Monday, April 13, 2015

A sort of PTSD

I mentioned in passing a while ago that I feel like I have a sort of post-traumatic stress disorder about my pain.  I don't know if PTSD is the right category for it, but it goes like this.

A couple weeks ago I developed a UTI.  My pain grew over a few days, and I didn't think it was a UTI at first because I've gone through flares like that before without having an infection.  Then I went upstairs to pee while working at the restaurant, and I could hardly walk back down the stairs afterward.  Back on the floor, I teared up, half because I was in pain and half because I was so pissed off at being in pain.  The other servers let me go home early.  I knocked myself out with gabapentin and slept.

The next day, I was okay at my office job, but that night I started having blood in my urine.  I was up all night and left my boss a message around 3 or 4am letting him know I'd have to stay home.  The pain at this point is invisible in my memory.  All I can remember are the effects of it.  That I was on the toilet a lot.  That I was scrambling for any medicine that might dull the pain.  That I could hardly feed my cat because moving was so difficult.

I asked my mom to bring me UTI test strips.  The test came back as usual, leukocytes but no nitrites.  Nitrites are a sign of bacterial activity.  I figured I was just in a bad flare and I'd wait for it to pass.

My mom also brought me pyridium, which eases pain from UTIs.  It helped.  I took cranberry pills just in case.  At the end of the day, I felt like the pain was going away.  I relaxed in bed, had renewed confidence against the pain, slept easily.

I woke at 3am out of a dream where my pain was a woman crying for me to act.  I ran to the toilet, and in the dark, all the orange from the pyridium looked like blood.  Maybe there was also blood.  But it is good that my urine was any color but normal.  I forced myself to shower, took my cushion in my car so I had a chance at driving, and went to the closest ER.

I was the only one at the ER.  Everyone who talked to me was a man.  I realized I'm not used to telling my story to men.  But it was as if "pelvic pain" was already in their language.  They didn't ask how or why.  I might've said something about neuralgia and how I didn't know if it was a UTI because the pain can get so bad without one.  The doctor said he'd treat me for a UTI anyway.  I made it to the drugstore.  I made it home.  I took the macrobid and went to sleep.

Over the next couple days, the pain went down.  But it still fluctuated.  When I had finished taking the macrobid and the pain was still fluctuating, my mood started flipping all over the place.  In the bathroom at work, I'd panic at the toilet paper, unrolling unrolling unrolling it, pressing my nails into the wall.  I analyzed the rate of change of pain as I peed.  If it got worse at the end, that meant the UTI was coming back.  I panicked at home and in the car and in the grocery store and any time the pain upped.  Running around the table chasing my cousin's son, a crackling fire.  I wanted to sleep forever.  I wanted to die.  Depression tugged me underground, weights on the line.

My period crept up.  I felt it all over my body.  It took forever and a day to arrive.  I kept saying the pain was because my period was coming, but my period wouldn't come.

Now it's here, and the pain is normal, and I realize how terrified I was for days and days, someone hammering nails into my bones.

It's been like this the whole time to varying degrees.  Always fear.  Always fear that it will worsen.  I have no trapdoor.  No vicodin or tramadol or anything of the sort.  No escape valve.  The only thing I can do is knock myself out beyond sensation with gabapentin.

With chronic pain, you're always thinking about what's next.  Vigilance.  The leopard prowling in the dark.

And one of the things I hate about it most is being alone.  Driving to the ER alone.  Being on the toilet alone.  Crying alone.  Having no hand to hold.  Being at work unable to say it.

I have lots of support.  But there is no one always with me.  I have no one at home but my cat.  Sometimes, when I've been at my worst, she has climbed onto my chest, curled her paws under her, and closed her eyes.  Like a leech siphoning it out of me.  And I lie open to her as the ocean to the sky.

Monday, April 6, 2015

Yogurt

Hypothesis: eating a giant bowl of plain yogurt short-circuits a flare.

Evidence: 3 confirming instances.

Question: whaaaaaaaaaaaaaaat?

I had a UTI, so I started shoveling yogurt in to stave off a yeast infection while taking antibiotics, and every time I've done a big shovel mid-flare, the flare has fizzled out.

Maybe this is a fluke.  I've definitely shoveled yogurt in before.

Standing here at work, hardly wanting to move because I overindulged in jelly beans and other bunny things at Easter, I chugged milk and nothing happened.  I almost never drink milk.  When I do, it's a pain reflex, like, reduce the acid or something.  I don't know.  Milk seems like it can fix pain, right?  Like it'll put out the acid burning my vulva.  But no, no.

So I shoveled in some yogurt because milk will give me a tummy ache and I'm still on antibiotics anyway, and now I'm sitting here hovering around a 4 pain-wise.  Maybe even a 3.  Instead of hot-burny, my vulva feels ringy-cool.  This all makes sense to someone out there.

I know better bowels mean less pain, but I've never observed a direct, near-immediate link between yogurt and my pain before.  Sugar and my pain, yes,  Immediate.  So.... yogurt is the anti-sugar?

Of course it is.  But immediately???????

Whatever.  Now that my birthday's passed and there are no candy holidays until Halloween, I'm off sugar.  Honey and maple syrup are still okay unless I find that they trigger me (mixed evidence).  Most fruits are not okay.  So I will be feeling better just from that change.

This is the end of my very quick blog post that is the equivalent of running up to all my vulvodynia friends and shouting my new amazing news!  Unfortunately, I have no in-person vulvodynia friends to run up to.  Hi out there!

Wednesday, March 18, 2015

I have to eat better

Yesterday before and after my doctor's appointment, I wanted to die.  I wanted the elevator to stop and no one to find me.  I wanted to find some water and sink myself in it.  It's not good to tell people you want to die.  They freak out.  But it is a common thought when you have chronic pain.  I've heard countless others say it.  So I might as well write it here.  If you have chronic pain and want to die, you're nowhere near alone.

By the time I had driven to Target to get my refill and sat in my car in the parking lot for a while listening to Ace of Base, I didn't want to actually die.  So I decided I would pseudo-kill myself.  I went home and jammed ice cream, Cheetos, white-chocolate peanut butter, and wine into myself.  It turns out not to be a lethal combination, even at high doses.  Even coupled with chick flicks.

Of course, my food choices were not random.  All of those things (save maybe the Cheetos, but I did eat the whole bag) are bad for my cooch.  Murderously bad.  It was an act of vengeance, all of that food and wine and chick flicks.  A torture.  Don't tell me that I can't torture my cooch without torturing myself.  I mean, of course I can't.  But it's sort of like self-flagellation.  I was whipping the part of me that is awful.

So today at work it's don't-sit-down day.  Don't-eat-wrong day.  Don't-not-pee, don't-not-drink-water, don't-pee-too-often day.  Don't-listen-to-that-Nora-Roberts-book-you-have-checked-out day.

Yesterday, my doctor said I am one of his favorite patients.  Yay!  Because I ask questions and I read about my problems and I do what he says... wait... my mind hopped over to food, the main thing I haven't been doing to improve my pain.  I haven't directly disobeyed him because he doesn't believe how much food influences my pain and so hasn't given me strict dietary orders.

So it makes sense that I went home and tried to kill myself with food.

I have to eat better.  I have no willpower.  I suck.

I have to eat better.

I have to eat better.

Eating better won't cure my pain.  But coffee, sugar, chocolate, wine, alcohol in general, spicy food, acidic food, these are all acts of vengeance every time I engage them.  I can't predict exactly how my body will react, but it's like swallowing a spoonful of some radioactive substance and hoping the atoms don't decay before I poop them out.

I know that self-injury is part of why I don't eat better.  I hate my pain, so I eat as if enough bad food will suffocate it.  I did this in my last relationship, having horribly painful sex as if I were a wolf raising my hair and baring my teeth.  It is all irrational, and I think it's quite normal.  I'm acting out my hatred.  I'm being human.

I know I'm getting better.  When I'm not in a flare from food, the left-side pain is so low as to be invisible.  The right side still flares by itself, and it still packs a gigantic physical and psychological punch.  But I want to be a good patient.  I want to give these nerve blocks the best chance for success.

The nerve block I had in my hip a few weeks ago did nothing for my pain.  Not even my hip pain.  So yesterday, my doctor examined my genitofemoral trigger points again and BAM, down the pain shot from the right trigger point to my vulva.  I'm going back for another right genitofemoral block.  This is the nerve we cryoablated.  It should have died.  It must die.  I will not try to kill it with food.  I will not try to kill it with food.  I will not try to kill it with food...

Thursday, March 5, 2015

Work

I know I am getting better.  It clicked in my mind, all the data.  I've told you it all already, but it wasn't until I gathered enough data over a long enough period of time that it clicked in my mind that I am getting better.

But I've been in a pain flare for over a week, and it is hard to keep my head up.

Sometimes I flash from another universe back into this body and I see my pain as if it's new.  It makes me want to sleep.

I thought I was out of the flare over the weekend, but maybe it was that I was standing.  I have been sitting at the office.  I am so tired that I don't want to stand.  But my pain rises and rises, and I think it rises over the course of the week.

I wrote this poem about it while at work.  I go to the bathroom and it is terrifying to pee, but it is also the only place at work I can show that I'm in pain.

Like a lightning bug
I stop my blink
and settle down to bed.
Still the day rolls
and the silence rolls
and there is not a scrap of shadow
to hide in.
I fold
like a moth
with no light to chase
and grip time and time and time
before the unfolding.
It is so bright here
and I am empty,
all white,
I am a starved belly
feeding on gristle
without a body
to hold it.
I settle
into soft ground
as if a weight greater
than my shape
and wish for the plunk
plunk of rain
to help me sleep.
I am a shell, a
beetle,
I cannot believe
how thin my wings
that crumple like tissue
inside me.
I cannot believe
they lift.
I am
an antlion.
I carve my cone
into the sand
and wait and throw
and digest.
That I am so tricky,
so clever,
is my distraction.

Friday, January 30, 2015

How

This article details the how.  How a life can tumble away from itself.

Julia Cameron, in her book The Artist's Way, suggests that God, or god, or "god," or the universe, has a pact with us about our creativity: if we take care of the quantity (the rate of creative output), god will take care of the quality.

Universe, if I take care of the present, please take care of my future.

I honestly have not been tending the present.

I have been whitewashing my past so its events look like guidance, rearranging it like it is all throw pillows on a couch.

I have been looking at a face fifty years from now, features grown subtle under soft flesh.

I have been flinching at forty, at what my life won't be because I've miscalculated my trajectory every time I've aimed.

I forgot, all this time, that half my life ago, I swore I wouldn't collapse around career, marriage, children.

I swore I wouldn't fold up all of my existence and measure it against three data points.

I didn't know then how difficult it would be to strike out alone and walk a course undefined.

Life gives us models to make life more efficient.

I feel like I have no model to follow.

I have to carve it myself and, like Michelangelo, chip away all the parts that are not David.

Wednesday, January 28, 2015

Carry my joy on the left, carry my pain on the right

Maybe I should've known, dancing my limpy dance to "Who Is It?" in my apartment in 2008ish, that Bjork's lyrics were a truth in my own life...

Carry my joy on the left
Carry my pain on the right



That's how my pain is now.  I get glimpses of how little pain there is on the left.  I know it best when I insert/remove a tampon and I feel pain only on the right.  I want it to be wonderful, but it is confusing.  The pain is still bad all the time even though it's smaller now.  I can't tell the left side is quiet because the right side is still so loud.

I can't look back on bad events in my life and see the good.  My last relationship, my time in college.  I only see the bad.  I wonder if the mind does it to keep the body from tripping again into the same situation.

I am dating, but if I sniff my ex-boyfriend in someone, I jump ship immediately.  It is probably better to do so, but I have never had such a primal aversion before.

I am dating a guy who is many good adjectives, but I am not swooning because I'm afraid I'm wrong.

Dating him is like trying to get a Rube Goldberg device started against a wind.  And I think it is because I am a chaotic pendulum, carving out a system predictable from above but not from inside.



I've always preferred night, but for several winters I've been terrified when the sun goes away.  That it will never come back.

My psychiatrist told me to take Vitamin D, that there's no point in getting a Vitamin D blood level because new research is showing that what is normal by lab standards may not be good enough for the brain, especially in winter.

"Are you going to take it, or are you just saying you're going to take it?"

I'm taking it.

My psychiatrist in college told me that there is little depression in Iceland despite their being so far north and it's because they eat so much fish.  She told me to take fish oil.

I'm thinking a bell dress would be a better antidepressant.

I would wear it all the time.  It's amazing the things people don't tell you.  I am getting better at not imagining what they might think.  Like how they might say to each other that I never seem to wear anything but my bell dress.  That my bells keep getting stuck in the janitor's vacuum but there is no bureaucratic recourse for the accidental dropping of bells from one's dress.  That they are convening a weekly meeting to amend the company's conduct guidelines to exclude bell dresses.  That their initiative has run aground when a kind-hearted soul likens my dropped bells to the pearl earring she lost down the drain in the ladies' room, requiring maintenance to disassemble the plumbing in that half of the building.  That they are now considering limiting staff wardrobe to items permitted to those under 5, i.e., to everything that no one can swallow.

That the head dinging is getting creepy.

I admire Bjork because she vents herself so efficiently through her art.  She shows me that I can vent efficiently too, that if I am worried about the sun I should scream that worry into the universe instead of reprimanding myself for being nonsensical.

That if I am a pendulum with two legs, I should relish being jerked around by my tether because my tether is the reason for my swing.

I have forever been a bundle of nonsense.

I believe sometimes that I am wordless.

I believe sometimes that my only language is the incessant whip of the nonsense inside me.

One more picture of the chaotic pendulum:

Graph of the time for the pendulum to flip over as a function of initial conditions.

Resemble much?


Tuesday, January 13, 2015

Arthritis

After telling 3948720375382750293843249208 doctors that I have hip pain and that my family has a history of arthritis, Dr. Abdelmalak said today that the pain I've had in my hip since my pelvic pain started 394820392845 years ago is from arthritis.

The good news is that my genitofemoral nerves are now calm.  We tried to find the trigger points at the appointment today and both the left and the right points are indetectable.  (Trigger point = poke lower abdomen >>>>> horrifying pain in my vulva.)  And the pudendal nerves, we're assuming, are still quiet.  I didn't ask him to "look" inside with his fingers to confirm.  Fuck the pudendal portion.  All of my pain is north of my urethra, so even if my pudendal nerves are still irritated, they are not at play.  Or if they are, it's the clitoral branch of the right pudendal nerve that's the problem, which is apparently hard to treat via injection.

Oh yeah, so my pain is mostly in the upper left quadrant if you're looking at a cooch with the clitoris pointing north.  Or on the front right side if you're me.  But there is resonant pain elsewhere.

So as I was poking around trying out my trigger points today, the part that hurt worst was along the right panty line, the point that I've told 3940223849320894839024893 doctors about.  So Dr. A folded my left leg up first and twisted it and I felt no pain in that hip.  He did the same with the right leg and that point pinched and spread along my leg.  And he said it's arthritis.

Despite 039480923890328493081948393 doctors and physical therapists saying that it couldn't be and 39248023990834 of them saying that as my X-ray didn't show arthritis, I couldn't have it.

Now I go for an intra-articular injection in my hip along the panty line.

Maybe this is why the anesthetic that went along with the right-side genitofemoral blocks made my pain go away.  Because it was broad enough to include the hip.  But the steroid does not affect such a broad area, so the results from the steroid weren't long-term.  And maybe that's why the diagnostic (anesthetic-only) block I had that almost eliminated my pain was also the one that knocked out power to my right leg.

And maybe this explains the weird swelling I've had occasionally on either side of the right panty line that 958049 doctors said was nothing because it wasn't a blood clot and I'm young.

And maybe this is why I have occasional all-over irritation around that hip.

And maybe this is why going on a four-hour hike has me dragging my foot up the stairs on the way up to my apartment.

And maybe this means I won't hike the Appalachian Trail after all.

And maybe this is why sitting for a long time or having my leg at weird angles makes my hip pain worse and makes my leg feel weak.

And maybe this is why certain leg positions give me more vulva pain.

And maybe this explains why food makes my pain worse but not consistently.  Because it's about inflammation, at least in part.

And maybe this means that if I had been a 60-year-old woman when my pain started, doctors would've looked beyond the vag 9348203984102 years earlier.

I always bitched that they were pigeonholing me because of my age.  Maybe I was right to find issue there.

I am glad I don't have pain shooting to my vulva from higher up my genitofemoral nerves.  That is good.  It sucks, BTW.

I don't know what this means big-picture-wise.  What the fuck is wrong with me that I have two sets of fucked-up nerves and a fucked-up hip?  Did the latter cause the former?

Is this why having a lovely night of sex for the first time in 300000000000000 years kicked off my pelvic pain 948502948529084290852 years ago?  Because my hip was doing things it wasn't used to?  Or did I injure it that night?  And my pain kept digging and digging as I tried to compensate for the injury?

Will all the psychosomatic parts of my pain fall away now, please, if they are present?  Like maybe chocolate actually makes my pain better and I was just fooling myself and I should eat as much as possible?

I'm not telling anyone when my next appointment is.  I still need people to ignore that part of my life and talk to me about regular things.  Some people get a pass.  Like my grandma.  It can still be the first words out of her mouth when she calls.  But I went into my appointment today ready to tell the doc I was going to give up for a while, and now that I have a house of cards to build again, I need to stay out of the wind.