IC Journey

About Me

In March 2009 I was diagnosed with interstitial cystitis, an incurable and often very painful disease of the bladder.  Though it is life-changing, I don’t view it as a curse, but rather, something to endure and learn from.  Maybe one day I’ll go into spontaneous remission.  If I don’t, or until I do, I am grateful for friends and family who love me, for a primary care physician who is willing to do my pain management, and for every single day.  Each one is a new opportunity.

That being said, I wanted some place I could reflect on the good and the bad without family members getting upset, worrying about me whining, or wondering if I could just tough it out instead of resorting to pain management.  For that matter, a place to put my OWN worries about living day-to-day with narcotics, anti-seizure medication and tricyclic anti-depressants.

If you’re going to tell me you know of this marvelous cure where I just take all sodium out of my diet and never eat any processed foods again, or the one where I go completely vegan, or try the alkalizing diet, I tried many of those, some even before diagnosis while we struggled to find a diagnosis.  I am at a point where I don’t trust “alternatives” much farther than I can throw them.  It usually is someone trying to make a lot of selling false hope.  I understand the placebo effect.  It is why, when I had a contact reaction to Elmiron instills (and yes, I did NOT have the burning, itching and inflammation when I tried to do the instill with no Elmiron), I refused to ever try it internally.  It wasn’t worth making myself sick to assure the doctor that putting up with the side effects sounded like an awesome idea.

This is me.  My son says he has a crazy mother that loves him very much.  I tried to take umbrage at the crazy, and he assured me we are all crazy.  I probably told him that more than once over the years.  So, I’m crazy, I love animals, people…  I love life, even when it’s hard.  I hope that, even when I share the bad things, someone might be touched by my words.

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