When I was a kid, I wanted to be a writer.
My problem then was that I didn’t have any life experience to draw from and write about.
Now my problem is that I have so much life experience that I never want to think about much less write about.
I started Rise Above Crohns on December 21, 2006. I had just gotten divorced after a 13 year marriage which was completely screwed up by many things — however, one biggie was my Crohn’s disease.
On our honeymoon (back when doctors were still telling me “I just had a bad case of nerves” and “I need to learn how to relax”) I was drinking about a bottle of Immodium per day just to barely survive.
Over the years, I spent several years bedridden, several weeks in the hospital, and got lots of practice going to the ER (which being divorced I now get to do all alone). The long-term consequences of an adult being bedridden for a long time are just plain stupid — the world is only set up for people to be bedridden for a long time and then die. (While all my friends were doing things like buying houses and having kids, I was bedridden and unable to concentrate enough to watch TV and understand what was going on.)
I’ve thrown up many times in the middle of upper GI series (which means I get to retake them and start drinking the contrast all over again) and I’ve had so many CT scans that you probably mistake the radiation for me having “a healthy glow”.
I’ve been swollen to twice my starting weight via IV prednisone and glucose in a matter of weeks. Which perpetually pisses me off at fitness folks who say platitudes like “It’ll take just as long for you to lose the weight as it took you to put it on.” IT TOOK ME THREE WEEKS of hospitalization without being allowed a single morsel of food to put on the weight.
I’ve avoided surgery by being so ill with such a bad infection that they didn’t think I would survive surgery.
I’ve had every possible type of mood swing and depression and mania from taking high doses of prednisone and even though I haven;t taken it in years I still deal with the osteoporosis issues and long-term pituitary damage.
I’ve overheard my ex-wife on the phone talking about my expected death and her plans for who she wants to have kids with after I’m gone. (That’s one of the reasons the “ex-” got added to her title.)
I’ve had all kinds of medical errors including a radiologist not noticing an obvious broken rib. (That’s how I found out about the osteoporosis.)
My life revolves around going to the hospital every 8 weeks for Remicade. And hoping that with my severely compromised immune system someone doesn’t give me the flu and kill me. (Or kill me with some other common thing. Apparently the immune sytem supression from Remicade makes one very susceptible to stuff like Tuberculosis.)
I can now look back on my life and notice how even long before I was diagnosed with Crohn’s, people would take advantages of my weaknesses from it and use them to try to control me.
I’ve discovered that I’m severely allergic to bananas. So why did my grandmother always try to force me to eat them? No wonder I’m such a picky eater. Who knows what foods bothered the Crohn’ when I was a little kid?
My life now goes in alternating forward and reverse cycles, I start making some headway and then have some medical setback that throws all progress out the window.
Typically I can make myself seem pretty normal and healthy for going out into the world for any 4 hours of the day. Sometimes I get lucky and can go a bit longer than that. Or I can find a way to disappear for an hour in the middle and recharge.
As a guy in his 40s who would like to date, marry, get a dog, have kids, etc., all the physical, emotional, and financial hardship brought on by the Crohn’s disease is very difficult to deal with. As can be seen by my sporadic writing here — I don’t even want to talk about this stuff to myself much less do it publicly. I certainly don’t want the Crohn’s disease to be ME.
I have done some things. I started LICCsupport.com to address the lack of support groups on Long Island. (The CCFA does have some groups, but they decided to disband their men’s support group which leaves half the population um… unsupported.)
Currently (as in while I type this) I’m having troubles with anemia. Which started as being tired all the time a few week ago, but has developed into blacking out a few times a day. Could be just poor nutrient absorption? Could be internal bleeding? Who knows? The blood work was from September, but my primary care doctor retired and my new doctor didn’t emphasize the bloodwork results until I went back and saw her again. Which doesn’t get into the cause — just that I ought to start supplementing iron and see what happens.
So that’s where this site sits after 8 years of not really writing anything for it.
I don’t want the Crohn’s disease to be my identity. Yet I do think that I have some good that I can contribute to myself and others here. I have some useful questions. I have some things that have worked for me. And I have all the things that haven’t worked or that I don’t know how to deal with.
Through all this, one thing I try to keep in mind is:
“Argue for your limitations, and sure enough they’re yours.” – Richard Bach
So… I’m a writer and I’ve got all this stuff to write about, and yet I don’t know what I want to say. 3 months ago (when the bloodwork showing I’m anemic was taken) I was still pretty ridiculously strong for a 48 year old guy (providing you caught me at a time of day that I was feeling good). Today I intended to go to the mall (because I like the colorful energy this time of year — I have no need to actually shop), but I was so exhausted that I wasn’t sure if I’d black out at the mall or if I’d have energy to drive myself home. Instead I’m lying in bed typing this.
I would like some new life experiences that I DO want to write about.