Friday, June 19, 2015

IBS IBS IBS IBS IBS

When I was in college, I had EXPLOSIVE DIARRHEA.  When you're a freshman with explosive diarrhea living in a coed dorm,

1) You think explosive diarrhea is totally not abnormal and don't go to the doctor;
2) You instantaneously train yourself to hold in explosive diarrhea until
3) The floor is entirely quiet because, you convince yourself, everyone is at class or having quiet but distracting sex;
4) You go to the bathroom and explode diarrhea out of your body;
5) And after some time, you learn how to explode diarrhea out of your body without making a sound.

I was pooping out water.  I don't know why I didn't go to the doctor.

Over time, I figured out my diarrhea triggers: soft drinks, coffee, fried foods, fatty foods, beer, chocolate, candy, Wheat Thins.  I could eat a single Tootsie Roll and have to run to the bathroom.  I avoided those foods, and my bowel issues got better.  At some point I figured out I had irritable bowel syndrome.

By the time I was in my mid-twenties, my IBS had become mostly constipation.  I ate high-fiber cereal, and it only backed me up.  When my vulvodynia started in late 2006, my cousin Kim had already gone gluten-free as she and her son have celiac disease (here is her blog).  So about 7 months into vulvodynia, I stopped eating gluten.

It helped.  I started pooping better and my headaches went away.  I had been napping most days for hours, and that stopped too.  And my vulvodynia improved a smidge, probably because there was much less going on in my abdomen in general.

Today I saw Dr. Abdelmalak again.  I went in with no news to report.  For like two seconds after my last right-side genitofemoral block, my pain got better.  But it expanded again, and I decided I needed to hammer home with Dr. Abdelmalak my observation that food is a major contributor to my pain.

I thought Dr. Abdelmalak would suggest another nerve block or another attempt at cryoablating the nerve.  But instead, after some discussion and an examination of my abdomen (pressing it all over) and finding that my genitofemoral trigger points are not so bad right now, he decided to focus on IBS.

A-ha!

It was kind of strange.  We talked a lot about pressure to the lower abdomen -- how if I cough, sneeze, laugh, when my bladder fills, when I move, when my cat steps on my belly, how with any added pressure my pain gets much worse (when I am having a bout of laughter, I find myself contorting to relieve the normal downward punch of the laugh.  It's kind of awful, but laughter is so wonderful).  And from that conversation and a quick question about "alternating diarrhea and constipation" -- "Yes, I have IBS" -- he decided to put me on Bentyl, a med that treats IBS.  (As a side note, to add TMI to TMI, I can feel gas moving across my lower abdomen, centered over my pelvis, because it presses down and shoots my pain up.  Previous doctors have told me that my bowels don't go that low and that the constant pain I had in my lower left side while still eating gluten was my period, not my bowels.  Ha!  Screw you!  I know what my period feels like, dingbats!  I wish I could write condescending letters but I don't even remember the doctors' names.)

As in college, treating my IBS outside of avoiding food triggers has never occurred to me.  I knew about Bentyl, but I was always like, "That's for them."  I don't know who them is if it's not me.  Maybe my explosive diarrhea never seemed to be a serious problem -- after all, it wasn't dysentery.  And maybe not pooping for a week (or two when on Effexor) seemed more a medical marvel than something to address.

Edit: I remembered where I remembered Bentyl from.  I was actually prescribed it years ago by a gastroenterologist.  I wrote about it on here on a post with a nasty title.  It was at the outset of my Summer of Despair, after which I gave up on seeing doctors for a while.  I don't think I took any of it.  I think I was too deep into the mental state with which I chose the title of that post.

I'm to take Bentyl up to 4 times a day (every 6 hours), and Dr. A says it'll take a few weeks to start working.  Alongside Bentyl, he prescribed something I've always thought I should have -- a muscle relaxer.  OMG!  I'll only be able to take it at night, but I'm interested to see if it has any effect on my pain.

And then I walked away with my paperwork.  I've heard a few elderly people say, "Don't get old."  I always think, well, I'm already in pain all the time.  I get that more things happen in a person's later years, but I feel stuffed up on medication as it is.


And I have a hilarious list of issues, some of which seem redundant, some of which I thought I didn't have (manic-depressive NEC; I thought my doc and I decided it's not accurate for me, and I had to google NEC, and it seems like it's the same as NOS, not otherwise specified, but I have no idea why there's a different term and why it's "manic-depressive" and not "bipolar disorder," and my anxiety should be "MFing anxiety," not "anxiety state NOS"; listen up, I'll tell you how to specify it: it's a MFer) -- and some of which aren't listed (cluster headaches, arthritis of the hip, even IBS).


These lists made me laugh.  If I live out my natural lifespan, it'll be hilarious to see how long these get.  I think my grandpa was on 7,000 meds when he died and probably had 40,000 items on his "Problem List."  He died the day before his 92nd birthday.  Life accumulates.

Friday, May 15, 2015

Post-block-again-update-pain title

Okay, so, my period is over, the yeast are back to their normal subsensory squirmy existence...

Mmmm!

And my pain is back to a lower-than-usual level.  I don't have the burning I had on the face of my vulva when I was trying to kill the yeast using methods meant only for normal vulvas.  Vulvodynia does not like Monistat, nor does it like even the tiniest drop of tea tree oil, which is not normally a bad method for fighting yeast according to the ultimate guide to yeast infections.

I think my skin's overreaction to topical treatments (even lidocaine; I need the compounded version) means there is some idiopathic vulvodynia going on, something that is inexplicable.  Maybe it's driven by neuralgia, but I think it's just stupid undefined stupidity that a lot of women have that is undefined and stupid.

My pain still doesn't like most foods, and it's not thrilled with sitting, and it doesn't like moving around, and peeing is still painful.  But it's better by a degree or two.  Wait.  Wait here.

I went to the bathroom and punched my stomach a lot.  The site where the doc gave me the shot is really really sensitive.  Two weeks later?  And the general area on each side of my bladder/uterus/whatever, the pantyline but spread inward, is really sore, as usual.  Those are the genitofemoral trigger points.  But poking everything didn't radiate pain to my vulva, which is good.

I feel it's important to remember that my pain STARTED as pain just below my bladder/above my clit/however you want to put it, and it included increased pain with peeing that would RING and RING and RING for a half-hour or so after peeing and then die down.  And moving was problematic.  In other words, maybe getting rid of the pain means moving back through the stages of pain I've had.  Peeling off the layers down to the start of it.  Because it has certainly gathered more and more pain-fluff around itself over time.

I can't give up peeing, and I can't stop moving (well, if I want to get paid), but I can stop sitting so much and I can keep eating carefully.  GOD EATING CAREFULLY IS SUCH A BITCH!!!!!!!!!   I can't eat fruit anything (bananas are okay) or tomato anything or spicy anything or sugar anything or coffee or tea or chocolate or anything!!!!!!!!!!!!!!!!  Gluten-free is NOTHING COMPARED TO THIS SHIT.  I wrote my doctor a note on MyChart telling him DUDE YOU NEED TO LSITEN TO ME WHEN I SAY FOOD IS BAD (minus caps, typo, "dude," and anger).  I don't know if there's anything he can do to help except tell me not to eat things that hurt... THIS DIET IS RIDICULOSU.  I really don't think I have interstitial cystitis but my pain is so sensitive to food that I feel like there must be a connection.  A lot of people with pelvic pain report that their pain is sensitive to food.  WHY WHY WHY WHY I'm not editing this blog post.  It sucks but this is the only place I write down crotch shit and I've gathered that seeing someone else freak out about her crotch helps other people with crotch problems.  THIS IS ME FREAKING OUT!

Tuesday, May 12, 2015

Hope sucks

My pain was better for a bit and now it's back to bad, and it's clear that food is the worst thing ever invented by man.  Eating makes everything worse.  I'm so exhausted by all this.  Hope is the most exhausting thing ever invented.  I am so tired of it.

I can't believe I have this pain.  It doesn't seem real.  It seems like I should be able to think myself out of it.  Like when you're in a dream and you die and you're like "Okay, let's say I didn't die" and you're not dead anymore.

I am running through Duolingo.com brushing up all my French categories and today I had to translate "La tortue est verte" -- the turtle is green -- and I realized it's been a long time since I thought about how turtles are green.  I know it's a grownup thing, that more items populate the mind and we don't care what color turtles are anymore because we know they're green, it's a fact, we're done processing it.  But I don't want to stop thinking about how turtles are green.  That seems like the most important thing in the world.

It's sensory.  "The turtle is green" is a way of saying there are a billion things to sense besides pain.  It's just hard to sense any of them when you're in pain.  And after a nerve block, all I do is monitor my pain.  There's no other sensation that matters.

I don't want to keep doing the nerve blocks.  It's much easier to be in pain than to keep hoping for the pain to stop.

Wednesday, May 6, 2015

Post-another-shot post

I'm hella depressed.  These shots always stress me out, but I always forget how much.  And other stresses are adding together to make one big pile of Netflix.

My pain has changed.  In fact, it's changing all the time.  I have some burning, but I think I also have a yeast infection.  (TMITMITMITMITT.)  So I can't tell if I really have burning or if I just have a party.  A party I've tried to douse with things that burn so bad (Monistat) that I can't keep using them.

There's this thing out there called YeastAway or something stupid.  It has boric acid in it along with other less proven yeast remedies.  And it doesn't burn.  And I have to find it but you have to keep it in the fridge so I have to go to the places where they keep things in fridges but all those places are much farther away than depression wants to drive.  Well, I went to one.  And they only had regular probiotics.  No YeastThingThatGoesInTheCooch.

The good thing about YeastWhatever is that I rarely have to use it more than a few days.  So I keep the leftover things in my fridge until beyond when I probably should and use them whenever I feel yeasty and so far I haven't started any new species that I know of.

I think Amazon carries it.  Maybe one of these days I'll check.

The other change in my pain is that, like, imagine there were a rod poking through your clit and into your bladder.  And as you move around, that rod zings and pinches and zaps you.  But if you don't move, you can't tell the rod is there.  This pain isn't new.  I've had pain with movement all along.  It's just extra-zingy now, and it's also extra-focused.  It used to be spread all around in three dimensions and now it's essentially one-dimensional pain.  And I don't know if it's like this because other parts of my pain have peeled back or if it's a new and maybe temporary phenomenon caused by the nerve block.

Once my crotch recovers from the Monistat burn (tried it again this morning, duh duh duh duh duh, it's like I tripped and sat on my iron for a minute), I might be able to tell what's going on.  In the meantime, I'm going to try to leave work right when it's time to leave instead of curling up on my desk to take a nap.


I have been taking a nap at work after work for months.  Not every day.  Just a lot of days.  For a long time I was curling up on the floor and then one day I was like, the floor sucks!  It's 0.125" of carpet on top of concrete!  I'm sleeping in this 42" space instead.  And it works.

Friday, May 1, 2015

Nerve block #83747474838229

I posted this on Facebook today:

Some cultures are superstitious about the number 4 because it is a homophone of "death" in their languages.
Yesterday I had the 4th right-side genitofemoral nerve block that immediately took away my pelvic pain.  But none of the 3 previous right-side blocks have resulted in continued relief of my right-side pain.  And while my left-side pain is still low, the right side turns out to be the main dragon down there.
What that means medically = a lot of big words.
What it means personally = we die & are reborn many times over the course of our lives.  These years of pelvic pain have seemed to be cycles of death without rebirth.  Every time I think I have finally completed a cycle of death, I resuscitate to something that is not quite life.  The pain is still there, and I am still in every moment managing it while carrying out the actions of a living thing.
Let 4 be worthy of superstition.  Let it be synonymous with death; let my pain respond to the steroid this time and, if complete relief is impossible, let it at least lessen to some degree.  Give me space to forget once in a while that I have pelvic pain.  Moving around yesterday while the lidocaine was still in effect, I remembered how easy it is to get off the couch, to step over the cat, to do all the daily functions I force my body through.  I am willful; I am proud; I do things my pain doesn't like because if I can't kill it, I can at least tell it to fuck off by ignoring how it whines.  Maybe I should be more careful with it, but I am too angry.  If it is a dragon, I am one too.
If I manage to kill my pain someday, I don't know what my life will look like.  Pain and anxiety are by now my life's ballasts; I don't know if there is anything else holding its shape.  If I crush both, will I fly up like a feather?  How will I reconstitute into something stable and alive?  If I don't look to the other side, where I am rid of these things, will they ever leave me?  Are they still here only because I am too afraid to let them go?

*

I just want to add a few notes.
- This is actually right genitofemoral block #................ 7? But only 3 previous right genfem blocks caused immediate pain relief.
- The skin at the site of the nerve block was still numb this morning, and even tonight when I removed the band-aid (I always forget to remove them) it felt numb in a subtle way. I think the doc numbed the site extra extra extra well this time as I can usually feel the nerve block needle poking around and the actual block usually hurts as a consequence. I couldn't feel it at all yesterday -- just the slight pressure of it moving into place. The doc, as usual, let me watch the needle move around on the ultrasound screen as he injected the block. I think it would make some people sick, but it calms me down.
- The site of the block has, at the same time, been very sore all day, and it seems to be getting worse. I'm watching for infection. The pain is mostly with movement.
- Peeing this morning was still mostly pain-free, but shortly after I got out of the shower, my pain shot up like a firecracker. It's been up and down all day. The pain is still almost entirely on the right side.

I'll keep you posted about progress.

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.