Thursday, April 30, 2015

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


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!