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.


Monday, January 5, 2015

Hiatus

It's been four or so weeks since the cryoablation of my right genitofemoral nerve and my pain remains the same.

So frustrated.

I've decided I'm not telling anyone about what's going on with my treatment anymore because when I do, I get constant questions about my progress, and it feels awful to tell people that nothing has happened.  Every question seems to topple the house of cards I'm trying to build.  And people don't realize or remember that every time I get a treatment, it takes a while for it to kick in.  Sometimes several weeks.  And when they ask right after the treatment if it worked, boom, down comes the house.

I appreciate the support, but it's taxing to keep other people updated all the time.  Every question makes me think about it, and I need to think less about it.  When I think about it, I feel trapped.  I feel damned.  I feel like I'm being punished.  And I need to avoid triggering those thoughts.

I've had glimpses of progress.  My left-side pain is still lower than the right side, but it's not gone.  The fact that my pain is no longer symmetrical is very good news, but I'm still in horrible pain all the time.  And while I've had moments or even segments of days when my pain has dropped low enough for me to think it's on the way out, they haven't lasted.

I just have to shove it to the back of my mind right now.  The late-winter months have been very hard for me the past few years.  In 2011, my pain was so bad that I had to leave my AmeriCorps position.  In 2012, I was on the way out with my ex.  In 2013, I was going to Rochester for the first batch of nerve blocks, none of which worked, and I was on a really bad brain med that caused my anxiety to skyrocket.  In 2014, I was on my second batch of nerve blocks at Rochester, resulting again in no progress, and my anxiety -- as a result of a failed nerve block that increased my pain -- grew and grew until it sidelined me entirely in late spring.  I can't go through that again.  I need to stay safe psychologically over the next couple months, which means removing my pain from discussion.

At the heart of feeling trapped by my pain is that I'm 34, I'm single, I want to date, I want to fall in love, I want kids.  And I don't know if it's in the cards.  It is really, really hard to surrender all that hope over to the universe.  But it feels like that's all my life has become.  Surrendered hope.

I get mad a lot.  I'm not sure how to be mad, so I snuff it.  I want to kickbox or something, but my pain says no.  I play my flute, but no piece is violent enough.  I listen to angry music and let my synesthesia slice my body apart.

I went to see Slayer at a friend's random invitation


and I thought it would be terrifying, but it actually felt really good.  I don't know what everyone else sees in it, but to me, that is music of surrender.

I don't know if I'll be updating my blog any time soon.  I've been working on centering my life after years of discrete whirlwinds.  My self-esteem is better than it's been in years.  I actually love myself again.  I need to live in that and not in the future.

Monday, December 15, 2014

Dating, or not at all ever for the rest of my life.

Evil Apples provided the perfect answer.

Sometimes it takes Doge to express my true feelings.

Thursday, December 11, 2014

Genitofemoral cryoablation

Stolen from here

I haven't posted because I have not been able to frame what I have to say, tuck it up neat.

And I don't remember what my last update was about and don't want to review it.

So whatever.

Here is what I've done with Dr. Abdelmalak.  This is all spaced out at intervals I also don't want to review.
- 2 left-side genitofemoral blocks.  Result: no immediate relief from lidocaine, lasting pain reduction on left side.
- 2 right-side genitofemoral blocks. Result: immediate relief from lidocaine, no lasting pain reduction.
- 2 bilateral pudendal blocks. Result: no immediate relief from lidocaine, no lasting pain reduction except when he pushes directly on the pudendal nerves during an internal examination and they don't freak out like before.  So, no subjective improvement.
- Two days ago, a right-side genitofemoral cryoablation.

#1: GET THE ANESTHESIA FOR CRYO!  I have done all of these without anesthesia because they never offered me anesthesia at Rochester so I was used to dealing with the pain of the injection.  But HOLY CRAP CRYOABLATION IS PAINFUL.  It's the worst procedure I've had since my stupid lidocaine-only cystoscopy which later doctors have suggested was totally idiotic and absolutely not procedure and so I want to write a letter but I don't remember the guy's name and anyway I will just hurl stones at him psychically because I'm too depressed to look up the Urology Department's address.

They stick this giant needle in for cryo, and you can't see it because you're lying down but whatever he shows you the giant needle, it's like 10 times wider than a normal needle, and he gives you a little ice cube to make friends with, and you lie back, and they "bee stings" numb the site, and then they SHOVE SHOVE SHOVE the needle around until IT HURTS SO BAD YOU CRY and they hold it there for five minutes.

Funny part is, the pain didn't radiate to my vulva like it usually does when he pokes at my genfem nerves, so I'm not even convinced he found the right spot.  But he said it wasn't supposed to radiate.  But I'm still pretty sure it's not going to work.  Because why should the right spot not radiate?

And yeah, next time, because there will be a next time, I will get the anesthesia.  It doesn't put you under entirely, and you HAVE to feel the pain for this one because they can't find the right spot by looking for it with any device outside of your brain, but maybe with the anesthesia I won't cry and tell them how much I hate my life and they won't ask me if I still hate them when we're done.

#2: I am more depressed than I've been in a long time.  I had a brilliant respite from depression and most of my anxiety for months, and it was beautiful, but sometime in early November -- actually, immediately after the time change -- I felt shitty, and the past two weeks I've missed 3.5 days of work due to depression's trying to drown me upon waking, and I have no words on this point beyond these because if I tell you more I will feel like sleeping and it's still lunchtime.

#3: I really thought the depression would lift after my appointment because my appointments seem always to cause my mood to ripple, but I feel like I'm still in a jacket of stones.  So I guess I can't blame this one on procedure worries.

My doctor stressed to me that I am "normal," that I will be "fine," and I wanted to say, you know what, fuck you, you are not living this life of unknowns and constant pain and loneliness.  And I like him a lot.  And I think he was just trying to say that there is nothing "wrong" with me.  Yes -- after the procedure, after the crying and frustration, he went so far as to say I am "perfect," and I almost cried again because that's what my grandma always tells me.  If I could run away, maybe I would feel perfect.  If I could remember what it is to be in this world, and all the color that is still available.  But I am stuck under days of typing and waiting for skies to come and go, and there is no memory here.

Thursday, October 2, 2014

Happy 8th, Vulvodynia!

Whatever your root cause, Vulvodynia, you will always be Vulvodynia to me.  Happy Birthday!  And Happy 6th to this blog!  I have much to share but have been very busy.  Gooood busy.  I will blog about my progress soon.  Yep, I said the P-word: Progress!