IC Journey

I’m a new old-hand at this…

Posted in Uncategorized by LJ Johnson on April 13, 2010

I used to have a blog ages ago on another network, but haven’t really touched it in four or five years now. Blogging seems to have come a long ways since then. Another caveat – I’ve been too lazy to learn much HTML. Not sure why. It just hasn’t caught my interest.

The muse is whispering. Sometimes I close my eyes and listen to the whispers, these voices in the dark that are not my own. Only if you’ve lived through a draft or two of a novel can you understand what I mean without worrying about whether or not to break out the anti-psychotics. I read once years ago that Nathaniel Hawthorne said the voices of the Scarlet Letter would not let him ALONE until he finished. I have yet to have any that are that insistent. I can only wish, I guess?

I have IC friends in my named life, people who have connected with me on Facebook. If you happened upon this blog with Google, set up an account on Facebook and look for IC groups. It won’t take long until other IC patients will connect with you, and one of the BEST parts of facing IC with “buddies” is all the things that “aren’t normal” suddenly are. When there is someone who is dealing with the same things alongside of you, the changes in your life seem neither so traumatic nor other-worldly. It just is, and you move on. I don’t think I would have gotten this far without mine.

I’m nameless here because I want some place where I can be brutally honest and not worry that it will haunt me. I know that that, in and of itself, assures you of my regular dishonesty. Sadly, most civilized people have a life that is papered in white-lies. How are you today? Do any of us ever ask that question with the open expectation of the real answer?

Sometimes I amuse myself by imagining one day writing a screenplay about life with IC. I would open it with a woman doing an at-home instill (somewhat discreetly), but making it obvious that she sterilizes her own cup (cheaper than a dollar an instill to buy pre-sterilized), measures and mixes her own liquid medications, then self-caths and instills that mixture directly into her bladder. Why? Because it would immediately make obvious the very drastic difference between her life and “normal.” Something that no one would ever THINK of doing you end up begging a urologist to LET you do, so you can afford to do it more often, as you seek to numb the screaming nerve endings in an organ you never really mentioned or thought much about before diagnosis.

As much as those of us who have interstitial cystitis work to raise awareness of this disease, which actually has a similar epidemiology to Type I Diabetes, it is easy to see why it ISN’T well-known. We don’t DISCUSS stuff that happens in the bathroom. Heck – how many years have some of you watched television? In that time, how often have you seen a television character use the bathroom (okay, except House, let’s not go there)? Bathroom behavior is taboo and not discussed. When you suddenly have a disease that puts you there at least a quarter of every day, the LAST thing you’re going to do is shout it from the roof tops (for one, once you got up there you’d have to go to the bathroom again, anyhow).

I don’t know. There’s just this hope that maybe if I could find a way to portray our lives, the brief moments that we hold on to normal for dear life before it gets interrupted again, and how hard we work and struggle to make the time for well, cooking, spending time with our families; the internal debate with every medication we add, especially for pain management; or the struggle to maintain intimacy with our spouses when the very act can sometimes increase our symptoms for days afterward. I would love to one day find a way to make what we live real without making it tragic. There is nothing tragic about it, because in the end…

… we are more than IC.


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