research, education, and patient support.