Thursday, December 1, 2011

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

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.


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

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?

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.

Friday, November 18, 2011

No sugar! No sugar! No sugar!

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...

Thursday, November 10, 2011

Doing better for myself

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.

Monday, November 7, 2011

Slutty Costume Rationale Picture Book

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.

Tuesday, October 11, 2011

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

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 have recurrent thrush infections and sex was ALWAYS painful. Even when I treated the thrush, the pain, redness and irritation didn't seem to go away entirely. Sex hurt and I was left with a burning feeling for up to an hour afterwards. About eighteen months later I had a pap smear which identified CIN1 and HPV cells. CIN1 is low grade abnormality which needed to be monitored and eventually cleared itself without needing treatment. The vulvodynia and thrush infections continued, even when my partner used thrush treatments as well.

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

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

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

Because of the vulvodynia and infections, I had to give up using tampons as they were painful to insert and remove and seemed to increase the chance of a thrush infection. I had to stop eating yoghurt (especially natural varieties), bread, citrus fruits & pineapple juice. One time a large 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 avoided exercise which would make me sweat unless I could shower straight away and had difficulty riding a bike due to the discomfort. And obviously, I avoided sex as much as I could.

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

Eventually I came across an article that said thrush infections can clear up without treatment. That was when I stopped using treatments for the thrush and bacteria. I stayed away from things I knew made the vulvodynia worse and stopped treatments. Surprisingly it seemed to help. I had 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 have only been two times I can remember that I have experienced relief from my symptoms. The first was after a major cold sore attack (on my mouth) and I was prescribed anti-viral drugs. There were one or two months were I was symptom free before the pain and irritation returned. I should note here that I do not have genital herpes, I have been tested countless times and don’t experience blistering, but the drugs must have helped my immune system or something.

The next time I had relief from symptoms was during the course of Gardasil - a vaccination against HPV. For some reason my symptoms would disappear within days of the shot and then return before the next shot was due (Gardasil is a three-shot treatment over a number of months). When I realised the connection I began to think I had some sort of virus that was causing 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 joys and fears, I was worried about whether I would pass something onto my child during childbirth as well as how my bits would cope with the trauma of childbirth while they were already irritated. Thankfully I delivered a healthy child naturally with the help of an epidural and didn’t even need stitching afterwards.

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

Only a few months ago I went to the naturopath for my daughters intolerances. The naturopath prescribed me a probiotic: Bioceuticals SB Floractiv. Most probiotic tablets contain bacteria but this one contains a yeast: Saccharomyces cerevisiae (boulardii). This particular yeast can create ‘killer toxins’ that are safe for humans but deadly to other forms of yeast. I took one tablet a day for a few weeks and only experienced some minor constipation which was relieved by drinking plenty of water and adding psyllium husks to my breakfast cereal. All my symptoms have disappeared and six months later I am still waiting for a relapse. 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 story helps you in some way. Apart from the Floractiv there have been other changes that I’ve made which have helped both the vulvodynia and chronic fatigue. Drink plenty of water; add psyllium husks to your diet; cut down on dairy foods, sugar and anything that is processed; no caffeine (I’m super sensitive to its effects); no alcohol; use plenty of lubrication when having sex, too much is better than not enough; go and pee straight after sex, if it hurts then pee in the shower as the water will dilute the urine; if you do need to use a thrush treatment, use a low dose cream over a longer period of time instead of a pessary; get enough sleep, ‘enough’ is a different amount for everyone. 

Saturday, October 8, 2011

So, are probiotics evil?

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.

Tuesday, September 20, 2011

I am trying not to get dumped on the equinox

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.

Monday, September 12, 2011

Self-esteem manifesto: real-life examples

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).

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.

Friday, September 9, 2011

Vulva fantasies

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!

Tuesday, September 6, 2011

My self-esteem manifesto

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.

Friday, September 2, 2011

Eventually, evidence is proof

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.

Wednesday, August 10, 2011

The cycle of health anxiety

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.

Friday, July 29, 2011

Swimming out to the buoys

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."


"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.

Thursday, July 28, 2011

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

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,

Tuesday, July 5, 2011

How ill is mentally ill?

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.

Tuesday, June 7, 2011

Premenstrual relief & pain update

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."

Sunday, June 5, 2011

The failures of doctors and mechanics

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.

Wednesday, May 25, 2011

Everyone's taunting the gluten-free 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.

Monday, May 23, 2011

Why do antibiotics make vulvodynia worse?

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.

Tuesday, May 17, 2011

Having good sex when you have pelvic pain

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.

Thursday, May 12, 2011

How to Give a Urine Sample

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.

Monday, May 2, 2011

Hacking Away at Life's Path

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'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.

Thursday, April 14, 2011

Playing Doctor, Psychiatrist, and Physical Therapist

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 I should hold it down just fine when the terminator arrives.

Tuesday, April 12, 2011

Idiopathic Idiopathy

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.