Saturday, August 22, 2009

Starting the Steroids

Last Tuesday I started the steroid treatment prescribed by the dermatologist. I'm supposed to apply the steroids five days a week, weekends off, and take two (generic) Diflucan once a week to stave off a steroids-created yeast infection. Of course, I forgot Monday, and I couldn't decide which day of the week to take the Diflucan so I haven't taken any yet. LOL -- I was considering and considering and considering what the maximum-benefit day would be for the Diflucan and of course I never decided. I'm thinking Tuesday. But of course, any day would work! I'm not feeling yeasty yet, thank goodness.

FYI, the steroid is Triamcinolone 0.1%. I'm applying it throughout the inside of my vulva, clit to perineum, and trying to tuck it up in the vestibule (GOD! That thing is inaccessible!). I have pain in my clit in addition to the vestibule/urethra area, hence the large application zone. I don't have pain in between those two parts, and I don't in my labia.

I'm not supposed to drink much on the Diflucan but the doc never said how much was "much"...hahaha, no, August got too hot and then too cold/rainy/unaligned-with-my-schedule for me to continue my Ace of Base + hard cider afternoons on the balcony, so I probably won't be pushing the limit.

And as a reminder, all of this treatment is in response to the biopsy result -- Plasma Cell Vulvitis.

I really think the steroids might help, and I mostly think that because so far they don't *hurt*. I don't know if you v-girls are the same way, but I can apply NOTHING to my coochie without making it worse -- nothing except Vaseline. That it's not any worse is a good sign as far as I'm concerned. It at least means I'll be able to give the steroids a full try.

Of course, I am still going to puzzle away at what CAUSED the vulvodynia (plasma cell vulvitis, whatever) in the first place. I'm thinking of going to see an allergist to see if we can tease out anything there. As I might've mentioned before, plasma cells, according to Wikipedia, are white blood cells responsible for making antibodies, which are an immune reaction to SOMETHING...IF AT ALL POSSIBLE I'd like to know WHAT so I don't re-get vulvodynia if the steroids manage to get rid of it.

Also, many sources describe plasma cell vulvitis as very rare. Many say stuff like "there are 32 known cases in the world, ever." Which boggles my mind. I tend to assume that my vulvodynia is like any other vulvodynia -- whatever the symptoms and cause are, I'm going to be lumped in with the majority of the other girls. Is the low count due to lack of biopsies, or is it really that rare to have a gajillion plasma cells in your vulva if you have vulvodynia?

I guess I've read lots of sources that say biopsying vulvodynia usually doesn't yield anything abnormal. And I do feel lucky the biopsy returned something -- I feel like it's the biggest clue yet, and if those plasma cells are due to the same cause as my pain, figuring out what they're in reaction to might resolve the whole thing.

I feel like I can't write in a real language today. Sorry if this is unintelligible :)

Tuesday, August 18, 2009

Pain Meds

I would just like to know why, when I asked my gynecologist for pain meds at my annual last month, she told me no. Why? "Because they will really just mask the symptoms."

Uhm, EXACTLY.

And why does everyone else in the world with the teeniest tiniest transitoriest pain problem get Vicodin without even asking? Okay, so I know a broken arm isn't teeny tiny, but compared to interminable vulvodynia it kinda looks that way.

UGH. Seriously, this particular issue has been making me want to shoot myself in the head. I am so mad. The urologist also gave me the same kind of response when I told him how bad the pain became when I had to take antibiotics for a UTI---

"In retrospect, I don't know why I didn't go to the ER."

"But the ER can't do anything for it. They'll just give you pain meds."

EXACTLY, GENIUS. I was in so much pain that I COULDN'T STOP SOBBING. Maybe someone in that situation SHOULD get pain meds?

And maybe someone in my situation SHOULD have them?

This issue makes me feel like a piece of trash.

Wednesday, August 12, 2009

Offending People

I posted a link to my last blog post on Facebook. My mom (who is on Facebook) raised the concern that linking to such a post in such a forum might do more harm than good.

First let me say that while I've written about my mom on my blog -- things about not feeling supported -- I have an incredible mother. I've written some frustrated things because vulvodynia has been a learning experience for us all. I have an advantage because I'm on the inside of the empathy exchange and am seeing firsthand what different kinds of exchanges feel like to the one in need. My mom is a very empathetic person (and also a secret zenmaster) but she can't know what works for *me* nor can she know what this particular situation feels like in general. We've been fighting frequently the past few months and it's entirely because I'm so stressed out. So sorry, mom, for venting about you on my blog when in reality you continually amaze me and I wish everyone in the world knew you.

So mom could be right about my link doing more harm than good on Facebook, but I want to say why I did it and why I'd do it again.

First, that particular post has a very scary word at the top that I can't even type here without Blogger asking me if I want to flag my own blog. I admit that I should have at least linked to the post with the disclaimer "not safe for work." I forget that people surf the web at work because I can't do that as a waitress. "Not safe for work" is good practice, but come on people. It's Facebook and you're at work. (Nobody has complained yet, though, nor have I received complaints about past linkings.)

Second, about the word. C♥nt is like n♥gger. Some people (lots and lots for the latter) have repossessed it after its turn as derogation, and some people (Bill Cosby for the latter) still find it offensive. To me, c♥nt has never really been that offensive, but I find it empowering precisely because it scares so many people. C♥nt: yes, I have one. Deal with it.

As feminists like to say, we don't have any word referring to the male member that is nearly so offensive as c♥nt or tw♥t or even p♥ssy. If I type cock and dick, Blogger probably won't think anything of them -- both have different, totally unanatomical meanings, and both refer to an image that we somehow find more acceptable.

Which brings me to my third point: the double standard. Our society is so overrun with penis references that we don't even bat an eye about them anymore. This morning, the very mainstream radio show we listen to at work was talking about Viagra ice cream -- along with all the necessary jokes ("soft serve"). Beyonce is singing on the radio about how Jay-Z (I'm assuming?) has an "ego" that's "too big, it's too wide, it's too strong, it won't fit." Each year there are countless boy-centric movies obsessively focused on the plight of the main characters' packages. Austin Powers -- endless dong synonyms and we get "Alotta Fagina"?!?! THAT'S NOT EVEN FUNNY.

The entire society snorts at any reference to male genitalia (except that one, ew), but women are represented -- and taught to act like -- they don't have anything down there. Imagine a twentysomething actress saying casually in a mainstream movie, "My p♥ssy itches."

I'm trying to think of overt hooha references in movies but the only one that comes to mind is American Pie -- which I'm actually thrilled about as a fan of the word p♥ssy but very tired of as a fl♥tist.

On top of all those reasons for sharing the link, there is this one: NO ONE TALKS ABOUT VULVODYNIA. So I am going to talk about it. And you know what? My talking about it has *already* changed someone else's life.

Every time I've shared a link on Facebook, someone new has written to me (usually privately) to show support for my condition and/or appreciation for my blog. I've been linking to my blog for a long time on my college's private Facebook-like site and I've gotten incredible support and thank-yous from friends, acquaintances, and perfect strangers. And aside from the three hate comments I've gotten here on the blog, I have never had anyone write to me and tell me I've offended them. (For the record, two of the hate comments (by the same person on the same post) told me I was stupid to tax the medical system by going to the doctor.)

I hope I haven't offended anyone. If I have, I sincerely apologize. I also hope that anyone who might be offended understands that my blog is a voice for a condition and a way for that condition to gain awareness. I don't write it to offend. I'm not American Pie reincarnate.

One more thing. My mom worries that someone out there might be making fun of me because of what I've written on my blog. Here's the thing: OF COURSE SOMEONE HAS MADE FUN OF ME FOR WHAT I'VE WRITTEN ON MY BLOG. There are some very stupid people in this world, among whom are some of the people I'm friends with on Facebook. I remember what these guys said to me in middle-school gym class before they knew what they were saying. Some seem to have grown up, but some would probably say the exact same things today if they read my blog.

And if they do, let them. If they're still as scared of the p♥ssy as they were when they were 12, here's the same nod and smile I delivered 17 years ago.

Saturday, August 8, 2009

How to Rescue: A Lesson from My Hannah

After a while -- and several times over -- I got to the point where I just wanted to be rescued and I didn't understand why no one was coming along to save me. It wasn't a conscious request. My brain just said, wow, I'm done. Where's the rescue squad?

And I'd snap back and say, hey, we're fine. Or I'd say, hey, you know that doesn't happen. And I'd ask myself, what would rescuing look like anyway? You hate feeling dependent on others, so it certainly wouldn't be someone stepping in and taking care of you.

----and you have so many friends and relatives who have voiced support for you. Who have listened to you and done research for you. Is that not rescue? Why is that not enough? Why do you still feel the need to be saved?

And then my friend Hannah posted the picture above and I realized what "rescue" meant.

Knowing other people support you is extremely important -- don't get me wrong. But sympathetic words are fleeting when you're in a hole. They lack the physical interruption of another's presence, another's hug, and after a while you start feeling like a pity case and that just makes you even sadder. You spend time with people who know about your condition but if you live alone you're nearly 100% of the time dealing with it solo. You feel like the center of everyone's anguish because that's all you talk about with them anymore, and you know you're more than your disease but you don't remember how.

Hannah posted the picture above and dedicated it to me "Because I love hers just as much as I loves mine. :)" You might remember Hannah's coochielove from the vulva she sent me for my birthday.

So, what is rescue?

Inspiration.

Because I am not a whiny-ass victim of vulvodynia. I have never been. YES it gets me down and it's exhausting and I try not to whine but then I do anyway. But fuck it, I am a rock star. If I can sit through the pain I've been through, I can do absolutely anything.

I hate that the social side of vulvodynia has turned into a cesspool of Esther pity. I never wanted that. I wanted support, yes -- to feel heard. Because for a long time I didn't feel heard. But then my tantrums to get heard resulted in this festering sob story that makes me think of myself as an object of pity. Ew.

Hannah rescues me by calling me up from my algae existence into the realm of celebration and laughter. She's dealt with her own shit in life and still, fifteen years later, she's as shiny-eyed as I've ever known her to be. She may not always feel like it, but no matter what she keeps her spirit with her -- and shares it with those around her. And I don't know whether she sees it in herself, but she's one of the most unstoppably upbeat people I know and one of the most sincere.

I tried to rescue myself the way Hannah rescues me -- with my Mariah, my Ace of Base, with my coochie jokes, with my fantasies of a vulvodynia movie (a COMEDY OF COURSE) -- but it's different when someone injects that kind of energy into your life. That's fuel. That's something new to burn.

It helps that Hannah and I have known each other so long, concocted (heh heh) so many inside jokes between us and with our other friends, and gone through so much together. It also helps that she's the most unabashedly sexual person I know. Like, c♥nt is a form of worship. (Hells yeah!)

I think, in the end, the "rescuing" I needed was to be reminded of what is real. Vulvodynia is a fact, but reality is whatever I decide it to be. I can't, as some assholes have suggested, decide not to be in pain any longer (the word "psychosomatic" is a weapon), but my story is only unhappy if I make it so. And my story is not an unhappy one. Vulvodynia has made me a much better person than I ever would have been without it. I've experienced a greater range of existence than I ever needed to and I'm waaayyy smarter now because of it. Living with pain and mystery has made me even more of a badass than I was before.

So there. Fuck you Universe. I love you but I love me more. I'm not sure how that follows, but it felt really good to say.

I ♥ MY HANNAH.

Thursday, August 6, 2009

Vulvodynia on 20/20

If you haven't heard, vulvodynia will be on 20/20 tomorrow night (Friday 8/7, 10 p.m. ET). Here's the link (via my friend Jim), and here's a quote from the blurb:
But all the women said what's almost harder than the physical pain is the emotional toll of suffering from such a mysterious condition without a clear diagnosis.
Almost harder? Please. Pain is child's play compared to the mystery! The mystery involves my higher thinking! I've got the lower stuff down, mostly!

Monday, August 3, 2009

Biopsy Results

Yes, there were results! Singular. The biopsy of my vulva returned the result of "plasma cell vulvitis." I asked the resident if that's more of a descriptive term or if it's an actual condition, and she said it's kind of both. They don't know what causes it and they don't have a sure-fire way to treat it but it's definitely an entity in and of itself...hey...sounds familiar!

The way I see it, "plasma cell vulvitis" means my skin itself is showing symptoms of the overall pain entity living in my coochie. The doc says they usually treat it with topical steroids, so I guess those are next in the round of things to do.

But I'm also going to try to get tested for antibodies to H. pylori. I mentioned this article a few weeks ago, about a study relating peptic symptoms (stomach ulcers), a positive test for H. pylori antibodies (H. pylori is the bacterium associated with ulcers), and localized vulvodynia. And what luck, I do have symptoms of an ulcer! Mild symptoms that I could control with diet change and wouldn't worry about...except for this vulvodynia thing...(and not being able to drink wine since late last year...!).

My friend Emily suggested I write to the author of the paper asking for advice on how to get a doctor to care about his findings (worded nicer). He suggested (he replied!!!!!!!) I go to a gastroenterologist and focus on the stomach symptoms without mentioning the vulvodynia. So I got a referral today from the student health center, but not without some twisting and turning -- the guy was like, "take antacids." Ugh. WHY do you make me stretch the truth??!??! Just give me the referral!

I got an appointment with a gastroenterologist on August 21, but I'm going to see if I can persuade my gynecologist to order the antibodies test before then. It's cheaper on the overall system, cheaper and probably quicker for me, and much more straightforward. My gynie is open to thinking outside of the box and might be okay with doing the test. She might also see "plasma cell vulvitis" as an indication of a possible infection, which some parts of the internet speculate it may be.

So even though the biopsy didn't really tell us anything we didn't already know ("your vulva is irritated"), I am so glad that a test finally returned NOT normal!!!!!!! That just makes me feel like my problems are DETECTABLE by the external universe! I'm not a crazy lady!!!! YES!