Mad Peach

Diane's Story: Success with Interferon Injections (Guest Post)

2012-02-06T14:24:00.000-08:00

This is a guest post from "Diane," whose pelvic pain has responded positively to alpha interferon injections. After relocating from New Jersey to Chicago, Diane had to stop the interferon treatment because she couldn't find a doctor who would administer it.

Diane sent this email last fall and included her full name at the botton, and I wrote back to her a couple times to find out if she wanted me to post her story anonymously. I didn't hear back, so this post is anonymous, and I am so thankful that she decided to share her story with us!

As always, if you'd like to write a guest post about your experience with pelvic pain, please email me at madpeachblog AT gmail.

Previous guest post: Hannah's Story: Success with Yeast Treatment

Diane's Story

Hello all who are suffering this hell, I am sitting here with the worst burning I have felt in years. I have seen at least nine doctors so far here in Chicago, and they all just want to "refer" me to someone or something...else!! This time, because my husband and I attempted intercourse after many weeks of abstinence - the typical burning after turned to deep burning and sticking way into my pelvis - I think it may be a UTI or IC. By the way, I have had vestibulitis since childhood, when I could not insert a tampon because of the pain.

I was fortunate enough to have a wonderful ob/gyn in New Jersey who suggested I try alpha interferon injections around the vestibule...don't cringe, they weren't really painful at all - and I had MIRACULOUS results, so much so that we sent him a box of cigars the following week. I knew it worked when I was able to wash the vulva in the shower, I was always terrified to touch the area, but I noticed it felt no pain, almost numb - I was overjoyed!! Now don't get me wrong, these aren't suggested for everyone with vulvar vestibulitis, but since mine was secondary to an HPV infection (though I never had warts), the doctor believed that my pain was from VIRAL causes - similar to Hannah's story...oh, interesting too that I was also diagnosed with fibromyalgia since the diagnosis of v v.

The relief lasted for at least 6 years, though I still had entry issues due to vaginismus, but no burning at all...I want you all to know that there ARE some treatments that do work - please read the articles on interferon and vestibulitis. It is very promising - and I am living proof that it does work, and hardly any side effects at all....they have actually found out that women with vestibulitis are insufficiently producing their own interferon (anti-viral), therefore, the dosing of alpha interferon is a viable treatment.

My problem is NO ONE will even "touch" interferon out here....they keep prescribing lidocaine and antidepressants - but I know better. Ladies - the interferon was helping - it offered UNBELIEVABLE relief. I am actually considering flying back to New Jersey just to have another course of injections.

Thank you Esther, for your blog, and god bless everyone of the brave women who are suffering from this awful disease. We must keep on sharing our own information with each other, so we can help each other get better.

Have a wonderful day! I need to get an ice pack and some anti-inflammatories...

Anyone tried a kneeling chair?

2012-01-30T08:52:00.000-08:00

I'm getting really frustrated that I can't sit at my desk at home without my pelvic pain starting to flare -- even for a few minutes. I end up kneeling on the chair, and within a half-hour or so I give up on whatever I'm trying to do.

I have a cushion but I haven't found it really comfortable -- this one from IC Network. Maybe other cushions have worked for you guys?

Lately I've been fantasizing about getting a kneeling chair. I've read reviews online that say kneeling chairs have really worked for back pain, but back pain can be an issue of bad posture whereas pelvic pain is exacerbated by touch.

My pelvic pain is also exacerbated by the amount of pressure on my butt/tailbone. I had a rocking chair that had a good slant towards the back, and literally within a minute of sitting in it my pain would start building. Rocking chair is now gone.

I'm wondering if the kneeling angle will take enough pressure off my butt to keep my pain from flaring too much while I sit. And maybe if I try one out in person I'll know within a few minutes whether it's worth a longer try. But has anyone tried a kneeling chair? Did it help? Any specific recommendations? Thanks!

Hey There, Cupcake

2012-01-25T19:59:00.000-08:00

from Facebook

2012: The Year of Self-Respect

2012-01-19T20:26:00.000-08:00

My friend has been trying online dating, and so far it's been horrible -- pee-pee-pic horrible. Pee-pee pic as in "Here's a picture of my pee pee, now will you date me?"

Has the pee-pee pic EVER WORKED?! If you are a woman who was successfully wooed with a pee-pee pic, please comment. I don't think you exist.

My friend confessed to me that she kept texting with Pee-Pee even after seeing his pic, and then she said, "What, do I not have any self-respect?!"

AN IMPORTANT QUESTION for us all.

Just a week or so earlier, I had given my notice at my favorite job ever. How can a job be your favorite job ever when it leads you to write your self-esteem manifesto on your vulva blog?! But it was. But for reasons cited in the manifesto and its followup post -- and for reasons that would make a great blog by themselves -- I quit.

NO MORE DRAMA.

I tried to rise above the bullshit for months and months. Keep it out of my system. But then my head would start feeling like my brain was going to poop itself out through my nose -- and I'd realize I was still snorkeling along inside the bullshit. Then the bullshit got brined and I was snorkeling inside pickled bullshit.

Then James Altucher, on his blog, answered the question "How do you stop caring what other people think about you?" with

"So the fastest method (the slow method is starting from scratch and figuring out why you care so much, etc which could take years) …

"The fastest method is only being around the people who appreciate you and respect you and like what you say right now."

I thought, "What?! I have permission to just GIVE UP?"

Because I had the idea that I'd learn, learn, learn enough to be able to handle the nastiness, and that I should stick it out because it would make me a better person. I think that idea is pretty common. And I think it's bullshit. If you're in a briny environment, you can't learn. I deserve a better workplace. Everyone does.

THAT is what self-respect is about. Knowing your limits and responding to them. No pee-pee pics! No pickled bullshit! I quit!

When it comes to the vulva, self-respect means, dear lord, eat better. I just don't have the will, but I know how much better I'd feel if I did. This year, I plan to blog about the food issue a lot. When I blogged about it, I ate better. Maybe it'll help. I'll even blog about how awesome the cafe mocha is up the street, and three hours later I'll blog about my full-body cafe-mocha meltdown. Mm!

This is what's causing my vulvodynia. I'm serious.

2011-12-01T13:47:00.001-08:00

Read this. Published September of this year. Researchers created vulvodynia in mice by repeatedly giving them yeast infections and curing them.

This is what's causing my vulvodynia. This has been my instinct all along. I had two bladder infections in the six months prior to vulvodynia and countless others before that. I never had recurrent yeast infections, but I think the principle holds: recurrent infection leads to inflammation which leads to chronic pain.

My cooch is still stinging, literally, from infections long gone. This is probably why eating well helps, and why treatments involving the immune system are successful at reducing or eradicating pelvic pain.

Onward!

P.S. I'm keeping up the two lame posts before this one for context. It all started when I read this post about how prolotherapy (a treatment involving the immune system) is making a fellow v-girl's pain go away. First I flipped out about having to add yet another treatment to my list. Then I got mad at chocolate. Then I posted in a vulvodynia Facebook group and ranted in an email to a vulvodynia penpal. Then I decided to try the probiotic yeast reader Hannah says helped her. Then I googled "saccharomyces vulvodynia." Bing. O.

Chocolate is the real evil

2011-12-01T12:06:00.001-08:00

I think chocolate is the major offender, not sugar alone. I made some french toast and my cooch didn't even wince at the syrup. But as soon as I eat chocolate the lady gets angry. I'm not even a chocolate fiend. I just eat it because it's there and I hate not being able to eat it.

Is there anything that doesn't cause vulvodynia?

2011-12-01T11:43:00.001-08:00

I appreciate receiving emails and blog comments and reading other blogs and the posts in the vulvodynia groups on Facebook. But really, every time someone figures out what caused their vulvodynia, it's always something different. Every time someone says a treatment is helping them, it's always something I've never heard about before.

The more I read, the less helpful it all is. I have no idea where to start. Is there any doctor who would consider all these causes and all these treatments in assessing my pain? The doctors I've visited have been extremely specialized and unwilling to consider diagnoses and treatments outside of their specialty. I think that is universal.

I don't want to doctor hop again. Where do I start when there are thirty treatments that MIGHT help and no doctor willing to try them all? When there are hundreds of possible causes and no doctor who is unspecialized enough to consider them all?

It's a crapshoot, and so I gave up. But all that frustration is still there. I reorganized my apartment so I don't have to sit at my desk. Just the thought of getting a desk job lights my feet on fire. Waitressing keeps my pain pretty low. I am broke but at least not on fire.

But I feel like an asshole loser for being a waitress after all the education and work experience I have. It's not only because of vulvodynia -- I like waitressing and I hate being at a desk. But I have never felt so trapped in my life. I feel like I've tried everything and nothing works for me mentally or physically except waitressing. I feel like I'll be stuck here forever, broke and lame and unaccomplished.

Then there's the sex. I dream, dream, dream of the day that I'll have pain-free sex again. It's going to happen. I just need to figure out where to start. How.

When I am less frustrated, maybe I will make a list of all the treatments I've read about. I'm sure this blog is that list, more or less, but I'm going to put them all together in one place just so I can get more frustrated.

No sugar! No sugar! No sugar!

2011-11-18T03:29:00.001-08:00

I was awakened at 3 a.m. this morning by a screeching coochie. My period is approaching and I've eaten more than a wise amount of sugar the past few days -- the combination of which is always horrible burning pain.

Pre-period without sugar? Smooth sailing. With sugar? Torture.

So, no more sugar. My period should be here in three days -- and if I stop eating so much sugar, my expectation is that my pain will go DOWN despite the usual premenstrual madness that vulvodynia brings.

You'd think that enough times through this experiment I'd be convinced that I need to avoid sugar, but no -- is it optimism? Stubbornness? Am I just hard-headed, or am I a brave champion of "no, vulvodynia will not dictate what I do in life"?

Mostly, I'm an idiot.

No more sugar, especially after ovulation!!!

Note: the sugar I'm talking about is what I'll term "unnatural sugar." Meaning sugary pre-processed things, including those sweetened with "cane syrup" and other synonyms for added sugar. Sugar from fruit doesn't bother me, or I don't think it does. That will be my next sugar experiment, starting December 10, just in time for avoiding Christmassy sugar...

Doing better for myself

2011-11-10T04:53:00.000-08:00

After a particularly long woohoo a few days ago, my right hip started hurting badly. It was shimmering with pain with the slightest touch and painful to move.

So I did some leg exercises and it started feeling better. Most movements are not painful. It still shimmers to the touch, but I'm thinking that will fade with more exercise.

It reminded me that I can take an active role in making my pain better. Something I've been avoiding for a while because I haven't wanted to think about my pain.

So I am making a plan to resume taking an active role in caring for my body. Here are my thoughts so far.

#1: Do Exercises Every Day

The central exercises will be the simple leg movements and stretches I've done to soothe the pain in my hip. These will be a melange of high-school track + physical therapy + Jane Fonda. Because they're hard to describe, I'll try to find a website that describes several of them for me.

#2: Eat Well

I've written tons on this blog about dietary habits that reduce my pain. I will return to those habits and again try to home in on the kind of diet that most helps me.

Plan of Action

I am going to start with the exercises because they are a one-time daily activity. Self-discipline is a muscle -- the more you use it, the better it works. It is also universally applicable -- if you develop it practicing one task, you can apply it to any other task and it'll perform just as effectively.

So if I start with one activity per day, I can develop my self-discipline and use it in a month or two to start eating better.

I will also start with exercises because it allows for experimentation. If the only change I make for a month or more is doing the exercises, I'll get to see how much the exercises help my pain.

I will probably wait until after the holidays to start eating better. I could just make exceptions for Thanksgiving and Christmas -- which I've done in the past -- but my eat-well energy is pretty low these days. If I develop some self-discipline before changing my diet, I have a better chance of succeeding.

These are the two biggies in feeling better. I don't have health insurance right now, but these would be some of the best things I could do for myself even if I could afford health care.

It took me 20 minutes to write this blog post when it usually takes me an hour or more. You'll note that this post is equally effective, if not as amusing for me to write. Maybe I should develop some better blogging habits to infuse the playfulness with some more useful stuff. I do get feedback that others appreciate the vulva humor, so I will keep it in my repertoire.

Slutty Costume Rationale Picture Book

2011-11-07T16:12:00.000-08:00

For a long time, I couldn't figure out why females are the ones who wear the feathers in our culture.

Shouldn't men be showing off for us instead?

Then I realized that men are always ready for sex...

...and that if women want to have sex, they have to let the men know they're ready.

I was in New Orleans for Halloween, and I felt like I was supposed to demonstrate sexual receptiveness...

...even though I have a boyfriend...

...and tend to shy away from tourists trying to cheat on their wives.

What makes us women compete to be the sluttiest of them all?

Maybe we think every man is Johnny Appleseed, endlessly seeking to sow...

...and that if he senses we're not up for sex...

...he'll wander away.

Sometimes when my cooch hurts, I don't want to see my boyfriend.

But he respects my pain...

...and I'm almost comfortable saying I'm pretty sure he wants to stay with me.

So I want to learn to go and spoon...

...without feeling like things are incomplete.

Hannah's Story: Success with Yeast Treatment (Guest Post)

2011-10-11T13:26:00.000-07:00

I get occasional emails from readers who are looking for support or who just want to share their stories with someone who also has pelvic pain. The most recent email I received, from a woman I'll call "Hannah," dovetails nicely with my last post, in which I discussed my failed probiotics experiment. Hannah's story is a much more encouraging one than mine, so I asked her if I could share it with you, and I'm so happy she agreed. What follows is Hannah's story, in her own words.

If you'd like to share your story through my blog, or if you'd like to write a guest post about a pelvic-pain topic, please email me at madpeachblog [a] gmail.

Hannah's Story

My vulvodynia story basically started after I began having regular sex about 10 years ago. Soon afterwards I started to haverecurrent thrush infections and sex was ALWAYS painful. Even when I treated thethrush, the pain, redness and irritation didn't seem to go away entirely. Sexhurt and I was left with a burning feeling for up to an hour afterwards. Abouteighteen months later I had a pap smear which identified CIN1 and HPV cells.CIN1 is low grade abnormality which needed to be monitored and eventuallycleared itself without needing treatment. The vulvodynia and thrush infectionscontinued, even when my partner used thrush treatments as well.

After a few years of this I also began to have bacterialinfections and was mixing antibiotics and thrush treatments and not getting anybetter, in fact I was getting worse. Treatment would provide a few days ofrelief before the symptoms reappeared. I had countless swabs taken. Many timesthey would come back with thrush or bacterial infections but just as often theswabs would come back clear even though my bits were red raw, inflamed and hurtto even touch.

Most doctors would tell me the only treatment for the thrushwas over-the-counter thrush treatments and to keep using them. One doctor listenedto me carefully describing all the symptoms I'd noticed and prescribed me alow-dose antidepressant for vulvodynia – just like Charlotte in 'Sex in the City'.Things didn’t improve. Another doctor prescribed me steroid cream which onlyaggravated the symptoms.

All the irritation and infections led to me getting twoBartholin's cysts - one either side. I had to have one of them marsupializedafter it grew so big I couldn’t sit down properly. I still have one cyst but itisn't causing me problems.

Because of the vulvodynia and infections, I had to give upusing tampons as they were painful to insert and remove and seemed to increasethe chance of a thrush infection. I had to stop eating yoghurt (especiallynatural varieties), bread, citrus fruits & pineapple juice. One time alarge piece of skin peeled off my nether regions after eating too much citrus,it simply made my urine too acidic for my own skin to handle. I avoidedexercise which would make me sweat unless I could shower straight away and had difficultyriding a bike due to the discomfort. And obviously, I avoided sex as much as Icould.

I should also note that over this time I was also sufferingfrom chronic fatigue that has even made working full-time difficult and ruinedmy social life. The chronic fatigue was from glandular fever, CMV and Barmahforest infections. My immune system was completely battered and worn out.

Eventually I came across an article that said thrushinfections can clear up without treatment. That was when I stopped usingtreatments for the thrush and bacteria. I stayed away from things I knew madethe vulvodynia worse and stopped treatments. Surprisingly it seemed to help. Ihad gotten to the point where treatments were causing as much, if not more,irritation that the mysterious cause itself.

Since I first started experiencing vulvodynia there haveonly been two times I can remember that I have experienced relief from mysymptoms. The first was after a major cold sore attack (on my mouth) and I wasprescribed anti-viral drugs. There were one or two months were I was symptomfree before the pain and irritation returned. I should note here that I do nothave genital herpes, I have been tested countless times and don’t experienceblistering, but the drugs must have helped my immune system or something.

The next time I had relief from symptoms was during thecourse of Gardasil - a vaccination against HPV. For some reason my symptomswould disappear within days of the shot and then return before the next shotwas due (Gardasil is a three-shot treatment over a number of months). When Irealised the connection I began to think I had some sort of virus that wascausing all the issues but as I’ve said, nothing had ever been detected before.

When I found out I was pregnant, apart from the usual joysand fears, I was worried about whether I would pass something onto my childduring childbirth as well as how my bits would cope with the trauma of childbirthwhile they were already irritated. Thankfully I delivered a healthy childnaturally with the help of an epidural and didn’t even need stitchingafterwards.

My healthy child was diagnosed with dairy intolerance andsuspected reflux at eight weeks. She also had a case of oral thrush evenearlier than that from which I developed nipple thrush. Coincidence? Perhaps.But seriously! Also, the vulvodynia was present throughout my pregnancy andafter.

Only a few months ago I went to the naturopath for mydaughters intolerances. The naturopath prescribed me a probiotic: BioceuticalsSB Floractiv. Most probiotic tablets contain bacteria but this one contains ayeast: Saccharomyces cerevisiae(boulardii). This particular yeast can create ‘killer toxins’ that are safefor humans but deadly to other forms of yeast. I took one tablet a day for afew weeks and only experienced some minor constipation which was relieved bydrinking plenty of water and adding psyllium husks to my breakfast cereal. Allmy symptoms have disappeared and six months later I am still waiting for arelapse. But the best part is I’m finally having sex and enjoying it. “IT”finally feels the way Hollywood tells us it’s supposed to feel.

NOTE: I really really hope that sharing my storyhelps youin some way. Apart from the Floractiv there have been other changesthat I’vemade which have helped both the vulvodynia and chronic fatigue. Drinkplenty ofwater; add psyllium husks to your diet; cut down on dairy foods, sugarandanything that is processed; no caffeine (I’m super sensitive to itseffects);no alcohol; use plenty of lubrication when having sex, too much isbetter than not enough; go and pee straight after sex, if it hurts thenpee in the shower as the water will dilute the urine; if you do need touse a thrush treatment, use a low dose cream overa longer period of time instead of a pessary; get enough sleep,‘enough’ is adifferent amount for everyone.

So, are probiotics evil?

2011-10-08T11:49:00.000-07:00

Ever since I did a lot-lot-lot of reading about vulvodynia and digestive problems a few years ago, I've been coveting VSL #3. It's a heavy-duty probiotic used for a range of digestive problems, including IBS, Crohn's, and colitis.

You can get it over the counter, which I did, but the manufacturer recommends seeing a doctor because it's so powerful. (Much cheaper to try it myself.) It has about 110 billion live bacteria per capsule, compared to 5 billion in Fem-Dophilus and 50 billion in Ultimate Flora Vaginal Support, probiotics I had tried out before VSL #3.

The recommended dose of VSL #3 for IBS is lower than for other problems -- I think it's 2-4 capsules per day. I started off with one capsule per day, expecting to experience something explosive within a few days. I didn't, so I inched my way up to two capsules, then three or four over the course of a month.

Early on in this trial, I woke up with what felt like a UTI: bad burning centralized around the urethra that gets much, much worse upon peeing. I bombed my urinary tract with Cystex, cranberries, blueberries, and water, and decided to wait it out.

I waited for one week, then two. Finally, since I hadn't died yet, I figured I didn't have a UTI and that my vulvodynia was flaring instead.

The pain was very similar to the pain I had last winter, when I was sitting all the time and stressed out about personal problems. The pain was also similar to how my pre-period pain feels sometimes, so I thought maybe I was having a month of odd hormones.

As I went up on the VSL #3, the pain got worse. Sitting, walking, and peeing became hellish. I spent a lot of time lying in bed trying not to move. I took lots of Neurontin and Naproxen. At work, the pain just got worse and worse the more I walked around, and I'd hardly be able to sit down by the time my shift ended.

As I looked back over the month, I couldn't think of a single thing I was doing differently. It took me quite a bit of thought to realize that the only thing that had changed in my routine was that I'd started taking VSL #3. Really, who would think that probiotics are causing them coochie pain?!

A few days before my period, I skipped a day of VSL #3, and my pain was much better. Then I tried taking only one or two capsules, but my pain got worse again. I stopped the probiotic altogether, and my pain actually went DOWN for the couple days before my period started.

The one benefit I think I've seen from taking VSL #3 is that my cooch isn't hovering on the yeasty side of things anymore. But I don't know that I'll ever find out if it could help me more -- the pain was some of the worst I've experienced, and VSL #3 is one of the only things that's caused me that level of pain, along with antibiotics and too much sitting.

I don't know what to make of this. Did my urine become really acidic? If so, why did the pain get worse when I moved or sat and not just when I peed? The only digestive change I saw was that I got MORE backed up, and I finally started pooping regularly once I went off the VSL #3. Is it an allergy? Do my bacteria and the VSL intruders just not get along?

I've read a lot about "yeast die-off symptoms" and other symptoms from changing one's diet from bad to good. So if the pain was a side-effect of a "cleanse"...why was it so similar to antibiotic pain?! Why didn't I get the same pain when I went vegan or used other probiotics or took weekly doses of Diflucan? If I was experiencing a "cleanse," how long would the pain last? Can I hold my breath that long?

This experiment is particularly frustrating because I know if I took it to a doctor, his eyes would glaze over and he'd equivocate because he wouldn't have an answer and wouldn't be willing to help me find one. I have pre-emptive frustration with the doctor I tell this to. Which might not be any doctor.

There are so many theories out there. A woman claims that X cured her. Another woman, Y. Z, A, B, C... I know all of our bodies are different, but I have a hard time believing that there are so many versions of vulvodynia. I'd think that for a given set of symptoms, the possible causes would top out at like 4. The more I think about it, the more frustrated I get, so I've taken to not thinking about it at all.

I am trying not to get dumped on the equinox

2011-09-20T10:49:00.000-07:00

My blog posting spikes in September, every year. I also go into a mixed bipolar state. It's like being a violent fairy.

I do not want to get dumped because I am bipolar. Is Catfish going to dump me? I'm scared.

I've got to figure out how to short circuit this mood -- or at least how to avoid it next year. If I escape south in September, can this please not happen?

Or if I hoard nuts like the squirrels on my balcony, will I be able to relax?

Is this about scarcity and long nights?

I love fall. But it's not fall yet. Things are still green but there's less light to keep them alive. When everything is dead on the ground, I'll go march in the woods along the river in worship. Right now I am panicked that the sun is slipping away.

Self-esteem manifesto: real-life examples

2011-09-12T16:13:00.000-07:00

Here are two real-life issues holding my self-esteem to a slither. First, a look at my Pyramid of Esther's Esteem (PEE) from my first self-esteem post:

Self-Esteem Issue #1: Work.

Example A: I have a coworker who has a drool problem. She violates level 3, "others not spitting on me," in response to which I flail my ego around and want to die. I can't imagine a bathing technique that could clean me of her spit. Then I remember my pyramid -- kudos to historical Esther for drawing it -- and realize I've been thrown back to level 2, "observing basic self-care." So I "protect mental state" and "avoid evil people" by walking away.

Her spit fades with time, but the venom leaves a streak, and every time I have to work with her I wonder if it's Heart Healthy.

Solution: Metaphorical rain poncho with built-in (maybe metaphorical) defibrillator?

Example B: Complaining. All of the servers complain about all of the other servers to me, so I don't need a flowchart to know that they're complaining about me to everyone else.

Try as I might, I regularly succumb to the complaining. I don't want to be voted off the island, so I humor everyone's complaining and join in: "If I affirm what you're saying, will you not vote me off the island?" My most basic fear at work is that I will suffer the equivalent of death -- which, in this case, is not getting fired, but being gossiped about incessantly without my knowing. (As Drooler wasn't fired after arguing with a customer in front of the owner, job security is not my primary worry).

Solutions:
1. Say "I'm not gossiping anymore." Drawback: I'm seen as arrogant and suffer (secret) verbal obliteration.
2. Keep gossiping. Drawback: I want to incinerate myself when I do.
3. Nod, smile, and walk away. There are no drawbacks here. Everyone just wants to vent. They don't care what your response is as long as it's vaguely affirming.
4. Make it a game. I do this sometimes, feeding them and figuring out how fast the pipelines travel. Drawback: it might make me evil.

Self-Esteem Issue #2: I no longer get a self-esteem boost from comparing myself to others. At some point I realized I didn't want to be that way anymore. But I haven't found anything to replace it yet.

Example A: We like to think that brains are an ACHIEVEMENT and beauty isn't. No. They are both accidents. We are born with what we have.

Example B: My ecological footprint is small. Who cares? I've been exposed to cubic tons of green thinking, and many other people haven't.

Example C: I know lots of big words. See Example B, subbing in cubic pages.

Example D: The music I listen to/TV shows I watch/stuff I read/things I do/place I live are REAL, man. Everyone else is a joke. This one is one notch above...

Example E: Anything anyone has ever said in middle school.

Solution: Replace "compare oneself to others" with another way to derive self-esteem. I'm not sure what it is yet, but I think it might be pride. Not deadly-sins pride. This kind:

Pride in:
- Ignoring evil people
- Not being an asshole at work
- Using your design, talents, skills, and knowledge to do things that make you shine
- Not pretending that the niche you occupy that's given you everything you have, including your likes and dislikes, is the BEST NICHE IN THE HISTORY OF THE WORLD, MAN

More pride:
- Withdrawing from an argument when you know it's time
- Showing others you care about and support them
- Defining your personal ethos and following through on it
- Being brave

Pride is a new concept for me. I always thought it was bad, but bad pride -- the seven-deadly-sins kind -- is actually vanity. This kind of pride is standing-up-straight pride, and it won't float away when the apocalypse happens and everyone else on Earth has died and you have to find a way to preserve your self-esteem but there's no one around to compare yourself to.

Vulva fantasies

2011-09-09T18:14:00.000-07:00

In November or December 2009, I had some kind of virus and couldn't talk for a couple weeks. And as a waitress, I couldn't work because work requires talking.

So I laid in bed for 10 days straight. People say they get bed sores from less time spent sick in bed, but that didn't happen to me. Instead, my vulvodynia almost went away.

Needless to say, it was the fulfillment of a long-held fantasy. ALMOST. As life returned to normal, the pain came back.

But I still think back on those 10 days and wonder what went right. Here are some theories:

At least one vulvodoctor thinks guaifenesin is key to easing fibromyalgia and vulvodynia. Guaifenesin is an expectorant, which I was taking the first few days of the cold.
The only thing I was eating was toast. Literally only. Specifically Kinnikinnick's gluten-free bread, both with raisins and without. Buttered with soy-free dairy-free butter.
I spent ten minutes or so every day massaging my pelvic muscles and practicing relaxing them. (Through the vaginal wall.)
I spent most of my time lying down.

Since that time, I have fantasized about recreating the experiment to see if I get the same results. But what made my pain cool down so much?!

At the time, I thought it was the limited diet. Or maybe, fantastically, the guaifenesin. I knew the muscle massage would at least contribute something.

But I've tried limiting my diet. I've done muscle massage regularly for at least one period of time since. I haven't taken guaifenesin, but I think if it worked we would've heard more about it by now.

And now, having lived with vulvodynia for almost two more years, I think spending all that time lying down is what made me feel so much better.

So. I want to spend another 10 days lying down to prove it.

In fact, I think we should have a vulvodynia lie-in. Like a sit-in but lying in our beds to see if our pain levels subside. Like a virtual sleepover for 10 days.

Oh, I would love to do this. Sometimes my work schedule gives me 4 or 5 days off in a row. Maybe next time I will try a mini lie-in!

My self-esteem manifesto

2011-09-06T16:22:00.000-07:00

This is the course of my self-esteem over my lifetime:

(Discontinuous at 20 because that's the year I was diagnosed with bipolar disorder. I was very confused and unable to assign numbers to anything. The final value, at 31, is 1.)

And even though I can make an Excel graph of my self-esteem in two minutes, and play the flute like Wonder Woman (who is a secret flutist) after a month away, and draw good, and write good, and topple myself over with my jokes, and drill holes that don't suck, and work at being a good person every day, and get feedback that I am at least not a horrible person, and even though -- and you would think this would be a big one -- I have a handsome boyfriend with big muscles who apparently doesn't find me odious, I still can't stand being me.

Here is Maslow's Hierarchy of Needs:

Note Esteem at Level 4. First, a few observations about Levels 1-3 (made with a grain of salt as I realize there are many theories of needs):

- Illness is on Level 2 as "security of health." This is why pelvic pain can make your whole pyramid collapse even though it's not life-threatening.

- Sex can be unthinkable with pelvic pain, and it's on Level 1. This is why not being able to have sex due to pain can make you feel like you're hardly alive.

- I am underemployed and managing moneywise, but I still feel like if I even glance at a coffee shop I might cease to exist.

- My workplace suffers from chronic bitchfest. I'd love to write a whole blog post about it and how it is rotting my self-esteem, but that's for later.

According to Maslow, if Levels 1-3 are giving you trouble, Esteem, at Level 4, is going to be tough for you. So, as I'm sure many of us have experienced, if you have constant coochie pain, you might hate yourself. At least know that you're not alone in it.

I've designed my own hierarchy of Esteem needs:

When my face is getting smashed into the concrete by bipolar disorder (or anxiety), all other forms of esteem don't matter, even if they exist. Like it really doesn't matter whether others are spitting on me if my face is sidewalk. And when my face is sidewalk, it's hard to vacuum.

I have had to quit many things because of mental illness, and I'm afraid I'll never be able to do anything but waitress. Lately I've been afraid it will dip even further and I will have to rely on someone else to maintain my existence. This is one form of having your face smashed into concrete.

Another form is when anxiety has more of a say in your daily decisions than you do.

Pelvic pain and vulvodynia can also smash your face into the concrete. I went through at least three years of that.

There is no way to experience this stuff and not feel weak. Well, if you were enlightened, you could experience it without feeling weak, but as the pyramid demonstrates, if your face is sidewalk, you're much less likely to accomplish enlightenment.

The other day, lying in bed, I realized that my body knows how to handle bipolar disorder. The problem is that what my body calls for and what the external world calls for are rarely congruent.

To make the body and the external world more congruent, we could reduce, reduce, reduce our lives until they hardly contain anything. But when we do that, we also reduce opportunities to feel confident and to accomplish things, which are part of self-esteem.

I can provide no closure here. All I can do right now is be patient with this self-esteem valley and make sure that any foothold I choose leads up.

Eventually, evidence is proof

2011-09-02T01:07:00.000-07:00

It's 3:30 a.m., which is fine because I am a night owl, and I'm also a little hypomanic right now. I've started freelancing, and this project I'm working on is about bipolar disorder, and when you're hypomanic you don't care if it's 3:30 a.m. and you're writing advice about how not to be hypomanic because you're pretty sure you don't have bipolar disorder because how can an illness feel this good?

Anyway, I'm sitting at my desk using my desktop computer because the plug on my laptop is wiggly. I've been here for a few hours.

Back up -- I haven't sat regularly at a desk since I quit my AmeriCorps position back in April or May. Since then, I've been waitressing, which involves a lot of standing and walking. At home, working or reading or making ringtones like I was NOT doing an hour ago, I've been slouching in bed. In all other situations, I am usually tumbled around like Flaming June.

And since April or May, I've been thinking back on how bad my pain was last winter. Sometimes just executing a single Flaming June tumble made me cry. It was like when the T-1000 falls into molten steel and melts into a hundred terrible faces at the end of Terminator 2.

At the time, I thought my pain was because I was sitting so much. Then, when my pain got better after I quit AmeriCorps, I thought the bad flares must've been due to stress. But here I am, having sat maybe six hours total with breaks, and my cooch is a-flare and my butt feels like it's growing aliens.

I need to start keeping a list of CONFIRMED vulvodynia observations. Yes, Esther, you've done that experiment THREE HUNDRED TIMES with the same result.

I understand that I'm a skeptic by nature, but I think at this point it's more like self-flagellation. This pain MUST be some form of melodrama...

P.S. The new Blogger interface just told me that my blog has had 37,542 page views! I think that's pretty good for a blog about something no one has heard of.

The cycle of health anxiety

2011-08-10T09:21:00.000-07:00

My vajayjay is so sensitive to sugar. If I eat even a whole pint of ice cream---okay, if I eat even a bar of chocolate---okay, if I eat even a bite of cookie, she starts to itch. Maybe she’s in a yeasty place to begin with, but she never gets cottage-cheesy. Just twitchy-itchy.

It makes me think I have diabetes. What else would make my cooch so sensitive to sugar? Would a low-level yeast infection really start to dance after one bite of cookie?

But I have no other symptoms of diabetes, so then I think I’m dying. Is my immune system rotting? Do I have something hidden somewhere in my body that’s making me weak?

But I have no other symptoms of dying, so then I think that the itching is another manifestation of my vulvodynia. Maybe sugar makes my nerves dance. Maybe it activates my IBS or raises my blood sugar quickly enough to start a jig…

But then I think that is rubbish because if it were possible some study would have said so by now, so I think I have diabetes again.

Swimming out to the buoys

2011-07-29T14:39:00.000-07:00

I went to the beach a few weeks ago, by myself. It's since become my thing. But that first day, I went mid-morning on a weekday, hoping there wouldn't be too much company on the sand.

There wasn't, except for the birds. Heaps of seagulls and geese covered half the beach. One woman lay several yards away from the water in tanning position despite the overcast sky. A man sat in a lawn chair just beyond the waves' reach. Two women, mother and daughter, peeled down to their black swimsuits and waded out into the water.

I spotted someone swimming along the buoys, back and forth, a steady crawl. I had picked the right time, the time when those in the know come down to the beach to get their exercise in.

I had my new Marc Jacobs (from TJMaxx) one-piece on, which I had blown my budget out to get (at $50; my budget fits in my shoe) so I could actually swim at the beach instead of flail around trying to keep a bikini on. This girl is my body double, boobs disappearing under compression and all:

So I sat on a rock like a typical introvert, drawing trees and birds in my notebook and trying to look like I came to the beach to sit on the rocks and wasn't itching to dive in as soon as my introversion wore off. I looked up and saw someone walking out of the water, the person who had been swimming along the buoys:

Her sunburn turned out to be a pink swimsuit. I had been sure she was a guy. A guy in his 30s or 40s who would later be in scrubs in an operating room at the Clinic because swimming in the lake like that means you're a highly self-disciplined surgeon.

I packed up and walked out along the sand, past where the swimming woman had gone to sit next to the man in the lawn chair.

"You're a great swimmer!" I said to her. I flipped my sunglasses up so she could see I wasn't a stalker, or to give her a fair shot at describing my face to police if I were. (Really, this is how I think.)

"Oh, thanks! There's a group of us who are going to swim a mile or two miles at the end of the month."

"Wow!"

"Yeah, the lake is perfect for it today, low waves."

Low waves, but I felt like a sliver of tree bark in the lake. It is so big and jostly, and I am a pool-adapted swimmer. But that woman was in my mind. Most women in her apparent shape wouldn't even put on a bathing suit, let alone attempt swimming for a sustained amount of time. Or swimming at all! What made her start? How long has she been at it? How had she come to join the group? She looks like a fertility idol, but how healthy must she be?

What makes the difference between her and my similarly shaped neighbor, who nags at her dogs all day long because she can't nag at her life?

I want to be that swimming woman. I want to take care of myself like that, believe in myself like that, commit like that, embrace life like that, and ignore anyone who might judge my less appealing parts because I know how fucking fantastic I am inside. Ignore them -- including myself, sometimes.

And so I swam. I wanted to impress her. I wanted to be fearless. I thought I would choke or cramp or otherwise embarrass myself. Is that my fear? Embarrassment? Is that worse than death?

I've been back a few times and the swimming is no longer an issue. I'm a fish again, though cautious. I want to take care of myself like that woman takes care of herself, actively and within a niche that works for me. There are lots of "shoulds" in the world, lots of advice about the right way to do things. But we know in our guts much more than a pile of experts or studies can tell us.

I want to do that in all areas of my life. I want to be bold enough to cut away things that don't benefit me. People that don't benefit me. I want to be bold enough to sculpt a life that will let me be my bipolar self without trying to kill me. I'm working on my courage. I'm working my way towards the buoys.

If you don't want people to comment on your weight, why are you commenting on mine?

2011-07-28T06:28:00.000-07:00

Person: Are you getting skinnier?

Me: Relative to you, yes.

Person: You look skinnier.

Me: Maybe your eyes are getting fatter.

Person: You're so skinny!
Me: Don't be jealous, you look good too!

Person: Are you losing weight?

Me: Nope, checked yesterday, still good ol' 125 like I was in high school!

Person: You're too skinny.

Me: I know, I have great metabolism. I can eat anything I want and never gain a pound.

Person: Are you eating?
Me: I had six pancakes and four turkey-sausage links this morning for breakfast. What did you have?

Person: Are you getting skinnier?

Me: Do you know how lucky you are that talking about how fat someone is to her face is taboo?

Dear (American/Non-Starving) World,

99% of you are fatter than I am. Get over it.

With Sincerity,

Esther

How ill is mentally ill?

2011-07-05T06:29:00.000-07:00

I called the hospital's financial-clearance office today so I can keep visiting my psychiatrist now that I don't have insurance. The last question they asked me was whether I had any particular conditions, including permanent blindness or deafness, cerebral palsy, leukemia...or a permanent mental illness.

Am I really as hampered as I would be if I were blind? Or if I had cerebral palsy or cancer? I just can't buy it.

Is this about likelihood of insurance denial? Did you know that my total medication bill these days runs under $100 per month? It may even run under $75; I can't remember how much the generic Neurontin cost me last time, and I'm not using it as a psych med anyway. Are the insurance companies telling me that treating bipolar disorder -- granted, with generics -- is as expensive as treating cancer?

I know I have a lucky medication lot right now. My mood stabilizer is startlingly cheap to refill; last time, it cost $13.11. (Go to Target for your meds!) If my meds weren't generics, I'd be spending $500 or more. (Which, by the way, is incredibly, incredibly stupid.) Bipolar disorder has become very cheap to treat as far as medication goes.

Then there's the psychiatrist and, for some people, the therapist. And the risk of hospitalization. So all this added together...

I analyze all this in terms of money, cold and rational, because I still can't allow that bipolar threatens my life like cancer would, or inhibits it like cerebral palsy would.

And honestly, it's probably good that I think that way. Like blind bicyclists who employ echolocation -- if they weren't optimistic about their conditions, they'd be on the couch all day.

But I've headbutted the world enough times to know that I have to be realistic, too. Since leaving AmeriCorps, I am stable. I still have some rogue anxiety going on, and I slip into depression once in a while, but now that my stress levels are low, I am functioning again.

Did I head towards adulthood hoping I'd have limited choices if I wanted to be stable? No. But how wonderful that changing my circumstances makes me healthier.

And so how can mental illness be as grave as those other illnesses? But I know it can. I've been to the brink many times. I am okay today, so I don't have a mental illness; I forget about tomorrow. I worry about having children and whether I will fall apart on them.

I choose a job that keeps me afloat but that won't earn me wealth. The illness curtails our earning power. Another reason for financial assistance.

I'm still discovering what having bipolar disorder means for my life. I know it doesn't have to mean devastation, and that financial assistance isn't damning -- it's lucky. I know that without a psychiatrist and meds, I might die. It doesn't feel like cancer-die, but somehow it's true.

And when I feel good, all of this feels like life rather than burden -- like, as I said, discovery. It's interesting. I enjoy figuring it all out.

My cat is sleeping with her foot in her face. For some reason that seems appropriate right now. Being at home on a weekday, sitting next to the sunshine and my cat with her foot in her face.

Premenstrual relief & pain update

2011-06-07T13:37:00.001-07:00

I avoided chocolate and sugar before my period this past cycle and I had virtually no premenstrual pain flare. It was awesome.

I think I've gotten a slight premenstrual flare ever since my vulvodynia started, but over the past several months it was stupid-bad. And over the past several months I had no control in the face of chocolate and sugar. I know they have to do with one another.

And since I quit my desk job, I didn't spend a lot of time sitting in a chair this time around either. At home I try to lie down when I can. I don't have a couch anymore because my new apartment is too small for one (I mean, if I valued a couch above my other possessions, I would have a couch, but I would have a couch and nothing else), which means I end up lying in bed a lot. It sucks. But now that it's summer I'll be able to lie on my balcony, which will not suck.

So overall, my pain is low. And as long as I take my sex with a dose of Neurontin, my post-sex flares are down too.

My menstrual cycle took five weeks this time, six weeks last. I thought the delay might be related to my mood stabilizer, Lamictal, which seems to give me more physical premenstrual symptoms, but maybe it was just stress. I have never been one to skip periods due to stress. I've often run like a clock. But certainly it's possible. Lamictal is great for me so I don't want to stop taking it if I don't have to.

When I work at the restaurant, I often have scrambled eggs with cheese and a side of turkey bacon for breakfast. But I've deduced through trial that the turkey bacon makes me flare. Just a little "hey, watch out!" from down below. And I've decided I don't want to eat pigs or cows anymore, so the rest of the breakfast meat is out. The whole point in eating at work is to eat from the dairy and meat realms, which I don't usually buy to eat at home. I feel betrayed.

I was close to developing a complex about being skinny over this recent skinny phase of mine. Everyone kept telling me how skinny I was. Drink milkshakes. I even downloaded an app to my phone to count calories for me.

And then I said, screw you people. You tell me how skinny I am but I never tell you how fat you are. I've been roughly the same weight since high school. I was stressed and I lost five pounds. Should I poke your stomach every time you gain five pounds?

In my efforts to try to eat the weight back on, I realized that I just don't have the eating gusto necessary to do it. There's a reason I'm still my high-school weight, and it's not metabolism. It's the way I eat, and it's probably genetic. My brother is the same way. We eat, but not more than we're hungry for.

I am also a world-class slow eater, which helps. I'm talking two hours for a bowl of chili.

And when I can't control myself around chocolate and sugar, I don't ALSO have dinner. I think this one trick could be its own multi-million-dollar diet craze.

I am really mad about this whole "you're skinny" business. People think they're doing me a favor, but they're actually just making me paranoid. I'm going to make a T-shirt that says, "You're Fat."

The failures of doctors and mechanics

2011-06-05T22:23:00.000-07:00

Everything that happens to my toilet or my car is a metaphor for something in my life.

Over the past two or three years, in addition to my car's biannual budget blowout, I've twice taken it to the shop only to be told that there was nothing wrong with it.

The first time, I took the car in and said the clutch is bad. They gave it back and said the clutch is fine. A month later, the clutch started to stink. I took it back and they said, oops, here's a 10% discount.

I took my car in this April. Two check-engine codes, my entire tax return. They fixed it. I took it back last month because since they'd fixed it, it'd been running funny. They gave it back and said it was running fine.

Tonight it shuddered and sputtered and flashed its check-engine light at me. I said, "I know, honey. I know."

Getting your car back from a mechanic who says there's nothing wrong with it is like having a doctor (or 35) tell you there's nothing wrong with your vulva. When they called to say there was nothing wrong with my car, I almost told them to keep it. Instead I forced myself to interrogate the guy about what they'd done to check it out.

I planned to question them further when I picked up the car, but I crapped out. I was a demure young female thankful that they hadn't charged me, devoid of analytical skill.

Similar to how I am whenever I face a doctor. Except doctors always charge.

Owner of a '98 Chevy and a lemon vulva, I am of rare qualification to make the statement that every mechanic in the world has better customer-service skills than every doctor in the world. But we have to be on our toes with both; otherwise, we are at their mercy. Here are two things we can do:

1. Stop being pansies. Ask all of our questions multiple times. Take notes with intimidating, conspiratorial fury. Pester them until they are clearly annoyed. When the doctor moves to leave the room, shout, "Who's paying who here?!!"

2. Know our stuff. If my car's current problem were a bad clutch, I'd know it. If it were a vibrating vestigial air conditioner, I'd know it. But this is the first time my car has broken in this particular way, so I don't know what's wrong.

I once asked my dad how he knows so much about cars, and he said it's because he's had to repair his own cars so many times. So every time my car breaks, the automotive area of my brain grows.

I will never be a mechanic, but I can still study up on my car, broken or not. And I'll never be a doctor, but I can still study up on my vulva.

There's plenty of vulva stuff out there to read even though as far as most doctors are concerned, vulvodynia might as well be a dinosaur. But the most important way we study our vulvas is by observing them every day. It's like my car: I'm the driver, so I know when my car isn't running right, no matter what the mechanics say. And I'm the body, so I know when my vulva doesn't feel right, no matter if my condition is listed alongside vaginismus or Triceratops.

I love my car. I wish I loved my vulva the same way. Is it possible that I feel more protective of my car than my vulva? In this metaphor of mine, does my car represent my vulva? My relationship with myself? My metaphor makes me nervous. I am way overdue for a car wash. And detailing. And a paint job. And hub caps. And door trim. And ceiling glue.

Everyone's taunting the gluten-free eaters

2011-05-25T21:16:00.000-07:00

Vincent van Gogh's The Potato Eaters

A blogger at Forbes recently suggested that the gluten-free diet is dangerously convenient for teenage girls who want to disguise their eating disorders. My cousin Kim wrote a response on her own blog, which chronicles her and her son's lives living with celiac disease. (Kim is also a former anorexic (go Kim!!!).)

It's fortunate for those of us who follow the gluten-free diet that it's gained enough steam to come into the media's bull's-eye. In the four years I've been eating gluten-free, prices have come down and a zillion new products have become available. Gluten-free bread went from practically inedible (sometimes literally inedible when all the slices were helplessly frozen into one solid chunk) to actually really good. Mainstream brands like General Mills and Betty Crocker started putting gluten-free products right alongside their traditional lines. Rice Krispies recently welcomed a gluten-free sibling.

But some, like Time Magazine, are accusing the gluten-free diet of being largely a fad. Pause: isn't Time Magazine responsible for a good percentage of America's fads? And am I the only one who notices the food fads? Portabello mushrooms started trending in 2002. Roasted red pepper. Green tea. Asiago cheese. Goji berries. Antioxidants in general, in any form. Yes, that pomegranate iced tea will save you from cancer.

If gluten-free is a fad, there's good reason for it. Even if a person has no adverse reaction whatsoever to gluten, if she goes gluten-free, she doesn't have the option to shove ninety percent of the random stuff she used to eat into her mouth. A striking demonstration of this is the USDA's list of the Top 25 Sources of Calories Among Americans, out of its Dietary Guidelines for Americans, 2010 (PDF, page 12). The top 10 are:

1. Grain-based desserts

2. Yeast breads

3. Chicken and chicken mixed dishes

4. Soda/energy/sports drinks

5. Pizza

6. Alcoholic beverages

7. Pasta and pasta dishes

8. Tortillas, burritos, tacos

9. Beef and beef mixed dishes

10. Dairy desserts

That's where America gets its calories from. Dessert, bread, Coca Cola, and beer, with a little meat thrown in for protein. Actually, that does sound right.

If you can't eat gluten, the top 10 above reduces to 4, maybe 5: chicken (without breading), beef, soda, dairy desserts, and some forms of alcohol. Even dairy desserts are hard to come by (wheat makes ice cream so much tastier). Among the entire list of 25 items, gluten-free knocks away about half. And the top 25, as you can imagine, are among the most unhealthy things man has created to eat ("fried white potatoes").

As the USDA notes in the document, a statement that is obvious but so important:

Although some of the top calorie sources by category are important sources of essential nutrients, others provide calories with few essential nutrients. Many of the foods and beverages most often consumed within these top categories are in forms high in solid fats and/or added sugars, thereby contributing excess calories to the diet. For example, many grained-based desserts are high in added sugars and solid fats, while many chicken dishes are both breaded and fried, which adds a substantial number of calories to the chicken.

So if you go gluten-free, you're automatically eating healthier. Your chicken isn't breaded. Your food is fried only when you feel super-confident that it won't be fried alongside breaded food, which is never. More and more, you can find a gluten-free substitute for something you used to love, but that substitute will cost 2 or 3 times as much as its gluteny kin does, and that'll make it more of an indulgence than an impulse buy.

When a co-worker brings in donuts, you'll see them as punishing glazed pain tori, saving yourself those co-worker-inflicted calories and fats and sugars for the day. When you need food on the run, you won't hit up a drive-thru but will instead head into a trusted restaurant or, one of my standby maneuvers, a grocery store.

Over time, your taste buds will adjust, and you'll be filling in healthy food for the junk you used to eat. You'll be eating more fruits and veggies and whole grains. You'll be getting more of your nutrients from the foods you eat and consuming fewer empty calories.

And what's that? With your new diet, you'll feel better. Hence Time Magazine's "fad." Feeling better is contagious! Plus, for a minority, eating gluten-free solves identifiable medical problems, but I'm not surprised that so many other people are liking the gluten-free diet. After countless personal testimonies, medical professionals have found scientific evidence of gluten sensitivity outside of celiac disease.

Now for a short history review. Let's remember that you'll need to eat approximately 25 cups of celery to equal the calories in one cup of wheat. That kind of economy has (arguably single-handedly) allowed Western societies to flourish. Corn and rice provided similar utility in their native lands. The more calories per cup, the more people we can feed. If early societies had relied on celery, the wheel might just now be creaking out of Mesopotamia.

So of course a diet that eliminates society's central nutritional tool has provoked a round of hooting and doubt. Any development that challenges the status quo undergoes a phase of detraction and nitpicking. Regardless, if the development has merit, the status quo changes.

I'm happy gluten-free is rooting into society en masse, and for reasons beyond my bank balance: shortly after going gluten-free, my body woke up. Less pain, less need for sleep, no headaches, a quiet belly. If other people feel as good as I do eating gluten-free, I am so happy for them.

Why do antibiotics make vulvodynia worse?

2011-05-23T21:26:00.000-07:00

I had a UTI a couple weeks ago. Doctors usually give me Bactrim for my UTIs. During the first couple years of my vulvodynia, they'd give me 7 or 10 days of Bactrim, and by the fifth or sixth day I was flaring at that level-9 torture zone.

I don't know if antibiotic philosophy changed or what, but the past few times I've had UTIs, the doc has given me only 3 days of Bactrim. Three days of Bactrim isn't long enough to give me scary flares, but I still flare, and the flares get worse with each pill.

In the past, I've meant to ask the doctor for an antibiotic other than Bactrim, but doctors are so whirly and fast that I'd always forget to ask for a different antibiotic until I was on the way to the pharmacy, at which point I'd decide to fill the script because Bactrim won't hurt me this time around. But with this latest UTI, I stopped the doctor from whirling out the door without giving me a chance to think and told her about the flares. She wrote me a three-day script for Cipro.

Turns out Cipro makes me flare in basically the same way Bactrim does. But I made it through -- and with 4 UTIs in the 15 months I've been with Catfish......!.........I'm sure to have another opportunity to see if some other antibiotic makes me flare.

The reason I'm writing this post, though, is that among my many vulvodynia theories, sometimes I think interstitial cystitis and vulvodynia are one issue manifesting in different ways depending on the individual. And maybe I just think this because my pain seems to have elements of both. For instance, I've got the diet issue like IC, but I generally don't have its hallmark urgency.

But since finishing the Cipro, my coochie is on edge. As soon as I eat something it doesn't like -- like chocolate or sugar (of course) -- it starts to flare. On top of that, I have urgency, especially after eating those bad foods. In other words, all of a sudden, my pain has expanded to include some IC symptoms, and it all seems tied to the latest UTI and the Cipro.

In my many hours of crotch readings, I've seen antibiotics cited as a possible cause of IC and vulvodynia, and I've also seen many report that antibiotics make their symptoms worse. But as you all know, no one has a definitive answer about anything involving IC and vulvodynia. Maybe the antibiotics simply kill off too much of our good bacteria? Maybe they do something to our nerves? Maybe they contain small malicious bees? In other words, the title of this post might as well be rhetorical.

The urgency and the more volatile pain I've been having since taking the Cipro are encouraging me to eat more carefully again. Of course, I am hovering just below what the BMI chart says is my lowest healthy weight, and trying to gain weight while also trying to eat healthy implies lots of cooking, which is my lowest priority in the world, and money, which I'm measuring out like a snail.

A serving of celery is like 9 calories. Literally. Okay, 14. It's so good for you, and it makes you poop good, but I will never gain weight eating it instead of milkshakes. Evil, evil milkshakes.

I feel like I would benefit from going back to basics and doing a little elimination diet, starting off eating only the foods I know are safe-safe-safe for me and working up from there. But, again, cooking. I'd rather eat (gluten-free) toast for the rest of my life.

But I probably will figure something out and do it. My cooch feels pretty awful -- though honestly, I am a master pain wrangler lately. I'm cool with the pain and secretly, latently furious with the situation. I might take up boxing. Or axe throwing.

At the same time, I'm trying to keep patient. I don't have insurance, but even if I don't find a job that provides it for me, in five or so months I will be able to get insurance through Ohio's high-risk pool, which offers insurance to people like me, the insurance-company rejects (me due to bipolar disorder; they probably don't know about vulvodynia to disqualify us for it!). After I do, I'll head to that specialist I keep fantasizing about seeing. Last night I dreamt my mom and I went to some top-secret spage-age place for our hips and they found a small problem in mine that was probably the cause of my pain and I started crying I was so happy. It took me a few breaths to realize it wasn't real when I woke up. Axe throwing.

Off to pee again... I've gotten really good at wrangling urges too, especially after that last UTI. I am a pain-wrangling deity.

Having good sex when you have pelvic pain

2011-05-17T06:20:00.000-07:00

After fifteen months with Catfish, I still have trouble moving beyond my pain and connecting during sex. But it's getting better. Here are some tactics I've come up with that help me focus on sex, and Catfish, and the pleasure I do feel alongside the pain.

1. Visualize people having sex

These people can be you and your partner or other people. Sometimes I visualize what Catfish and I look like from above. Sometimes I imagine us in erotic positions that aren't available to me right now. Sometimes I imagine other people doing things I can't do with vulvodynia, faceless people with nice bodies. All of these boost my libido and the good feelings in my vajayjay.

It does feel weird to imagine other people having sex while you're having sex, or even you and your partner in other positions. Maybe what happens here has something to do with mirror neurons -- you extract from another person's posture what they're thinking and feeling. If you see someone break an arm, your arm shrieks with pain. If you see someone having enjoyable sex, you intuit and maybe even feel their pleasure. This is probably why porn is so popular, and why it leads to tragically fast orgasms for me.

2. Write a romance novel

Narrate everything you and your partner are doing as if you're in a romance novel. "He brushed her hip lightly while his tongue" blah blah blah. This one focuses you on the act of sex and reminds you of all the things going on that don't involve your hooha. It can also remind you of how fascinating penetration can be from a flesh-on-flesh, living-being perspective and encourage you to remember the pleasurable part of sex. Plus it's super-fun. "She shivered as he rubbed his throbbing" etc.

3. Watch it through the other person's eyes

Focus on what the other person is focusing on. For a long time, every time Catfish and I had sex, my thoughts were centered on my body, specifically on monitoring my pain. How bad was it? Was this position okay? Did I need to take a break? Would I have a bad flare the next morning?

Connecting during sex like I had in the past seemed impossible. There was a pain barrier between me and Catfish -- between me and sex. But recently, I started jumping from my perspective to Catfish's, and suddenly I am there again.

I figure that back in the day, making out in my family's minivan and all the encounters that followed up to vulvodynia, the other person's experience played a big role in my own sexual experience. With pain, I started focusing only on my own body, which turned sex into a coochie gamble. Now, when I focus on Catfish and all his movements and signals and grunts, sex is sex, a way of bonding with someone I love.

I wrote a post about how vulvodynia dampens my experience of music. I think the same thing happens with sex: I have trouble connecting during sex because the pain dampens my mental and physical experience, like a finger on a bell. I still don't have a solution for this problem. In fact, I don't even remember what sensing was like before vulvodynia. I just know in a factual way that my sensory experiences are different now.

I also wrote a post about why I keep having sex despite the pain. Basically, sex is important to me. I love it, and before vulvodynia, I had an unstoppable sex drive. If I didn't have vulvodynia, I'd be knocking Catfish down right and left, every day.

Sex is also important to me because it's part of how I work at conquering my vulvodynia. Having gone years avoiding sex out of fear and defeat, I am empowered by knowing the pain is not stronger than I am, and that I can have a real-live sex life. I've gone through some serious sex-averting flares lately, and it's made me cherish the times of lesser pain when I can embrace sex and reacquaint myself with my body and all its power.

How to Give a Urine Sample

2011-05-12T12:11:00.000-07:00

What I want to know is if people who work in medical offices ever do a trial run of the bathrooms they have patients give urine samples in.

The paper towels are on the other side of the room.

The towelettes are on the other side of the room.

The trash can is one of those mini ones with lids and/or it's on the other side of the room.

The shelf, if there is one, is on the other side of the room.

And there's no coat hook.

In every bathroom I've ever given a urine sample in.

You balance your belongings on the flattest, cleanest surface in the room and depants. You open the towelette, wipe with it, and then lunge, with your underpants down, to the other side of the room to throw it out. (This time, they had me wipe with THREE towelettes -- left, right, and center. Three lunges. A butt like J.Lo's.)

You lunge to the shelf, if there is one, or you lunge to the sink, or you reach around to the back of the toilet to get your cup. You screw off the lid, position the cup, pee into the toilet, pee into the cup, pee into the toilet, and squat there, letting the cup drip between your legs into the toilet as you plot your next move.

You screw the lid on the cup. You use the three fingers of your lid-holding hand that didn't touch the cup to roll off some toilet paper and sort of squish it around the cup to kind of wipe it off or something. You roll off some more toilet paper to wipe -- using all your fingers because now they probably all have touched pee -- and recognize that wiping yourself with the opposite hand from the one you usually wipe with is kind of weird.

Now you are dry and so are able to waddle across the room, underpants still down, to use the hand you think is cleaner -- probably the hand you didn't pee on while peeing into the cup -- to open the door to the little metal pee house where your pee will sit until the nurse opens the door on the other side to let it out. You see that someone else's pee is already there to keep it company.

You waddle to the sink and push it on using one or both wrists. You rinse, rinse, rinse out of consideration for the next person to use the soap dispenser before moving on to suds up.

Paper towels. Flush.

Pull up pants.

This is a contest with Deep Blue or the Jeopardy-playing computer: who can design the more efficient algorithm for giving a urine sample, a computer or a human?

Or, who can design a better bathroom for giving a urine sample, a human or a hamster?

Well, the hamster didn't invent the shelf.

Hacking Away at Life's Path

2011-05-02T08:11:00.001-07:00

I've been home from my AmeriCorps service for four weeks now due to anxiety and depression. You'd think staying home from work that long would be awesome, but almost all of these days have been "real" sick days. But I've gone to my serving job on the weekends and I've seen my family and Catfish, so I'm still anchored to the world to some degree and I'm not broke yet.

Look, what I've realized is that 99% of the people I know (that statistic might actually be accurate) don't know what it's like to live my life. 100% don't have the same pairing of mental and physical problems that I have, and almost all don't live with the kind of anxiety and mood problems I have. So unless they have great empathy, other people don't understand why being home sick makes me feel guilty and erodes my self-image.

Guilt isn't a choice. It's part of the depression brain-state, and I'm sure there's some physiological element to it, and I've researched whether there are nutrient deficiencies associated with it, but I didn't find anything compelling yet.

Depression makes depression worse. Depression insists on itself.

I choose these situations like AmeriCorps because I think that I have to do or be something, and then these situations make me sicker. Every line I've toed out of a sense of "fulfill your potential" or "be something to the world" -- college, deskspace, grad school, and now this -- has gotten me nowhere. I still care about the people I was serving in AmeriCorps, and I learned a lot, but my ship is sinking.

I just don't fit into these situations, but I keep choosing them because I don't have examples in my life of people doing otherwise. This is how the world works for us humans. We do what we have a model for. We also do what the world around us values. I've known for a long time that if I want to be truly happy, I'm going to have to opt out of the standard, but I haven't done it yet because I don't have the social and cultural reinforcement to follow through.

I am starting to get really mad. Naturally, I feel guilty about being home and, from this point, would likely go back to my AmeriCorps service with my tail between my legs and fight through another 5 months until my term is up. Because going back is what the world around me values and what I have a model for. It would be easier for me to go back than to quit---

It's easy to break convention when you have a choice. When you don't have a choice---

Someone will probably get enraged at this analogy, but I will share it anyway: in elementary school, the other schoolkids and I didn't understand why Rosa Parks didn't want to sit at the back of the bus. That's where all the COOL (older) KIDS sat. Being forced out of life by illness is similar -- if you don't have the illness, you don't understand why not being able to uphold convention is so devastating.

So here's the fifth Monday I've been home, and I feel it's time to poop or get off the pot. I've made some progress in these weeks, but I know in my heart that if I go back, I will fall back apart. I could wait to adjust to new brain meds, or I could go back and try to rearrange everything to suit me, or etc., etc., but honestly, the only reason I'd go back is for other people. To avoid screwing them over, and to preserve my reputation. To toe the line and soothe the guilt.

Because no one is living my life, but everyone has an opinion on fulfilling a commitment. It takes a good amount of empathy to understand what someone else's life must be like, but everyone knows how important it is to follow through on what you set out to do.

There are two things I've learned over the past four weeks. The first is as I said -- that no one else is living my life, and that no one really knows what I go through. The second is that my life is actually really hard, and the only reason I don't think so is that thinking so makes me feel guilty. (Separate blog post on pain pending.)

Late last week I decided to quit AmeriCorps...and then seriously decided...and then really really seriously decided...it's hard for me to do. I hate to let people down, and I hate to acquire a certain image for (really, of) myself. But I remind myself that I can get all the benefit of my AmeriCorps experience by going back to volunteer with the organization I was at -- because obviously no one thinks badly of me there for being sick even though it makes me hate myself -- and that my first duty in the world is to take care of myself.

It's a big letdown for me. I've spent a decade wondering if I'll find a place in the world. I know it'll require thinking outside the box, so I'm reading a lot of outside-the-box things.

I have this book -- really, never returned it to the library -- called Manic Depression and Creativity. It chronicles the lives of Newton, Beethoven, Dickens, and Van Gogh through the lens of bipolar disorder. I try to draw on those stories, but they seem too extraordinary. Most of them worked with a fervor I can't sustain. I don't recall much depression outside of Van Gogh. Maybe they weren't bipolar but simply melodramatic. Is that true depression, or are you just a prima donna?

I stick to what is more accessible. My psychiatrist laughed when I told him I read Sylvia Plath -- why not (the optimist) Mary Oliver? Because for one, Mary Oliver's words are lame. Two, I don't understand Mary Oliver, geese and stars and sunrises -- but I understand Sylvia Plath. When she wrote

And I
Am the arrow,

The dew that flies
Suicidal, at one with the drive
Into the red

Eye, the cauldron of morning.

I know she was talking about what it was like to be a depressed mother. And that comforts me. To know that someone has felt the terrible colors I've felt. No matter that they destroyed her. They don't have to destroy me, especially if I figure out how to work them.

Playing Doctor, Psychiatrist, and Physical Therapist

2011-04-14T18:59:00.001-07:00

I'm anemic! I win the diagnosis!

I've never been anemic before, but I had a feeling that I was what with the enormous fatigue I've had the past couple months. My thyroid number is also triple what it was a year and a half ago -- still in the normal range according to the clinic I go to, but not according to other sources.

I've decided this all has to do with Lamictal. The fatigue coincides with when I went up to 75 mg on it.

I like Lamictal a lot. I'm still cycling, but my lows aren't as low as they were before, and I get higher than I have in a while. The highs are also sustained. Once in a while, the highs get a little hairy, but most of the time it's a bonus.

Lamictal benefited me at lower doses, and it hasn't stabilized me more at these higher doses (I'm at 150 mg now), so I can probably drop to 75 or 50 mg. I'm still on a very low dose of Effexor, and the love for sleep I experienced at higher doses of Effexor isn't the same as this fatigue I have now. So maybe we can mix the Lamictal and Effexor to get a sleepiness that doesn't also feel like I'm hollowing out. And I can stick with that until I'm less stressed and can drop the Effexor again.

I'm not weak, though, which is awesome. I'm up to THREE PULL-UPS!!!!!!! I will be buffer than Linda Hamilton!

A pic from one of my blog entries on Wellsphere is the fourth hit for "Linda Hamilton chin-ups" on Google Image...creepy/obsessive. Catfish's arm is up there too.

In hip news, I've decided the hip pain I have -- and my mom has, and her mom has -- is due to some kind of...congenitally...misarranged...body element... In other words, no injury or malady, but a certain arrangement or weakness or tightness that our bodies have and that we end up exacerbating, compensating for, favoring, working around, etc. You know how you go to a physical therapist and they observe your body and can tell if a muscle group is weaker than the others by the way you stand? Or that your ribs are slightly off? That's what I'm talking about.

So I've decided I need to strengthen the muscles in my hips and lower abdomen to make sure I've got a good framework there. That hip is also less flexible than the other one, so I'm going to make sure I work on its range of movement. It may never get more flexible or less painful (and the pain is NOTHING compared to vulvodynia!), but I'm hoping that if I pay attention to it, I can limit the progression of the issue with age.

The pain is near the inguinal ligament, which is apparently a common site for sports injury. I remember "injuring" my "hip flexor" on that side in track in high school while training for hurdles -- just a "strain," but now I'm thinking that maybe I've had this problem for longer than I thought. Maybe it wasn't an injury but a natural lack of mobility that I was pushing up against. Or it could've been an injury to that ligament, even though it didn't seem like a huge deal at the time.

But for my grandma and my mom and me to have the same pain?!

I am feeling better in the head -- I think it's mostly just taking the time to care of myself. As I said in my last blog post, I can't expect meds to do everything. They can help, but they will never fix everything. I am sensitive to stress, and I have to look out for myself and choose a lifestyle that works for me. Thankfully, the kind of stress I'm sensitive to is the sustained, non-momentary, non-emergency kind...so I should hold it down just fine when the terminator arrives.

Idiopathic Idiopathy

2011-04-12T16:12:00.000-07:00

After a weekend of working at the restaurant, I came home with swelling in one of my upper thighs. Similar to the swelling I had in my lower abdomen on the same side a few months ago -- similar feeling during work, pain while bending, etc.

This time I was able to get in to see a doctor while I was still swelled up, and she sent me for a CT scan and an ultrasound, a blood clot being her primary concern given what the swelling looked like. Both were negative.

Which is good because I don't know what the hell I'd do with a blood clot.

And bad because I wanted them to find something they could fix.

And good because the swelling made me feel gross about being a biological thing, like I was rotting or deteriorating or aging grotesquely.

Yet another idiopathic event.

And two more tests -- now we can be SURE sure sure there is nothing detectable going on down there.

Maybe it was part of my body's overall statement that if I don't sit down and stop soon, I am going to gamble everything away.

My body made me sit down. Nothing happened to it; it was kind of like when you eat something and it makes you puke -- you very quietly never eat that thing again.

My body said, plop down and shut up. So I did. I haven't been to my service site in a week. I spoke with the director and my supervisor about taking a medical leave. I saw my psychiatrist today. Neither of us had any brilliant ideas. I told my psychiatrist, "I can't expect medicine to fix everything."

The lucky thing is that my body was so ploppy this time, making me sit down before I lost it. It's hard to surrender and just sit down and not try anymore, but this is so much better than losing it and then sitting down.

I've dropped too much weight being depressed, and I've been sleeping at every turn. I kept thinking, it's my meds, or it's my period, or I have cancer and that's why my leg is swelling and I'm sleeping so much, but I'm pretty sure the sleep has been a form of coping.

Every thought makes me want to sleep.

I said to Catfish, "you make me want to fight for a life that works for me. I don't want to lose you because I'm depressed." Because even if someone loves you despite your depression, that doesn't mean you can't lose them because of things that happen tangential to depression. Like last fall's big blowup fight.

Catfish said to me, "I have mad respect for you." Meaning my dealing with depression -- he had a year of it after his divorce.

He also said, "I love you for who you are."

I needed to hear that, but not about depression. Depression is abstract. Concrete are the things I fail at, the going to work and renewing the car registration year after year before the end of March (and that one time I did but still didn't put the sticker on until mid-April), the clean or not-clean apartment, the sleep and more sleep, the waitressing aspiration, the pain, the idiopathy, and all the things I hate about myself but could never admit to anyone else. My depression doesn't embarrass me; my life does. But Catfish jokes with me, asks me if I just woke up from a nap, as if sleeping at this time of day is perfectly fine, and I think, what planet are you from and thank you for coming here.

Chronic Denial

2011-04-04T07:41:00.000-07:00

I am a chronic denier. For example, I identify as having mild depression -- which sometimes means no depression -- even though depression kept me from attending more than a third of my classes my senior year of college, and has incapacitated me similarly over the past several months.

I've noticed that a lot of us vulvodynia bloggers are overachievers. I don't think overachievement correlates with vulvodynia; I think it correlates with blogging about vulvodynia. We take everything we do to the next level.

I haven't been an overachiever in a while -- due to my "mild-to-nonexistent" depression -- but I started out that way, and I haven't stopped trying to overachieve. Which I don't think of as overachieving. I think of it as just doing what everyone else does, right?

Overachieving isn't a problem as far as wanting to go beyond average. The problem is when "over" turns into "unhealthy." Perfectionism is one form; chronic denial is another.

In denying the degree of my depression, I'm saying that even though there are all these facts about depression, none of them apply to me. In turn, I'm saying that everything I do and feel is a choice. I blame my depression on me.

Which in turn makes me believe I have a corrupt personality. Who would choose to live this way? If I'm making the choice, what is wrong with me?

For a long time, I thought I could control my vulvodynia. Clearly I had done something wrong in my life; if I rectified whatever bad choices I had made, my vulvodynia would go away.

Food turned into pure and impure. If I ate purely, I'd make up for all the badness I'd done to my body by eating impurely.

Or if I'd just not had sex in a certain position, the pain never would have started. If I hadn't had sex casually. If I hadn't liked sex. If I had been more pure.

I think the underlying issue is control. In perfectionism, in chronic denial, in overachievement, we want to believe that we have a choice, even if it means we are bad to have chosen differently. But sometimes we don't have a choice. Really, really, really don't have a choice. I have severe depression, and I have pain that I didn't have any hand in creating.

I hate the thought of having severe depression. To me, severe depression is the people who left school mid-semester.

Oh wait, that was me.

But I never flunked out or got probation.

No, but I also had a sturdy disability document (for bipolar disorder) that made my professors accommodate me. Without it, I would've flunked at least three semesters.

But wait -- severe depression means disappearing, not being able to work---and I've always been able to work---

I can't even respond to that one here because I'm so embarrassed.

My wiser Esther swoops in at this point and reminds me that this isn't a shortcoming; it's a difference, and the key to a better life is figuring out which kind of life works for me.

My AmeriCorps term is up in August, and my host-site supervisor says they would like me to return for another year. I would like to return for another year, when I'm feeling good. When I'm feeling bad, I don't even want to go back tomorrow. I am so tired of fighting for it. I feel like I'm back in college -- my worst days, which I thought I had left behind for good.

My supervisor is very understanding and accommodating. She says I've done well, that my 60% is someone else's 100%. Overachievement.

I'm bonding with my service and those I serve. I will miss them if I don't stay for another term.

But I don't want to be unstable either. I CAN'T be. Should I keep doing something that makes me sick? Me first.

If I could find the right meds...level out...

Until you make the unconscious conscious, it will direct your life and you will call it fate.

-- Carl Jung

The Work of W. B. Yeats

2011-04-01T08:34:00.000-07:00

Today, the peach is all

The trees are in their autumn beauty,

The woodland paths are dry,

Under the October twilight the water

Mirrors a still sky

and

What shall I do with this absurdity---

O heart, O troubled heart---this caricature,

Decrepit age that has been tied to me

As to a dog's tail?

and

Turning and turning in the widening gyre

The falcon cannot hear the falconer;

Things fall apart, the centre cannot hold;

Mere anarchy is loosed upon the world

In other words, my peach is all about Yeats.

Yeast, I mean. Yeast. My peach is all about yeast.

What I didn't anticipate about a five-alarm yeast infection plus vulvodynia is that the dancing a yeast infection makes anyone do turns into the dancing you do to avoid a cackling outlaw's gunshots.

I also didn't anticipate that the sparks around my urethra would echo back to my tailbone, where clearly there are no yeasties assembling. Do you have sensitive knuckles? When I pet between the tops of my knuckles very lightly, it's almost unbearably ticklish. That's what it feels like at my tailbone today.

Such strangeness this vulvodynia brings!

I think the yeasties are in retreat, but meanwhile, gravity + Monistat = more gunshot avoidance. Finally it occurred to me that Neurontin, or perhaps Naproxen, might make the itch more manageable. Waiting to see.

Thanks for your support following my last post. I've leveled out but still feel a great ship of karma headed my way in the form of, I don't know, thousands of people not showing up when I need them to. I won't be assembling any marches anytime soon.

Romantic Bipolar

2011-03-30T08:57:00.000-07:00

I messed around with my Neurontin for a while thinking it was the reason I was sleeping so much, but my overall need for sleep seems to be independent of whether I'm taking the Neurontin at night. Yes, if I take it during the day, I'll be sleepier -- especially if I take it overlapping with Benadryl: DON'T DO THIS! -- but taking an extra dose doesn't seem to have a cumulative effect on my sleepiness like I thought it might.

Which took me to the Effexor as the culprit. As you may recall, when I was taking a standard Effexor dose, 150mg, I was in what I called my "Effexor coma." I worked, I slept. I started dating Catfish -- I worked, I saw Catfish, I slept. I drank coffee, I slept. And since I was on Effexor, I didn't care that nothing much was happening in my life.

On a lower dose of Effexor -- about 1/8th my old dose -- I haven't had the sleep issue to the same degree, and I've still had the benefit of reduced anxiety and depression. But as the weeks of Effexor wore on, I started to sleep more, and it got to the point where I didn't have a life again. But I wasn't on enough Effexor not to care.

So I started tapering off. "Side Effexor's" side effects weren't nearly as bad tapering off from such a low dose -- after three days off, I had three days of whirlyhead. As opposed to weeks of it that I had experienced before and that others report. But then, yesterday, I got slammed with anxiety.

Anxiety doesn't always look like anxiety when it starts. Yesterday, it looked like "WOW THE CUBES ARE LOUD TODAY. I WILL GO OUT FOR LUNCH. I CAME BACK FROM LUNCH AND THE CUBES ARE STILL LOUD. I WILL WEAR HEADPHONES. I STILL CAN'T CONCENTRATE. I WILL GO HOME." It also looked like "I have to read this sentence 50 more times because even though I understood it I feel like I didn't understand it." And it looked like "I have to scroll up and down this webpage 50 more times to get the itchy feeling of not having scrolled correctly out of my fingertips."

I can't be sure the lack of Effexor is what triggered my anxiety. It could just be stress, or something else I'm not paying attention to like having been burdened with eating (gluten-free) birthday cake and then sent home with the birthday cake so it's available to eat for breakfast. What I do know is that as I tapered off the Effexor, my fingertips got itchier, my reading got more stilted, and I got stickier as a whole -- sticking to the bed, sticking to the door, stuck in a mindset, etc.

Then today I stuck to everything. The bed, the sink, the bed, the door, the bed, the sink. I put myself together in increments, with coaching: now go to the bathroom; now wash your face; don't think about what is and isn't in the drawer to wear until you get to the drawer. Sit in the bed. Count your breaths to 50. Count again. Now tell me what you are feeling. Tell me without analyzing. What are the first words you come up with? Now open your eyes and write what you just said. Don't curl up -- don't curl up! Maybe it's not time to go off Effexor yet: take a tiny bit to start. Take half an Ativan to get through now, to leave.

At the sink, ready to go, washing a few dishes so I could come home to a clean sink, my cat kept rubbing herself on my ankles, which made me sob. I kept telling her to stop. Stop! Finally I ran away and jumped on the bed so she couldn't rub herself on me anymore. And realized that it wasn't the cat, that it was leaving I was crying about, so I should take another moment, another moment, another moment to self-manage.

What I hate most about being this way, what makes me want to puke, is that you feel the need to defend yourself against judgment over how you are, but your defense ends up being glorification of your illness. The pukiest thing about illness is the glorification. I'm ill, therefore X, Y & Z awesome things -- immunity from judgment, carte blanche behavior, dramatic everyday events, romanticism. I do not want to be this way. No matter how much they say on greeting cards and billboards you shouldn't, I want to be normal. I don't want to have these excuses -- have to use them, have them to use. I want to be at work, not standing on my bed, not not going to work because I'm standing on my bed because it's a legitimate excuse that I find completely illegitimate.

I've tried to bring all of these feelings together to a point of rest. Accept what you are; be what you are; do what you do and don't feel bad about it but don't indulge it either. It hasn't worked. All I end up feeling is guilt.

This is the first day like this I've had in several weeks, despite all the sleep -- the first day sticking to my apartment. I will go back on the Effexor until we figure out another way to make me operational. I don't think I ever hate myself more than in these moments. What a romantic statement.

The Challenges of Having Neurontin as a Personal Hero

2011-03-21T17:53:00.001-07:00

Last week I said I thought I was starting the typical week-long pre-period flare. But when I took more Neurontin, the flare went away. Was the flare pre-period or post-sex?

I kept taking Neurontin this whole week whenever I started to flare during the day in addition to a dose before bed, and it kept the flares at bay. It's been awesome pain-wise. Energy-wise? Stay-conscious-wise? Be-able-to-get-behind-the-wheel-legally-wise? A little sketchier.

Today I took two doses (300mg) during the day, about five hours apart, and when I got to the end of the day I felt like I was in a dream. I also felt like I could fall asleep instantly if I closed my eyes -- and that maybe my body would impose sleep on me if I didn't give in. So at the last meeting I grabbed a cappuccino, and now I am both wired and asleep.

It's okay -- I know I will be asleep by 10:00 even with the caffeine. Because ---- Neurontin.

I love the Neurontin. It makes my pain go blank -- like erasing red crayon from white paper. As I wrote in a previous blog post (maybe), sometimes I've felt like my pain is the one thing that keeps me in this universe, that holds me in intersection with it. I don't know if that sentiment is too abstract to relate here, but anyway, with the Neurontin, I feel like I step back into this universe wholly. I can sense with all my body again instead of just my vulva.

On the other hand, I just can't take the Neurontin at this frequency. My vulva feels awesome, but even after coffee and yerba mate and a cappuccino, I am loopy. I thought I'd snap out of it, but I still haven't. Still haven't. Still haven't. Still awake, though.

I think what happens is that the Neurontin has a cumulative effect on my, let's say, wakefulness. So maybe the whole nervous system, but what I notice most is that if I take multiple doses for several days, I'm sleepier and sleepier during the day, to the point of today's delirium. I went off the Neurontin a couple days last week to see if it was the reason why I was so sleepy, and I woke up. This weekend, I took three over the course of Saturday, and though I may have been more tired than usual, I did not get helium for a brain until today, after multiple days at multiple doses.

So I'll have to put up with the pain some of the time if I want to stay functional. I've conceded on the caffeine thing -- if I find a med combo that works but that requires the balance of a little caffeine, I'm cool. If I can't balance the med combo regardless of caffeine intake, I have to back off on the dose -- in this case, the Neurontin, and accept sometimes-pain.

The good thing is that the week before my period (which will arrive tomorrow, please?) is the worst week of my month. I shouldn't need this much Neurontin at other times, and once I get a cushion for work (haha, how long have I been meaning to order one? Six months), I'll have even more protection.

As an aside, I know coffee and tea are often bad for vulvodynia. In my case, coffee doesn't really do much. It may make me burn a little more once in a while, but today, on the Neurontin, I didn't notice at all. If anything, it's worst for my stomach (blech!) (and breath -- blech!!).

For me, TEA is my ENEMY. I've searched for a caffeinated tea that doesn't bother me, but I don't think there's one out there. Even yerba mate doesn't leave me alone. Tea gives me pain in my lower abdomen, makes me bloat, and often makes my urethra and/or clit feel like they are harboring a marble-sized ball of super-elevated nerves.

So I'm sticking with coffee. I usually drink only a half-cup anyway, and it's a compromise that allows me to feel better physically and keep up with (and awake for) my life.

Here's a song for you to sing along to, one of my favorites to belt out to my cat:

Calisthenics, Fishtanks, and Pu-Pu Avoidance

2011-03-14T18:34:00.000-07:00

I think about this blog a lot (I think about you a lot, reader), but I'm not up to writing right now. It's that whole talking-about-your-vulva-is-depressing thing. When I was actually depressed about my vulva, it was great to write about how depressing my vulva was. Now that I've demoted the vulva to lesser offender and stripped it of some of its depressive power, I don't want to go writing a blog post and stirring up the cooch onus (huh huh huh).

I do want to say things, though. Like, I've figured out how to take Neurontin (300mg at a time) to ease my pain. If I take one every night, I will be in a pretty good place. If I make sure I take one right after sex and then take another one the next day if I start to flare (and again if I start to flare again, and continue with the nightly doses), I won't have a two-week-long post-sex flare.

Right now, the last week before my period, I am creeping into ugly burny stage, and I've taken two Neurontin today to quell it. It's worked, but Neurontin has a short half-life (fades quickly), and I've been sitting, and I'm in the kind of place where your underwear moving back and forth over your clit as you walk is enough to make you dance. I've always flared before my period. When my period hits, the flare subsides. I think hormonal flares are pretty common for vulvodynia, but I still think it's strange that my coo-coo would rather be bleeding than anticipating blood.

The thing about the Neurontin is, I had several days of pretty low pain, and now that I'm a little flarier I am remembering how much this SUCKS!!!!!!!!!!!!! This sucks, did you know?!?!? And it's not that I didn't appreciate the low pain. I would have moments of --- ahhhhhh?!?!? What's going on here?!?!? and then do a hallelujah. But the memory of pain is not the same as walking through Joann Fabrics thinking you might pee down your nylons because your urethra is an evil flower.

I still haven't sent that survey to that specialist. I just have to wrap it up, but like the blog, it's too much for me right now. And there are these questions on it about well-being, how does your pain inhibit your life, and of course I answered, it doesn't! It used to, but I'm over it! YOU ARE NOT OVER IT IF YOU HAVE TAKEN THREE MONTHS TO FILL OUT A SURVEY ABOUT IT. You are in a post-acceptance denial.

I want a fishtank. With creepy faceless things, because I have issues with fish dying after I killed thousands in my childhood. I also accidentally killed my three favorites, the longest livers (live-ers) -- Squish, Squash, and Squirt, orange guys with sword tails -- by knocking my hand into the heater dial. I'm still getting over it twenty years later. So if I get a fishtank, it will be home to the faceless only.

Funny how I accuse myself of denial and immediately write about fishtanks. I think I will keep that in there.

No catfish in the tank either. I still have one in my life, FY subtle I, and anyway, I killed one of those back in the day too.

Maybe someday I'll be up to blogging more frequently. For now, I'll just say that I'm working hard at learning to take care of myself in that way that everyone says you should take care of yourself even though they don't do it even if they're professional life-coach bullies. I'm in love with calisthenics because I have a great uncle who is 89 who does (or did until recently...we should ask) his army calisthenics each morning. A few years ago, he was at our house eager to eat chips, and to get them off the coffee table while holding his little plate, he knelt down on one knee, scooped some up, and stood back up. I am in love with that motion. I practice that motion for 55 years from now. And then I read that the longest-living World War I (US) veteran, Frank Buckles, did his calisthenics throughout his life too. So far I'm up to TWO pull-ups.

So that's me right now. Calisthenics, fishtanks, and pu-pu avoidance. Yay, a title for the post. Oh, the fishtank inhabitants also have to be slow-moving so my cat doesn't sense them and pour them onto the floor.

My Urethra is an Evil Flower

2011-02-10T09:39:00.001-08:00

I haven't posted here in two months, and it's because a lot of things have happened in my life that I didn't know how to share here on the blog. Historically, I've shared pretty much everything going on in my life here, or everything that relates to vulvodynia plus some. But life hit me pretty hard over the past two months and even when I thought I might want to write a blog post, I didn't know how to start.

Today I'm home from work again, just like in my last post, unable to sit and having trouble walking or moving. Two days ago I had a sudden onset of increased urination pain along with blood in my urine. I thought I might have a urinary tract infection, but my UTIs usually come with some kind of additional signal and never hit out of the blue. I hadn't had sex in several days and even though I'd had a post-sex flare, Neurontin had pretty much taken care of it.

Yesterday I stayed home because I had a lot more blood in my urine, and I went to urgent care. The urine dipstick showed that my urine had lots of blood and leukocytes but no nitrites or bacteria. So no exact evidence of infection, but the blood still indicated I might have a UTI.

The doc gave me some antibiotics, and I filled the prescription but I haven't taken them yet. This happened back in September too, a horrible flare with blood in the urine. My home test then showed leukocytes but no nitrites (nitrites point towards bacterial activity), and when I went to Planned Parenthood, the doc said she thought I probably didn't have a UTI despite the blood. And voila, without antibiotics, the pain and the blood ceased in a few days.

So this time I'm going to wait and see what happens. Antibiotics can make me flare even worse, and I am, frankly, terrified of that kind of pain.

Two months ago, shortly after the horrible flare I wrote about in my last blog post, Catfish and I had a gigantic fight, the apparent precipitant of which was my pain. I was flaring and spending a lot of time on the toilet. I wanted support. He was rolling away from me in bed. I told him I wanted support, he told me he didn't know what to do, I told him all he had to do was hug me, and from there things exploded. I was moving into his place at the time, but the next day I was sleeping on my parents' extra bed, where I stayed for a month and a half.

I want to emphasize -- though there were other factors in the tension between Catfish and me, like how moving in with someone is scary -- that that last fight was all about my pain and his lack of support. I want to emphasize this because I want the world to know and care that chronic pain screws with people's relationships and lives.

We -- Catfish and I -- are actually still together. Sometimes I think it's ridiculous. Sometimes I think it's right. I have a thousand different thoughts a day about it. He can be so supportive, but sometimes he sucks, and when he's not supportive in a crucial moment it makes me feel even more like trash. There's a learning curve with supporting someone who has a chronic illness, but I can't tell whether he's willing to climb it.

Right now I'm trying not to think about him much. I see him, and honestly, it's wonderful. We're talking openly about our problems and grown-up stuff like that. But when we're apart -- which is a lot right now -- my mind starts to try to resolve everything, to make a decision about whether Catfish and I should stay together indefinitely, and figuring that out is impossible right now. So I'm practicing shutting down my brain and leaving all the figuring to time. Eventually things will be clearer and I'll trim those thousand thoughts a day down to a few.

My anxiety flared tremendously over the past two months...I can't even begin to describe it. I added Effexor back to my meds but I'm taking like 25mg a day or less (I open the capsules and take a small amount) which is working really well. When I was on 150mg last winter I slept the whole time. If I have side effects from the Effexor at this dose -- constipation, fatigue -- I don't see them and/or they're perfectly manageable.

I also have Ativan, an anti-anxiety med, because I've been having panic attacks out the wazoo...

This morning when I woke up, my pain was low. Then as I peed and moved around, it crept up. By the time I got to work, I couldn't sit down. I was also having urgency. I left about an hour after I got there.

I've learned how to drive my car without touching my butt to the seat -- I push my foot into the floor beside the clutch and brace my right hand on the parking break. It's amazing how not touching my butt to the seat lessens my pain.

The Neurontin has helped. I took some when I got to work -- despite not really walking straight this morning after taking two in the middle of the night when I awoke with a flare -- but it didn't kick in fast enough. But it does seem to help. Whereas in December I had a two-week-long flare, the Neurontin has been keeping my flares to a few days.

The current flare is a weirdo. I don't know what's going on. I figure blood is another symptom and not part of a UTI, but I'm no doctor...

I've decided to see a specialist in Rochester. They sent me a survey in December, and I filled it out but I never sent it in because I wanted to write an extra note with it (you know, in case they'll read it...) but I was overwhelmed with the rest of my life. Now I've seen a few new things, so I'm going to amend the survey as well..

As far as my service with AmeriCorps goes, oh my LORD I want to quit. I feel like a complete idiot missing work for my crotch -- or my anxiety. Complete asshole idiot. My supervisor is incredibly understanding but it doesn't make me feel any better about it. My mom reminded me yesterday that I would be having these problems no matter what job I had, so I should stick with it. But it's hard to keep going in when I feel like a fool.

I'm running low on mental energy. I'm so stressed right now. I feel like my hair is turning gray. I keep searching for gray hairs, and I'll spot one, and I'll pull it down, and it's totally not gray. But I did find a black hair among all the brown. That made my day, seriously.

I'm trying to relax -- I found some free relaxation podcasts on iTunes and I put them on...I think it helps? I try to meditate, which I am awful at, as any beginner is -- "I'm breathing too slowly to focus on my breathing! There's all this empty space between breaths! How can I focus on my breathing when I'm not breathing?!" I'm eating better, which is making my skin break out and adding to my feelings of awesomeness (I always break out for a bit when I start eating better...positive reinforcement!). I'm trying to compartmentalize, but it's hard when your crotch goes wherever you go, occupies every compartment.

I need a sabbatical.

I think the biggest stress right now is how my life is interfering with my AmeriCorps service. It's hard to take pride in yourself, even just who you are, when illness keeps you from fulfilling your obligations. I'm not behind on my AmeriCorps hours, and I'm going to switch over to work stuff after I post this...but it doesn't matter. I'm so erratic right now, I never know what'll happen tomorrow, how I'll feel, if I'll be able to sit or walk...if I didn't care so much about what people think of me and just did what I have to do for myself knowing that I am doing the best I can in all areas of my life, I wouldn't be this stressed out. How do I start doing that?

So that's my life right now. I'm sorry I was away for so long.

Lessons on a Vulvodynia Sick Day

2010-12-08T05:56:00.000-08:00

Awesome flare! It has me on the couch at home instead of at my desk at work. This has NEVER happened to me before -- not without some exacerbating factor like being on antibiotics, and that only happened once. Today, my crotch ignites every time I move my legs, from rolling around in bed while waking up to shuffling around the apartment trying to get ready for work and making desperate cups of tea in a long-shot cooch-soothing effort.

Now that I'm lying still on the couch, the rage is diminishing. I'm hoping to get out the door in the next hour. It's important that I do, and it just dawned on me why: because no matter how bad the pain gets, even those times spent crying on the toilet (which I've done enough of these past few days, stocked with pillow and blanket in case I could fall asleep) have never been as debilitating as depression and anxiety. Mental instability trumps every kind of pain my cooch has thrown at me.

And as I -- let's phrase it positively -- gain more and more experience dealing with vulvodynia (boost that resume!), I've begun to understand the importance of having a stable mind when one faces chronic pain, serious illness, or any life-altering condition or situation. If you are mentally stable, you have psychological reserves that compensate for your physical or situational shortfalls. If you're not mentally stable, even the stable parts of your life can't save you -- your financial state, say, or your social network, or even the roof over your head. If you're not stable, a challenge like chronic pain will topple you over regardless of the other resources at your disposal.

However, I've noticed that the more time I spend with vulvodynia, the less extremely I react to the pain, even when it's immobilizing. Though I have cried about it over the past few days, I haven't been the sobbing wreck I've been before -- this despite the depression that's been haunting me over the past month or so.

I think what's happening is that the pain doesn't surprise me anymore. It baffles me, but my response has become more awe than surprise -- like this morning, the way every step is searing. What kind of mechanism could possibly set off so much pain?!? But I'm no longer scared of it. The pain still feels like destruction, but I've become convinced (99%) that it's not.

So I want to say to those who aren't there yet: look ahead. As you walk through your pain, you'll approach a point where you, too, are no longer devastated by your condition. It took me four years, and there were so many times I wanted to give up. I never thought I could reach this kind of peace with it; I never imagined it was possible. I wasn't even capable of the concept -- that my pain and I could coexist, that I wouldn't always be dangling over a fire.

As I mentioned in an earlier post, I'm volunteering with AmeriCorps this year, and part of my service involves facilitating "homeless book clubs." Yesterday, I visited a book club our outreach nurse runs, a group of homeless men living in a convalescence home as they recover from serious illness. They are reading The Giver, a book whose underlying argument is that pain informs life. The nurse asked whether the men's struggles have made them deeper people, and the men answered a resounding yes. Underneath their responses, I sensed pride -- they recognize how much more they know, how much deeper they are than if they hadn't struggled as they have.

That's the kind of pride I have now. Or maybe, again, it's awe. Thinking of what I wouldn't know if I didn't have vulvodynia stuns me.

And though I can't fathom what comes after this point, I know for sure there's more to learn.

P.S. I still have some magnets left! Email me at madpeachblog@gmail to get yours!!! They are little flexible used-car-dealer-type magnets, but they are free, and I will write you a nifty card as well. If you've already emailed me, you're on my list and will receive yours shortly.

DJ Vulva Magnet Holiday Giveaway!

2010-12-03T17:44:00.001-08:00

Ho Ho Ho! Who wants a magnet?

Send your address to madpeachblog@gmail to receive this most vagy of holiday gifts -- a 3.5" x 2" magnet for your fridge, dilator case, or biofeedback machine!!! A little reminder that tuning your dial to WVAG FM may just brighten your day.

Vagaceratops

2010-12-03T17:24:00.000-08:00

Just thought you should know.

Vulvodynia: Intercourse Impossible

2010-11-19T20:03:00.000-08:00

Last post, I wrote about a news story a local Cleveland station was advertising -- "Off Limits! Married Couples That Can't Have Sex." I was out of town when the story aired live, and the video on 19 Action News' website wasn't working for me at first, but tonight I got it to work! Check the story out here.

The report, or at least its packaging, is par for the course for 19 Action News, The Only News Team With A Chopper. One of my favorite lines from the story: "She was diagnosed with a condition called 'vulvodynia' -- Intercourse Impossible."

Even with the hype, I think the report is valuable. A LOCAL STATION IN CLEVELAND RAN A NEWS STORY ABOUT VULVODYNIA. That's worth about a thousand points. But also, the report features a couple who speak openly about the woman's vulvodynia and the surgery she had to address it. It also features a doctor IN THE AREA who is NOT the vulvodynia specialist I saw who JUST treats female sexual pain. Appointment time...

I will continue to make fun of 19 Action News, The Only News Team With A Chopper, because they are silly. I also know they only ran the story because it involved SEX in a way that they could package as SCANDAL. However, I appreciate how something so stupid as a hint of scandal can cause a News Team With A Chopper to accidentally raise awareness about a serious and virtually silent condition. Sometimes our gossip obsession pays off.

Vulvodynia on 19 Action News: "Off Limits"

2010-11-07T13:59:00.001-08:00

19 Action News -- the only news team in Cleveland with a chopper, and also the only news team in Cleveland that uses expressions like "thugs" and "just horrible" -- is advertising a health special they will run on Monday, November 8: "Off Limits -- A Medical Alert."

"19 Action News with a frank look at a growing phenomenon," their website says. "Married couples who have never had sex.

"It's not because they don't want to...but rather because they can't.

"Go inside the strange, embarrassing condition affecting millions of women that no one's talking about.

"Nobody, that is, except 19 Action News!"

I couldn't have written a more fabulous teaser myself!!!

Nowhere on their website or in their commercial do they say what the condition is -- but I've got a hunch.

And, of course, I'm going to be out of town! I won't be able to watch! I'm hoping they post the story to their website after they air it. I'll be sure to follow up with you guys!

On their homepage, 19 Action News is running an expandable header that says

MARRIED COUPLES THAT CAN'T HAVE SEX

Then, when you expand it, it says

NO SEX ZONE.

19 Action News. Honest. Fair. Everywhere.

Dr. Jack Says Sclerosis of the Spine

2010-11-05T15:19:00.001-07:00

"Well, I have vulvodynia -- chronic vulvar pain."

"Yes, I know what it is."

I know simple transcription doesn't always capture things like condescension and hostility, but generally, this is not a good way to start off an appointment.

Also not good: being questioned about why I made a same-day appointment for hip pain I've had for a year or more.

Why? Because I woke up last weekend with electric skin from my waistline to my mid-thigh, from my bellybutton to my outer hip. It lit up with just the touch of my finger, just the brush of fabric while getting dressed. And it's still like that six days later, and while I don't think it's in the process of killing me, I also don't want to wait a month to see someone about it. Is that okay with you, Dr. Jack Something? Something with an A?

Everything Dr. Jack said was confrontational. I wasn't taking any vitamins? How could I have such a high vitamin D level if I wasn't taking any vitamins? Not any vitamins at all? Why wasn't I taking any vitamins? Had anyone ever recommended vitamins? Why had I made a same-day appointment? I hadn't ever seen Dr. Kelleher? Why was Dr. Kelleher listed as my primary-care physician if I had never seen her?

"I don't know," I said, letting my voice fall to the floor.

To ward off tears, a friend once told me, look up. I looked across the room to the blood-pressure dial, staring its flat face at me from the wall. It twirled its needle nose, nodded a reminder about the delicious pending snow, and told me, "Get mad, not sad."

"Get mad, not sad," I thought.

"Get mad, not sad."

Mad, not sad. I'm mad. I'm mad. I'm mad. This doctor is short! And awfully rude! Manners aside! Self-doubt aside! I am permitted to get mad!

The blood-pressure dial started rocking against the wall and flailing its little black pumps out into the air. Get mad, not sad! Get mad, not sad! Mad, not sad!

I was sad because as soon as a doctor disrespects you, you know you had a bad throw of the dice. Now you've spent all this time, all this money, and maybe you've even taken your clothes off and spread your legs, and all it got you was more stress. I was sad because I felt so unlucky.

And no matter the blood-pressure dial's flailing, I couldn't get mad. Why is it so hard not to feel wrong in the presence of a Dr. Jack? How could it be right for a doctor to be confrontational from the door? How had he shrunk me to a pea?

Speaking of pee.

"Any chance you're pregnant?" the X-ray tech asked.

"I guess technically, yeah," I said.

"You are?!" she asked.

"No, I mean, I'm not on my period. You never know for sure."

Robe off, clothes back on, back up four floors to the internists' office telling everyone I saw I was there to take a pregnancy test. Pee in the cup -- IN the cup, INNNN the cup -- tell me, Dear Lord, why do they always put the paper towels and the cup-receiving box on the opposite wall? And why is there never a little table that says, Dear Patient, THIS is a good temporary spot for your pee-doused cup?

I am not pregnant. Surprise.

Should I have lied? Do people think 97% means not ever ever possible? Why aren't pregnancy tests standard before X-rays? Pregnancy is like Schrodinger's cat: until you open the box, the cat is both alive AND dead. Until my next period, I am both pregnant AND not pregnant.

And besides, technically, TECHNICALLY, it is THEORETICALLY POSSIBLE that sperm could quantum tunnel into my uterus at a point in time coinciding with ovulation and fertilize me. Take that, activists. Not even abstinence is 100%.

Back down, clothes off, robe on, "I agree with you about never knowing for sure," said the tech. Finally, another fan of quantum mechanics.

I stood up for three X-rays and laid down for two. And just now, sitting at my parents' house among two frolicking and/or growling dogs and with Medical Mysteries on in the background, I got the results, online.

HI Esther,

Your hip xray was normal.The lumbar xrays showed an interesting finding of sclerosis of the L5- S1joints.That is an indication of "wear and tear"or a previous injury.I wonder if this is playing a role with the chronic pain that you get when you sit too long, which you have attributed to a pudendal neuralgia.I again urge you to consider seeing a pain specialist.Hopefully the meloxicam will help with your pain.

Dr. Forgiven...

Injury injury injury...when I think of my tailbone, I think of the two or three times I whacked the thing so hard I went breathless -- once, I think, in a pool, and once not in one. Is that enough injury?

Wear and tear -- I am 30. Posing this as the answer makes me think of my toothless and fully spent ancestors, worn and wise and the heads of their tribes at the unfathomable age of 30.

I do not have enough tribal clout to have acquired sclerosis of the spine through wear and tear.

I realized today that my mysterious condition is actually a lot harder to deal with when I'm visiting doctors. Doctors are exhausting. Even when they're not confrontational Dr. Jacks, they require a huge amount of energy -- communicating your story, managing their info intake -- "no, this, not that; and didn't you hear me say this?" -- and just making sure you say everything you came to say, which of course never happens. I am tired of it. The more I visit doctors, the more my pain stresses me out.

In my AmeriCorps service, I'm developing a health-literacy program. Health literacy is totally trendy right now in medicine -- or getting there -- and if it keeps growing, the next generation of doctors should be gargling with patient-communication skills by the time they get new letters in their names. Here's to fewer Dr. Jacks in the future!

As for me, I'm headed for the pain guys, even though I'm not sure why -- do they treat spine problems or just the resulting pain? Why does medicine insist on being confusing? Does more and more bureaucracy mean longer and longer lives? Is that the secret? We don't die until we get all the paperwork done?! Yes.

My Psychiatrist, the Neurologist

2010-10-19T15:51:00.000-07:00

My psychiatrist is awesome. At my regular visit a couple weeks ago, I mentioned how I figured I probably have pudendal neuralgia. He asked what kind of nerve problem it is, and I said, "entrapment?"

Oh, entrapment, that usually benefits from anti-inflammatory meds, and what you might try is, say, 600 mg of ibuprofen at noon and then another 600 mg after you leave work... With anti-pain meds like Neurontin, the risk is that you injure yourself more because the pain means something is wrong, but you can try to play around with it, go up to 300 or 400 mg and see what works for you, try a schedule of one at night and one in the morning to start...

I basically got a starter program for controlling my nerve pain -- from my psychiatrist! I think he must be one in a million. I've never had a doctor step outside his particular BOX to give me advice about my pain.

I've been trying a schedule of Neurontin and ibuprofen for almost two weeks now. I'm up to 100 mg of Neurontin in the morning and 200 mg at night. I take ibuprofen at least once a day, usually around midday, and sometimes again at night.

I can't say I'm feeling too much of a difference. My pain still has its ups and down -- and part of that has to do with whether I've had sex the night before. I upped my Neurontin dose a couple nights ago because we had particularly fun woohoo and I didn't get the shocking flare I'd expected the next day. Woohoo!

(As a side note, someone newly diagnosed asked me in an email if sex really hurts. I told her yes, yes it does -- but that I've realized that the after-sex pain (which usually shows up the next day) isn't anything I didn't experience when I wasn't having sex. The pain during sex can be bad, but I've learned how to think around it and focus on other parts of the experience. I definitely don't have the same sex life or experiences I would've had without the pain, but I'm able to have semi-frequent sex and not completely incinerate.)

I'm not lying down at night like I've planned to in my mind -- I think it would probably help, but I get too distracted by what I'm doing at home to make sure I'm resting my nerve.

And I haven't bought a cushion yet, and that's basically because I've entered the Paradox of Choice -- so many people suggested all different cushions that I don't know which one to choose! So I'm just going to order one and see what happens...

I'm hoping that getting a little more regular with the ibuprofen, getting a cushion, lying down more at night, and finding the right Neurontin dose will make a clear change in my pain. However, just viewing my pain as a treatable (if chronic) nerve problem makes my life so much lighter. I see the current pain as current pain, not pain that will be here always. In the next few months, I'm hoping to find a doctor who can confirm or refine (or refute) my pudendal-neuralgia theory so we can look at other treatments if they're available.

To all my ladies -- remember that your pain is also just current pain!!! I've tried to remind myself of that ever since my vulvodynia started, and it has always brought me at least a moment of peace. You never know what will happen in the future. You're allowed to be sad, but you're not allowed to give up hope for improvement!

Why You Should Blog About Your Vulva

2010-10-08T17:26:00.000-07:00

Every day, a smattering of people land on my blog while searching for information about pouty poussies. These searches look like

gluten free diet and vulvodynia
quercetin for vulvodynia
why does voiding cause me pain in the clitorial area
farting hurts my bladder (I can't believe I've never blogged about this -- me too!!)
can a tight pelvis affect your poo?

And then there are the people who land here for other reasons, like

One search topic that brings someone here every few days is

poke belly button vagina feels weird

Another popular search is for "q-tip test," which I also wrote about in the belly-button post. It's as if the two were fated to bring quirky searchers together.

The searchers come from all over:

I also have a few dozen regular readers who subscribe to my blog on Blogger, via e-mail, or through some other feed.

Here's why you should blog about your vulva: every day, someone new lands on my blog and finds out about vulvodynia. She finds out that her symptoms have a name. She finds other names that might be an even better fit for what she has. She goes away with something to Google that isn't a symptom: it's a specific and awfully elusive word that will lead her to a diagnosis and treatment.

I'm only blogging because one of my searches led me to Quinn's blog, Life with Vulvodynia. After Quinn's, I started reading others -- listed in the sidebar -- and they have been my most important source of knowledge about pelvic pain. Other sites provide definitions; blogs provide the how, when, where, what, and sometimes the why. Blogs are the humans; we're real-world instances of the condition. We're the ones who tell the world what all those wide and murky pelvic-pain definitions mean.

I encourage every v-girl to join the chorus of vulva blogs even if it's just to write crotch poetry or post pictures of vulva lookalikes or WRITE IN ALL CAPS ABOUT HOW UNFAIR THE MEDICAL WORLD IS. If you do, someone is going to land on your blog and learn about what she has. And she'll learn that you -- and a whole community -- are right there with her.

P.S. If your blog isn't in my blog's sidebar, let me know!!!

P.P.S. I have a free StatCounter account to track traffic to my blog.

Self-Diagnosis: Pudendal Neuralgia

2010-10-02T17:05:00.000-07:00

I decided several months ago that I have pudendal neuralgia. It was a "well, duh" moment. I'd been reading blogs about pudendal neuralgia for a while and I'd crossed tracks with it several times in my research -- but I never thought I had it because I'D SEEN TEN THOUSAND DOCTORS AND NONE OF THEM TOLD ME I HAD IT. Of course, I saw ten thousand doctors before Dr. 10,001 told me I had vulvodynia, so I don't know why I thought pudendal neuralgia should be different.

Anyway, late last winter it finally clicked in my head that this pain I have while sitting is probably related to my vulvodynia, and boy, doesn't that sound like something else I've heard of? The center of my sitting pain is actually below my tailbone, right above my hidey-hole, and it feels like someone is trying to jam a fire hydrant up there or something.

Pudendalhope.info describes the main symptom of pudendal neuralgia as

"pain in one or more of the areas innervated by the pudendal nerve or one of its branches. These areas include the rectum, anus, urethra, perineum, and genital area. In women this includes the clitoris, mons pubis, vulva, lower 1/3 of the vagina, and labia."

Uh, yeah! All of us V-girls? What I like about this description, though, is that it names the clitoris and mons pubis as part of the territory, which vulvodynia never seemed too concerned about. Indeed, the vulvodynia specialist I saw told me I might be a candidate for vestibulectomy -- as if he'd never heard me say my clitoris hurts too! Oh sure, cut out the vestibule, then I'll be fine... I'd actually say my clitoris and the inner mystery just above it are the most assailed parts of my vulva.

Some other symptoms I have that intersect with pudendal neuralgia, the ones that made me go OMG! You are so much more accurate than vulvodynia!, again from pudendalhope.info:

Pain is not immediate but delayed and continuous and stays long after one has discontinued the activity that caused the pain (hello morning-after flares)
Pain after orgasm
Need to push to empty bladder
Urethral burning with or after urination
Feel like bladder is never empty or feel the need to urinate even when bladder is empty (note the similarity to interstitial cystitis)
Pain after bowel movement
Feeling of foreign body in rectum.....................................(I am so hot)

I have to admit, every time I read these symptoms I get very excited. Will I be able to be treated??#$@???!?@@?!????? My fingers fly all over the keyboard. But it's not even the treatment that revs me up -- it's the idea of having a physical explanation, a REASON for my pain. KFJEJ:OEWRUW#)(%)#()*!!!!!!!!!!!!!!!!

I'm writing this post now because I'm two weeks into sitting at a desk full time, and my butt and the chair are not getting along. At first I found exotic new ways to sit in an office chair. Then I put my feet square on the ground and leaned forward until my nose dusted the computer screen. By Wednesday of this past week, I was standing up every few minutes to relieve the pain and revisiting pudendal neuralgia online.

My vulvar pain has also changed shape with all this sitting-sitting-sitting. My clit is in a session of obnoxious pinchiness, kind of like getting a shot. My bladder has been hurting more as it fills, too, which means I've been peeing more.

I'd been lucky for fifteen months prior to starting this job -- I was working as a waitress, standing up all day long. When I came home, I'd sit or lie on something that would be nice to me. When I went to bars, to restaurants, to visit family, that fire hydrant would shove itself up into my life and I'd roll around on the chair and deal with it until the night was over. Walking around at work all day wasn't great, and occasionally I'd get bowlegged (at least mentally) because every step gave me a urethral twinge. But, as I suspected, it totally beat sitting in a chair.

For a couple years before waitressing, I was a student, so I was never stuck in any seat for very long. I had pain, but again, I wiggled around it. It was back in 2006-07, when my vulvodynia first started, that sitting in a seat was last my full-time job.

Now I'm realizing that the horrid pain I had during that time was probably compounded by all the sitting. I quit that job around the time I stopped eating gluten, so I thought gluten had been the elevating factor -- but it probably wasn't alone. In fact, the pain I'm feeling now in my clit/bladder region is a lot like it was when I was at that job. It's not as bad, but it's a similar quality. I still think gluten plays a role -- it's inflammatory and makes my life suck in general -- but now I realize it probably wasn't the only culprit.

And! My period of least pain since I got vulvodynia in 2006? When I was lying on my back last winter for 10 days with a laryngitical flucold thing! My pain almost went AWAY during that time. It was BEAUTIFUL, so beautiful that I cried and am almost crying now.

At the time, in the back of my head, I knew the reason the pain was almost gone was that I'd been lying down so much. But I didn't want to admit it. I STILL don't want to admit it. Because I don't. Fucking. Want. To. Lie. Down.

So this is all very good news, but I have no idea where to turn. I searched for "pudendal neuralgia" on Cleveland Clinic's website and the search returned NOTHING. Oh, Cleveland Clinic! You talk so big! I'm sure someone somewhere in that mini-city knows something about pudendal neuralgia...but I have had such mediocre care there (including aforementioned vulvodynia specialist) that I'm annoyed at the thought of trying again (Dr. 20,002). So I have to find a doctor, even out of state, who will help me out. At least evaluate me for pudendal neuralgia and tell me my options. Oh, I hope, tell me I HAVE pudendal neuralgia. It would seriously make me feel like I'd won the Olympics. Every event, summer and winter, all the way back through time.

I hate to sound SO OKAY with having pudendal neuralgia when it completely destroys people's lives. The thing is, I already have whatever I have. I'm already living with it; it's already destroyed (and rebuilt) my life (well, I'VE rebuilt my life). Having something specific and treatable is always preferable to ~~~~MYSTERY DISEASE~~~~ with the same symptoms. Please don't think I underestimate pudendal neuralgia's impact; I just want a way forward. I just want a freaking NAME, a reason, a diagram of my pain's mechanics, and pudendal neuralgia is my best bet yet.

P.S. OMGOMG! Today is my Vulvodynia Anniversary!!!!!!!!! 4 years!!!!! And somewhere around here is the anniversary of this blog!!!! 2 years!!!!!! HAPPY ANNIVERSARY MS. PEACH!!!!!!!!!!!!!!!

Vulvodynia Burnout

2010-09-25T14:42:00.000-07:00

Last August, Wellsphere invited me to be a Top HealthBlogger. August was not a good time for me. Neither was September. Looking back through my e-mails, it took me until December, four months later, to sign on with Wellsphere and start having my blog syndicated over there.

They sent me a welcome e-mail that said if I put their Top HealthBlogger badge on my blog, my posts will get a boost in their search engines.

I added the Top HealthBlogger badge yesterday.

I think for the past year or so I've been suffering from vulvodynia burnout. People send me e-mails. I read them. I react to them. I don't reply. People leave me comments. I read them, react to them, don't reply.

For a long time my posts were dominated by images I thought were funny, double entendres and vulva doppelgangers. Over the past few weeks I've been trying to return to quality. After all, if my blog is being syndicated elsewhere, maybe I should reconsider posting another picture of mussels.

But the truth is -- and I'm responding to Tamra over at Living with Vulvar Vestibulitis, who admitted her own truth in her most recent blog post -- I am so, so exhausted by the thought of vulvodynia, and not writing about it is a way to make it exist less. I also stopped going to doctors, another way to forget about it. I even stopped caring about managing my pain through my diet. Over the past several months, my vulvodynia went from sometimes seeming like my life's sole constituent to being something I'm coping with passively and silently most of the time.

I think one of the most frustrating things about vulvodynia and a huge motivator in my new passivity is that there are never any answers. I ate some cranberries today, and my pain went up. Which I kinda expected because dried fruit in general worsens my pain. Why? Well, no one knows, and no doctor I've ever talked to has cared about helping me figure out why, so instead of obsessing over why it happens and why no one knows or cares, I'm just going to eat cranberries if I feel like it and avoid them if I don't.

(A recent commenter suggested I might have interstitial cystitis given that what I eat influences my pain levels. I saw a urologist last year who ruled that out. I agree that the food connection sounds like IC, but I simply don't have the urgency problem that is a central and essential characteristic of IC. I have referred to the IC diet in the past, however, and I feel like it has helped.)

Dealing with my vulvodynia in a passive way has been much easier on my spirit, at least in the short run. I'm not trying to do the work of an entire medical community anymore. I'm not noting my pain levels every second. I just go about my day, and, separately, I'm in pain.

I don't know how long being passive is going to work, though. Being passive involves a lot of looking the other way. For a split second I think, "OMG IT IS SO UNFAIR THAT I DON'T HAVE ANY MEDICINE TO COPE WITH THIS RIDICULOUS PAIN" -- and then I immediately switch to "Hum hum hum! Hi-ho! Hi-ho!" Sounds like a recipe for a Criminal Minds plot.

Wait. I have another picture of mussels.

I think I have to find a balance between obsessing about vulvodynia to the point that it eclipses the rest of my life and ignoring it to the point that I might eventually go criminally insane. I also think I need to ask for help again. Finding doctors and making appointments is still a really emotional process for me. It's hard to be optimistic that they'll take me seriously, let alone that they'll be able to help.

So that's my truth. That's why I haven't responded if you've written -- I'm reading whatever you send me, and I am with you in spirit, but writing back is beyond me right now. I've been holding my pain at a distance, making it less personal as a way to deal with life in general. I know someday I'll have the energy, confidence, drive, interest, strength to be a full-fledged community member again.

Vulvodynia on the Job

2010-09-16T16:06:00.000-07:00

A few months ago, I helped a fellow server run the food to one of her tables. It took a couple trips because the table was large, eight or ten people. After we were done and I had gone back to my section, the patriarch of the table asked my co-worker, "Is she part of the management?"

"No," my co-worker said.

"Good," the man said.

My co-worker asked me if I had done or said anything to the table. I was bewildered. I hadn't done anything out of the ordinary around the table, and I had no idea why someone would speak ill of me so easily when I'd just been doing my job.

So I went back to the table and asked the man if there was a problem.

"No! No!" he protested. His daughter looked at me awkwardly.

Ten minutes later, as I walked away from one of my tables, the man stopped me in the middle of the dining room.

"I didn't want to say anything in front of the table, but ever since we walked in, you've given off this attitude," he said. He went on to tell me how he worked in customer service and was therefore qualified to rate my service despite that he outwardly appeared to be a mild-mannered layperson.

I apologized and babbled something relevant, but all I could think about was how I had been up the entire night before with a burning clit and now here was a customer berating me because he had taken my post-burning-clit-night lack of obligatory waitress exuberance as an attitude. When my boss walked up, my tears spilled over, and I ran down the hall to the bathroom.

If there's one reason I have patience with customer servants, it's because I never know if they were up all night with a burning clit.

But there's a flip side to this Vulvodynia on the Job business.

Having grown fitful in my employment as a servant to customers, I applied recently for a position in another kind of service -- public. The application required that I write a motivational statement explaining why I wanted to work in service. And though there were plenty of reasons coming together to make me pursue the transition, there was really only one with my full heart behind it.

Vulvodynia. The reason I want to help other people is -- vulvodynia.

So I wrote my motivational statement about vulvodynia.

I didn't use the term. I didn't cite the body part. I just wrote "chronic pain" as that was enough to tell my story. I talked about how scary the pain was to start, how I had changed my life's course at least twice because of it, and how it has taught me to care ever more deeply about others' well-being. I thought maybe I was sharing too much, that I might be stigmatized or passed over because I was revealing such grave personal details. But I sent the statement off anyway because I knew that it was good, for one, and, more importantly, because it was the truest answer I had.

I got an e-mail the next day from the coordinator saying she was very impressed with my application, particularly my motivational statement. I got a call two days later asking me to interview for a position -- at a health-care center for the homeless.

I won't share where I'll be working because I don't want my new co-workers to know about what's going on between my legs. That's a discussion best kept for later. For now, I'm savoring the fruits of my courage -- and reminding myself that a trial like this doesn't have to be about fighting off tears after a restless night in pain. Instead, it can be about achieving new territory via this vulvodynia trial, this rite of passage that has, in the long view, never given up on making me a better human being.

Why I Keep Having Sex Despite the Pain

2010-09-11T21:28:00.001-07:00

My vulvodynia started in October 2006, shortly after I started dating a guy I really liked. He was a Recently Divorced Mexican Neurologist (RDMN). We managed a few rounds of sex before he dumped me.

Those first few times having sex with vulvodynia felt like having sex with a really full, really painful bladder. I tried it despite the pain because I wasn't yet convinced that I had a problem. I thought it was a bladder infection, a weird one that the antibiotics couldn't take care of. I told RDMN about it after a couple tries, and he was considerate. We did alternative things, but any kind of bumping in my pelvic region -- especially on the front, on my bladder -- distracted me from our efforts.

It took me a while to even think about having sex with another guy after RDMN. My sex drive took a jump off a cliff, anyway: I went from hoohaing (I don't use the other word because I feel like it would be extra spammy) at least every other day to maybe once a month, and every time I did, my clit felt like it had needles stuck in it the whole next day. But I still tried it once in a while because once in a while, I still got horny enough that I cared to try.

About seven months after my vulvodynia started and shortly after I got my diagnosis, I bumped into a Cute Smiley Buddha-Shaped Guy (CSBSG). He had just had his last day of work at my old workplace, and I met him at his celebratory happy hour, a few days before he moved out of town.

The first night, I deferred: I told him I couldn't have sex with him because it would hurt too bad. But the next day I thought about it, and I got curious. What would my pain be like? Would it be better than with RDMN, or had it gotten worse? Plus, my sex drive was whimpering at me for revival. I figured I'd give it a shot.

At penetration, my vulva felt like -- you know when you get a really bad sunburn, how bad it hurts to move your skin at all? That's what it felt like. It took my breath away.

But as we went, the pain subsided. We were able to change positions and try it a couple times. I didn't have much bodily pleasure, but I made it through, and afterwards I was glad I had experimented. I knew that I could have sex, physically, that though it hurt extremely bad, I was still in some way intact.

I want to pause here to expand on this point. During the eight or so months it took me to get my vulvodynia diagnosis, I felt like something was eating me alive. Vulvodynia feels like your body is destroying itself. It is sharp, stabby, and burning, and it happens in an area with a lot of stuff that you want to protect. Finally getting a diagnosis and then having sex helped me understand that vulvodynia is not a progressive disease, at least not in the sense that it was consuming me in some mysterious way.

Others have written about feeling "broken." I understand that sentiment. It exists on so many levels: broken emotionally and spiritually, broken expectations, broken faith in life, broken sense of youth -- and yes, broken physically. But for me, knowing that I maintained a sameness, a continuity with the past, helped me move forward with what I had left.

Back to the story: the day after I had sex with CSBSG, the pain woke me up, raging. It hurt so bad all I could do was sit on the couch in awe. I may have tried ice; I knew by then that I didn't have many other options. And I didn't immediately connect the raging pain with having had sex -- I had seen my pain levels go up and down for no apparent reason, and since the sex had ended several hours prior, I figured this pain spike was unrelated. Only much later would I learn that a day-after-sex pain spike is standard for me.

It took me about half a year to try having sex again, this time with a far away high-school friend, in the midst of a rekindled crush. Crush was also very considerate -- and I can't say how much I've appreciated every guy who has taken my vulvodynia seriously. I know there are tons of losers out there.

Having sex with Crush was a repeat of the pain I had with CSBSG -- the awful start receding until the next day when it returned with a vengeance. I remember sort of cursing myself for trying to have sex again because, as with CSBSG, I got a urinary tract infection -- and it just hurt so damn bad that I didn't know why I had been so optimistic at the get-go.

But it's not like I had a ton of opportunity to have sex again. Crush lived six hours away and I remained more or less indifferent to whether I was having sex or not anyway. I was still hoohaing very infrequently, which, after years of an enthusiastic private and shared sex life, I found extremely disconcerting. I felt like the sexual part of me -- that part of my identity -- was escaping my grasp. I couldn't hold onto it. I was part dead.

It's amazing how wide sex is in our lives. We think it's a small, occasional engagement, and maybe also something lowbrow and secret. But sex to me included sensuality, experiencing all of life through the resonance of my body. As I've written before, vulvodynia was a finger on the string -- I didn't vibrate anymore.

I remained sexually dead for a long time. Eventually I worked around the pain in my head so I could hooha more frequently. I started using a vibrator -- through several layers of fabric! -- and that worked pretty well. When I finally killed that vibrator my AWESOME AWESOME AWESOME FRIEND WHOM I HAVE NEVER PROPERLY THANKED sent me a couple more. (She will be properly thanked...) One is that Samantha one, the "massager." I can use that thing through my quilt!

I still felt stifled, though, and out of commission. Then, a little more than a year ago, an old college friend stopped by. She and I had had sex a couple times before, but this time, we made the sun come up. And she renewed me. I felt like I was celebrating sex again, and life, and I remembered that there are thousands of roads to a wholly satisfying sexual life. When you have a partner who respects your disease and is willing to be adventurous, willing to find what works for you both -- they save a part of you. They keep you from that robot, dead place. It's the same as being a friend to someone who's depressed or standing by someone recovering from addiction. We exist in components, and we have the power to save the suffering parts of each other.

Six months later, I tried penetration again, this time with a Random Guy I Knew. I was actually on the prowl, the first time in a long time. At the outset, I just wanted to wrap my body around RGIK in some abstract way -- I didn't want to have sex because I was still too scared. But RGIK was not one of the princes, or he was dumb, and it didn't click in his head what I meant when I said, "I can't have sex because it hurts."

As I held him off, I thought it over. I had changed my diet, done a little pelvic-floor therapy, come far in rebuilding my sexual self -- maybe I should give it all a test drive. So I acceded, and as soon as we started, he turned princely, checking in with me to make sure I was okay. The pain was again that splintery, sunburn feel at first, and then it got somewhat better. When we went for a second round, though, I had to stop him not because of my vulva but because something inside me -- my bladder? -- felt like it was going to pop. I wrote about RGIK here.

It's only because of my college buddy and then RGIK that I entered into my current relationship at all, let alone with any expectation that I would feel sexual inside it. My relationship with Catfish has been the first stretch of my vulvodynia during which I've had regular sex, almost three years after my diagnosis.

At first, each penetration took my breath away, and I'd tell him to wait for a second to let the pain pass. And after several months of semi-regular sex, that sunburn feeling has become less of a hurdle. Honestly, I think it's less scary. I don't know whether the pain has backed off, but it definitely doesn't surprise me like it used to. I've developed a mental routine to deal with it -- I think around it, focusing on the way he feels and smells, listening to his rumbly voice. I look at sex through his eyes. He reminds me why it is enjoyable. I absorb his passion and make it my own.

The pain I feel during sex varies. Some days there isn't much; other days, it's a splintery dildo. Some days he hits something inside me and it hurts. Some days he hits my g-spot. If it hurts too much, I jump ship and we do other things. Some days I'm thankful that he can be quick ;)

It may sound like I'm continually submitting myself to a painful experience for the benefit of my boyfriend. There's a lot of talk in the pelvic-pain world about finding alternatives to penetration and not having penetrative sex if it's too painful. But what is too painful? I'm learning that pain is very much a mental game. Pain is not a structural malady -- in and of itself, it does not negate the existence of your vulva or your vagina. If we value having sex more than we value avoiding pain, we can literally "push through the pain" to make sex happen.

However, I am in no way advising anyone to push through the pain if they don't want to. Each person makes her own decision about what kind of sex works for her. I'm simply explaining why, after so many splintery romps, I continue to put up with the pain in order to have sex. I do it because having penetrative sex is a way for me to reclaim territory that vulvodynia has stolen from me. I bond with my boyfriend. I'm sexual in a way that I love. I focus on the parts of sex that still feel good, the times that he gets me just right, the smells and the intimacy.

I used to think I would never be able to have penetrative sex at all. Then I thought I could never have it regularly. I'm glad to have proven myself wrong. I feel like I leveled up in the mental game of vulvodynia.

But I'm not shaming anyone who has a different experience. First of all, I was lucky always to love sex and to be very enthusiastic about it. Not all women feel that way. Secondly, my triumph over my own vulvodynia can't compare to anyone else's story. We're all in completely different spheres. Just as our bodies are infinitely different, so are our experiences with them.

I do think it's important to remember the mental side of vulvodynia. Somewhere along the way, I stopped clinging to the fence of "can't." I chose sides. If I do not want to have sex, then I am choosing not to have sex: it's not that I'm forced not to have sex, but that, because of my pain or any other parameter, I'm deciding not to have sex. Saying "no" to sex because of pain can come from a place of power when we realize that we actually do have the ability to say "yes."

Vulvodynia makes us feel like we don't have control over our bodies or our lives. But any sense of power makes us feel more in control, which can help reduce our stress levels and our depressed thoughts. It may look like semantics, but for me, saying "yes" and "no" instead of "can't" goes a long way towards helping me feel like I'm turning my life right-side up again.

Duh, Again and Again

2010-09-08T19:26:00.000-07:00

Last week's flare didn't subside like my really, really bad flares usually do. It stuck with me Through. My. Entire. Trip.

Something else stuck: my intestines. I wasn't very careful at all about what I ate, and I was paying for it in a compound way. I kept packing it in. I was in so much intestinal pain the day we left that I could hardly bend over.

But this isn't.....news. This is A Day in the Life, and I'm not trying to garner sympathy or AWE. My point is to demonstrate, yet again, my constant skepticism about how much influence my diet has over my day-to-day bodily well-being.

I can see it in my skin. Not only in breakouts, but in my skin's overall texture. Weird non-dry dryness, itchy patches, etc., etc.

I see it in my mood. My tiny Lamictal dose had held me steady for over a month (and those crazy leg pains went away, thank goodness). But shove a bunch of crapola into my system and suddenly I don't know what the world is about.

I see it, of course, in my vulvodynia, and in my energy. But even with all these clues across multiple systems, I still think I can get away with not being careful. "Oh, that sauce CAN'T have gluten in it, and even if it does, it won't bother me!"

So I'm cleaning house, aka gut. Not going overboard -- too much all at once and I'll never keep up. It helps that I'm approaching a budget crunch. I eat a lot better when I don't have so much money to throw around (SO MUCH!!!!!), even just as far as what I buy at the grocery store.

Proper Pelvic-Floor-Muscle Form

2010-09-01T12:10:00.000-07:00

And all this time I've had this flare, I've been checking in on my pelvic-floor muscles to see what they're doing. They aren't always completely relaxed, but they are at least sitting on the couch munching on popcorn in front of the TV. I mean, what else are they supposed to be doing? One doc says, pelvic-floor muscles, that's your problem! So I go to the physical therapist and she doesn't really tell me anything except the "elevator" metaphor -- that I'm at 2 or 3 and should be at 1. Or is it 0. Is 0 for peeing? Let's say I should be at 0 and Basement is for peeing.

Anyway, I run out of insurance, so I go up there myself and teach my pelvic-floor puppies how to lie down. So now they're back and off to the side, aware but not at attention. But I don't see any real improvement in my pain. Am I doing something wrong? Did I put my puppies in the wrong place?

When I flare as bad as I have been, I keep my puppies in the BASEMENT -- because pushing out is the only way to keep my vulva from touching itself and making itself hurt worse. I do it without even thinking about it. And I've gotten better at not reacting to my everyday pain by going up a floor or two. But I still feel like I'm missing something.

The therapist did say that therapy could help but probably not resolve my problem. So I guess this is the wall.

Flare Follow-up

2010-09-01T11:28:00.000-07:00

I think I trashed my baking soda a couple months ago in a fit of "Why is this packaging so awkward!!!" So Catfish ran out and got me some yesterday. I was going to go get it but was -- in reality, if I can keep my head in reality and not expect superhero powers of myself -- marooned on the toilet. I mixed about a teaspoon into about 4 ounces of water and chugged it, and maybe 45 minutes later I was able to walk around again. I was able to WIPE without the mere PHANTOM of tissue contact making my cooch hurt five times worse.

Baking soda doesn't always work, but I'm thankful it did yesterday. It allowed me to clean and pack today for the trip. I had an old cantaloupe in the fridge and I ran it through the juicer so it wouldn't list for four days -- it is DELICIOUS but that juice is cranking up the burn. I don't know why this stuff happens. I wish I did. It reminds me of how much I CAN do to eat better, the way that I have for a few months at a time, very strict -- which often seems like way, way too much for a manageable life. And it reminds me of how mysterious this stupid disease is even though, at least in me, there's an observable connection between my gut and my cooch.

I know I give up on eating well in part because I get confused and my belief starts to flag. It's wishy-washy. I have no corroboration from the medical community, no corroboration from others with vulvodynia; I'm making it all up myself. And do you know how hard it is to eat well when everyone around you doesn't? And not even doesn't -- my parents are good eaters. They hardly eat any treats and never keep chips, Coke, indulgences around the house. Associating with them should make eating well easier for me. But still, their diet isn't GOOD ENOUGH for my SNOBBY SNOB SNOB crotch. And they're probably the best eaters in my little sphere.

If I knew why, if I had a group, if I could maintain the belief that good diet means behaved crotch, all of this would be much easier. Instead it's down to my willpower. It's down to whether I'm convinced that that salsa will irradiate my crotch, convinced enough that I won't eat it. And if it ALWAYS bothered my crotch, every time, that would be another story...

All this is besides the sex. I still have sex. It hurts like splintery wood, but I still have sex.

Apologies for the disorganized post.

Flare or UTI?

2010-08-31T15:05:00.000-07:00

$83 later, flare.

It started on Sunday. I peed and it pinched at the end, like a UTI. I peed again and saw blood, but I was at the end of my period. Could've been my period; wrong color for end of period, but could've been. I didn't see blood again, but peeing still pinched so bad that it made me tear up. Just like a UTI.

I drained a jug of cranberry juice, popped cranberry pills and Cystex, and tested myself twice with AZO's UTI test strips. Both times, I had leukocytes but no nitrites, an inconclusive result. I've had leukocytes in my pee before without having a UTI -- one goose on the way to my original vulvodynia diagnosis. Today, at an appointment I had already made for other girlie things, the doc said I had no leukocytes in my pee at all according to her dipstick. So I almost certainly don't have a UTI. She was willing to do a culture and give me antibiotics, but $83 was enough spent today.

I'm glad I had someone check me out because I'm headed out of town. Traveling with a UTI is a sure way to, well, die. But I still spent what is to me a good chunk of money to find out, again, that I have not anything but vulvodynia. The National Vulvodynia Association conducts a survey of how much vulvodynia costs. Where's the box for how vulvodynia obscures everything else that's going on down there so you don't know what you need to do?

I've had flares that felt like UTIs before, but never one that lasted for 3 days. From now on I'll remember that if I'm not bleeding (and bleeding more and more each time I pee), I don't have a UTI. Still no blood. Still ridiculous pain. Top 5 flares! I don't even want to walk down the stairs, let alone drive to Chicago. I don't even want to walk!

I'm scared that this signals a new status quo. Will this pain pass? Or is this my new day-to-day? It's got to pass. And when it does -- when, when -- I'll be thankful for my baseline.

Self-Discipline, Or Not

2010-08-16T17:46:00.000-07:00

Catfish brought home a 3.5-pound bag of Peanut M&Ms from Sam's Club yesterday. I hate him.

Actually, it's still sitting on the shelf, or about 3.2 pounds of it is, anyway.

If he had brought it home when I was at the top of my Effexor dose, 150 mg per day, I would have chowed the entire bag down in 2.5 days. If he'd brought it home when I was at 75 mg of Effexor a day, it would've taken me 5.0 days.

I told my psychiatrist how bad my bad-food cravings were when I was on so much Effexor, and he didn't seem surprised, which surprised me. From what I've read, serotonin does affect food cravings -- but it's low levels of serotonin that'll keep your hand going back to that bag. Effexor should've raised my serotonin levels, but instead it raised my M&M levels. Then again, maybe it was my phlegmatism that made my chocomania so expected.

My point, though, is that for a lot of what we do, there's a chemical behind it. We all talk about chocolate during PMS, pickles and ice cream in pregnancy -- but my Effexor experiment sold me on the more abstract idea that our brain chemicals can influence behaviors like self-discipline. Yeah, yeah, self-discipline is a muscle, we know; all the same, coming down off the Effexor was like giving that muscle a shot of 'roids with each smaller dose. So though we can work on our self-discipline just like any other behavior, we've also lucked (or unlucked) into its initial state just as we have the shape of our toenails.

So if you're wondering why you suck so bad at doing your exercises every day or not eating so many cheeseburgers, consider that there's probably a chemical behind it. And give into it. Let yourself suck. Eat cheeseburgers at an astronomical rate. Scolding yourself is not going to stem the cheeseburger scarfing. Accepting your weak self-discipline muscle for what it is and then working to make it stronger might.

And if you can't stop eating cheeseburgers because you're depressed, consider changing your diet as a psychiatric tactic. We store 95% of our serotonin in our intestines. Our bowels are our "second brain."

P.S. We are doing one push-up for every M&M eaten. That theory that self-discipline in any area affects every area is gonna kick in any minute.

Facebook and More Acceptance Talk

2010-08-08T18:53:00.000-07:00

I linked this here coochie blog to Facebook so my posts would automatically share themselves with everyone in the world I know. And that was fine, but I've realized there are some things that I want to share with you guys that I don't want everyone in the world I know to know, even in the name of raising awareness. Like particular lady-bits details. So enough of that. I'll import selectively.

I saw my psychiatrist a couple weeks ago, and he okayed stopping the Effexor. He said I seemed like a different person to him having gone off it, using the word "phlegmatic" five or six times to describe how I had been before. He said some people are sensitive to serotonin to the point of becoming "too neutral." Spot on, man! That's exactly how I felt. Beige.

So I stopped both the Effexor and the Trileptal (mood stabilizer) and now I'm on to Lamictal (another mood stabilizer). Except I think the Lamictal is making me twitch and burn in creepy ways all over my body.

If it's the Lamictal, that will suck. I think it's actually helping my brain, and there are only so many bipolar meds out there. But if it's not the Lamictal, that will suck too. That means it's another

~~~~~~MYSTERY DISEASE!!!!~~~~~~

I've been thinking about future diagnoses as my butt has become less tolerant of sitting and the vulvodynia has crept beyond its original horizon, and I realized that I'm in a different place with disease than I was before. I'm less anxious about it and more -- if it's even possible -- open. Disease feels like less of an offense, or maybe no offense at all. It's no longer something that has robbed me, taking away x, y, and z that I used to have or could've. It just is.

I think this is acceptance, and I think the underlying concession in my particular acceptance is that my body is not infallible. It's only as reliable as nature made it, and nature is successful, not perfect.

All bodies are only as reliable as nature makes them. Nature comes with no guarantees. It just tries over and over to succeed.

A body's infallibility is different from immortality. Infallibility implies guarantee. I have never thought I was immortal; I have thought that, given my age, my habits, my fitness, I was reasonably assured of what to expect from my body. But that just isn't the case.

That doesn't mean I don't get frustrated. I am feeling pretty heartbroken that the Lamictal might not work out. There are only so many mood stabilizers. Last fall's episode is still stalking me. It wasn't until then that bipolar disorder terrified me. Is it possible to get PTSD over one's own disorder?! Ah!!!!

And I'm frustrated with the creeping physical symptoms, the lack of answers, etc., etc. But I'm not panicked, exhausted, despairing, or even fearful or worried. I would hate for something huge to be wrong with me, but I'm not constantly dreading it. I'm just tired of the game in a way that's almost sinking into subconsciousness.

I still want answers. I need them -- because if I feel this crappy this young, where will I be in ten years? There is no way in the world vulvodynia is just some

~~~~~~MYSTERY DISEASE!!!!~~~~~~

Pain like this means something is WRONG. BIGGEST DUH IN THE WORLD.

Routines, UTIs, and Spooning

2010-07-20T22:28:00.000-07:00

I can't read poetry when my crotch hurts.

I'm up late because I'm in the paired routine -- Catfish isn't home yet, and I can't go to bed without him. Ugh, I'm part of a pair. My independent self sooooo retches at the thought! And yet, we're up.

Catfish and I managed a sex routine for a while despite my pain. At first I was just so happy to be having sex that I didn't care how much it hurt. I had shied away from it since the vulvodynia began, only trying it three times between my diagnosis in June 2007 and starting to date Catfish last February. The first two times I got UTIs. Which got me thinking...

The one time I got a UTI from having sex with Catfish intersected with the one time I did my laundry at his house using his detergent. His stinky, smells-like-him detergent that is in no way gentle or hypoallergenic (but oh, it smells like him). Now, I am not a vigilant after-sex peer (that's pee-er), especially after reading this post at the Women's Therapy Center. So it's not like that one UTI resulted from some aberrant behavior. No: I probably didn't pee after sex, probably didn't drink enough water, just like the rest of my life.

When I got UTIs as a toddler, they stopped only after my parents stopped giving me bubble baths. So I think this stinky-detergent connection is legitimate. It's hippie detergent for me on my undies, always and forever.

Which doesn't really bring me to the present. Lately, as Catfish has gotten busier putting himself to work rebuilding people's porches and hanging people's doors, our sex routine has slowed down. Pre-vulvodynia Esther would be jumping on him at every chance. Vulvodyniaed Esther is secretly relieved. I want to be the asserter like I've been in the past, but I just don't have it in me. I don't even care. Every romp is one part pleasure, three parts waiting for it to end. I enjoyed it before for the idea of having sex, imagining having sex while I was having it. Now it just hurts and I don't want to abuse my body.

Catfish is thankfully the most understanding guy, the sweetest guy. His number-one thing is spooning. That we can do.

Out of the Effexor Coma

2010-06-29T18:54:00.001-07:00

After a dozen weeks of smaller and smaller doses, I'm finally done with Effexor. Or "Side Effexor" as it's nicknamed -- because when you try to stop it, it gets jealous in a kind of mad-scientist way. Nausea, dizziness, ear aches, brain shivers -- but I did start pooping again.

I stopped the Effexor because it reduced my life to work, bed. I felt so exhausted every day that I wondered if I was physically ill. Sometimes I didn't have the energy to stand up or move an arm -- a weird feeling that we all describe at some point but that I had never experienced so convincingly.

So I'm out of my waking coma, and out of the stability it provided. It was awesome living without the constant irritability that I now see has plagued me since I was a kid. I have a new perspective on my mental illness -- I learned (again?) that no matter how many issues I conquer, the illness is still there perturbing me. And the illness is mostly about hypersensitivity. My senses overreact and make me irritable. I see that now, without Effexor, in the heat and the noise of the city, with all the little bits of things that collect on the floor every day and the dirty dishes and the sink that never seems to get clean, with neighbors slamming doors and the bright sun that won't go down. If I can find a med that smooths out my senses a bit, I think I'll feel much better. Effexor stabilized me and either doused my senses with sleep or smoothed them down directly, but it withdrew my life to do it, and that wasn't an acceptable solution.

I see my doc later this month, so we'll see what happens. I don't have insurance yet and the financial advisor sucks at her job and hasn't returned my handful of calls, so I may be pulling this one out of my own pocket. But my doc is worth it, and maybe the new med won't be $300 a month without insurance (or financial advice) like Effexor. I'm still on Trileptal, $45 a month at Target (elsewhere over $100).

My butt/hips/upper legs/lower back started whining more as I got to the end of my Effexor taper, and I haven't decided if that's because Effexor was helping the pain or because they really liked lying down as much as we did the past seven months. After six hours walking around at work yesterday and then sitting through a movie and dinner, my pelvis wanted to go on strike. Catfish told me I was limping; I'd thought I was only limping in my head. Those movie chairs are comfortable, but I was shifting every few minutes, trying to negotiate among all my body parts. Finally I balled my legs up to my chest despite my short skirt, despite the many children at Toy Story 3, thankful for the darkness.

A friend (who has Celiac -- coincidence?) linked me to this site about Hip FAI, which she recently discovered she has. When I manage to get insurance again, I'll ask about it. My mom's hip problem seems so far to be an increased dose of arthritis in her right hip. Maybe that plus my dad's spinal stenosis explains my problems? I'm still gun-shy about doctors -- I'm not convinced I can get anyone to care, so I sit around feeling like I'm rotting or maybe just aging too quickly. But I know I'll beat down doors again when I have the #!$*ing $$$ to do so.

Getting Gimpy in the Hippy

2010-06-21T16:31:00.001-07:00

I've written before about my right hip -- mild pain, less flexible than the left one. It never bothered me enough to take it to a doctor even though I've read that in vulvodynia, hips and vulvas often go hand in hand. I figured it would be another wild-goose chase, another series of tunnel-vision docs.

Lately, however, the pain is worse, and I seem to lose some strength in my leg when it's in certain positions relative to my torso. It's also poking me in more places, spreading from just the inside of my hip to the outside and my butt and my lower back and my thigh...maybe out of compensating for it all day. The pain still isn't very bad and I might not even care if it weren't for that thing next door that's been whining at me for almost four years.

Then I was talking to my mom about my symptoms, and voila, she has the exact same issues with her hip. She actually went to the doctor for hers last week -- no results yet, but they did some x-rays and strength tests and I hate to say it but I'm really hoping they find something wrong with my mom....

Oh Mommy, No Mommy! But if she can get doctors to help her, maybe I can go to those exact same doctors and say the exact same things and get them to help me too. And then we'll both feel better and do cartwheels, or cartwheels and the 57-year-old-with-arthritis equivalent of cartwheels.

The pain with sitting has also gotten worse -- right below my tailbone ramming up into my spine. Thankfully, as a waitress, I don't do a lot of sitting during the day and can forget about it most of the time, but all the unforgiving chairs of the world have taught me that any career change will come with a butt donut.

(And if any more people tell me it hurts to sit because I'm too skinny, I am going to measure the volume of my butt via displacement and pour an equal amount of liquefied donkey farts over their heads. Not their collective heads -- one by one.)

Obviously I do need to see a doctor, but I don't have health insurance (and the county hospital is not the solution), so I'm working on solving that problem. I'm thinking if nothing results from my mom's visit, I'll start with the physical therapist I was seeing to get her recommendation and go from there. Or I'll camp myself in front of the Cleveland Clinic with a giant neon posterboard presentation of my journey through vulvodynia...ooooh, maybe I'll make a 3-D journey into a posterboard vagina...into the pleasure-dome...

Anyway, if anyone has any thoughts about my symptoms, please let me know. I know a couple of the bloggers I read have been diagnosed with either hip problems or pudendal neuralgia, so I've got those two on my list. The strange and lucky thing is that the hip and butt pain have inspired a feeling of greater control over my vulvodynia rather than a feeling of being burdened by it. There is so much more hope against chronic pain when an actual cause comes into likelihood.

Our Lady of Perpetual Orgasm

2010-05-13T17:54:00.000-07:00

My clit woke me up the other night, but not with its usual sear. Instead, it was three-quarters of its way to orgasm, and it had gotten there all by itself.

I've often wondered why the mechanism that agitates our coochies causes us pain and not pleasure. Why would over-excited nerves be unhappy? Shouldn't they just as likely be supremely happy? Are there women running around with suspicious smiles on their faces all day long?

Pain and pleasure are all in the mind, as they say. Science tells us that it's our brains, not our coochies, that decide if our vulvar fauna is butterfly or pirahna. Spiritual masters say it too -- says the book Yoga: The Greater Tradition by David Frawley, "If we learn to witness the conditions of body and mind, whether painful or pleasurable, and not identify them as our own, we can go beyond all suffering."

I've been working on that, sort of, in a passive, silent way. Ever since I started my bipolar cocktail of Trileptal and Effexor last November, the vulvodynia's been off to the side. I've got more levity in general, which counteracts the downward pull of the pain most of the time. So instead of confronting the vulvodynia head on like I used to, beating my head against it and jamming my spine down its length, I deal with it more distantly, in a quieter way.

It's a feat of good brain meds more than anything; I'm not a yogi, and I'm not any closer to enlightenment than I was before. Being on good meds has helped me realize how important it is to have a steady mental state in order to make any strides against chronic pain. Note it, ladies! If you are down in the dumps and you have the means, go get some medical pep. If you don't have the means, find them. Go to your county hospital and wait in line to see someone. Pester a pharmaceutical company to help you out. Make someone who loves you do it for you. It'll be worth the trouble.

And remember stuff like this: any moment we escape the pain and focus on something else, we win. We squash the pain out of existence -- when we laugh at the TV, when we get lost staring at the rain, when we sleep soundly, when we take a moment to admire an ingenious pair of pants that won't creep up the cave. Sometimes it can feel like staying aflutter above a fire, grasping for whatever distracts us. But sometimes the pain is only a shadow, and we hardly notice it's there.

If, as I quoted above, we can accept that our vulvas are not equivalent to ourselves, that our pain is separate from our being -- our being, inviolable, beyond reach of any earthly disturbance and stronger and more permanent than all the earth -- that's when we win a much bigger struggle, the war to each moment's battle.

For me it's a slippery concept, hopping in and out of my brain: whatever I am, being or soul or breath of ether, I transcend this body and all of the incidental things that happen to it in this lifetime. I understand it best via existentialism -- whatever happens to me could've just as easily happened to someone else, and what happens to someone else could've just as easily happened to me. All of the bad things are interchangeable, as are the good things, all the way down to the bad and the good we are born with -- and because of that and because we rely on each other to live in this world, we share everything we have. If everything is truly incident, accident of circumstance, the only thing that defines us is what we are before all of the incidents occur: beautiful, pure consciousness, one by one brought to be here together.

I know how hard it is to hang on to that concept when you hurt or when you're depressed. When I'm depressed, I lose my lucidity, and I can't think past the current emotion or the current pain. I can't remember feeling better, and I can't imagine I will ever feel better again. The best I can do, after years of working at it, is resist judging my present thoughts and let them pass without indulging them too much. I avoid stirring the fire. I just let it smolder as it is until it puts itself out -- which, days or weeks or months later, it always has.

Because, in the long view, nothing is perpetual. We may have pain until we die -- we can't know -- but our view of it will change. It makes us grow, makes us deeper, tries to make us yogis or monks or something more patient. It can feel like breaking, but eventually the journey becomes one of will rather than one of resistance. That's how mine has gone, anyway.

Catfish Sandwich

2010-05-13T17:36:00.000-07:00

Volvo Shop

2010-05-13T17:35:00.000-07:00

If only!

Lack of Substance

2010-03-19T16:18:00.000-07:00

I realize that ever since I got on good brain meds and started feeling better mentally, my posts have basically consisted of sex stories and pictures of stuff that you might find funny if you're Beavis or Butthead or me. So depression is good for something -- deep blog posts.

But I feel like I've left my readers in the lurch. It's not that I have nothing to say; it's that vulvodynia is no longer the center of my life so I'm not running to my blog to report my thoughts all the time. That doesn't mean I'm not thinking about it, though. Today I went for a hike in my favorite forest preserve and came across this site:

Last time I was there, everything in that photo was laden with ivy leaves. In total there's about a quarter acre in those woods where the ivy has run wild, climbing all the way up the trees and weaving itself across branches and over the path. I remember standing there late last summer under it all wishing I could stay there forever. It was after one bad doctor's appointment or another and I was so frustrated and devastated that I thought with just a little more internal steam I might slither right out of my skin and start over. The ivy was lying over a short tree in a way that made it look like a witch, and her ankles were thin and she had red eyes, and all I could think was how feeble magic looked to me anymore. But I still felt like begging her for a cure.

I can't believe how much has changed for me internally in just eight or nine months. I feel very lucky, and I also feel like everything I've gone through can really help other people. So it's my aim now to write from my new perspective with hope that it will help some of you out there as you try to cope with vulvodynia and move forward with your lives. Ours is a pretty lonely disease, so once we find each other we've got to stick together.

Minute Man or Hora Hombre?

2010-03-19T16:02:00.000-07:00

What Catfish Arms Look Like

2010-03-15T11:02:00.000-07:00

Everyone keeps asking me what forearms like catfish look like. Well, let me tell you a little story, as I remember it.

When I was a tween or so, my dad, my brother and I often went fishing with my grandpa when we were in town. One of those trips took us to the bank of a river. I remember grandpa fishing from the ground, leaning back against a rock with his failing legs stretched out in front of him. He hooked something in the river and reeled it up -- a catfish no longer than a foot. It looked like a dinky thing to me given how big catfish can get, but he pulled it off the hook and held it in his fist for a second. "Nice fish," he said, and then lobbed it back into the water like a football.

I don't think anyone else there remembers that catch, but I do because I wondered how the catfish must've felt in grandpa's hand -- all those muscles in their exact design with their exact duties, all that tissue existing only for a present-moment purpose, the cylinder fish alien against all my bluegill hauls... Apparently I've been thinking about that fish for almost twenty years because when I wrap my fist around Catfish's forearm, I think of grandpa's catch.

Granted, perspective is in his arm's favor here. Popeye! But he IS in the process of working up to doing a pull-up with me hanging on him. He says by April 1, but we'll see.

I've worked up to 2 chin-ups -- palms facing in. 1.5 pull-ups, palms away. My goal is to do more chin-ups than Linda Hamilton does in Terminator 2.

While I'm photo sharing -- here's a coffee mug we got in at work the other day:

Apparently my mind's always in the wrong place, but when I gave my co-workers a second to think about it they saw it too. Dante (aka The Danté!) asked to pose with the cup:

If anyone wants this cup I will snag it for you. I wanted to gift it to someone who would appreciate it because I find it so special but I figure it deserves a few trips around the restaurant before moving forward to a private collection.

Can't Get Over It

2010-03-04T13:32:00.001-08:00

I keep ordering mussels. Any idea why?

This pic sucks because I'm trying to be surreptitious. I'm alone in a bar. My co-worker and I already had our post-work two and she left. But I was feeling the clamshell call. (Need to be alliterative surpasses need for accuracy.)

Another Type of Man

2010-03-04T13:07:00.000-08:00

Sleeping with Catfish

2010-03-03T12:38:00.000-08:00

The guy I've been seeing has forearms that are like catfish, so I've been calling him "Catfish" to people who don't know him. I think I'll start calling him that here.

Catfish and I have been trying to have sex. Actually, we've succeeded several times at having sex -- I say "trying" because each time feels like a flip of the coin, "will sex be possible again." It hasn't been something I haven't been able to do, but I've come close to abandoning the mission before it's complete.

When we start, the pain around the opening of my vajayjay is excruciating to varying degrees, sometimes breathlessly, sometimes more of a wince. It's always subsided after a few minutes, so I hang in there. He caught on quick and we go slow until the pain lets up and we can get moving.

Then there's the problem of going too long. If we have an extended round, I start to feel a different kind of pain -- my abdomen, and also a soreness around my groin. I figure it could be muscular, since in theory those muscles are bound up all the time, but whatever it is it makes me fizzle prematurely and I just try to hang on till the ride's over.

The pain during the day is another story completely. Up until about a week ago, it was unbelievable. I was at a 9 constantly -- and whenever I get up above 8 or so, I realize that my pain scale is actually a hyperbola and the increments start stretching as the numbers go up. I consider 10 to be pain that I can't not cry about. The 9 I was feeling for a few weeks -- including that day I posted from the toilet -- is a 10 minus the inability to function. 8 is loud burning that distracts me every so often.

So I sat on that 9 all day for a couple weeks, including through the misery of my period, constantly convincing myself that I didn't have a bladder infection. (I didn't, somehow, but my pee was like a serrated knife.) And each night I'd get into bed and feel like I couldn't possibly have sex again. Well, one fabulous thing about this guy is that some nights we just cuddle. (Drool.) And a couple nights I diverted the sex to other activities as the pain was too scary. But there were a few times where I thought, no way, no way, and then I tried anyway and was able to fight through the pain and have a good time.

That taught me a huge lesson. I realized that no matter what, my pain is not a mandate on my actions. I can do whatever the hell I want! If I were paralyzed, I would NOT be able to move my legs -- it wouldn't be my CHOICE. But with pain, what I do IS my choice. I may not function exactly as I would without the pain, but I can still function.

I do have to be more careful than I have been in the past, obviously. I seem to get tender externally more easily, and I've noticed some bleeding when he involves his fingers. And as I mentioned above, my vaginal stamina (HAHAHA) isn't what it used to be. But I'm so thankful that Catfish is a guy I actually WANT to keep seeing! Trying my vajayjay at regular sex and seeing that it's fit enough for parasex (like Paralympics...) has stoked my feelings of control over the situation.

Since about a week ago, the not-during-sex pain hasn't been that bad, and I think I figured out why: IT'S MY DAMN INTESTINES. I swear, I swear, I swear... Look, I'm a constipated kid to begin with, alright? And the medications I'm on for my bipolar head make me all the more stopped up. So I've been waging what would probably be a wiggly war against my gut, dropping kefir and kombucha and senna and probiotics on it along with movement-inducing foods in an effort to poop at least more often than every Tuesday. And I was in the middle of so much level-9 pain and suddenly, like the sunrise, there came two gigantic bowel movements in one day -- and my pain sunk back down to its usual 6 or so without a quibble. WHA???

I thought the pain was about the sex and that I could never have regular sex without being in level-9 pain my whole life. But apparently, that's not how it works. Can I get a Hallelujah?

I have been eating like an idiot because my schedule's so messed up being around this guy all the time and going out so much. But I need to stop it. There is no reason for me to eat like I have been, risking glutenings and dropping Reese's cups like they're, well, Reese's cups. I hate Reese's almost as much as I hate that maker of the universe's cutest but cheapest but most ununbuyable shoes, Steve Madden. I hate you, Steve Madden.

My message to you other v-girls is: IBS. The incidence of IBS among women with vulvodynia surveyed on CureTogether.com is 50%. Fifty percent. That means half of all women reporting that they have vulvodynia also report IBS. WHAT! I'm sure I've mentioned this before, but I think that's ridiculous. It could be that some spasm disorder is affecting both our colon and our vulva, but something like that sounds extremely rare to me, and neither IBS and nor vulvodynia is a rare disease. I think it's more likely that for those of us with vulvodynia, the two are related with the hyper-reactive colon setting off nerve endings in the vulva.

Our diets are crap, you know. High incidence of IBS? BECAUSE OUR DIETS ARE CRAP. It's no genetic disorder, birth defect, nerve disease... It's because we weren't made to consume Mountain Dew and Shamrock Shakes while excluding everything else that's green.

So I am going to put my foot down. On my hand. And my wallet. And Catfish's fork. So I can't eat anything I shouldn't. Yeah. Twister in the refrigerator.

Resilience

2010-02-23T09:53:00.001-08:00

You Sure It Isn't Psychosomatic?

2010-02-22T14:47:00.000-08:00

Suggesting that vulvar pain is due to sexual issues is like saying back pain is due to moral issues.

Your back hurts? Must be because you're not an upstanding citizen. Maybe it's the red light you ran, the tax return you fudged, the friend you left lying there all dusty in your closet who's become a sting in your spine.

An organ's main function needn't be its dysfunction. No organ's main function is to grow cancer. Celiac intestines aren't suicidal about having to digest.

So why is it that a pained vulva means a woman has a problem with sex?

Way too many men have suggested so to me -- and I'm sure at least some of them said it because they thought I might have a revelation and suddenly be willing to screw them. Or because I might try that age-old vulvodynia cure of having more sex. You know, the one that doctors mention right off the bat and write about like crazy in medical journals.

Not a single woman has suggested to me that my pain is due to sexual issues. And there's the empathy schism. Another woman may not be able to imagine chronic vulvar pain, but she doesn't have a problem believing it's possible, and that it's possible free of psychosomatic root.

Why do guys think we're afraid of the dong?

Why can't we be into the dong but not into THEIRS?

A guy at work asked me if I won't date him because he's black. I told him of course not. His response: "What's the problem, then?"

YOU.

The guys who have called my pain psychosomatic are (almost) all complete lame-o's compared to me sexually and would be the ones in pain if sex pain actually worked that way. Lack of confidence, compensation, body issues, fear of intimacy, fear of love, general hey-how-big-is-my-penis obsessions...

We all have our issues, yes. I have some, though I'm not always sure of what they are. The key thing is that I have always believed myself to be a sex goddess. I don't have an explanation for that belief, and I don't really have evidence besides whatever sings in my hips. I've always liked sex and always felt comfortable with it. Some friends and I have based our entire inside-joke repertoire around sex, including the friend with whom I'm planning a tropical island swarming with naked men and centered on a penis visible from space...

I like sex so much that vulvodynia has made atheist me wonder whether there really is a god -- that vengeful Christian god whose morals I must've offended with my pagan celebration. I masturbated too much! Someone's interpretation of the Bible was right!

To suggest that my pain is due to my psychology and not my biology -- at first it bothered me, and then I realized what a fabulous private world I have that these guys can never touch. That some may never approach in all their earthly years. It's a painting versus art: some never learn the difference.

One already knew it.

We've slept apart three nights since our first date two weeks ago. I'm not a dater, dudes. I'd say I don't know what's going on, but I do.

How I Like My Men...

2010-02-22T13:55:00.001-08:00

Hello from the Toilet

2010-02-16T05:22:00.000-08:00

What do you do when you're in such bad pain that nothing will help, not even ice because ice requires touching something to your cooch and you're pretty sure that's your trigger for becoming a fire-breathing dragon?

I sit on my toilet.

My toilet, the one that makes me not want to be a renter anymore. As I sit here all typey-typey trying not to scream, my porcelain friend is dripping into the apartment below me.

It's not the toilet that makes me not want to be a renter. It's the fact that I don't own this toilet and am not in charge of its maintenance. The last time my toilet decided to be a metaphor and leak, the guys replaced only the bolt that was leaking. Like toilet Pollyannas or something. That other one's the same age but surely it's good as new even though the one that's the SAME AGE THAT WE JUST REPLACED was leaking! Never fear, dear -- air your ass all you desire! Our reliable handiwork can't possibly let you down!

One of those guys is my downstairs neighbor. Can't say I feel bad leaking down on him, though he's a really nice guy. Maintenance has a karma. I think it scared his cigarette-smoking tween, though, who, home alone with his tiny tween buds, banged on my door yesterday evening to tell me about the leak.

If I lean back I hear drip...drip...drip... So I'm all thrust forward in my winter coat in my freezing bathroom telling you about my failing plumbing.

I think this flare is from my period, but it's so bad I'm wondering (note: not worried...I give up) if I have a UTI. How would I know that, in so much pain already and bleeding anyway? That's where this gets tricky. But I'm pretty sure I'm just being tortured by a mystery demon no one has been able to name (like Beetlejuice!) and not by mere bacteria.

If I do have a UTI, it's because of a...guy....

It's my day off, but I woke up at waitress time to pee and set myself on fire. We both sweat under the blankets but use them anyway, and when we turn our backs we hold feet. I wanted to stay until he got dispatched, but I was feeling like an emergency only my toilet could solve. My leaky toilet, leaky life, I don't think he quite knows what to think of it. I'm listening for my neighbor's car to return so I know when I have to get off the pot.

Drunk Post

2010-01-30T14:33:00.000-08:00

Hi. I'm in a bar. Too tipsy to drive home after work, so I deem, and so I'm sitting here after my more tolerant co-workers have left...still drinking. Yay iPhone.

Today a customer at another server's table told me I'm stern. He's in customer service, you see, and knows about such things in a professional way. I went over to his table to apologize for the discretions -- sorry, in-, told you: tipsy -- he had voiced to the other server, and he demurred, later led me away, and said he didn't want to say so in front of the whole table but my demeanor since they'd walked through the door...

First I would sass, but, employed, I only half-sassed, as much as allowable, then ran off to beat the stream of tears when my boss came to my defense.

Thank god my boss is awesome -slash- thinks I'm the nicest person alive.

The thing was, I realized sequestered in the thickly stocked back office, though my days are smoother, I am still under so much frickin stress...and to hear what amounted to arrogant, opportunistic waxing in the middle of brunch, albeit solicited by my apology...

Since I've come to what I figure is "acceptance" about my vulvodynia, my pain has become a sidenote. I don't really notice it. But the fact remains that my pain kept me up all last night, my clitoris burning bright through every leg orientation I tried, and I blamed the non-sleep on so much Effexor-induced day sleep until I admitted that yes, this is my crotch keeping me awake.

It all fell on me when I ran away from that customer. It wasn't his comment -- fuck that, been up against that too many times. It's genetic, got it from my mom. You know how Michael Jordan hangs his tongue out when he dunks? We furrow. Deal with it.

And seriously, if I were a furrowing man, would you care?

What if I had Asperger's, you judgmental dipshit?

But this other stuff...erupted. I thought it was under control. I thought I wasn't this upset about my life.

Honest: on the anniversary of my 3rd vulvodyniaed year, I promised myself I wouldn't live to see a 4th. I don't recommend this pact to anyone; I mention it because I'm convinced honesty heals ALL overall, eventually.

That's what I thought of sequestered in the office today during brunch. My pact.

I've been having dreams that I have to move back in with my parents because I can't afford my life. I'm off the school's health insurance because I'm not taking classes and I'm not sure what I'm going to do. I can maybe afford to get insured thru Ohio's open-enrollment program -- passed Jan 1 -- but the numbers aren't overwhelmingly convincing. My co-worker goes to the county hospital and says it's okay, though, which makes me feel less like I'm falling off the no-insurance cliff.

The end on that.

There are a lot of life-beaten people at my job and in my neighborhood. Like this guy who just ate this ginormous salad. Actually I just mention him because I told him I would. But anyway....once in a while my mind does a minute or so cha-cha over "THERE'S NO WAY OUT OF THIS PAIN?!?!?"

And it seems that the only feasible way to handle the pain is to ignore it. Or, through medicated mood, to be more or less ignorant of it.

To forget it exists.

It's just this hum in the sidespace, like an evening bullfrog.

The question of the day is, do I eventually go insane?

I thought no, but given its proximity as proven today....

I just feel really shitty about ME. I wanted to tell you about my post-urologist visit but I never did. I remember shouting at my dad in the car that all abnormalities that befall me should be a form of POWER, not deficiency. All this over pelvic-floor dysfunction. Because somehow bipolar is a POWER but PFD isn't?

I've tried not to feel shitty about me but it keeps creeping back.

This post must be getting long. And I'm sobering up. So.

Please no pity. I'm writing this for all my chicas who understand...as someone here just mentioned, something like Charlie's Angels...but please not beholden to the service of a man...

I Had Sex!

2010-01-07T18:12:00.000-08:00

I had sex! Penetration-sex!

A little while ago, my body suddenly decided that this one particular guy was really sexy. It said to me, get your hands on that, yo.

And lo, from the Heavens (literally -- Christmas party), I found myself in a social situation with this person. And lo, I set a course. And he ran away. And I set a course. And he ran away. And I set a course! And I got suckerfished by several other men -- but no! No! NO, other men, get off my periscope! I'm heeding my body's call!

I was, I should tell you, wearing a really short skirt, and I occasionally had on a long sweater, and I had arrived with my long turquoise coat on top of all of it. Remember that.

So eventually at like 3 a.m. either this guy finally figured out why I kept feeling his material George-on-Seinfeld-style (one of my two flirting maneuvers) or he was too drunk to keep walking away. Actually, there's a little more to the story, and it would be fun to tell, but it risks revealing his identity to very unlikely readers. I've been working hard on red herrings with these people since the event, so I'll keep it vague.

The only thing that matters anyway is the sex. WAIT, wait, that's his line! Because I told him when we were finally getting down and he was descending a little too fast that I can't do that, dude.

"Can't." That's an ambiguous word, I found out. Apparently, sometimes it means you're afraid of sex. Sometimes it means you spent all night getting him not because you were attracted to him but because you were sent by evil female forces to rain cockblock on his dick. Sometimes it means you think his penis is ugly. Sometimes it means you think he's a douchebag. Sometimes it means you should give him head now to make up for being an evil female who thinks he's an ugly-dicked douchebag.

Sometimes it means welcome to the real world.

My body has different standards than the rest of me. In my head, all of you were huffing in disgust -- you, blog readers. You, women! I thought about dealbreakers and wondered why the deal hadn't broken yet. Clearly, he wasn't worthy.

I explained to my whiny lover, after several rounds of pain talk, that I don't really have a place: I can't do random penetration-sex anymore, but I still looooove everything else -- how do I get what I want without leading people on? Anyway where is your imagination? And since when are you a twenty-year-old again?! Why has every other guy our age been so respectful while you're practically weeping into your debodied pants?! Oh my body, WHAT were you thinking...

I was pissed at him, but I didn't want to leave. I wanted to smell him and have him lie on top of me. I wanted him to give me that amazing oral sex I'd fantasized about that apparently takes place in eight seconds on his planet.

He was pissed at me, but he wasn't kicking me out. He kept sounding like it was ultimatum time, but he was having the same dilemma I was having. Maybe we were both hard up.

So we negotiated, and I negotiated with myself. I'd been doing my exercises and things had been pretty quiet down there. I hadn't tried vaginal sex in almost two years. I didn't want to risk a bladder infection but I was pretty sure my bladder had blinked out of existence for the moment.

I told him he should put his dick on a burner for the whole next day as an act of sympathy and that he had to go slow. While he put on the condom, I got into my physical therapy position and checked out my pelvic floor muscles. Open arms, let me tell you.

He was so, so, so nice once we were actually having sex. He was slow and regular, kept asking if I was okay, and waited for me to give him signals to dial it up. Apparently this guy turns into a prince once his sword is sheathed.

The pain on entry was bad, but it wasn't breathtakingly horrible like it had been in the past. As we got into it, the pain subsided and we were able to move around. Whether there was pleasure, I didn't care -- I was focusing on the simple fantasticness of physical intimacy.

We took a (fun) break and then tried again, this time with me on top. That didn't fly. We flipped around. It was hurting worse -- not my vulva but something inside, my cervix, my bladder, my gut. I had to stop. I tried to determine whether I had to fart (my farts are sometimes too polite to speak even to ask for exit).

I laid beside him with my eyes closed trying to figure out whether I was going to be able to stand up. Still princely, he didn't make a stink about stopping and said I should just sleep there. But I was in the kind of pain you need to be alone for.

I left, and this is where I test your memory. What was playing when I started my car? Cake, "Short Skirt Long Jacket."

I felt the universe winking at me.

At home I showered and tried to poop out (I love my blog) whatever pain had curdled inside me, but exercising that (pipe) organ didn't relieve the pain. It was almost dawn, and I laid in my bed laughing about the night, congratulating myself on a mission accomplished, and wondering if I should go to the emergency room.

Here's the thing: when you're in pain all the time, you don't know when you're in the kind of pain that means something bad is happening. I had this shudderingly intense pain centered on my bladder, stretching up toward my belly button and going all the way down through my mound. My vulva itself was dandy. If I were a normal person, I asked myself, would I be scared? Would I want to go to the hospital?

Yes.

But I waited. I thought, this is probably intestinal. Time will tell. If it's not better in a day, I'll go in.

The next day the pain was better, but it hadn't moved and it felt like something foreign was lodged in me. Every time I coughed it killed. My vulva burned a little, but not near as bad as prior post-sex days.

The pain eventually went away, and I still don't know what it was. I've never had problems with different sex positions, so I don't think it's a tilted uterus or whatever. The urology people don't think I have interstitial cystitis, which is another possible cause. I just did a pelvic MRI... I'm going to have to ask all my doctors and I'm afraid they won't really care to get me an answer. It's gone now, right? And it couldn't possibly be a new symptom of all that other wacky stuff going on down there, no, no...

As for the guy...I'm too much like a guy. Been there, done that, over it. Kinda. He's still sexy, and he's generally a nicer guy than my analysis above has made him out to be, but I'm indifferent about everything else. I guess I realize I don't want to date him -- or that though we might have a nice fling, it won't go farther and so it's already over in that Buddhist way, la la la, this is how I think about all dating, why don't I ever date?! Ah, but the sex! But I've now learned that the sex is just mildly good (even subtracting the pain), so why bother with more, especially with all that whining. He might be trainable, though, so we'll see.

The most important thing is that I have hope that I can have a regular sex life again. Penetration isn't a must, but it is the hardest test for my pain, and I was operational for a bit! That gives me hope for my entire reproductive system and for my sexuality and libido. I needed that. He may be a partial douchebag, but that guy ended up playing a huge part in my ongoing reseach, sponsored in this segment by short skirts and a relentless, singular pursuit.

P.S. Posted from my iPhone. No joke. Please excuse odd typos. There's no Internet for me to steal right now but I just HAD TO TELL YOU.

Just When You Think You're Ahead...

2009-12-15T18:43:00.000-08:00

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?

Pelvic-Floor Dysfunction, What's Your Function?

2009-12-10T15:42:00.001-08:00

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.

Ice Skating & A Glimmer of Acceptance

2009-11-04T19:36:00.001-08:00

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.

Feeling Better

2009-10-27T18:27:00.000-07:00

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.

Waiting

2009-10-21T16:27:00.000-07:00

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.

Follow-ups

2009-10-16T09:55:00.000-07:00

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.

Sisyphus and Her Ball of Theories

2009-10-09T12:14:00.001-07:00

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 :)

Not Shutting Up

2009-10-05T16:16:00.001-07:00

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:

Denial
Anger
Bargaining
Depression
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.

Happy Anniversary, Again

2009-10-02T12:02:00.000-07:00

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.

Handy Wacks

2009-10-01T07:51:00.000-07:00

Responsibility

2009-09-25T11:05:00.000-07:00

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!

Misery

2009-09-22T21:57:00.000-07:00

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.

Down to the Root

2009-09-20T07:54:00.001-07:00

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.

Still Not Okay

2009-09-19T23:02:00.001-07:00

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.

The Jilted Mop

2009-09-15T18:04:00.000-07:00

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

2009-09-15T16:03:00.000-07:00

Hallelujah, Manic Depression

2009-09-12T16:21:00.001-07:00

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.

Not Okay

2009-09-09T20:37:00.000-07:00

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.

More Dermatology Ideas

2009-09-07T18:41:00.000-07:00

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.

Clam-A-Rama!

2009-09-01T22:41:00.000-07:00

Easy to Spread

2009-09-01T22:40:00.002-07:00

Female Complex

2009-09-01T22:40:00.001-07:00