Tag Archives: Health

In response to negative press about ostomies…

Here I go playing devil’s advocate again…
Much Facebook drama has been stirred up over the Cincinnati police using pictures of colostomies as a “scare tactic” to try and set teens and young adults on the straight and narrow. I posted my reply in an earlier status and you can go back & read it if you like.
As a result of the “outrage” several organizations have launched positive awareness “campaigns” encouraging people to write to the Cincinatti police with their positive portrayal of an ostomy, and encouraging ostomates to post pictures of themselves, many with their pouches hanging out, to prove that they are still attractive and sexy.

Let me be the first to say that I am ALL FOR THIS! I’ve spent the greater part of my life since the age of 17 involved in organizations that support ostomates, and work to promote positive portrayal of ostomy surgery.

But what strikes me about all of this is WHY does it take something negative like this to prompt people to be “loud and proud” about their ostomy? Shouldn’t we all be positive, loud & proud every day? I’d venture to say that our every day actions and positivity, shown to our friends, family, and strangers alike would go a long way in negating the stigma that many associate with ostomy surgery. If we were just matter-of-fact about our medical challenge, sharing it openly and honestly in a positive light to those around us, perhaps the public at large wouldn’t have such a skewed perception of our reality. Unfortunately, far too many hide their ostomy, hide the reality of it’s life saving ability, and only bring it out when it’s in response to something negative like the recent events in Cincinnati. Why? Why not be proud EVERY day?

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I have a confession…

I’m vain. There, I said it. I show excessive concern for my appearance. And this excessive concern has gone straight to my head.  In particular my eyes.

My eyes look like Natalie Portman in Black Swan.

See the bloodshot resemblance? Um, ya.

I was recently diagnosed with what the doctors believe to be Sjogren’s Syndrome. That’s just a fancy way of saying that my immune system is in overdrive again (Sjogren’s is an autoimmune disease, like Crohn’s disease which I’ve had for 26 years), and it’s attacking the glands that make natural lubricants for my eyes (and other various body parts, but we wont go there).  Not enough tears = red, painful eyes. Nice, huh?

I can deal with the painful. I’ve had 14 major surgeries, intestinal blockages,  hernias and abdominal pain that rivals childbirth. A little burning in the eyes doesn’t phase me. However, looking like I have perpetual pink-eye does bother me. A lot.

See, as far as looks go – I’ve always felt like if I had anything going for me, it was a pretty face. I’ve always struggled with my weight, and coupled with having an ostomy, I knew my body was never going to be swimsuit model caliber.   And I was ok with that. Don’t like my thighs? No worries – I could cover them up.

But I can’t cover up my eyes. Sunglass-wearing indoors, especially in winter, makes  one look a little ridiculous. Every day I’m forced to go somewhere, even if it’s just to school to drop off and pick up Jaidin, where people see my blood-red eyes. I don’t know what they’re thinking – maybe that I’ve got a bad marijuana habit, maybe that I drink to much, maybe that I should get that nasty case of pink eye looked at – who knows. And it shouldn’t bother me what anyone thinks. I mean seriously, you’d think after living 20 years with a pouch full of poo on my side, I’d kind of be over the whole self-confidence thing. And I thought I was.

Until my eyes started looking like cyclops.

I’ve tried all the traditional treatments. Eye drops, eye gel, Restasis, steroids, you name it, and I’m going through Visine like it’s nobody’s business. Nothing’s working. I’m beyond frustrated. Once again my body has failed me.

So there you have it, my confession.  And as a mediocre DC Talk song once said – confession is the road to healing. So please, Lord, heal my eyes….