Thursday, July 9, 2015

Signing off

The hair that fell out of my head from all the steroid shots is back. When it's down, it's in cute little curls, like Audrey Tautou minus the face. But it doesn't stay down. It mostly does this.


It looks like the wind is blowing, but I promise you, it needs no wind.

There's been no change in pain since I started the IBS med.  But I am only taking 2 pills a day right now.  I can take up to 4 per day but they have to be 6 hours apart which goes against the recommended daily allowance of 8 hours of sleep per night so I've been writing to Stephen Hawking about how we need better math.

I quit my desk job to go back to serving full-time.  I've been thinking about going back to serving for over a year.  It never made financial sense.  I had very little breathing room in my budget and a lot of debt, student-loan debt from a graduate degree I never finished and credit-card debt from car repairs and medical expenses.  I got a weekend job at a restaurant back in August and funneled all my extra money toward my debt, which alleviated a lot of stress.

But in late winter I started funneling all my extra money toward my savings.  My office's situation seemed tenuous.  Then my cat got sick.  Hundreds of dollars were flying out of my pocket to figure out what was wrong with her.  So I quit my day job.

While I could manufacture 7,000 reasons why I had to leave my office job because my cat was sick, the real reason is that it just didn't feel right to stay.  I had been working seven days a week between the two jobs.  My office job was never going to be a career for me, and I was staying there because I was too scared to make a leap back to full-time serving.  That fear fell away when I didn't know whether I was going to lose my cat.  When I was waking up multiple times a night to get to her with something disposable before she puked.  Everything fell away.

I took my cat to a second vet after an initial diagnosis of hyperthyroidism because I had a feeling her normal vet wasn't being very thorough.  (A little birdie high-school-friend vet in Chicago wasn't convinced either.)  The new vet said, indeed, the first vet wasn't being very thorough ("stupid," she said).  She had me try to figure out why my cat was still puking on the thyroid med -- from the med itself, from the pill pocket she took with the med, etc.  When no changes I made seemed to work and my cat puked four times one morning and I had to work at the restaurant, my dad came over to cat sit and my vet met me that afternoon, on a Sunday when she was closed, to take blood to confirm that the main problem was still hyperthyroidism.  She gave me food for hyperthyroidism, told me to take my cat off the thyroid med completely, and gave me a med to treat nausea if needed.

The first vet had told me there is no dietary remedy for hyperthyroidism.  As this blog has shown...

doctors vary.

Well, puke puke puke, I started giving my cat the nausea med every evening.  Somewhere in there was my last day at the office.  Then, at the vet's suggestion (via email; very modern, this senior citizen), I kept my cat on the med until it ran out.  It's been a few days off the nausea med and of course it's scary to say it, but she hasn't been puking.  And she's gaining weight.  Her face has filled back out (which I can apparently tell despite all the fur).  Her appetite and behavior never changed, so it was as if I was the only one going through all the craziness and she was just puke, eat, puke, eat, run around, jump, I'm a cat, puke, eat, birdies!, birdies!, snooze, purr -- it was so strange.  It's still strange.  I put her food next to my bed so I can monitor her and it stinks to high heaven but it's a delight to see her eat.  A gorgeous sight, like that Cure song says.

It gives me a lot of respect for people who take care of others hand and foot, like my grandma did with my grandpa.  She did essentially what I'm doing for my cat except she did it for years and years and years and years and years and my grandpa lost almost all of his mobility over that time.  He stopped even noticing the human equivalent of birdies! at some point, and it all turned into snooze.  With it came dementia, in which my grandma sometimes became his mother.  In which it sometimes seemed he was dreaming, the house growing floors around him, the Ohio River right outside the door.  I can't imagine what it's like to watch your life partner decline like that, to be the one to force him to take his pills, make sure he eats, weigh him back down to reality, all functions of a nurse and very few of a wife.  But her hand smoothing his hair down, one finger bent from arthritis -- the wife.

I'm still looking for a second job, and I still have to figure out a new medical plan (via the Obamacare marketplace).  And right now, I don't ever want to see a pelvic pain doctor again.  I am so, so, so, so over it.  I am so done.  I am so done that I'm surprised I haven't broken all of my possessions in the process of being HULK SMASH done.

I guess I feel like I'm fighting fate at this point and I need to give up.  Here I am after 8.75 years with pelvic pain, every theory I could muster, doctors I can't number, and treatments upon treatments that have nothing to do with one another.  I've taken jobs, quit jobs, gone off and on psych meds, been single, been in a relationship.  I've dwelt in all four houses asking questions, mental, physical, emotional, spiritual.  I've done more research than I can stomach.  I've been writing this blog for almost seven years.  I've made many friends through it, all invaluable.

I guess when I started this blog, I thought I was writing toward the end of the story.  Someday it would arrive.  I'd be all or mostly pain-free, and it'd be a big happy time for me and for people like me who needed the data I'd gathered.  But while I made some progress a few months ago with nerve blocks on the left side, all attempts to address the remaining pain have failed, and the remaining pain is no less a monster.  Now we're treating my pain as if it's coming from my intestines, which is a fine theory but nothing new.  It's cycle 3 or 4 of the gastrointestinal theory.

If I could, if I had the resources and the liberty, I'd go on a massive vision quest.  I'd hike the Appalachian Trail or drive to every state in the country or kayak from Pittsburgh to New Orleans.  I'd go long enough and with little enough to forget everything and find new eyes.  But right now, it doesn't make sense.

Instead, my gut is telling me to do the same quest while standing still.  And in order to do it, I have to let everything go.  I have to let hope hang by itself, unmoving.

I might be back.  Til then, here's to great storytelling.

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