Friday, September 25, 2009


Everyone is denying responsibility for my problem.

The gynecologist said she hasn't been treating me for vulvodynia so I can't get a note from her to keep my health insurance while withdrawing from school. She told me to call the dermatologist since they've treated me more recently.

The dermatologist said they only saw me briefly and that the gynecologist should write the note since she's been treating me all this time. Or my general practitioner could write one, but as I don't have one he or she can't.

I haven't asked for a note from the school's health center, which functions as my GP, because they haven't treated me for ANYTHING and have only given me referrals to see the other people.

I called the counseling center for the note but they (rather, the single "he" I spoke with) won't write me one because they don't comprehend what it's for even after my endeavoring explanations. They are also a bureaucratic hedge.

I won't see a psychiatrist for a few weeks. I might actually get one out of them.

I haven't tried the school's disability center yet because I'm afraid that I will get the same bureaucratic Marco Polo I got from the counseling center. My limited contact with them has not been awesome.

The urologist looks up my peepee, doesn't see anything, and tells me my pain's out of his realm.

The vulvodynia specialist offers pain treatments only and doesn't want to consider an exo-vulvar cause. Doesn't even consider symptoms outside the vestibule.

My original (and now ex-) gynecologist denies that my pained vulva is her concern.

Apparently there is no doctor who looks at the urethra AND the vulva and considers them as, oh, I don't know, connected.

Meanwhile...yep, still in pain! Thanks fellas!

Tuesday, September 22, 2009


I'm just miserable and I wish some doctor had cared to improve the quality of my life.

I feel really shafted.

It hurts to move my legs even a little. Or turn my torso or my head. This happens every other day or so. Any kind of movement and pinch, pinch, pinch.

On top of the burning.


I keep trying to think strategically. I will get the MRI to rule out visible internal problems and then I will see another urologist and demand to be diagnosed with interstitial cystitis. (Or something.) There are drugs for IC, and there is a diet, and yes, it really hurts when my cat steps on my bladder even though I couldn't tell if it hurt more when the doc poked it through my vaginal wall because the vulvar pain brought on by his careless fingers was so excruciating. I have weird discomfort and pain across the front of my bladder (basically my mound) when I eat the wrong things, though I don't always know what they'll be. All my pain seems to be centered around my urethra, and that's where it pinch, pinch, pinches when I move.

I am going crazy.

And I know the pain is turning into a sort of constant trauma, or has already gotten there, and that sucks.

My mood is improving though even though I'm only writing this so I can settle down and go to sleep. I holed up in my bedroom as much as possible and tried to keep the stimulation to a minimum so my brain had a chance to settle down. Tried to keep thoughts out of my head if possible. I need some mood meds but I think I'm steady enough to go to work even if it means coming home and holing up.

I need cat food.

It hurts to turn to find my cat, hurts to laugh or cry, and I don't see how anyone is supposed to live this way. And I don't understand why no doctor has cared to help me get a better quality of life. Is it MY failure? Did I not make my case clear enough? This is insanity.

Sunday, September 20, 2009

Down to the Root

Late last night, trying to get myself to just SIT ON THE GODDAMN COUCH AND DO NOTHING, I thought back to how my "vulvodynia" started.

It started with urinary pain -- bad pain with peeing and a glowing red orb (in my mixed-senses mind) right over my urethra and clit. I remember having sex with that pain, even. It hurt, but it hurt up north, by my bladder. My vulva wasn't freaking out yet. The thing could actually get in there without knocking all the air out of me.

And the pain started within a day of having sex. Just like that -- like a UTI, but a different kind of pain.

So I say I have vulvodynia -- and I do. But I think the pain originated in the area of my urethra and/or bladder and then spread to my vulva as it got worse and no one could get rid of it.

This one thought is really helping me along today. Well, I've been up for 20 minutes. But it makes me feel like if we just figure out what is wrong with my urethra...

The urologist basically released me from his care, implying there was nothing more he could do because hey, he tried antibiotics (for a skin-based infection) and then he did the (torturous) cystoscopy. But I still haven't done that MRI, the one that can see tiny, barely internal infection that he might've missed (that he thinks isn't there), so that's one door left open.

And there are other urologists, too. Ones who might keep going.

I focus on the vulvodynia because that's what someone finally diagnosed me with. And I do have it. But when I eat really well, the *vulvodynia* is the thing that starts to go away. My urethra is still a bastard.

And p.s., Dr. Urine, you told me I don't have interstitial cystitis but I don't know why. I mean, it would be great not to, but if I eat the wrong things the front of my bladder hurts, or my urethra and clit hurt so bad I have to pee and then I pee out a teaspoon. I may not have interstitial cystitis -- you're right -- but the diet does help, so for now I'm going to pretend you told me I do so I start eating a little better again.

(Turns out some wrong things are things I thought were okay, and going back to them in an effort to try to eat better showed me they're wrong. Like my beloved kombucha tea. OW.)

As far as my mental state, I've made a pact with myself to stay on the surface, in the moment. The future doesn't exist yet.

Oh my god, my neighbor's kid is playing Guns N' Roses on his guitar.

Saturday, September 19, 2009

Still Not Okay

I could use some good thoughts right now. I'm really not doing okay. Don't worry, my friend is keeping constant tabs on me and we're discussing whether I should go to the hospital.

The main issue for me is that I don't want to miss work. But if I don't fix this soon I won't be able to work. I can tell.

Also, going to the hospital -- you feel like bipolar takes everything away from you, and then you cling to the fact that you've never been hospitalized for it. At least you have that.

But hospital is 1-0 -- you're in or out. And it's dramatic and it means something to other people. The truth is that I can't count the number of times I was sick enough to go to the hospital. That's a spectrum, not 1-0 -- and pretending that going to the hospital is something worse than needing to go to the hospital is buying into the 1-0 crap.

(BTW, if Kanye West doesn't have a diagnosis yet, I have one for him.)

I got someone to work for me on Monday so now I have three days off in a row. I can call doctors on Monday, talk things over with my therapist, and try to settle down a few notches. See if I'm recoverable at this point. I'm worse at home than at work, actually, but the extended me-space might help.

I know I shouldn't push myself, but if I felt unsafe in this setup (with the lifesaver guardian-angel friend especially) I'd be there by now.

What got me spiraling, I think, was the increased pain from the steroids. It was scary, then---cascade of mood problems. Sometimes I don't know why all of us aren't in hospitals.

I cringe at publishing this post but this is something we need to talk about. There is nothing wrong or shameful about where I am now or how I feel. In fact, it makes perfect sense, and I'm not really sure how I held up as long as I did.

I'm also thinking of my cousin's babies, premie twins, who are having a rough time right now. If you have any spare thoughts, please send them Wyatt and Jack's way.

Tuesday, September 15, 2009

The Jilted Mop

When I read
The falling flower
I saw drift back to the branch
Was a butterfly.
-- Babette Deutsch
and cried, I thought I was being sensitive. And when I read thirty other poems and cried each time, I again thought it sensitivity.

Then when I cried for the jilted mop on the Swiffer commercial, I knew I was sad.

I did a walk-in appointment at the counselor today. I couldn't stand the elevator so I climbed up the twelve flights of stairs, the first five of which were in squares and stopped at a wide view of the city over a graveled roof. I used to suck down that view from whichever building would give it to me, the city cross-section with the lake off to the right. This time it made me dizzy, sick to be so high, but I denied it and stayed and stared and admired the fat, fat, fat spider lazy in his web of dead midges.

Then I climbed up the rest of the way, these stairs internal and tight, windowless, and I knew that all buildings will fall and trap this inside. Three out of four floors told me NO ENTRY and I thought it'd be cruel but regular not to let the elevator-averse in through the counselor's door.

But the 12th-floor door let me in, and I looked like an emergency, or so I figure because the receptionist didn't seem to hear me say "if possible, or I can come back some other day." Panting up the stairs plus panic -- some other day would be fine -- but if another day, I might never come back into this building.

I went to the waiting room and filled out the form as the building gave way to itself again and again, as concrete choked our throats from different angles, or maybe I'd black out before the crush. Back again, waiting for the counselor, I ignored a half-done jigsaw puzzle in favor of Taylor Swift -- our certain culture, planned colors, nothing collapses under such architecture -- told you she wasn't an American Idol.

I saw the same counselor I saw on Friday, an intern, and told her I hadn't told her the whole truth last time. Friday was a good day, and today was not. Today I'd woken up talking to myself and laughing -- but then leaving the house was a crisis and this tower they'd insisted on being in was an accordion. I hung onto her features, her shoulders, trying to be a productive emergency, to communicate as the floor gave way with each new huff of my lungs.

If I curled up and shook and fought, they'd take care of me. They'd still be in a ridged building and if mine collapsed they'd drag me out, lay me out, they had to have Haldol around, had to have somewhere to put, something to do with a crushed girl.

But I hooked her and held her thin eyes until she shut off the light and talked me to where I relax, the side of a lake at sunset, shrouded in an inlet, pebbly beach and fallen flowers---
i will wade out
till my thighs are steeped in burning flowers
I will take the sun in my mouth
and leap into the ripe air
with closed eyes
to dash against darkness
in the sleeping curves of my body
Shall enter fingers of smooth mastery
with chasteness of sea-girls
Will i complete the mystery
of my flesh
I will rise
After a thousand years
And set my teeth in the silver of the moon
-- e. e. cummings
And then we talked to the root of the problem, past the vulvodynia to being cut off from what had always been piping me alive. And being cut off, the vulvodynia had only ever worsened it. It hadn't been the trigger, though it became the main obstruction. Consumption.

When I was in college, falling down every day, that's how I died -- not all of a sudden but over time. What I felt today was usual back then, was more days than every other. Young bright self, mopey high schooler, my intensity had always felt like luck, like insight, a distilling dew, but in college it overboiled, perverted itself, turned from a power to a possession. And as I fell over and over, as I couldn't keep up, every hope an onus, possession withered to lameness, intrinsic, chosen.

When my anxiety was at its widest, I didn't hallucinate -- no, that would be too intriguing, let alone diagnosable. Instead my senses jolted up and saw things of no interest, scurries of light, babble without instruction, falling floors if I closed my eyes so I held onto my bedframe and stared. Everyone else can do these things I've laid out for me to do -- the schedule, the work, the aspiration. They've all acceded to the demands, adult-like. My resistance is dissent, my dissent a tantrum. I am lazy; I avoid; I'll never be anything I admire.

My integrity, that thing that'd kept my back straight under adolescent pressure, it seeped out and asserted itself where it didn't apply. Failing to achieve as my aptitude said I could became a moral offense, slashing the face of society.

The zillion faces I drew

stopped their line, the writing and the music were burdens of ability. Everything was a burden on my ability, and everything was an imperfect use of time.

And that's why I'm so sad.

Vulvodynia is sad. It's all sorts of abandonment. But the ultimate insanity is losing yourself, however it happens. Vulvodynia can do it. Mental illness can do it. Crises, trauma, external strife. It's all the same. If you have yourself, you stay sane. If you don't, you don't.

Myself. She's the one who did those drawings, who hunkered down mindlessly to do them. Who could hunker down mindlessly, who had that unawareness of self, went even under bent back of sadness to the things that would vent her. It's not a fault of not venting, all these afflictions of mine -- rather, they are what stopped me up, cut me off from my happinesses, loaded me with obligation, felled me -- they took me from myself, the saddest thing, the insanest thing, and I am devastated that I've been away this long.

I'm dropping the class I was taking. I told the intern I'd prefer her as a counselor if possible. She's still an intern but that was probably the most useful therapy session I've ever had. I am so hard on myself and she wouldn't allow it, she sniffed out the heart and ripped it up, she didn't give up, she liked the blood and knew how to make it bleed. Meds are good and I'll probably be back on them, but we don't have the most successful history. They aren't magic pills, as anyone knows.

I hugged her and ran back down the stairs just before 4, just before I couldn't be parked in my space anymore. I ran, my little piggy heels down to their metal studs, out around the concrete campus and down the final steps -- across the one-way street to the cop tucking a ticket under my windshield wiper. "I was just crying in therapy, thanks," I said -- no point in arguing with her, but maybe some random shaming? Ticket time: 4:01 PM.

A+ in Depth

Saturday, September 12, 2009

Hallelujah, Manic Depression

Can I get a HELLS YEAH for bipolar disorder...

Not to shove my every-several-days moods into the faces of those who are more consistently depressed...I've been there too, several months across, and it is unquantifiably hard.

But after a bout of severe -- dangerously severe, to be honest -- depression, I am back on the higher side, hypomanic (sub-manic) and thinking everything is fabulous.

No, the pain isn't fabulous, but in this state I'm much better at ignoring it. Things are funnier, people much more interesting, and me, I'm taken with the moment. My, what a fabulous moment! What a fabulous, fabulously funny moment. And these moments started happening overnight.

This is the only thing that keeps me going -- that I oscillate like this, up after down. I do not know how I'd make it THAT depressed day after day. My heart, my everything goes out to those women, those people who live that way. I can't get ahead in life because I'm always a different person, but how much better to be saved by your own moods time and again than to be drowned by their constancy.

So I wanted to say: the thing the doctor gave me was not Elidel but Protopic, aka tacrolimus, aka "WARNING: Patients have benefited from tacrolimus when it is used correctly. Long-term safety for this drug is not known at this time. There have been rare reports of cancers (e.g. skin cancer, lymphoma) in patients [uhm, I typed patience] using tacrolimus. It is not known whether tacrolimus caused these cancers when used on the skin. Further studies to determine the long-term safety of this product are ongoing. In the unlikely event that unusual lumps, swollen glands, or growths (especially on the skin) occur, contact your doctor immediately. The US Food and Drug Administration recommends the following: This drug should be used only if other drugs have failed or if other medications are not considered appropriate by your doctor" etc., etc., etc.



NOT like I've tried so many other treatments...AND this is an ECZEMA treatment, and let me tell you doctor, MY COOCH DOES NOT ITCH....

What's a few applications? But I haven't tried it yet. In part because of how my pain elevated with the steroids -- NO REPEAT, PLEASE -- and in part because, uhm, lumps, growths, these things do not sound good when phrased with cooch.

Maybe one of these days. Maybe not.

If I thought it would work, it'd be a different story.

Wednesday, September 9, 2009

Not Okay

I don't know how you other v-girls do this. I am so depressed. I know the pain has been worse lately and that's probably part of it. I also know I already have depression issues and maybe if I started as a normal person I wouldn't get this far down...

I know I shouldn't talk about "normal people" but it's really hard not to. When you feel held to a standard, an emotional standard, when you feel judged for emotions that to you are totally organic and normal...when the world still doesn't accept mental illness as valid, when the world can't see mental illness and can't see your pain either and so both are burdens on your behavior, on how you comport yourself, because neither can serve to substantiate the way you're acting...

I am just really depressed. In a different way. It's seeped down into the roots of my mind, corrupting philosophies and deracinating values and apparently vocabularies. I drank a lot, started smoking but neither ever took...cigarettes, the most disgusting things in the world, felt the cancer creeping into my lips. I wish I were addicted to something because then I'd have a pursuit. I'm hurting myself with food which just hurts me more by making me less stable, throws off my mood, less able to cope, spiral down.

I don't know how I'm going to make it. And I just wish for once when I confessed all these things I didn't hear "no, you don't feel that way" or "come on, it'll get better." What is so hard, so foreign about "that sucks and I'm sorry." When I hear what people have to say all I can think is that they don't really understand how bad this is, how very depressed I am, how much the pain hurts, how it is exactly torture, nothing less. How I have lost everything I am and everything I wanted and I don't see a way forward in this world. How I have no energy to care about searching for solutions and I can't rely on anyone else's momentum here, have to do it all myself, because I don't have any advocates or any partner or anyone willing or able to do some sort of spirit-blood transfusion.

How much this feels like a violation of my body, of that body clothed in bright colors and laughing hysterically deep in her four-year-old belly. It feels like I am falling apart. It feels like I'm rotting.

Please don't write me to drop knowledge on me. Don't tell me to get to a head doctor or that I should try this or that approach to resolving the pain. I can't do everything everyone suggests and I just have to put my head down and go one step at a time. And I know I need to get to a head doctor. I've made the appointment.

Monday, September 7, 2009

More Dermatology Ideas

I talked to the stand-in doc at dermatology and he prescribed me Elidel (an eczema cream) and told me to play around with the steroid and the Elidel and make an appointment with one of two docs since my doctor has left the hospital. The next appointment with either is October 6, so I have a little time to mess around and find out that neither of these things is going to work.

I think the Elidel is a horrible idea. But I thought the steroids were an acceptable idea and I was totally wrong. So maybe thinking the Elidel is a horrible idea means my subconscious KNOWS it's a brilliant idea and I will be able to CANCEL that appointment and never see a doctor again...

At least this is clear: my pain should NOT have been getting worse on the steroids. I knew that but the doctor confirmed it. No, first he said "You can try applying the steroids seven days a week" and I said "HOLD ON buddy! I am writhing here!" I think he thought the pain just wasn't going anywhere. But no, it was going way, way, way up.

I stopped the steroids on Thursday and on Saturday night I tried a Vicodin. It didn't work. By which I mean -- it didn't work. The pain was still there like it was before I took the Vicodin. I even laid still on my couch since movement hurt and that didn't help. It just flared I imagine it would feel being dragged at 70mph over asphalt.

So I am sort of terrified even though now I'm much less offended that my gynie wouldn't give me pain meds. I read that Vicodin is for "moderate to moderately severe" pain which means there have to be levels of drugs up from it before your only option is unconsciousness. But while the flare I had was bad (really, really bad), it was still not the worst pain I've ever felt. The worst crotch pain I ever felt was worse than the worst cluster headache I ever had, and cluster headaches are termed "suicide headaches" because they make people want to kill themselves. They have no medical recourse except for weird stuff like pure oxygen and injections. If Vicodin can't address what I would call a moderately severe coochie flare...I'm just matching things up here.

I'm also terrified because this thing remains such an intractable mystery.

I'll stop there and tell you something good. My brother and I took my grandparents home from the Labor Day party yesterday. We got Poppa out of the car and wheeled him into the house where we gave them both our usual super-sweet, lingering goodbye. As we were leaving we realized we didn't put the car in the garage, so I ran back in, got the keys, and pulled the car in. I ran back to give the keys to Grandma, and as I was leaving she HIT ME IN THE CROTCH.

"I hope your ------ feels better," she said. "I've been praying for you and I just want those doctors to take care of you!"

Thank you, 20/20 and Mom, for telling Grandma about my problem, because that crotch swat was the highest benediction.

Tuesday, September 1, 2009


Easy to Spread

Female Complex

Active Bottoms

Steroids Update

I cancelled my internet last week because I felt like all the time I spent online was obscuring the stuff in my head. And while I think it was a good move, not having internet is a logistical mess. So my blog posts will probably be less frequent -- at least until I convince Blogger to accept the photos I've tried sending from my phone. And then there will be photos, sometimes.

It's been about two and a half weeks on the steroids, and for the past week or so my coochie has been raw and irritated. Simple contact like water running over it in the shower is gross, and peeing has become even more awful than it was before.

I have to call the dermatology department to make a follow-up appointment (at 2 months on the steroids), and I'm going to leave a message for my doctor/resident/whoever's left (the doc was leaving for Florida or something) to tell them about the increased pain. I know the steroids may cause temporary irritation at the beginning, but I guess I thought that period would be over by now, and I'm concerned that as things get more disgusting down there I risk a more permanent heightening of my pain.

I'm also going to make an appointment with an allergist, probably long overdue.

I'm thinking in the back of my head about Occam's Razor: the most direct explanation for vulvodynia remains an infection. What kind of disease affects 15% of the population? Infection.

I'm also thinking about this. Lora has been dealing with cervical cancer for six years but is disallowed from ridding herself of the source with a partial hysterectomy because she might want to have another baby someday. Lora, I am so sorry.

I hate doctors. What gets me most worked up these days is thinking about how little they seem to care about us. I wrote this elsewhere a few days ago, comparing customer service at my job to customer service at theirs...

if i ignored things like they did in my job, or said no to things like they do, or failed to consider something...refused to serve [customers] honey mustard, failed to bring out salsa, didn't refill drinks, didn't smile, ignored questions, seemed skeptical of their soup choices, recommended against broccoli, charged for "restaurant incidentals," waited for them to call me over, got surprised when they knew how to pronounce "reuben," asked them if they were servers since they knew what a napkin was, moved the food around their plates as they were eating, dumped the food in the garbage before they were done, walked off in an important huff, and sent them a bill later at three times the meal's value....

I just don't have the bigness in my heart necessary to give doctors the benefit of the doubt right now.

But I'm feeling okay otherwise.

I will send you pictures! NOT of my vulva!