Wednesday, February 28, 2018

Trapped in the Vestibule

Lying here in bed, my eyes started doing that flicker thing they do when I'm forcing them to read but it's time to sleep. So I closed my Kindle and rolled over. But my heart is beating much faster than normal, maybe twice as fast, and I wondered if it's one of my medications or just what I ate for dinner. And then I realized that all my thoughts of suicide come out of thoughts of confinement to this pain.

During my time in college, three people who attended my school killed themselves. That is a lot, but it's especially a lot on a campus of 1,200. It was awful, and it shook everyone up. I was in the throes of my own depression, and I remember many times thinking, "At least I've never been suicidal."

I don't remember when the thoughts started, so I can't say for sure they were at bay until the pain came around. I think maybe my depression ramped up over time not in degree but in despair -- the more it seemed it would never go away, the more killing myself seemed reasonable. So I probably had suicidal thoughts before my pelvic pain started.

But eleven years into pelvic pain, I'm pretty sure if I didn't have the pain, I'd have a solid handle on the depression and anxiety by now. There are so many ways that I've grown in this time and so many things I've learned that would've made my early years easier. If I were only dealing with the one illness, it wouldn't rule my world.

All of my meltdowns have had to do with the pain. The summer I left grad school -- I left because of the stress of the pain. Americorps -- left for the same reason. 2014's agoraphobia came after months of failed treatments. 2016's outpatient therapy came after months of fantasizing about walking off a cliff.

And these thoughts that come into my head, thoughts I won't even write down -- I wonder how many of them follow thoughts about the pain.

I'm thinking most do. Almost all.

It's a maddening life. And then I feel guilty for thinking it is so bad. There is so much worse.

Then I think, well, imagine being made to sit on a hot iron without an end in sight. That would be a pretty horrible life.

Or a bed of nails. Or an acid bath.

At least the pain shapeshifts?

Of course I feel trapped. Of course I think of dying. That is to be alive and in pain.

I have news, but sharing it so far into a mournful post -- well, so I am disorganized.

March 23rd I go in for a bladder distention under anesthesia. The doctor will fill my bladder with water and expand it, a procedure that can lessen the pain for a few months. He will also do trigger-point injections, nerve blocks from inside the vagina. And he'll take a biopsy if anything that looks problematic.

At my last appointment, I told him I'm not convinced I have interstitial cystitis. He said, does your pain increase as your bladder fills? I said yes. He said that's all that needs to exist to diagnose painful bladder syndrome. Interstitial cystitis is a debated condition in the field of urology, but we can at least be sure I have PBS, and that's all we need to know to move forward with treatments.

At that appointment, the doctor also explained that some people think IC/PBS is an allergy. I may have mentioned before that I noticed a benefit from taking Zyrtec during the season for seasonal allergies. I generally only have to take it for a couple weeks, and even then I muscle through a lot, so I never had a real experiment with Zyrtec confirming that it helps. I started myself on it daily and wouldn't you know, so long as I'm not flaring, it takes the edge off my pain. I've gotten an allergy test before with 100% negative results. All I know I'm allergic to besides the seasons is bee stings. But maybe it's time for another test. I think people can be allergic to sugar, and my bladder hates sugar...

So I will end this post now and try to sleep. Maybe my heart has slowed. Before bed, it would sometimes dip below 50 beats per minute. Right now it is at 80. Maybe it is something I ate and not one of my many medications, all of which I will try to forget about for the night.

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