Sunday, December 30, 2012

Comments are open

You can now comment anonymously on my blog.

I've heard from a couple people that they didn't leave comments here on the blog because there's no anonymous option.

I took the anonymous option away a while ago because someone left a couple of nasty notes on my posts.  Turns out that the nasty note-leaver was a college classmate.  I used the time he commented to deduce which link he had followed to get here and which visitor he had been, which gave me his IP address and his location.  Thanks, StatCounter.

(Don't worry: I am not otherwise stalking my readers.  I've hardly visited StatCounter since Blogger began tracking stats, which it only does in big picture, but that's okay because all I really care about is if I got 40 or 60 hits today.  Or 65?!)

The nasty commenter had visited my blog via a link to it on a social network open only to people associated with my college -- students, alums, professors, and staff.  That is a small pool of people, and his city was a suburb, so with a little searching, I figured out who he was.

He is kind of an asshole, so after I identified him and figured out that the posts weren't random, I felt a little less like the universe is a mean place to be.  But I decided to require a login for comments anyway -- I felt that the subject of pelvic pain is too serious for someone to be able to shoot by and crap on it.

Now I've decided to open comments again.  I've set it up so I have to review comments before they are posted, which will at least keep the nasty comments from becoming graffiti.

Most importantly, I don't want to keep you from commenting just because you don't want to use your identity or don't have the right account.  Several times, I've wanted to comment elsewhere and decided not to because it required me to use my name -- and more and more, link to my Facebook account!  Are you serious??

So you can now comment without logging in.  Happy commenting :) and thanks for stopping by.

Saturday, December 29, 2012


INTP: Leaving the scientific revolution for the last moment.

Today my life was uncluttered enough that I peed and saw how I wanted to curl up into a ball and die afterwards because of the pain.

Life is usually more distracting.  You pee and then you have something to do or think.  I guess I had things to do or think after this particular trip to the toilet, but I had nothing that needed to be done or thought.

I think I am out of touch with my emotions.  I am an INTP according to Myers-Briggs, which means I think, and I spend a lot of time thinking, and in my head I'm always thinking.  Extended analyses of my personality type always tell me that I have no idea what I'm feeling.  My usual response is, "I don't see how that's relevant."

So I found myself curled up in bed under the quilt, and the inside of my body looked like ash.  To an INTP, this means, "I've got to remember to take the kielbasa out of the oven."

I wrote the whole rest of this post in fragments and got to the last paragraph and wrote that, thereby yadda-yaddaing all the emotional stuff, mostly because I couldn't come up with any more jokes.  And I don't know that I can tell the difference between expressing this emotion now versus all the other stuff I've said on my blog that seemed easier.

If you dropped someone into my body and they went pee, they would go to the emergency room.  I don't understand how I do it and I don't like to think about it.

I feel like I need a thesaurus.  "Terrified" is a great word but it doesn't work when you already know that peeing hurts without further consequence.  I've read about post-traumatic stress resulting from chronic pain.  Maybe I am post-traumatically re-stressed, but that is just me making a joke again.

But so what?  Can't I feel terrified if I feel terrified?  Okay, I am terrified.

And it's exhausting.  Like, I pee multiple times a day!  But there's nothing I can do, and I don't even know why I'm terrified.  Is it just that the pain is so bad?  I check the kielbasa and the slavish under-animal that lives on my back keeps its eyes wide.

Without metaphor?  I won't let myself feel terrified.  That's a good thing?  Not when you are curled up in bed and the inside of your body looks like ash* and you're not doing anything but you don't know why.

But I will say this for INTP: our rational nature is how I can blog about my vulva in the first place.  It is illogical to be scared of sharing my story, and it is of more value to the world to share it than it is of value to me to keep my privacy.

*This is synesthesia, so it's technically not metaphor.  Says the ever-discerning INTP.

Friday, December 28, 2012


I am on Wellbutrin.  Everything I eat gives me heartburn.

The last antidepressant I took, Effexor, also gave me heartburn.  It hauled me out of a bad depression and drove me around until I found Catfish, but when I got there, he was baking me a cake and I was puking it up in his toilet.

Puking like this: eating his cake, feeling nauseous, getting up off the chair, walking to the bathroom, shutting the door, and gagging myself until I puked enough that I was pretty sure I wouldn't be nauseous anymore.

I think I might have kind of explained to him that it was the sugar in that way you explain something that sounds really dumb to your new boyfriend, but he kept feeding me cake, and chocolates, and ice cream.  It was his version of hunting.  And I kept eating his kills.

I went off Effexor and could eat anything again.  Then he and I fought, and I moved out and went back on Effexor so that last New Year's Eve, the eve of 2012, we walked home and got in bed too trashed to do anything, and a few minutes later I went to the toilet to puke so I could sleep.

That's the last I remember puking in that relationship.

That night, I shoved my tongue down his throat at midnight, which I think he liked, and then a little while later I recorded myself saying over and over to him after having taken a drag from a helium balloon, "I love you [Catfish Lastname] with all my heart."  I found the recording on my phone after we broke up.

I had been drunk enough in that moment to forget that I had recorded it.  But I do remember, or could later infer, that in all that repetition, I was trying to convince myself that he was my life mate, and I knew he wasn't.

I did that a lot.  For about eight months before I finally left him.  A period of my life I don't have words for yet.

This past month, I haven't been feeling it anymore.  You know -- little tugs of sadness, or sadness you trip into like a puddle, or regret, or missing.  It all tumbled away by itself.

I've also been eating a lot of crap.  And I've figured out how to deal with it.  I don't get nauseous on Wellbutrin, but I do get burpy.  So really what I need is to burp.  But I can't burp.  I'm a rat.  So I go to the toilet and I gag myself, and it overrides whatever keeps me from burping, and I burp in a giant way, and I've solved my problem.  No puking necessary.

So who wants to date me?

Wednesday, December 26, 2012

I have an appointment!

I have an appointment with Dr. Fred Howard at the University of Rochester!  My appointment is at the end of February, so I've got about two months to wait.  Which is actually earlier than I expected.  Yay!  (Especially after trying to finish their survey for two years.)

The first appointment will probably be just an hour long, so I'll drive 4 hours to Rochester, have the appointment, then drive back....I'm thinking of staying over and having a relaxing evening at a hotel.  Mmm, hotel bed.  If it snows, I can take the train!  Yay!!

If we move forward from there, I expect my next appointment will involve a trial nerve block to see if it helps my pain.  Rochester has a pamphlet describing it all (PDF).

I'm trying to remind myself that I can't assume this is the end of the road for my pelvic pain.  For one, I don't expect it ever to be cured at this point. But also, I don't know yet if a nerve block will help my pain.  If it does, I will do some kind of earth-thumping top-of-the-world dance regardless of how well it treats my pain.  Because if it helps, it means my pain is neurological.  And if it's neurological, it's not a mystery anymore.

Dear reader: don't despair that your pain might be around forever.  I remember the fear I felt when my vulvodynia started, specifically one night early on, before diagnosis, lying in bed thinking about vulvodynia and interstitial cystitis and how the two have no known cause or cure.  I was so afraid the pain would be around forever that I jumped out of my bed in a panic.  My body moved without me.  I don't know how I can reassure you if you're in such a panic.  But I can say that now, after six years, the thought of having pain for the rest of my life is not the same kind of scary.  And I am better at not thinking about it, which helps a lot.

Let me show you something that I hope will make you laugh.  It made me laugh/cry, which I think is better than not laughing at all.  It's part of the pelvic-pain questionnaire from Dr. Howard's office, this part asking about the words you might use to describe your pain and how serious you feel each type of pain is.

Throbbing shooting stabbing sharp cramping gnawing hot-burning aching heavy tender splitting tiring-exhausting sickening fearful punishing-cruel.....what words!!  It reminds me of Edgar Allan Poe's "The Pit and the Pendulum."

That X in the right margin is me marking the worst part of my pain on the previous page's diagram -- the URETHRA.  RIGHT HERE.

Here's a list of doctors who treat pudendal neuralgia, and a list of symptoms that might help you determine if it's worth it to get checked out for PN.

Thanks to a reader who has advised me on pudendal neuralgia!!

Saturday, December 22, 2012

White Christmas & writing a novel

December 2006, about two months after my vulvodynia started, I found myself trying not to tear up at "White Christmas" as I watched the orchestra rehearse for its holiday show.

I had been working for the orchestra for about 10 months at that point.  It hadn't been great.  Then my vulvodynia started.

One of my earliest panics about vulvodynia was that I felt like I couldn't sense things the same way anymore.  When I put on my headphones and shut my eyes, I didn't hear the music in the same way.  It's like my entire body had been a tuning fork, or a bell, or a guitar string, and vulvodynia was the finger stifling it.

It had been raining all fall, and I had come to associate rain with vulvodynia.  I had seen Guns N' Roses in concert just after Thanksgiving and screamed "November Rain" back at Axl as almost a plea to him, God Axl, or whatever god, to fix my pain.  By the time it started snowing, I thought, my vulvodynia would be gone.  It couldn't stick around that long.

Now, two weeks later, the weather too warm for snow, the orchestra, lit in blue, dipped into "White Christmas" and snowflakes twirled across the stage and onto the walls.  Perhaps for the first time, I noticed what a beautiful melody it is.  So I tried to listen.  And it was like I was listening through a wall.

It had come to seem impossible to do or feel anything with pure abandon.  But that hadn't always been true.

Since 2003, I had participated in National Novel Writing Month (NaNoWriMo), in which you try to write 50,000 words in November.  It doesn't matter how much it sucks.  Just write.  Because everyone says they're going to write a novel someday, but they don't.

November 5, 2006, about a month after my vulvodynia started and five days into NaNoWriMo, I finally put down the first words of my novel that year.

I was tired of holding my heart in.  First it was one temporary hand was all it took, a light touch every once in a while when it would pulse too big and press against my skin.  A light touch with spread fingers, hearing it thump, thump against the upper part of my palm, thump.  Two thumps, sometimes three, and it was back in retreat.

That novel became a vulvodynia narrative:

The necessity of holding it in didn’t grow by thump, now four thumps, now five, now sixteen – no, it was one day, I woke up, I sat up, my heart tilted forward and pulled at my neck skin, hard enough to make it feel sunburned, ready to snap like elastic.  I gasped and caught it with my palm and guided it back to its place, but to stand up, to move, to shower, I needed my hand there. ... Walk out the door, to work, to shop, to the newspaper, as if breathlessly in love with every sight (hand upon chest, gasping at beauty) (heart rattling under palm, no longer rigged).

I walked around every day with a hand to my chest, feeling my heart move in its soft, raisin way up against my layers of skin, nodding itself as I might bend to pick something up, the newspaper to read of crimes, or to pluck a leaf off my shoe. ... As I stretched and reached for things, as I answered the phone and threw scrap in the trash, I felt my heart topple softly, never eagerly but always pitched over square by one of my jostles, and then pitched back the other way by another.

And then, straight from my job at the orchestra:

My raisin heart, dried, sinuous, with many folds, thumping as it did, always a hair behind the metronome. A pit still shapely inside a hollowed fruit, rattling, sinews cut, pit rattling free but still inside the skin. I felt it thump, thump, its every thump, every, even at night, and my mind spoke alongside, thump, thump. It was a rhythm, thump, just a hair off the metronome, always behind, just a hair, so that I had to tap my foot to make sure it was off, and move my free hand through the four-four pattern to see just where the heart fell in its errant beat. My skin would itch to get it to land on the downbeat as it should. I would walk faster, I would breathe harder, I would worry, I would spook, I would hold my breath and jump and huff and puff. It remained always behind, and I knew its every beat, was that lagging rhythm’s captive, leaning forward into my walk as if advancing my body in time would bring the thump back in step, up to tempo, no longer almost jazzy in its lateness, but on time, a proper heart of strict, even rhythm.

When I look at these two events side by side -- starting a novel a month after my vulvodynia began, and tearing up at not being able to feel "White Christmas" in the same way I used to -- I realize that they are of two different outlooks on life.  In the concert hall, listening to the orchestra, I was a victim, and I had had something stolen from me.  Writing my novel, I was using the new world I was in to create something I never would have created otherwise.

I've been both people over and over since then.  I still feel robbed of my senses, and of everything else vulvodynia takes from you.  But I'm also trying to live in this new world.  It's still a world.

Wednesday, December 19, 2012

My car-vulva spiritual entrapment issue

I've posited before that the problems I have with my car and my toilet are metaphors for problems in my life.

Well, Hyundai is having problems figuring out what's going on with the brakes on my new-to-me-in-June car. So they've called in the Dr. House of Hyundai to take a look at it.

I would think by now that my car is a lemon.  So I have to remind myself of the backstory.  Here's the sequence of events with a lot of yadda-yaddaing.  See if you can spot all the metaphors:

1. I take the car to the dealer shortly after I buy it to get its little checkup. I tell them it's making a high-pitched cicada-like sound all the time except when the clutch is in.  They say the sound is typical for the model.

2. I return to the same dealer to get something replaced under warranty.  I ask them to take another listen to the cicada noise.  They tell me it's the clutch.  I wish I were living in a time of women fainting a lot.

3. I get the car back and notice that the odometer isn't changing.  But that makes sense because I'm driving down the expressway at 0mph.  I go back so they can plug the meters in.  On my way home, I notice that the radio isn't making any noise.  I drive around in silence.

4. I take the car back to the dealer because after a few weeks of driving the car, the clutch is squeaking whenever I push it in and out.  I ask them to plug the speakers back in too.  They call to say, essentially, they fucked up the first time and have to replace a bunch of other stuff on the clutch.  They tell me the stereo issue is a busted amplifier.  I can get a new one for $400.  I tell them no.

5. When I get the car back, they tell me the speakers came on all by themselves just before I arrived.  On my way home, I notice that the anti-lock brakes seem to be activating more easily than usual.  I think it's my imagination.  After a week or so, I admit that no, the anti-lock brakes shouldn't activate when I'm braking for a stoplight at 20mph.

6. I do nothing.  Then I take the car to another dealer.  They give me a loaner and keep mine for a week and a half before telling me they're calling in the Dr. House of Hyundai, who will be in on Wednesday, December 19, 2012 to take a look at my car.  (Today.)

7. I fill out a questionnaire to see Dr. Fred Howard in Rochester, NY, a pudendal-neuralgia specialist.  I MAIL THE QUESTIONNAIRE TODAY, WEDNESDAY, DECEMBER 19, 2012.

8. My toilet is fine.

I want to quip about the following: nerve entrapment and how it is maybe not like quantum entanglement but like it metaphorically which I could misuse to hypothesize that the soul of my car needs to be disentangled from the soul of my vulva so they both can get some peace plus a little about kismet, but I can't.  I wrote this last Friday and held off on posting it due to the Sandy Hook shooting.  I figure since Dr. House of Hyundai was supposed to evaluate my car today and I also sent off the questionnaire, I might as well put this post through and let my thoughts jell a little more before seeing if I want to write about Sandy Hook. ♥  All my love to the people of Newtown, and to everyone else in the world.