Tuesday, December 15, 2009

Just When You Think You're Ahead...

Forget everything I said.

Forget part of what I said. Working on my pelvic-floor muscles is definitely keeping my vestibular pain level low. It's pretty cool. I try to check in regularly down there and make sure my muscles are at Floor 1 of the pelvic-floor elevator, and if I feel a pain surge I drop the elevator and it usually helps.

After days of lying in the bed with a cold, working on my pelvic-floor muscles and monitoring my pain, I thought I was in the clear. My pain levels were steady -- I still had pain in the northern part of my vulva, but I had less urethral pain and little to no perceivable vestibular pain. Peeing was better, and it wasn't elevating my urethral pain levels afterwards. I thought the remaining obstacles were muscular and that I would work them out over time.

Then I got a burning flare in my urethra after peeing that made me drop the dishes I was washing and run to the bed to relax my muscles as much as possible. That helped a little bit, but the flare was still there. I did some internal investigating and my muscles were relaxed. Then I coughed -- and pain zapped through my vulva as my muscles contracted, which had never happened before.

My diet was pretty limited while I was sick -- I didn't have much of an appetite and I was in love with toast. The flare came as I started eating beyond the toast. Food allergy? IBS? What? What vulva, what do you want from me.....EVERYTHING I DO I DO IT FOR YOU. I AM BRYAN ADAMS, FOR YOU.

Anyway, fine. The gastroenterologist is sending me to an allergist, after which we'll choose our next move. My preliminary bloodwork could hardly have been more normal, which probably ruled out some things in his head. He did celiac work on me even though I told him I was gluten-free and had had that bloodwork come up negative before -- negative again. But he hooked on the gluten thing, saying that the people who get instantaneous diarrhea from gluten are the tip of the celiac iceberg. So I may be headed for an endoscopy to confirm I'm just gluten intolerant. Doesn't make much difference to me except that I'd probably be more careful if I had celiac, eating more carefully while out, etc.

I'm still on Effexor, so I don't care :) My psychiatrist is upping the dose to see if it helps me care about stuff ("motivation"). Apparently norepinephrine is what motivates you, and that modulation usually kicks in at 150mg of Effexor. Not sure I'm looking forward to being motivated again, though. TV good. Bed fantastic.

After I told him I'm having all this internal conflict, maybe that's why I'm ambivalent, maybe my weird internal life is the root of my inaction...feeling "morally conflicted about how to live"...he came back with a fifteen-minute speech citing religions and philosophers, stories, books to read, music to listen to. He appears to be my guru?

Thursday, December 10, 2009

Pelvic-Floor Dysfunction, What's Your Function?

I've spent the past month or so sleeping.

First I started Effexor and with it started sleeping at least twelve hours a day. But because I was on Effexor, I didn't care. I became an undepressed slug, the kind of slug every depressed person aspires to be.

Then I got a cold that didn't make me feel sick, but because it includes a hacking cough and I'm a waitress, I've been home for several days. Lying in bed, because I'm on Effexor and I don't care.

(My psychiatrist says Effexor is one of the better meds for "motivation." I had philosophical qualms about getting motivation from a pill, but it looks like those are moot.)

Somewhere in there I went to the urologist, who confirmed that I don't have interstitial cystitis but that I definitely have pelvic-floor dysfunction, aka dysfunction of the muscles hiding between my legs.

PFD didn't surprise me. After three years of coochie pain, I figured my muscles would be upset. I figured that's why my pain originated in my urethra and took several months to progress to my vestibule -- a gradual pelvic-floor response.

The urologist suggested that I've had PFD my entire life, citing my toddlerhood UTIs as evidence. She called it a "voiding disorder." Maybe that time I saw blood in my kiddie potty wrenched my coochie up in a long-term way. Maybe that's why I have IBS with constipation -- a wrenched-up rectum.

Except that apparently I'm not really constipated. When PFD affects your butt, it makes it hard to poop, and it makes you feel like you empty incompletely. When I poop, I just poop, and then sometimes I run around a little like my cat does.

But I didn't say that to her. Instead I told her how much diet affects my pain -- and she said that until I get my gut under control, no physical therapy is going to fix me.

So off I went to the physical therapist and the gastroenterologist.

I had my first physical-therapy appointment the day after Thanksgiving. Let's just say the thought of that appointment didn't do anything to relax my pelvic floor. I was imagining instruments and measurements and investigation, all of it requiring me in stirrups while the therapist pawed her way up there.

Instead, the therapist spent a lot of time evaluating my body as a whole, looking for weakness or tightness and examining my posture and flexibility. She gave me a whole bunch of stretches to do that don't involve my vulva directly at all. A queef of relief.

Then she had me lie on the table for the first face-to-vulva meeting -- no stirrups, and she stood above me to watch over the position of my legs. She stuck her finger in and found the spot where the urologist had been poking that made it feel like someone was drilling into my bone. She massaged that muscle and taught me very gentle stretches to relax it.

She explained that the pelvic-floor muscles are like an elevator: they should sit at Floor 1 and drop to Floor 0 to poop or pee. Mine sit at Floor 2 or 3, creating all that tension and pain. She had me push out on my vulva like I was peeing and called that Floor 1 -- but it felt to me like opening my vulva up for peek-a-boo.

Before I left, she gave me some handouts and asked if I had anyone who could help me with the interior work.

"Are you in a relationship?" she asked.

"No."

"Roommate?"

"No."

"Close friend?"

I'm not sure who in my life would stick their fingers up my cooch to help me with my physical therapy, but I won't even ask a friend to bring me Robitussin.

I went home, put the papers on my kitchen table, and thought about pelvic-floor exercises in the future tense. Then I got sick, started doing a couple of stretches during my 23 hours in bed each day, and got curious.

I knew part of the reason I had trouble relaxing my clamshell during the therapy session had been that I had no idea where she could be poking to give me so much pain. I had never felt pain in that place before! I didn't even know that place existed! And though I had looked at plenty of pelvic-floor diagrams and examined physical models, I still had no real idea where the pelvic-floor muscles ran inside my body.

So one lonely, sick evening, watching Family Guy, I clipped my middle fingernail and entered the pleasure-dome. It took a little wandering, but I found where those ladies had been poking. The pelvic-floor muscles sit on the sidelines just inside the vagina. When I pushed my finger just past them and pressed down on the top of the muscles on the right side, through the vaginal wall, it was like a toothache.

Then I understood what "pelvic-floor dysfunction" means when the muscles are too tight: my coochie is a clamshell with lockjaw.

Most of my muscle pain was on the right, so I spent the rest of Family Guy massaging the right-side muscles until they were purring like a small puppy. I found that pushing my anus and perineum down to Floor 1 helped me relax more than pushing my coochie out, letting the muscles fall away from the center of the vagina into their purring puppy positions off to the side.

I've been doing the same exercise daily since, but after that first day my muscles are relaxed every time I go spelunking. Of course, I am lying on my back with knees bent each time, which helps. I try to relax all of those muscles throughout the day (I'm sick, not much else to do), but I find that Floor 1 doesn't feel like a rest position for me yet. I wonder if it will eventually -- are my muscles just shorter after being cramped up so long? I basically feel like I'm trying to fart all the time.

As for the pain -- the burning in my vestibule has gone down considerably, exactly the way it did when I ate "the good diet." However, I still have pressure and pain as my bladder fills and pain with urination, though it doesn't feel like a burning pain in my skin anymore. I figure the bladder problems are related to the muscle problems, but I have yet to find the coordinates that can turn that pain down as well.

I've also found that I have tightness and pain in my right hip in all different directions -- where it meets the crotch, back and front, outside, and even all the way up at the top of my pelvis -- while my left hip is still a teenager. Again, I haven't found the trick there either. That'll be a question for the therapist.

So in the end, this is the goose I've been chasing all along -- what is it that refers intestinal problems to my vulva? It's the muscles! The urologist thinks IBS with constipation is caused by PFD, the physical therapist thinks IBS and vulvodynia share a tissue issue, but they are both wrong! Okay, I have no idea who's right, but for me it's pretty clear: I got pelvic-floor dysfunction after trying so long to manage IBS with my muscles -- abdominal, pelvic-floor, etc.

Of course, all of my womanly pain must be due to pelvic-floor dysfunction for that to be true, which we haven't proven. And my IBS was actually pretty mild when I got vulvodynia compared to five or so years earlier, so my theory doesn't explain why the pain started when it did.

Otherwise, I have no doubt. Diet affects my pain because the happier my gut is, the less my muscles feel obliged to rein it in. The good diet I arrived at after months of trial is low on major digestive culprits, including gaseous wonders like beans and broccoli. And after I went off gluten I no longer regularly went half a week between bowel movements.

Poop as a cause makes vulvodynia sooooo much sexier. And I'm not sure that seeing the gastroenterologist will reveal anything I don't already know. I'll write more about that in a future post. I've been thinking of you all and hope you're feeling good.

Wednesday, November 4, 2009

Ice Skating & A Glimmer of Acceptance

I've noticed that I'm getting more skittish about my pain, more afraid of it so that I've started moving my body differently or avoiding certain activities. I don't randomly start doing the Twist (something I used to do a lot, actually), and I've even stopped walking to work, where I walk around all day (makes a lot of sense). And when I see anyone wiggling or jiggling, I immediately "feel" how painful it would be for me to move that way.

Not a good brain state.

My dad has been ice skating recently to get ready for his yearly turn as ski instructor. I ice skated when I was younger, working my way all the way up to the dreaded Axel, the dreaded camel spin (I still hate that thing), and the beginning of double jumps. So when he asked me if I wanted to go the other day, I said no.

Then I said yes. Then I said no. Then I said yes. Then I said no.

Then I said call me tomorrow morning and I'll let you know.

When I woke up the next morning I hurt too much to go. Then he called me and I said I'd be ready in twenty minutes.

So we went and had the whole place to ourselves -- the bizarre overscheduling of ice time at the local rink (score!). I started with a few times around the rink forward, then carefully turned myself around to do back crossovers, one of my favorite things to do in the entire universe. It was wonderful. There is nothing like zipping around the ice backwards really, breathlessly fast. Especially when there are no small children around.

And, of course, my pain didn't stop me. It was just like every day at the restaurant where I work, where, yes, it hurts. It hurts all the time, and then to walk or bend over or not be able to go to the bathroom this moment hurts even more. But I don't shy away at work because of it. I walk constantly, lift things, pick things up, hold my pee during Sunday brunch. I make it every day.

Soon I was twelve again, crouching down to the ice to shoot the duck -- skate in a tuck with one foot sticking out. I tried some meek spins, did some meek jumps, did a lot of 3 turns (one-foot turns), and did back crossovers until I felt like my legs would crumble. I fell splat on my butt doing back crossovers through center ice -- and my bladder didn't break and I got right back up and started again.

We weren't there too long, but I did it: I got physical, experiential proof of my body's constitution. I am not broken. I have pain, and I'm understandably scared to do something that pains me more -- but what's worse than the pain is getting skittish about it. My body is still able, and I need to keep showing myself its abilities.

Pain is scary. Sometimes when I can't pee right away, I feel like something inside me is going to split. Sometimes the vulvar burn feels like actual damage. And those signals to my brain probably aren't inaccurate. There probably is something so wrong down there, with the nerves or otherwise.

Oprah was talking about living outside the box -- contrary to pun, I don't feel like I have a box, a comfort zone, to live in anymore. But I can't fix it, so the pain sticks around and I remain in a land I'm uncomfortable with. Living outside the box may be good sometimes, but in general, unchosen, it's no life. I've got to get comfortable with my pain.

I can't yet say whether pain is just a state of mind, whether I can simultaneously feel it and transcend it like a Buddha. But I see now that I have to just let it be as it is. It's not making any moves to leave, and hiding from it doesn't get me anything but sadder. I may not be able to do absolutely everything I want to do, and I may not be able to do some things absolutely every day, but I have to make sure I keep doing the things I can do in order to stake out a place for me in life. I can't let my pain take my back crossovers from me.

Tuesday, October 27, 2009

Feeling Better

I'm feeling better! Mentally! I'm up to the full dose of my brain meds and I DID LAUNDRY last Friday and still feel good, so that means this is a definite change. Sigh. I think I have a crush on Trileptal. ♥blush♥

My psychiatrist told me Trileptal didn't get FDA approval for treatment of bipolar disorder but that there's a subgroup of us who respond to it. I seem to be one of those people. It makes me feel so lucid! It took a little while, but it kicked that mood out of my brain entirely. I'll probably still cycle up and down while on it, but I won't get nearly as bad as I was without it.

Going back on meds proves to me (yet again -- but yes, I still need the proof) that having bipolar disorder is like having Tourette's or a seizure disorder. It's involuntary. I can't control it -- or can't any more than someone with Tourette's, which isn't very much. They can try to suppress their tics for a while, but then they just have an outburst later. I can try to control my mood for a while, but it all builds up and breaks the floodgates eventually.

Why is that so hard to understand? Why do I still think I'm to blame for my disorder? Guilt, guilt, guilt, self-image, blahlbhalbha, etc.

It's surreal, the meds, because now -- all of a sudden, I understand how people can keep living! I understand why we aren't all lined up to take our turn jumping off the bridge! Wow, living is kinda easy when you're not hellishly depressed!

My psychiatrist also mentioned that "Reverse SAD" (Seasonal Affective Disorder) is an actual thing that researchers are starting to write about -- getting depressed in the summer, not the winter, or in my case getting moodier and ending each summer in a mind-melting mixed episode. Affirmation! I hate summer! It sucks! I'm going to winter in Alaska and summer in Chile with the penguins. F♥ck the sun.

My pain is the same. Eh, nothing new to say. I've got an appointment with a different urologist on November 5, a woman who also treats pelvic pain. I'm hoping for a good visit -- a holistic visit, taking into account all the stuff I experience. Someone who will listen and help me. We'll see.

My mom and I were just discussing whether these "hemorrhoids" I have aren't something else. I do have them (tasty conversation here), but they only poke themselves out once in a while and that area down there -- a little below my tailbone -- hurts intermittently whether they're in or out. Ah, the science of hemorrhoids. My mom and I were impersonating them.

So I'm wondering if I have some spinal problems and/or pudendal neuralgia going on. If I do, whatever. Right now, the butt pain is really not that bad. It hurts to sit square on my ass, sometimes, but I'm hardly ever in a situation that requires me to do that because I'm a waitress. And sometimes it really hurts to stand up from sitting. And sometimes it hurts to laugh, etc., but it's nowhere near as bad as the constant, torturous, singeing burning up front.

So I will mention it to the urologist, see a gastro, see if it's identifiable, and if not, see a spine guy. It would suck to have more mystery pain, and it would suck especially if it got worse and started collaborating in a serious way, but right now I'm so much more concerned with my coochie that this additional disturbance is no big deal.

Plus, if it is a nerve problem, it might be the cause of my other pain, which might lead to better treatment for it. I have yet to start the Neurontin as I'm enjoying this lucidity too much and don't want to drown my head in meds...♥blush♥ Trileptal...but I'm looking forward to seeing if it helps my pain at all.

Wednesday, October 21, 2009

Waiting

I told my psychiatrist about how my main roadblock right now is that I don't see a philosophical reason for living. He replied, "There probably isn't a philosophical reason for living. It has to be based on something else."

So the problem is actually that I don't have anything to base living on right now. I can't defend it philosophically and that was my last resort after health, social life, aspirations, spirit, etc., etc. fell away.

And after hope went ptttthbt, finally and disastrously.

What do you base life on after everything is depleted? I want to die so why don't I? When it's easier, I have an executive decision against it. When it's not so easy, inertia is my savior.

I have to be frank. These diseases make a lot of people want to die. They can and probably have been terminal. That is not okay and we need to be paying attention.

I wish I had advice on how to get through this but seconds are grating and I'm having a really hard time calming down. So I'm just trying to remind myself that even if each second hurts -- mentally, physically, or both -- it is still another second passed towards a time when I might feel better at least mentally, or towards a time when I can base my life on something again. In other words, I'm waiting.

Friday, October 16, 2009

Follow-ups

The MRI came back negative for problems in my urinary tract. I have a small fibroid but I don't even have to see my gynecologist about it. So I told the nurse who called me with the results that I really think I have interstitial cystitis and I'd like to be treated for it. I also mentioned that if I can get pain meds, I'd welcome them as the pain often makes it hard to do things like go to work in the morning or focus while there.

First I tried to make an appointment with another urologist to get a second opinion on IC, but the receptionist said I had to ask my doctor to release me before I could do that. LOL. So I thought first I'd try my urologist again because it might save me an appointment or at least an examination -- and I told the nurse that I'll seek a second opinion if he's not willing to go the IC route.

There are several meds for IC, but one main treatment for IC is diet. My good diet seems to be stricter than the IC diet (PDF) -- for instance, sugar is a horrible thing for my cooch. However, I am on a horrible diet right now because it's so hard to feed myself. I've even been eating gluten, which is good to do once in a while because when you don't have an anti-gluten diagnosis like Celiac you start thinking it's all in your head. But no, my body feels like it's 90 years old again and my intestines hate me.

My psychiatrist was great. When I started going into bipolar lingo, he didn't freak out that I knew about my condition (I love that). He also already knew about vulvodynia and interstitial cystitis and posited that they're both due to an inflammatory condition medicine has yet to define. He believed me when I said gluten gives me pain and again said medicine isn't there yet. So much better than my last psychiatrist who told me my gluten pains were due to a coincidental three-week flu ;)

The psych said Neurontin isn't so great alone as a mood stabilizer but that it enhances other mood stabilizers. So he put me back on Trileptal -- yay, my favorite! seriously! -- and gave me Neurontin on the side, plus a few Ativan for the MRI.

I started the Trileptal and I'll add the Neurontin in a few days. I'm looking forward to being back on meds -- Trileptal always made me feel more lucid, and I really need that right now. The weather's cloudy and so am I.

I am out of my crazy mixed episode finally. I can't believe a brain can do that to a person! But I'm still pretty depressed, and the issue is whether I have a future with pain. It's something I never really had to face while in the pleasant state of denial or the heat of anger. But now it's hitting home that the pain could be interminable, and I don't know what to do with that.

I just don't really see how a future with pain works.

But I have to try not to think beyond the present day. When I think about how I'd like to find someone and have children, have a sex life, do things other than tend to myself, not wrestle with pain every day, I start to panic. I don't see how those things are possible. And I want to write something uplifting about focusing only on today, but I can't right now. I am too scared and there's very little to reassure me.

I have more thoughts but they'll have to come later.

Friday, October 9, 2009

Sisyphus and Her Ball of Theories

I don't have syphilis! At my dermatologist follow-up, they checked for syphilis since my biopsy result (plasma cell vulvitis) sometimes comes along with syphilis and that test was missing from the initial round that got me the vulvodynia diagnosis. But I don't have it! And even more wonderfully, I don't have to tell everyone I know that I have syphilis!!!

They didn't check for Sisyphus, but I think that's because it's self-evident.

The appointment went okay. My dad went with me to be the heavy, and he wore a suit specifically because people react differently to suits. I thought it was very James Bond of him.

We talked for a long time with the resident, painting the picture of how the pain has devoured my life and there are no answers anywhere. And even though it didn't result in anything at all, it was really good to have an extended discussion about it with a more-or-less doctor. She pointed out that if my pain were due to an infection, it would probably have been killed off by immune system by now, or, if my immune system is compromised, it would've become systemic. It would have changed; if it stuck around, there would be additional symptoms, a fever, anything. I've thought about that before, and she's right -- or, probability is in her favor. That they still tested me for syphilis, that other doctors have treated me for infections -- an infection isn't impossible, but it shouldn't be the main theory.

The real doctor got the story from the resident and came in repeating "We have very few options." She gave me a sample of Vusion, a topical ointment of zinc oxide plus an antifungal. I tried Desitin (similar) when this thing started and it just made the area more irritated, so I haven't tried the Vusion yet. She also said that Protopic (tacrolimus cream) might help, but I explained that I really don't want to try another immunosuppressant without pain meds, and she wasn't about to prescribe those.

I kind of understand why she wouldn't give me pain meds when I remove the urgency of my situation and step into her cold, cold heart. She said I should go to pain management for that kind of treatment, and that's fine. She's scared of making an addict of me.

What I don't get is do these people really think I (anyone) won't go find some kind of pain relief by myself? The thing is, I WON'T. I'm a huge dork in that respect. But lots of people will, and I'd think it'd be better to get addicted legally, if nothing else.

About limited options, she's right to an extent. Plasma cell vulvitis is a rare diagnosis, and steroids are the first and most hopeful treatment for it. However, I've read about people getting surgery to cut out the painful skin, just like with vulvar vestibulitis, and I figure there are probably other things dermatology can do for me if I really think this is a dermatological problem. So the doc was being a little abrupt, but whatever. Used to it.

But she did mention something I've wondered about -- that the biopsy result could've been totally unrelated to my pain, or that normal skin could biopsy like mine did, with an abundance of plasma cells. And frankly, I don't think this is a dermatological problem. It hurts when I cough or laugh, it hurts to walk, my bladder can't get very full before I run squealing to the toilet, etc., etc. If there is a skin component, it's a lesser player than whatever is happening inside.

Then I realized that I could probably sue the urologist for continuing the cystoscopy after he saw I was in so much pain, and it dawned on me that maybe he isn't the best doctor to be treating me.

So I'm going to get a second opinion on interstitial cystitis. Even if I don't perfectly fit the description, those meds, unlike pain meds, are not addictive, and there's no reason I shouldn't get to try them. And then I can go back on a tender-to-my-pelvis diet and work on repairing my tubes and niches.

I'm reconvinced that I do have a problem definable as interstitial cystitis, and for some reason, that gives me hope. It reminds me of the gains I made with my diet changes last winter -- it reminds me of how the vulvar pain receded on that diet and how my bladder pain improved as well. It's a hard diet to keep, and it requires hope above everything else. Veggies, rice, meat. But I know if I can do it I'll feel better.

In the meantime, I am eating like the SADdest American possible in preparation for my MRI. I figure, if it's anything seeable, I might as well make the bulb glow :)

Monday, October 5, 2009

Not Shutting Up

Someone posted a nasty comment on the most recent post over at Life with Vulvodynia, accusing Quinn (and me) of being a pity-party blogger and of spreading negativity about our disease.

So, first, WHY would someone drop a comment like that on the blog of someone with SWINE FLU AND AN IMPENDING WEDDING?!?!? DO NOT LISTEN TO HER, QUINN!!!!!!!!!!

But more importantly...you know, I wrestle with this too. If you look back through my posts, you'll see that they have gotten a LOT more negative (and a lot less funny-attempting) over the past three months or so. I spent almost three years fighting vulvodynia with everything I had, seeing doctors, taking medications, taking supplements, changing my diet, etc., etc., etc. I can't speak for Quinn, but as far as I was concerned, I NEVER accepted my disease as permanent. EVERY TOMORROW I would wake up without it.

Denial? Maybe.

As I've lost my mind over the past month (with bipolar disorder as collaborator), I've been wondering where CRAZINESS fits in the stages of grief:
  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance
Yeah, I'm DEPRESSED.

I'm so depressed that I have never ever come close to this level of depression before in my whole bipolar life. I'm so depressed that I can't begin to tell you how depressed I am. To say that everything has lost meaning doesn't even touch it. I do not understand the point of human life anymore, and if I fell into an endless black pit right now I wouldn't see the difference.

If Quinn's (anonymous) commenter has a problem with that, so be it. Maybe she's not there yet. But this is how vulvodynia is for me, RIGHT NOW, and I have a right to tell the world how it is. I'm not spreading negativity; I'm not suckling negativity. Quinn and I can't tell tales of recovery because WE AREN'T THERE YET.

I expect that someday, I will climb out of this trauma mind and move on to a better state. I will accept my vulvodynia. I won't stop seeing doctors, and I won't stop looking for an answer. I DON'T believe vulvodynia is permanent. I believe, in fact, that it has a TANGIBLE source that someone someday will detect, even if not in me. But in order to detect it, WE NEED ATTENTION, and in order to get attention, we need people to know how very, very shitty this life can be.

Because otherwise vulvodynia is exactly what Quinn's commenter thinks our depression is: discomfort, to be dealt with by bucking up, a.k.a. shutting up.

Nuh uh, honey. I'm not shutting up. But I do hope that you, and all of us, find our answers, and if you ever need support you can write me.

P.S. Quinn's blog is the reason for this blog.

Friday, October 2, 2009

Happy Anniversary, Again

When I started this blog a little over a year ago, I didn't really expect that I'd be saying Happy Anniversary again.

On to Year 4! And I know I'm still relatively young in this vulvodynia/pelvic-pain thing. Many e-mailers and other bloggers have been at it three or four times as long, or for more than half their lives. Some "got" it while still in their teens (some *are* still in their teens) -- and one while she was just a kid. That is just baffling. It makes me angry beyond words, and I wish I were convinced that someone is paying attention.

Thanks for your comments and e-mails. Your support over the past few weeks really helped. I haven't felt too communicative and I'm coping by ignoring reality. But I will write back at some point, and I've been thinking of all of you.

Someone else trafficked a couple of Vicodin to me the other day. I took one while my pain was at a pretty normal level, and it seemed like it might've smoothed the edges of it a little. That was an improvement over the last time I tried it, during a moderate flare, when it didn't do anything. A friend said you need to take Vicodin regularly to get ahead of the pain, but my dad says that isn't the case for him. Who knows.

Anyway, I waited about an hour and a half, two hours and then took the second one. That took away a lot of the pain, though the central, most basic part of the pain was still there. But it was so nice to get a glimpse of not being in pain anymore. It was nice to sense that there are other non-vulva parts of my body down there, to remove the starburst of my pain so I could see the rest of me.

Then I conked out.

So many people have offered to bring me drugs, it's hilarious. Apparently I'm the only one who can't get them legally.

I scheduled the pelvic MRI for October 14, a short-tube!!!!!!! MRI my dad located. I follow up with the dermatologist on Tuesday and after my experience with the steroids, I'm going to refuse to do any more topical immunosuppressants without pain meds. Really, the fact that the steroids made my pain worse suggests to me that my immune system is doing something to FIGHT the pain. I THINK MY PAIN IS DUE TO AN INFECTION. It's Occam's Razor and it makes the most sense given how it started. It fits with the food triggers (pH changes down there could promote or suppress creepy crawly stuff, according to non-doctor me).

Maybe it's syphilis. MAYBE THAT'S WHY I'M CRAZY. Because, according to some, being in pain isn't a legitimate crazy-trigger.

And fine, if it's not an infection then just figure out what it is. Why doesn't anyone just figure out what it is! You can't tell me it's not figureoutable! Or if it's really not, then give me something to IMPROVE THE QUALITY OF MY LIFE. I DO NOT HAVE A LIFE RIGHT NOW. WHY DOESN'T ANYONE CARE. I'm seeing a psychiatrist on October 13 and I'm going to ask to try Neurontin -- it's a mood stabilizer as well as a common nerve-pain med. Then maybe we can try some tricyclic antidepressants, which can also act on pain. I don't think any of these will work because, one, Trileptal (same kind of med as Neurontin) didn't seem to do anything when I was on it, and two, I THINK MY PAIN IS DUE TO AN INFECTION. But anyway, at least we can try.

P.S. Sorry I keep throwing capitalized tantrums. I just feel so desperate. You know the Fates? They draw out the thread of life, and sometimes they draw it very thin.

P.P.S. Happy Anniversary.

Thursday, October 1, 2009

Friday, September 25, 2009

Responsibility

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

Misery

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.

Why?

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
Alive
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
lipping
flowers
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.

I DO NOT WANT TO PUT THIS STUFF ON MY COOCH.

AM I WRONG?

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 like...like 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

Clam-A-Rama!

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!

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!

Friday, July 31, 2009

Vaginomancy

My friend Greg linked me to this....



YES! YES! I DO HAVE NEED OF IT!

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...

ANYWAY I WAS JUST HANGING OUT IN MY COFFIN...

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

Appointments

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
EXCUSE ME? Dear Doctor, MY SYMPTOMS ARE NOT UNSPECIFIED. OR SINGULAR.

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?