Sunday, October 15, 2017


I had to go off Elmiron over the summer for other medical reasons.  I started it back up again several weeks ago and haven't seen the benefit like I did before.  Maybe it hasn't kicked in yet.

I'm in a relationship and on birth control.  Birth control has been linked to pelvic pain, but usually to its onset, not its worsening mid-condition.  Still, I don't trust it.

My pain isn't really worse -- it just hasn't gotten better with Elmiron like it did last spring.  I blame myself for not taking it regularly enough, and surely I was not taking it exactly as prescribed while I was working all kinds of hours during the Indians' baseball season.  But I doubt I've been taking it any more inexactly than in the spring.

Here's the thing.  I'm up in the predawn hours because I got up to go to the bathroom and peeing felt like being ripped in half.  Which is normal.  And I lay in bed waiting for the pain to subside, but I didn't doze off again like I usually would.  Instead my feelings got hurt.

Penelope Trunk wrote in a recent blog post, "When you are living a nightmare you can't process.  You are just surviving."  When I read that, I wondered if my life counts as a nightmare.  She was talking about childhood abuse.  This is not that.

But tonight I thought of how when my pain is distressing, my mind jumps to rigging my neck to something and kicking over the chair.  Then I thought, well, that's probably a thought habit.  That's not a nightmare.

I have a thought habit I prefer for its impossibility.  The earth falls away before my feet.  I can step off without waiting, without preparing.  Preferably I'd replace the other habit with this one, but they pop up in different circumstances.  When I'm sitting still waiting out pain, it's my neck.  When I'm moving around walking through pain, it's the cliff.

I haven't killed myself yet so I figure I probably won't.  But I couldn't hold judgment against anyone who did, and people do.

I think I'm too much of a coward to kill myself.  But when you cross from this space to the other one, fear is a different thing.

Last fall I crossed to that other space, and I stayed with my parents and attended therapy five days a week for two months.  I put myself in a safe space.  I'm still here.

Here at five in the morning, I see the reasons for living.  I am not in constant emotional torture.  People at my current job speak of me as a Pollyanna.  Maybe that is relative.  It's certainly learned.  I hope it's true and not compensatory.

I would just like some progress.  Some degree.  If urination could not feel destructive.  If I could forget about my pain for stretches of the day.

Why am I a miserable character?  This pain has hurt so many people in my life.  The thought of my grandmas worrying about me.  I will likely see the sunrise today.

Tuesday, May 23, 2017

Elmiron is working and I've become a crybaby

I'm back on Elmiron, the only med approved by the FDA to treat interstitial cystitis.  I'm one of the lucky people who sees an effect on my pain from Elmiron very early.  Within two weeks, my pain is lower.  Sometimes it takes people months to see a difference.

My pain often gets very low on Elmiron.  When I eat something bad, my pain shoots up, so I have greater incentive to eat well -- instead of feeling bad all the time, I now feel bad only after eating something that triggers my pain.

Which has made me into a crybaby.  When my pain goes up to what was before an ever-constant level 5 or more, I CAN'T BELIEVE HOW MUCH PAIN I'M IN!  How can anyone live this way????  This is ridiculous!!!  How am I supposed to move?  I need to stop.  This is an emergency.  I have to lie down.  I need ice.  I need painkillers.  Etc.

Which in turn gives me respect for the living I've done with this pain for more than ten years.  I got used to the pain being bad to the point where I didn't realize how bad it was.  It was bad!!!!  Wow!!!!!!!!!!!!!!!!!

That's all.