the ache of a chronic condtion

years ago when my mental illness was raring and i couldn't grasp any hold i thought physical pain would fare better than mental/emotional. i had no idea how wrong i would be.

i've recently been diagnosed with interstitial cystitis. which is basically a big name for experiencing the symptoms of a chronic UTI minus the infection. to be diagnosed with this disease you simply exclude all other possibilities. it is a guessing game until you figure you've come to the right conclusion. women's pelvic/urinary issues are often dismissed and managed with mediocre attention. i've been told my issue is 'in my head' 'it will pass over' 'i will just have to deal'

my bladder is sensitive. what that means to the regular reader is that the lining of my bladder which is supposed to protect from all irritants is broken down and anything i consume (be it foods, vitamins, medications, even water) can irritate and send my bladder and pelvic area into inflammation. i can range from functioning to bed ridden within hours. i can go 13-20 times a day to urinate or 5-8. i can have sudden bouts of urinary urgency or be able to hold back just fine for a couple of hours. i can have severe pelvic pain or light twinges of aches.

i can't eat anything acidic. preservatives and many additives in food bother me greatly. even water has to generally be more alkalizing than your regular tap or bottled. everything has changed for me the last 9 months and i have tried to live in denial for a bit. at first it seemed alright and i continued to eat what i wanted when i wanted. though i would feel a bit of bladder pressure and frequency i thought it had nothing to do with my diet. i was wrong. my doctors told me nothing. i literally had one who simply said "oh wow, yeah, i'm sorry" and then shrugged and said she didn't know and wished me a good day. i've been to the emergency room. i've been to after hour clinics, and urogyno specialists. i've been in 1 clinic so much the MA and i have become good buds.

the last 2 months have caught up with me and diet now makes a huge dent in my everyday functioning. self gratifying (masturbation and general penetration also gives me slight symptom flares hours or a day later). if i stray and eat something that's problematic i will feel the effects. the slight stinging in my urethra. the random twitch of pelvic ache. the frequency in my urinary symptoms increases and the day becomes a monster.

just yesterday i went to an art exhibit at the SAM. while i had a lovely time i was also in a lot of discomfort. my urinary symptoms were acting up and i went to the bathroom 3 times in an hour and a half. and a part of that time i even held it in for longer than i wanted to because i was in line to see individual art rooms at the exhibit. it was highly isolating and made my experience not as great as it could have been had my bladder been calmer. i have been taking supplements, but everyone reacts differently to this disease and there is no one size fits all approach so i am leaning in with caution and very few expectations. i wish to keep this under control but i honestly don't know where i will be months from now, or even years. hell, i don't know where i'll be tomorrow.

eating has become mechanic. i simply do to survive. food no longer holds a great enthusiasm or wander for me. everything is bland. everything has the potential to hurt. even foods i thought where on the safe list sometimes act up. it seems i am currently going through a flare and no matter what i eat i am not faring well. i hope to ride this out soon. at work i seem to function just fine. outside? i am falling apart. and so we keep on.

Poetica for my own

In the weakest of
Moments sickness becomes an inspiration.
Illness, flaws dance surely
With harmonies inside my head.

Wicked stanzas of unintelligible intelligence.
Art becomes deadly for my kind.
It is vanity and an ego that can take one whole.

In the weakest of
Moments sickness becomes the monster
That lives for fame.
Out of misery I give birth to words,
Set flames on syllables and tongues.

Defected,
Ordinary.
Blemished.

Suddenly the newest craze.
The hippest of the trends.
To walk around abound in
Psychological mysteries.

I paint my life with gold. Flecked, and
Rusted.

I paint my life with Silver. Simple, and
Rusted.

Illness is the creation, my motivation.
And it carries no ordinary pain.

My process has no explanation.
And I wear it all quite nicely,
Airbrush quality.
Oh these lips, they speak with words
That impale one another.

I write so I can pretend to know better.
My illness and I are flawed, we are perfect, we spike
Through trees with pens.
Devour the naive.

Customer service was a bitch today.

+ I can lay in a corner for days and not be awake. In these 4 walls I am occupied. My body somehow molds out of shape and into whatever form the brain takes and sometimes I find myself to be a beautiful expensive chandelier, or a rotten couch with cigarette stains. It doesn't quite matter which one. Both are flawed, but have their place. I sip my tea and look as dainty as my mother wishes, but it never quite matches my interior - ragged, scarred, metal bits, and leftover lovers infiltrating scar tissue. It's okay though nobody has to know. That is until they get heavy with ambitions and all the oceans come crashing down.

+ Waves are slicing through my lungs. Right on schedule love. You have come down exactly when I felt you would. The sun is berating through my curtains, red thick - resembling blood clots, firing away at my retina. Too much, too bright, too risky. And I wish I could erase the sky only to leave it panicking. Black, distant, and comfortably in tune with me.