Tuesday, January 29, 2013

Vulva Power

A few years ago I checked out the book The Yoni by Rufus C. Camphausen from the library.  The librarian had to run upstairs to the archives to get it.  I already knew what the cover looked like, and if I were a blusher I probably wouldn't have requested the book at all.

(I figure librarians have a lot of practice keeping a poker face.)

Note that the subtitle is "Sacred Symbol of Female Creative Power."  So this book is about Vulva Power.

I've tried to think of my vulva as powerful, as a source of creativity for me despite the constant pain of vulvodynia.  I once decided that vulvodynia had succeeded the Loch Ness Monster as my power animal.

Then I saw an Animal Control truck.  Really.

A few stories in The Yoni involve a goddess flashing someone with her vulva in order to fix a problem.  For example, when Japanese sun goddess Amaterasu is sexually assaulted and runs away, goddess Ama-no-Uzume flashes her vulva at a crowd, and the crowd's laughter brings Amaterasu and the sun back to the sky.  Ama-no-Uzume's Vulva Power: Bringer of Light.

I've climbed trees naked.  I might have flashed people with my vulva while I did.  But these days, there is no way in hell I'm flashing my vulva at anyone, even if it would bring back the sun.

I told my psychiatrist this past week that I've been having dreams where I am trapped under waves that are rolling in and out, out and I can breathe, in and I have to hold my breath.  I am trapped by my neck and can barely lift my head off the sand.  He asked why my mind was focusing on being trapped by my neck.

"Because it's the scariest place to be trapped," I said.  "If your foot is caught, you might be able to get out."

"Could be," he said.  After a pause, he told me about an image the Native Americans had of a white man with an arrow through his neck.  The white men thought the arrow meant the Native Americans wanted to kill them.  "But for the Native Americans," he said, "the arrow meant that the white man's head wasn't connected to his body."

So maybe these dreams of being trapped by my neck mean I'm disconnected from my body.  And maybe that's also why my vulva power is not Bringer of Light.  Because I don't even want to remember that that thing is down there, let alone affirm its existence to a laughing crowd.

At the same time, living with chronic pain, I am too involved with my body.  I listen to every little thing my body says to me, and you know what?  Sometimes what I've heard is literally just a fart.  But it must mean something! Tell me all the quantities and qualities of the fart and I will tell you what's wrong with your vulva.

My gut, however, does have a suggestion: I can fuse my head and my body by drowning them in each other and making them rely on one another to survive.  The head pushes the body to keep going when the body wants to sit.  The body gets done what the head can't do alone.  That is the reciprocity that the arrow and the bind have severed.

What is my Vulva Power?  A friend pointed it out to me in an email recently.  Regarding my vulvodynia, she said that in all the things she's seen me try to do (and fail at, or so it feels to me) since we were classmates in college, I have always been persistent.

It's the one thing creativity requires.

= = =

This is my first time participating in yeah write's weekly challenge.  Click below (or here) to read others' posts and vote for your faves!!  If you want to vote for me, I'm under "Esther" -- click and you'll get back to this post.  I guess I should've put Mad Peach but I'm a newbie.  Voting starts Wednesday at 8pm (eastern, I think), or maybe Thursday.  Not clear on that; will update.

There's actually someone named "Peach" participating this week too!  "So many of us!  So many of us!" to quote Sylvia Plath about mushrooms, not peaches.

Monday, January 28, 2013

October 2006

My mystery coochie pain started in October 2006.  And I'm sitting here thinking, October 2006.  October 2006.  October 2006.

Because my appointment with the pudendal-neuralgia specialist is less than four weeks away.

I reserved a hotel room.  I'm going to go alone and freak out afterwards in my hotel room.  And sleep in my hotel bed and order room service.  I'm going to do it all alone because it's better than having to talk to someone else the whole way there, in the waiting room, after the appointment, the whole way back...  It's not like I would be able to be quiet even if the other person said we could.  And I want to be able to be quiet.

It's a spiritual thing.  People are nice to have around, but there's no way to face the universe in the raw unless you're alone.

Did you ever put a favorite piece of music on your headphones and the piece keeps crescendoing, crescendoing until it's so loud you feel like you have to turn it down but you don't, you let the violins slash apart your skin?  That's what facing this alone is like for me.

Here's that piece.  Except it's pink.


Monday, January 21, 2013

4 A.M.

My life is just totally off-kilter.  In the pictures I have in my mind of years going back, for all that this period of my life is quiet, its chart of activities best matches the stretch before I left college mid-semester my sophomore year.

There's no pattern.  My sleep schedule is all over the place.  Up later and later for days, finally lucky to catch even an hour of sleep but never wanting to sleep because there's so much to do, then 12 or 14 hours of sleep for days interspersed with hours technically awake but paralyzed in my bed with anxiety, unable to make the first decision about what to do when I get up.

And there is NOTHING in my life stressful enough to make me act this way.  So I don't know why it's happening.  My gut observation is that it's building on itself.  The little fungus that gets a foothold on the cheese.  Now it's here and it's breeding.  Ha ha ha!

It's been in the refrigerator way too long.

My crotch is roaring for no reason.  That, obviously, does not help.  It's a background despair, though, so it takes me a while to figure out that it's bugging me.

I think every time the pain rears up, which is like all the time, I feel defeated all over again.  So maybe every time it drops, which is like all the time, I feel like it's going away for good.

And I'm riding this coaster all the time without really noticing.

I am concerned, finally.  Tomorrow, which is today, I see my psychiatrist.  I have questions to ask him:
- What is a reasonable goal for stabilizing bipolar II?
- What medications could improve my stability when added to the mix?
- How does bipolar II pan out on average?  You'd think I'd've asked this at some point since the year 2000. But I haven't.  I've never said, look, doc.  What's the general prognosis among all patients.  Because I don't seem to be getting better.

I am not getting better.  I have good stretches, and then I go back.  All I want is
- Not to be unhappy most days
- Not to be paranoid or anxious most days
- To have consistent sleep needs
- To be able to keep up with errands and chores
- To have the energy to be social, and, beyond that, to pursue my hobbies.

And harshest of all, I am tormented, currently, by the thought that even if I find someone to love, I'll never be able to sustain having a family.  Admitting this to the few of you who read is like admitting that I'll be a horrible mother.  But I'm still writing because confessing my fear takes some of its power away.  I have a happy cat, I tell myself, whom I seem to have eternal patience for, my friend pointed out as I worried this at her.

It is the hardest, hardest part.  I am 32.  This is full-on ticking clock combined with continuous dissolution of confidence.

I wonder what I would be like now if I'd never gotten, developed, arrived at vulvodynia.  Six years down the drain.  Maybe I'd have a handle on the bipolar dysfunction by now.  Maybe it's this perturbing vulvodynia force that keeps me feeling like trash, feeling like I function like trash.

I want to run away.  I want to put my struggles outside my body.  I want to face something outside my body that is harder to face than the stuff inside.  My lovely friend hiked the Appalachian Trail this past summer.  I read his blog more jealous than I have ever been of anyone else in my entire life.  I think I could do it.  I think about my crotch for a split second.  Fuck that bitch; I am a rock star.  I could do it.  To be outside myself like that in some way, I feel like that's what I need to put my mind right, to set my eyes parallel to the horizon.

You take yourself with you wherever you go.  People think they advise it wisely.  But going somewhere else isn't necessarily an attempt to escape yourself.  Sometimes it's taking everything you are and offering it up to a different god, one of the east wind instead of the south.  He has different mandates and different mercies.  Throws different tantrums.  And maybe he is the god of what you need to pray for.

Thursday, January 17, 2013

I don't smell, I'm not ugly, or something like that

My body is the most important thing on the planet.  My apartment is the most important place on the planet.  The stuff in my apartment is the most important stuff on the planet.

I have been fighting vicious self-hatred for more than a year.  It spiked in fall 2011.  There was a girl at the restaurant I was working at who turned out to be a bully.  It was the first time in my life I'd ever felt bullied.  I know that is a lucky thing.

She yelled at me mid-shift for seating her too quickly.  I went out back and cried for an hour then returned to work with my eyes red.  Everyone thought I'd gone home.  I stayed because I loved that place.

She insinuated that I smelled.  I realized later that she was probably saying I had passed gas.  I was more objective in hindsight, saw the way she had waved the menus towards me.  But in the moment and for weeks afterwards I was obsessed with the idea that I had B.O.

I had people smell me.  My mom pressed her nose to my shoulder and said I smelled like I lived in a small apartment.  I took that to mean I smelled like dust and kitty litter.  She said no, of course not.

I dove into a bathroom with a fellow waitress and told her what the bully had done.  "I don't think you smell."  I asked three other people at work if I smelled, no no no.  One said no, "And my nose is good.  I told [name redacted] one day that I could smell her pad."  As a service; they are friends.

Then Catfish started obsessing over the kitty litter.  He'd come over and throw a window open.  I started changing the litter twice a week.  He still complained.  I told him he was being ridiculous.  He apologized.  But I was never convinced he was wrong.

I don't remember if this was before or after his TV was stolen.  I see that moment as the moment that we hit the skids.  What eventually did us in was my admitting we weren't going the same way in life.  But the burglary darkened everything.  I didn't like the way he handled it.  He got irrational.  He accused a guy who couldn't have been involved.  I worried what that would be like up through old age and death.

After Catfish and I broke up I became ugly instead of smelly.  I am obsessed with my acne scars.  I analyze them in the mirror.  I pick my face too much.  I have for a long time, since college.  It's been a decade now since my acne became a minor condition, but it's still around because I pick.

I watch my face for signs of aging.  Bully time, skidding-Catfish time, it was all about gray hairs.  I'd spot them, pull them down, and they were never gray.  Now it's wrinkles.  My eyes, there's hardly anything there.  I look at my parents' eyes.  Their eyes minus my eyes divided over the 27 years between us -- what I face.  I look at my smile lines and how they combine with my acne scars.  I turn my face, turn it back, look at myself in every new light.  It's not so bad.  Then it's bad.  Then it's a sexy quirk.  Then it's horrific.

Of course I am not eating right.  Did you know Skittles taste good?  I never cared for them.  Now I do.  When I eat my veggies, my skin glows.  I feel like a goddess of health and self-discipline.  But I don't have the fortitude now.  Chopping, cooking.  I can't even think of what to eat.

My apartment is constantly a mess.  I clean it up and it's a mess again.  It's a paradox.  I have so little stuff.  I have one closet and it's full of those things you hardly use but need to keep.  The rest, there's nowhere to put it.  So it's anywhere.  And then I come in, put the laundry down, and it stays right in front of the door.

I know I've got to rescue myself.  I've got to restore my self-image.  The only way I can is by taking care of myself like I am my cat, like I am the plants sitting in my window, like I am something I care for.

So my body is the most important thing on the planet.  My apartment is the most important place on the planet.  The stuff in my apartment is the most important stuff on the planet.

That I can write about this here in such detail means I am getting better.

Friday, January 11, 2013

The car-vulva spiritual entrapment issue deepens

I got my car back last week.  Guess what their solution was?  They replaced all the lines in the anti-lock brake system.

They replaced all the lines.  The lines.  The...nerves.

I am not creeped out.  Well, I am, because I think my car is haunted, and that might mean my body is too.  (You know, I haven't seen an exorcist yet, I just realized.)  But I'm not creeped out because after years of interpreting my life through the actions of my car and my toilet, I've decided that I was right at age 8 to believe that the universe is in conversation with us.  Our cars and our toilets, and maybe our stomachs, are characters in our lives, and they know more about us than we do.

Then I left my car's lights on all day and the battery died and I had to call my mom to come jump me, but neither of us had jumper cables, so my mom called her auto club and plotted with me about how we had to make it look like she was driving my car and asked me later if I had signed her name on the guy's paperwork, as if he was going to type my scribble into his database when he got home in his sedan with its Auto Rescue decal above the gas-tank door.  Not that I wasn't thinking the same thing.

And the car started and I thought, sometimes a cigar is just a cigar.

Or maybe the dead battery was the ghost in me calling me a dimwit.  For leaving the lights on all day.

Thursday, January 3, 2013

R's Story: Vestibulectomy, Clitodynia, and Small Successes (Guest Post)

Another guest post!  R's story includes a good helping of the words I would call "vulvodynia buzzwords" if vulvodynia had any buzz: she discusses pelvic-floor muscles, physical therapy, her two vestibulectomy surgeries, pudendal neuralgia, clitodynia, nerve blocks, lidocaine, tricyclic antidepressants, painkillers, estrogen cream, steroid cream, and loads of persistence -- a story that starts when she was 13 and continues today as she and her doctor move closer to the right treatment for her pain.  Thank you for sharing, R!!

Click here for all guest posts (4 total now -- woo woo!).  If you'd like to share your story, please email me at madpeachblog at gmaildotcom.  Email me also if you have questions for a guest!

R's Story

I've been dealing with severe vulvodynia/vestibulitis/pelvic floor muscle spasms/clitodynia for about 8 years now. I've always had trouble with tampons since I was 13 and sex has always been painful. It's always felt sore, like there are paper cuts all around the opening that lasts for days. Around the time I was 19, I started getting what felt like recurrent yeast infections. It was actually my vulvodynia getting worse; since I was so inflamed and irritated, the slightest amount of yeast in the culture at the GYN's would warrant a prescription for a strong anti-fungal.

I was also seeing my now-husband at the time, and he would drive up to visit every other weekend. Since we would have sex throughout the weekend and then be apart for two weeks, I thought that I was just sore from the weekend. By the time I felt less sore, he would come visit again and then I would be back to being in pain after sex. That year, I asked my GYN about it and talked about the paper-cut feeling. She prescribed an estrogen cream that's supposed to help with the hormone levels and make the tissue a little stronger. That didn't work. Next was a steroid cream, intended to do the same thing as the first cream. No luck with that either. Next was a low-dose tricyclic antidepressant - I get the concept, that the drug is supposed to calm the nerves down there, but I couldn't help but feeling crappy, that my vagina was "depressed". Coming back to the office after the creams and medicine didn't work, I had that terrible conversation with the doctor many of you are familiar with; when they say, I don't know what's going on with you.......I don't know what else to do for you.

Then my GYN sent me to a specialist, who is the best-of-the-best in this field in the northeast. He did a Q-tip test and I struggled to stay on the table I was in so much pain. He felt that I looked like a pretty typical case of vulvodyina, and wanted me to try physical therapy and a baclofen cream to help relax the muscles.
My physical therapist is amazing. I've seen her for over two years now, and she's still willing to try new things and has been there every step of the way. Although I felt like PT helped, it was hard at first to get used to using dilators on my own and practicing the techniques to help relax the muscles at home. I'd get so anxious about doing the exercises because I knew it was going to hurt that it made my pelvic floor tighten up and then I'd be in pain anyways. So then I went back to the GYN specialist and he wanted to try the vestibulectomy - essentially removing the tissue and nerves around the vestibule that were causing me so much pain.
A few months later I went through with the surgery, and after about five months of recovering, I was finally starting to feel better - not cured, but the pain was more manageable, at least not as bad as before the surgery. There was still significant pain at the areas where the incisions/stitches ended on either side of the vestibule, and I kept coming back to my specialist with it. He wanted to exhaust every other option before thinking about a secondary surgery, so we were back to tweaking the anti-depressants, trying different cushions to sit on, and continuing with physical therapy. Although the area where the tissue was removed from the surgery was now pain-free, the two areas where the stitches ended were where the pain had migrated to. My doctor had explained that this might happen before I had the surgery, but at that point I figured I might as well go through with it, what do I have to lose. To this day, I'm still glad I had the surgery, because it did help with the pain in that area.

After trying everything else again, the doctor decided that I would need a second vestibulectomy to fix the scarring and newly painful area of each side of the vestibule. This surgery was slightly easier in the sense that I knew what to expect, but also harder because I knew what to expect. Now I knew what the recovery was like, and not knowing if this was going to be "the cure" ate away at me every day. The surgery went well, although the recovery was much longer this time, close to eight months.

As I continued to recover, I noticed that the pain was non-existent in the vestibule area, but one day I had a sudden onset of clitoral pain. It was horrible and embarrassing and awful all at the same time. Down there felt aroused but my mind wanted nothing to do with it. All. The. Time. I got an appointment with my primary GYN that day, and I felt like I had a kidney stone stuck in my urethra/clitoris. It's kind of hard to pinpoint pain down there. The nurse couldn't see anything and said I "looked fine" and sent me home with advice to put ice on it, drink lots of water, and take some advil. Which did nothing. I remembered what my doctor said about the pain "migrating". This is what my vulvodynia had now manifested in: clitorodynia due to a pudendal neuralgia diagnosis by my specialist. This was in the summer of 2011, and I've had the same clitoral pain consistently since then.

Since then, my pain management has consisted of topical lidocaine creams, valium suppositories (to keep the muscle spasms from coming back), various seat cushions for every possible place I sit in my car, at work, at home, etc., ice packs when I get home, and percoset. My specialist suggested that in order to break into the pain cycle, my muscle spasms would need to be addressed. He thought that if we could stop the spasms, it could possibly release the nerves being trapped, and then I would be able to get a break from the pain. In order to get relief from the spasms since I couldn't control them, he would need to do Botox injections to my pelvic floor muscles. I went through two rounds of the botox injections, and they helped for about three months, but then the botox wears off. Lately, I've tried CT-scan-guided nerve blocks which go in through your buttocks to try to keep the pudendal nerve from firing pain signals all the time. After two rounds, the only part that was successful was the anesthetic part of the injection, which wears off after 24 hours (the part of the injection that's supposed to stay in your body longer/effectively hinder the nerve is the cortico-steroid).
So, my doctor is going to do another round of the botox this week and a more localized nerve block to help with the clitoral pain. Hopefully this works, I'm getting tired of being on painkillers all the time, and this has all started to wear on my husband. Bless his heart, he's been amazing through all of this, and he even proposed to me when I was at my lowest, when the pain was the worst. I can't blame him, he's getting worn out from me feeling down about it all the time, needing ice packs, and to lie down when I get home from work. I'm trying my best, but I can't help but feel guilty when he gets home and I can't even eat dinner with him at the table. I know that most of the information on the internet is negative when it comes to vulvodynia, and I hope this doesn't sound like one more; I wasn't sure what I wanted to do with my story, how it would help others, or if it even would. I think it helps to put your story out there, to just talk about it, even anonymously, since this isn't as easy as complaining about neck or back pain for us - it's much harder. I don't know where I'll end up in my journey with this pain, hopefully it gets easier or more manageable, but I know I've learned a lot about myself and the family and friends I can count on along the way.

Good luck and positive vibes to all of you out there struggling with vulvodynia - I hope your journey gets easier someday too.