Friday, July 31, 2009


My friend Greg linked me to this....


I don't know, something about that comic weirds me out. I'm not a D&D gal though.

It's probably actually that the doctor is a guy. I get the feeling lots of guys think of what they do as "vaginomancy."

Whatever. Last night my friend and I were hanging out with some homeless guys (long story?) and you know, none of us chose our starting points. And I just felt like good god I can tell from this guy's eyeballs that his liver isn't functioning well and he just got out of the VA after a heart attack and he had some major personal traumas happen to him, served abroad for 8 years, sells roses to go get some french fries from the bar, gets shepherded away from us mid-sentence after a half-hour of conversation by some employee. We'd been talking to him off and on all night, bought the same rose five or six times over, gotten philosophical with him, and it was just stupid. And as you might've sensed from recent posts I'm less and less comfortable asking for things for myself when others are living in literal shit buckets. So who cares if my crotch won't give up and I'm not able to have sex and I'm standing on hot coals. It's just pain and I can't ask for more than I have.

"Who could have wished for more?" -- Stephen Hawking

Wednesday, July 29, 2009

Post-MRI, Other Follow-ups

Couldn't do the mri. Freaked out! Not expecting that. Ahhhh never want to be in that death tube again!!! More later...must affirm this life's three-dimensionality.

Hahaha, that was from my phone...I'm still in phobia-heightened land but I feel better. Mostly I feel like an idiot. I know sitting inside an EXTREMELY TINY TUBE for a while freaks out a lot of people, but see, I've done it before! I had an MRI on my head. And I remember panicking at the start of it but then settling down and enjoying the weird noises. The thing I didn't remember is that I probably stopped panicking when I realized my body was only going half into the tube -- my legs stayed out. And that way I felt I had a route of escape. This time, my pelvis being in the center of me and having to be in the center of the tube, I was basically in a coffin. I tried but I couldn't take it. I tried everything I knew to settle my brain down but then it'd wake up and say YOU NEED TO GET OUT OF THE FUCKING TUBE. And the noises were not fun this time. They were like a robotic version of Psycho.

I have panic problems with a lot of things, but over the years I've talked myself out of them. Elevators, the backseat of a two-door car, the inside of a restaurant booth (I know), extremely crowded hallways (like you never see in Cleveland -- but in Chicago, leaving a concert, for instance) have all made me panic in the past, but by now I have instituted some sort of short-circuit and am able to cease panicking quickly. Similarly, after I graduated college I started panicking while driving on the highway -- a fantastic place to panic -- and I found a way to short-circuit that too. So it's just ridiculously frustrating that after so much experience with panic and so much time building that anti-panic muscle I still couldn't handle it today.

My dad says at another branch of the clinic there is a larger MRI machine. If I decide to try again (AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH) I will try to request the slightly less frightening machine. I can also get some anti-anxiety meds and see if they work. Or just not do it ever again, thanks. I have no idea. I'm not even thinking of any of that right now. I'm just trying to convince myself I'm no longer in the tube...


Monday I had my gynie yearly. We talked a lot -- like about the Integrative Medicine department for acupuncture or other alternative treatments. She says the only hormone that would be implied with pain is estrogen and that even though my cycle is a little screwy, I'm still close enough to center that it's unlikely to be involved. I don't know how much I like that answer, but of all the doctors I've seen she's the best so I'll go with it. She did a full exam on me and I look good, and hopefully everything up the hatch will test okay too.

Yesterday was the biopsy. This was interesting. I told my gynie about it and she seemed kind of surprised that she hadn't done a biopsy two years ago when she diagnosed me. She told me to keep the appointment just in case I need a follow-up because Dermatology is hard to get into. So I went -- and got quizzed by a resident and then by the doctor why my gynecologist hadn't done the biopsy. And what do I expect to see with a biopsy (I don't know I'm not a dermatologist?!?!) and realize that biopsying normal-looking skin is unlikely to reveal anything. By the time they left me alone to numb up I was shouting to the heavens JUST DO THE FUCKING BIOPSY. I felt like a fool for being there.

But then the doctor -- who, by the way, did not look like Bones but DID look (and sound!) like Famous Bipolar Lady and Psychiatrist Kay Redfield Jamison:

-- took a look and said she wasn't sure it would turn up normal. She said I have large vestibular glands and some redness. She had her resident do the biopsy at about five o'clock, down by the vestibular gland down there but not exactly where I feel the most pain (I tried to explain where it's worst but oh well -- they were looking for odd-looking skin). They gave me a single stitch that I have to get out next week, and the resident said she would call me within a week for the report.

As usual, I'm expecting nothing, but I'm glad I at least gave Dermatology a chance. You never know what new eyes might reveal -- for instance, I'm sure that my gynie and urologist said nothing about my vestibular glands because they've seen so many, but maybe they are actually a symptom of my overall pain.

But I am hoping for something, and I SWEAR it's because of the vulvodynia and not so I can avoid the MRI....I swear......WHY in the world did they build those tubes so small? I know they've gotten better, but IN THE FIRST PLACE, when the technology first emerged, there is NO REASON why they couldn't have built them larger. I'm figuring. Because the AVERAGE DIAMETER OF A HUMAN has nothing to do with magnetism. If humans were a foot wider on average -- Shaquille O'Neal all of us -- who, by the way, I would've been fine being today because my head would've stuck out the top of the tube -- they would've built the first MRI machines a foot wider around because they would've had to to get us in there. You can't tell me this is a technology issue when THE SIZE OF THE AVERAGE HUMAN HAS NOTHING TO DO WITH THE WAY MAGNETS WORK. If we were half the size we are it may have made the technology easier to do -- but guess what, we're not, and they made it work anyway!

I AM RAMBLING because I do not understand how they expect a LIVING BREATHING NOT WANTING TO BE BURIED ALIVE HUMAN to sit ALL THE WAY inside that tube and not want to claw her way out of it like a scampering skeleton.

Okay time to hit the bar. AHHHHHHHHHHHHHHHH

Thursday, July 23, 2009


Monday: yearly with the gynie. Going to ask her for a full pelvic exam instead of just a scrape. Also going to ask if she will order a hormone test. Because NO ONE HAS EVER DONE ONE. Also going to ask for pain meds.

Tuesday: biopsy with dermatologist. Ouch? No idea what the after effects will be. Interested in meeting this supposed super-sleuth. Hoping she looks like Bones.

Wednesday: MRI of the pelvis. Urologist doesn't expect abnormalities. Excited to get to listen to the MRI machine again. Rrrrrrrr, rrrrrrrr....

Man that looks like a fat wad of dough.

And will I be closer to knowing?

Vulvodynia says: PROBABLY NOT.

Also, before getting transferred to schedule the MRI, the urology nurse told me my diagnosis: 625.9.

What is 625.9?
Unspecified symptom associated with female genital organs

Seriously? That is so insulting. Maybe that's why he couldn't help me out -- because he couldn't understand what, specifically, was wrong with me.

I know it's just a medical code and it's so the MRI people guide their moonbeams the right way. And actually it made me laugh, not feel insulted. I just say insulted here because that way my blog is more galvanizing.

Wednesday, July 22, 2009

Health Care & The Crunchy Twenties

I don't know how I feel about health care. My gut says the government shouldn't be involved, but that's the idealist's point of view. Not useful when you're talking about health-care costs that have inflated at an astoundingly higher rate than, say, auto-repair costs have over the same period of time. I'm guessing. No supporting research, sorry.

At the same time, I HATE health-insurance companies. They give you the run-around by default because they bet you will stop hounding them to pay something before they give in and pay it. No research again. Personal observation only.

But I'm kind of in a pickle. I've been getting my health insurance through school -- and what a fantastic thing it is, having to clear EVERYTHING through the health center -- so each new specialist, each new test, I'm back in the health center saying, hey, permit this! Even if a doctor the health center referred me to refers me to the new thing. Fantastic.

ANYWAY, I've been getting my insurance through school but I'm kind of not feeling school right now. I just want to take a break, or maybe quit. I'm 6 classes away from my master's, and that means most people tell me to just finish -- but I don't think these people understand life.

So I'd take a semester off, take a breather, except for that health-insurance thing. So I looked online just to show myself how outrageously expensive it would be to insure myself *IF* some insurer decided to insure me (HAHAHAHAHA).

I don't know what the government will end up doing about health insurance, if anything, but despite all the Libertarianism within me, I hope they make health-insurance companies die. From vulvodynia.

As for school, I think as a grad student I only have to be enrolled in anything at all in order to get health insurance. Hello racquetball? There *is* one comp sci class I'm interested in, and I'll probably just end up taking that, but even one class seems too much right now. I need the clarity of mind that my incredibly simple life is giving me (and I am NOT taking it for granted!!!!). I go to work (wait tables), I come home and space out. All through it is internal conversation. And if I can choose this life, choose not to add anything, and if I'm okay here, and if I feel relaxed and calm and sometimes happy, and if I'm content, why would I change anything?

This is where the people who don't understand life drop their massive advice.

I wrote a while ago about A New Earth and Eckhart Tolle. He says that when you get past your ego, you'll start operating from your Being. Okay, in real-world terms -- when you stop doing things as a service to your identity ("I am a scientist," "I am an artist," "I am smart," "I am productive"), you'll start doing them with the will of your soul. And that's what I feel is happening to me. It's taking its time, but now I see how computer science serves my ego -- and that's why I'm rejecting it as a path.

---or, rather, I see how *school* serves my ego, and that's why I'm rejecting it. Because when I look back to when I was a kid, computer science was all a-flutter in my head back then, before I even knew what it was. Pretending I was programming, playing with DOS, making computer things in school -- I've *always* loved it. But school -- it's a choice of my ego, to show that I'm smart and capable, to get the degree, to be worth something. And it doesn't feel right anymore.

My problem has always been that I love too many things. I've always loved computers, but I've always loved art and music and writing and science. And I think part of finding the way forward is, for me, completely destroying everything that came before -- so I can do things in accordance with my Being and not my ego.

I took a look at my journal entries around when vulvodynia started. I expected to see multiple freakouts, but there weren't many. I know they were happening (in my office with the door shut crying to my parents on the phone! Up in the middle of the night terrified with throbbing pain!), but because I believed the pain would go away soon, soon, soon, was an infection, I was still writing about my job (and how I wanted to quit) and that boy (and how he was an ass) and my aspirations and my dreams and my ideas. The pain hadn't swallowed my head yet.

Now I know that all of my twenties -- due to mental illness and then mental illness compounded by vulvodynia -- has been a period of death, of, as Eckhart Tolle puts it, contraction. And it's fine. And I shrunk down to the tiniest point I could manage, and I'm still here. And that's how it has to be in order to grow again: utter loss. And just like the Universe -- expanding and contracting, some theorize, Big Bang after Big Crunch after Big Bang after Big Crunch -- when I grow again, parts of me may not return. There may be no zebras this time, or no Earth, or no stars, or no quarks. But you can't fight death. You just have to accept it, for as long as it goes on.

This Ace of Base song captures it perfectly. Or actually not at all. Maybe a little.

P.S. What does it mean that my cat puked on my spacetime book?

Monday, July 20, 2009

Monday, July 13, 2009


The cystoscopy was hell. They put lidocaine in my urethra but it was still unbelievably painful. I was crying and thrashing. The doctor said, "here's the important part, take a look" -- as if I could think to turn my head and look at the screen.

And it showed nothing.

I have "inflammatory polyps" in my urethra, but apparently they are pretty common. They used to cauterize them but they don't anymore because it doesn't treat anything.

And he doesn't think I have interstitial cystitis.

So then I had to pull options out of the doctor. He had this look on his face like we've done all we can do. What about another kind of infection? What about doing a biopsy? Well, we don't have the instruments/people to do that, sorry. And he's "good friends" with that awesome vulvodynia specialist I love.

Doctors seem to run out of juice by the second visit.

So I'm on hold with the dermatology department. He referred me to a woman who's leaving the Clinic but who is apparently a sleuth. Not many dermtologists will do biopsies down there, but maybe she can tell me which one of her colleagues will.

I will apply the scientific method myself. I'll get a biopsy. I'll see an allergist. I'll get a colonoscopy, or something. I just want to die except that I have this mystery to solve. Without the mystery I wouldn't want to die. Well, without the pain. If the pain turns out to be a dead-end mystery, I'll still want to die.

I'm 29. I can't have sex, I don't date, I have to fight to enjoy the seconds of my life. I'm miserable. I should be on pain meds, I know, because I'm getting extremely depressed. I can't eat well enough to reduce the pain because I'm so miserable. I want to run away or break windows or go naked everywhere. I want to lie in a field until my body starts to rot. I want to lie in the sun until I get skin cancer so no one can blame my death on me. But -- at least I have the mystery. It's keeping me alive.

Sunday, July 12, 2009

Who Will Sleep on the Floor for Us?

Tomorrow is my cystoscopy. I'm terrified. Horror-movie terrified. I know I will be numbed up and that the procedure itself shouldn't hurt, but I'm still expecting pain afterwards. And I'm pretty sure (in that vulvodynia-erodes-optimism way) that it won't show anything abnormal, so I'm already frustrated on behalf of my future self, and I'm exhausted at having to show my poussie to people over and over again. And uhm, camera-up-urethra sounds way scarier than a spooky little girl. But maybe it's in the movie?

My mom's taking me, which will help a lot. It means I can space out if I need to. I'm also hoping maybe she'll make me a more sympathetic figure. Maybe I can get her to shed some tears. My doctor is a good listener, but I've only seen him once. Plenty of doctors have passed the first visit and then started sucking it up.

I've been mulling over this quote from Albert Camus's The Fall since I read it a few weeks ago:
I've heard of a man whose friend had been imprisoned and who slept on the floor of his room every night in order not to enjoy a comfort of which his friend had been deprived. Who, cher monsieur, will sleep on the floor for us? Whether I am capable of it myself?
After all this mulling I don't know where to start.

Really the quote says it all. Who will sleep on the floor for us? It's sort of absurd when applied to vulvodynia literally: who will wear a chip clip on their genitals for us? But a friend of mine has a pregnant sister who can't tolerate dairy or soy right now, and my friend is home this week avoiding both in order to experience what her sister is going through. In order to empathize through action.

When I go out with friends and they eat, they often say how guilty they feel eating in front of me. But only one of them -- the one in the above paragraph -- doesn't eat unless I also eat. And if you think about it, it is kind of funny: "I feel so bad eating in front of you!" ::munch munch munch::

But even though all these people claim to feel bad about eating in front of me, no one even flinches when they talk about sex in front of me. The food -- whatever. I didn't have a meal plan for some time in college and I'd sit in the dining hall without food (all honest and shit) as my friends ate. It's not like I can't eat at all; I'd just usually rather avoid the trouble of trying to eat at restaurants.

The sex, that really bothers me. I can't believe people talk about it so freely around me without any indication of remembering what I'm living with. The mere thought of vaginal sex freaks me out because it's so painful. I have to work hard to remember that it's an enjoyable thing when you're not in pain. Complaining about not having sex, saying how much they want to have sex, how they miss sex, how they have great sex, how they did it several times in a row, how they just have to have it -- what in the WORLD can I say in response to that? THERE IS NOTHING I can contribute about my own experience that wouldn't grind the conversation to a halt, so I sit there like an idiot and nod like I'm really happy or sad for them and wait for the subject to change.

As for the "sleeping on the floor" concept, no, I don't want my friends not to have sex. But you know, when you're smearing your gluteny food all over your face and guffawing about the sex you want or just had, you can't expect me to believe you when you say how much you care about my situation.

And I say I don't want anyone to sleep on the floor for me, but what I mean is I wouldn't want anyone to do it by my command. Really, OH I would dissolve into a Kubla Khan pleasure-dome river of tears if someone showed that kind of friendship to me. When my friend told me it was a given that she wouldn't eat without me (I hadn't figured it out yet), I was floored (haha) by her character. Whose discomfort have I ignored? When have I eaten when I shouldn't have?

It sicks me out to think that I might have done that to someone.

I will continue the passive-aggressive trail by writing about a friend who may or may not read this. He's historically one of my best friends but lately I've felt unsupported by him -- just with all the shit, I don't feel like he gets it. (I've already told him this so technically this isn't passive-aggression.) He told me how much he identifies with his penis -- in simpler, guy-like terms, but that's what he was saying. And I tried to explain to him that I'm basically living without a vagina/vulva (even clit), without all the sexuality I acquired as part of my identity, and he still insisted that his penis was the center of the universe and he'd rather die than lose it. More absent empathy. I just couldn't believe it.

And as I lie on my balcony drinking my abundance of hard cider, absorbing my abundance of sun, using my abundance of literateness, living my abundance of health (because it is an abundance), I am, despite the undertow, the picture of comfort. And knowing how I feel around people who don't get it, I don't want my abundances if others are living without. But what do I do, go homeless? Does the act of physical empathy matter if there are no witnesses?

I think my point is that almost no one will sleep on the floor for us because there is an extremely slim sliver of people capable of that kind of understanding AND that kind of discipline. Close friendship alone can't surmount the barrier. I just hope that after all my time with vulvodynia I get what it means to support someone and I never make anyone feel forgotten.

Tuesday, July 7, 2009

Best Blog Post Ever

I realize my posts have been declining in quality the more I listen to Ace of Base and spaz back at life. So here it is, at the very bottom, the best blog post ever: Axl in his hot pants.

Friday, July 3, 2009

Ace of Base & Having an Awesome Memory

(possible triggers)

FIRST OF ALL I was dancing and I'm all hyper. HI JENNY PORTO! Sorry I keep calling you Jenny!

Secondly, remember how I told you Mariah Carey was my savior when my vulvodynia first started? Ace of Base have taken over. They are saving my life right now, perhaps literally.

I don't want to scare anyone but I've been pretty deep into the depths of deep things lately. I have my Stack of Despair, a bunch of books I'm working my way through in the sun while drinking hard cider and listening (subjecting the neighbors) to Ace of Base. Because I don't want to do anything else and, not now but recently, I didn't see the point in living and wanted to die.

I still don't really get living, but Ace of Base have stuck by me, and finally I get why I can't do myself in: because who am I to say to the universe, hey, universe, you were wrong to create me.

For a loooooong time I sat in my lawn chair thinking, send me any astoundingly insightful philosopher, religious or otherwise, and I will smack him down about why it's okay for me to kill myself. But then one day I decided to change my Facebook religious views to Love Thy Universe because Atheist looked really mean all of a sudden. (I also changed from Libertarian to Non-Despairing. Libertarian looked snide (not that Non-Despairing doesn't...but at least it's also funny).) And then I was walking around talking to myself and I realized, uh, shit. This is the only universe POSSIBLE for me. And so if this universe is IT, then this is it and I need to shut up.

----but really if you think about it, my saying that I want to die to the universe would be the universe saying that to itself...but I'm the kinda gal who defers to external judgment even when external is impossible. And I don't believe in god or fate or that there is reason or intention behind my being here --- no, no, no. All of it is just events that happened, from the Big Bang on up to my conception and through my continued existence, to put me here now. So here I am and the universe is all I have. I have to Love My Universe, because this is what the fuck it is.

Yeah I'm not making any sense but today there is no editing.

There is Ace of Base. ::intermission::

Not one of their more exciting videos -- too much frickin symbolism, not enough greenscreen -- but still the best song possible. WE ARE TRAVELING IN TIME.

And finally, my memory kicks ass. I'm bragging here: I remembered that Helicobacter pylori is the common bacterium associated with ulcers -- upon seeing this article, about how women receiving treatment for H. pylori saw a resolution of their dyspareunia (they say that and vulvar vestibulitis and localized vulvodynia...words words) and digestive problems.

Really the story here is the article, not my memory. I just felt like bragging because I'm hyper. But dudes, I've thought for a while I might have an ulcer because I can no longer drink wine without getting nauseous and I've had pains there (but who cares about random pains anymore, really). So the coincidence is making me laugh. And I wonder if I should ask someone about it -- but really, which specialist do I ask and does anyone care. Ugh.

Anyway, dance and/or grilled cheese with tomatoes time. There's no "Which Ace of Base song are you?" quiz on Facebook. Yes I'm thinking of making one. I'm thinking, actually, that it's imperative that I do. And I actually want to make one too, but really only if I can do it in my lawn chair.

Thursday, July 2, 2009

Vulvodynia Isn't an Answer

I'm at the point where I'm like, whatever it is, just figure it out and tell me. Cancer? Fine. MS? Fine. Scary horrible other disease? Fine. Just figure it out and tell me what it is, because this "diagnosis of exclusion" is driving me crazy. Vulvodynia isn't an answer.

YOU KNOW eventually they're going to find that 75% of vulvodynia cases are due to __________. Given that vulvodynia is so common (15+% of us), I'm betting on something infectious, like a weird strain of bacteria or yeast or other fungus. If so many of us suffer from it, and if our symptoms corroborate, it seems unlikely that we'd all have some genetic or physical abnormality. 15% is no longer rare.

My vet friend told me I should be biopsied -- my skin down there. Apparently she does skin biopsies (including on a dog's vajayjay! Poor doggie but guess what -- she diagnosed its problem) to determine a whole range of things, from infections to autoimmune disorders. There are skin pathologists who study that stuff specifically. I mean, fuck! Why haven't I been biopsied? Why haven't YOU? WHAT THE FUCK?

So when I go in for my cystoscopy I'm going to ask the doc about that. Hells yeah, snip a bit of my V if ----- if, all else aside, we RULE OUT a skin problem. Because most of my pain seems to be external, and why are you crawling up my urethra with that thing again?

OMFG. Just. answer. the. question. already.

P.S. Here's some more Ace of Base. Shut up, you love it.