Monday, December 29, 2008

Yes, You Can Ask

I didn't express it to him at the time, but I was a bit taken aback when a close friend asked me if it'd be okay if he asked about my peach once in a while. Was I comfortable discussing it? Because I certainly didn't have to if I didn't want to.

I thought the fact that I have a blog about it whose posts I willingly share would be enough to indicate that I'm pretty damn comfortable talking about my crotch problems. But if this guy -- one of my best friends forever, someone with whom I've been sharing my most intimate thoughts for over a decade -- wasn't sure how to handle the subject, obviously it needs further clarification.

I can't speak for others with vulvodynia, but here's my position on it: yes, you can ask. Of course you can ask. Ask like it were a broken leg, or job loss, or a divorce. Yeah, some of these things take tender mentioning, but they're all trials that ease with others' support. Vulvodynia is no different.

Now, I have no interest in talking about my crotch every second of the day, or even every day or every week. It's boring and any gains I make happen so slowly that daily updates are pointless. But like any other human going through a rough time, I need to know that others support me. How can I know that if others never ask?

I fail to understand why people treat vulvodynia as separate from any other medical or personal condition. Are we all so shy that we can't discuss chronic coochie pain without blushing? Please. Pretend it's my back and then ask. I need to know that you care more than you need to tiptoe around the existence of my lady parts.

For the record, this friend of mine is one of the least shy people I know, so for him it was probably about not knowing my comfort level with it. And that's why I can't speak for others with this problem -- I know some women might be extremely embarrassed or uncomfortable about discussing their vulvodynia. Some women don't even mention it to doctors to get help for it.

But as far as I'm concerned, ask away. And ask others in your life who might be struggling with some tough-to-mention subject. We can only benefit from each other's support. We're here on this planet first and foremost for each other.

Addendum: Please also feel free to ask me questions about vulvodynia or any other topic I discuss on this blog. I've added an e-mail address to the About Me section so you can reach me. (My real e-mail contains my last name, so I made a new one to avoid being stalked and having my car spray painted with vajayjays...though that might be a favor; can't say I haven't considered it.)

(Please don't spray paint my car. I'd like artistic command over the project.)

Thursday, December 18, 2008

My Crotch is a DJ

A few weeks after my coochie ignited her eternal flame, I bought Mariah Carey's Greatest Hits. Two years later, I finally understand that the purchase was not random.

Those first few months, I'd sing "Can't Let Go" while waiting in bus-stop booths. I'd clean my apartment to "There's Got to Be a Way" -- because it makes me feel like I'm in a movie montage, and that's the only way to clean. I'd dance over and over to the ultimate achievement of Mariah Carey's career -- indeed, of the entire 90s decade -- "Always Be My Baby."

(For a fashion shock, check out the "There's Got to Be a Way" video.)

It's not like the purchase was so out of line with my tastes. I don't discriminate against good music, and I'd always passively appreciated Mariah. At one point in junior high I had an ice-skating routine going to "Hero." For real.

However, shortly after my pain set in, I had to own Mariah Carey. I had to have her on my hip so I could listen to her at any moment. I lived Mariah for several months in a row, dwelled inside the two CDs of her Greatest Hits and then a greatest hits I made of her Greatest Hits so I wouldn't have to change discs. I crunched across frosted grass in the wispy fog of "I Don't Wanna Cry," sped down the odd-angled rainbows of "Emotions," and bopped inside the Care Bear world of "Dreamlover."

(I scraped my neighbors' brains off the stairwell as a courtesy.)

Mariah turned out to be the ultimate form of escape. She's in love or out, or she's movie-montaging; that's all. In "Always Be My Baby," she's doing all three -- in love but out and, well, maybe rolling credits or something. Her world is crystallized emotions, paused moments, ecstasy or devastation in a single efficient melody, all while sporting the iconography of a coloring book.

That's why my crotch didn't throw on Celine, Whitney, Cher: Mariah's the one surrounded by butterflies. Mariah is an escapist, and she led me away.

Eventually I started to mix things up again, stray from straight Mariah. My crotch had me queueing up Carrie Underwood and Tom Petty with Otis Redding and Aretha Franklin, and it was the best playlist I had ever heard. I went through country, rock, and soul to bluegrass, operas, and requiems -- with a huge Britney detour -- and I've arrived recently at electronic sounds: Duran Duran, Depeche Mode, and Eurythmics/Annie Lennox.

But Mariah, you will always be the beginning and the end when it comes to my crotch. You are the distraction and the hope I need to keep moving on to that future Someday, that One Sweet Day when I will Make It Happen, whatever It is. Any Time I Need a Friend, I know you'll Be There. You tell me again and again that There's Got to Be a Way, and Mariah, I Still Believe you.

P.S. We'll have to agree to disagree on the Christmas wish-list thing.

Tuesday, December 9, 2008

The Pepperoni Pizza Hypothesis

I'm up again, unable to sleep. Sleep will come, but it's taking a little while these days. It's finals week, so that's my background stress, but the pain has been distracting me every night since Saturday.

I eventually talk myself around the pain and into sleep. I get cluster headaches; if I can talk myself into sleep as one of those tapers, I can do it with a moderate crotch flare.

Really, what gotten me about the pain the past few days is the worry -- is it still there? Do I have to pee? What if I fall asleep and I have to pee? Some people with interstitial cystitis pee fifty times a night. My heart goes out to them.

Last night, after going to the bathroom a couple times, I had to pee again, but I told myself I didn't and fell asleep. When I woke up, the pinching pain that I had fallen asleep with was gone, and I had a full bladder but no urgency.

Which brings me to my hypothesis: a good portion of my pain, at least, is referred from my intestines, as researchers concluded in what they call the Pepperoni Pizza Hypothesis, which I wrote about earlier. I don't know why or how, but I do know my gut's been messed up with IBS for at least a decade and that I had a major intestinal, uhm, episode shortly before my vulvodynia set in. My crotch is raging and I've been funny-tummied for days: coincidence?

I'm still being vegan, and I still want to try going raw for all the claims its subscribers make, but I think my next step might be to switch to a really, really intestinally friendly diet and see what happens. Another experiment on my body, only this time with a more definite theory.

Whether my hypothesis is correct or not, I have a motto: I will find answers. I write it down so I can see it, on my walls, in my notebooks, here. The answers may not be contained to a diet change, I realize that. But somehow, I'm going to suffer through this thing and come out the other side with useful information. I'm not spending all this time hurting just to magically recover and never look back. I'll get through it, I'll find answers, and then I'll shout them from the top of the world.

Monday, December 8, 2008

Raging Pain, Raging Rage

Okay, you know what? NO. THIS IS NOT HAPPENING. I have been in a flare the past two days because I ate some potato chips I suspected of being gluteny but remained unconvinced about. Or that's my theory; I don't really know for sure. All I have to say about that is, what kind of universe am I living in?!

The pain's been so bad that the past two nights I have been unable to fall asleep. I finally did get some sleep both nights after talking myself down into it, which I've gotten pretty good at over the years.

Last night I tried Lidocaine -- a topical numbing gel -- as well, but, as usual, it did nothing. Or, if anything, it made it burn more. This morning the pain was still crazy, and by the time I got to school I had been sobbing on and off about it for three hours. So in hopes of stemming my crying before meeting with my advisor, I went to the bathroom and rubbed some more Lidocaine on, thinking that miraculously it would make a difference this time.

But once again, it didn't do anything -- and this time, I can clearly tell that it's made the pain worse.

I would just like to say pubicly to the brilliant doctor who prescribed me the Lidocaine: genius. You were the biggest ripoff of my life. $500 for you to tell me things I had already learned over the course of my endless research. $500 for you to ignore my concerns about a possible other condition (interstitial cystitis) and lump all my symptoms under the umbrella of your speciality. $500 for you to treat me like a car in for a lube -- a tube of numbing gel that I told you made my pain worse. $500 for you to send me a survey about how my vulvodynia makes me FEEL, because don't we all know that's the kind of research that's going to lead to a cure.

I'm sure there are good doctors out there studying this condition. This guy is not one of them.

$500, insult to injury. Five hundred dollars! Hey, can I be a vulvodynia doc too? Wham bam thank you ma'am!

Okay, I just need someone to be mad at because my crotch is on fire and I have a final to take in forty minutes. And there's really nothing I can do about the pain at this point. Pain killers won't work. Ice would, but I don't know where to get any, and anyway I don't know how I'd sit on it during the final. At least I'm not worried about the test itself. I will do fine, if I manage to concentrate.

And then I will go home and do whatever the hell I can to transition out of this flare. Which might include mailing some hatorade to a certain doctor at the Cleveland Clinic. Bozo.

Update: There's nothing like a good old-fashioned computer-science test to soothe my mind. My mood has reversed. Now I'm going to make lentil soup, and when it's done I'm going to pour it all over my body and go to sleep.

P.S. I think I did a really good job not swearing above.

Thursday, December 4, 2008

Coming to Terms, and a Recipe

The past couple weeks or so have had me coming to terms with certain parts of this chronic pain mess. First, I'm pretty sure I would be diagnosed with interstitial cystitis, whether or not I actually have it: I pee frequently; it hurts every time; I have occasional urgency; my bladder hurts as it fills and it feels better after I go. Check, check, check, and check.

Plus, the kicker is that I started following the IC diet -- or I at least started avoiding the top triggers (fruit juice, tea, chocolate, alcohol, multivitamins...and my beloved peanut butter), and yeah, my symptoms got slightly better. For instance, if I drink a glass of red wine, I'll feel more urgency and movement-induced pain for a while afterward.

That's not vulvodynia as far as I know. That points more towards IC.

Of course, I still have the vulvodynia, I know that for SURE. And while I titled this post "Coming to Terms," I know that accepting that I benefit from the IC diet will only make me feel better. It's more that I'm coming to terms with not being able to eat peanut butter and drink orange juice.

Another thing I've come to terms with is that sitting around in jeans all day really is not good for my hooha. Big duh, right? Jeans don't immediately pain me, but when I wear them on my seven-hour school days, by the time I get to my evening class I can hardly stand to sit anymore. That crotch seam is in the perfect place to set me off.

So I switched to skirts -- yes, at the onset of winter. On the phone with the guy I'm kinda dating, I said I had worn a skirt that very cold day.

Date: What, do you have a screw loose?
Me: Yes.

Not a bad way to put it. I have a screw loose. Oh, that's going to be an interesting conversation, if we ever get that far.

But wearing skirts isn't so bad. I love my skirts. I have a ton of them and I hardly ever wear them. And wearing skirts means I'm free to acquire more skirts! More skirts! Maybe even from the thrift store!

And finally, the last coming to terms I've done is realize that though I may not remain vegan the rest of my life, this veganism experiment has changed the way I eat forever. Since I'm trying to get as many nutrients as I can without taking (possibly pain-inducing) multivitamins, I realized that eating grains wasn't going to help me much. They're basically pointless nutritionally relative to fruits and veggies. So I've gone without grains (no bread, pasta, rice, rice cakes), and it's been really, really easy, and really tasty. I eat like nine servings of fruits and veggies a day, plus some beans and seeds and nuts. It may not sound like much, but it fills me up, and I feel pretty good, too.

On that note, here's a recipe for the chili I made a couple days ago. It's not Promethean, but it's so very, very, very, very, very tasty (and spicy!).

Esther's Ugly Chili

olive oil
2 cloves garlic, chopped tinily
2 medium onions, chopped uglily
5 gigantic tomatoes, pureed
1 green pepper, chopped uglily
1 red pepper, chopped uglily
salt, pepper to taste
crushed red pepper to taste
white pepper to taste
cumin to taste (me = tons)
1 cubanelle pepper, chopped tinily
1 jalapeno pepper, chopped tinily
1 wrinkly orange hot pepper, chopped tinily
1 can kidney beans, drained
1 zucchini, chopped uglily
1 summer squash, chopped uglily

Cover the bottom of a large pot in olive oil and heat. Add garlic & onion and cook for a few minutes. I work from the top down, chopping as I go, and pausing to let it cook for a while after all the peppers are in and then again after the kidney beans are in. I work very slowly and then let it sit for a while once everything is in. The result is beauty (on the palate, anyway). Behold:

UGLY! But so mmm...

Hot peppers are another IC no-no, but I've actually felt incrementally better this week after all that Thanksgiving wine -- and the soy I shouldn't have eaten on Sunday. That was the worst flare I've had in a long time, all afternoon and into the night. I think I've finally proven to myself that avoiding soy isn't completely pointless voodoo! There might actually be a reason! Woo!