Post-2nd Alcock's nerve block

It's 3 weeks after the second try at the nerve block at the Alcock's canal site.  This is a lower spot on my butt than the first nerve block site, which was the ischial spine.

My overall pain level is still higher than it was before this nerve block.  Emotionally, I've been all over the place about it.  Sometimes it's no big deal; sometimes I want to give up.  It's the implications that are more upsetting than the pain itself.  Mostly, I am frustrated that this pain has been around so long, and I am scared that it will be around forever.  I'm also worried that this increased pain is my new reality.  I'm worried that the doctor nicked the nerve or something.  That worry is probably unfounded, but I don't really know much about it.

This nerve block numbed the area but didn't take away the pain.  That implies that the injection wasn't at the site of the nerve entrapment.  The block at the ischial spine numbed the area and took away about 90% of the pain.  I didn't see lasting improvement afterwards, but a couple weeks after the block I peed 5-6 times in a row with very little pain.  That was encouraging.  I'm hoping that Dr. Westesson will want to try that site again.

If my pain were like it was while the anesthetic was in effect after the block at the ischial spine, I would be ecstatic.  The pain increased as my bladder filled and went away after I emptied my bladder, and peeing was painless.  If that were my life, it would be a huge improvement over where things stand now.

As a side note, my period has been around for more than 2 weeks now, and my first period after the first nerve block was around for 10 days.  I googled and found a number of accounts of women having screwed-up periods after getting steroid injections, so I'm not too worried.  I will ask the doc about it at my next appointment.

I don't know if you can tell from my blog posts, but I am feeling pretty....bland these days.  I don't want to engage intellectually.  I am afraid that any good thoughts or feelings will be taken away from me, so I'm avoiding thinking or feeling at all.

I don't even know how to write this goddamn blog post.

I feel like I've told this miserable story too many times.

I am less fearful than I was a few months ago.  I think about what I told my psychiatrist at our last visit -- March 27 -- and many of those things do not apply anymore.  It drives home for me an observation I've made over the years that the brain heals itself if it's in the right environment.  I stopped taking a crazy-making med, and I curled up in a ball and watched every episode of Monk.  It's like putting on a helmet after getting knocked in the head for a while.

It has made me realize that I need to look at my periods of recovering from mental problems as analogous to physical rehabilitation.  It is the same thing; we just don't recognize it.  I am not seeing friends, not eating well, afraid of the grocery store, afraid to laugh.  So, I need to work step by step to get back to functioning fully.  That means exposure and practice.  Just like learning to use a leg again -- you have to expose the muscles to the act of taking a step, and then you have to take that step again and again.  After you get the beginner step down, you expose the muscles to taking a bigger step and practice that one.

One of the ways I am compounding all the stress in my life is by comparing my life to others'.  Facebook is terrible for this, looking at people getting engaged, married, having children.  I have been struggling with this issue a lot over the past few months.  I've stopped believing that I have any kind of future.  I never thought that before.  I always thought that no matter my troubles, the coming years would bring marriage and kids, work I believe in, floorboards that don't trap kitty litter.

I am getting jealous of my peers.  That's a new one for me too, and it's not pretty.  I wonder why their lives seem relatively straightforward while I'm bivouacking or something.  I used to think my pain and mental illness were taking me places I never would've gone and making me into a stronger, wiser person than I would've been otherwise.  Now?  I don't give a shit!  I just want to be normal.

Bivouacking might not be a bad idea.  I need to disconnect from others' lives (and the internet) and reconnect with mine.

My next nerve block is on May 22, a week from tomorrow.  I have an appointment with Dr. Howard in June.  He will probably do the Q-tip test again to see if my sensitivity has gone down.  If it hasn't, I'll probably be off to see a urologist about whether I have interstitial cystitis.

Alcock's nerve block - take 2

When I last wrote, I told you that Dr. Westesson was going to try the genitofemoral nerve block this time around if the Alcock's canal nerve block didn't work.  Well, Dr. Westesson ended up doing the Alcock's canal nerve block again.  Last time I wasn't sure if he had numbed me -- but indeed he had.  And the fact that I couldn't tell he had numbed me meant the blocks had missed their marks.

So the doctor did a second round of blocks on the Alcock's canal.  This time I could tell that I was numb throughout the area, but I still had pain.  That means that the Alcock's canal site along the pudendal nerve is probably not involved in my pain -- if it were, numbing the site would've taken away my pain.  The first blocks, in the ischial spine, took away about 90% of my pain.  Dr. Westesson said it's possible the entrapment is somewhere else along the nerve.  If you ask me, geometrically, this is making less and less sense.

When he was doing the blocks -- one on each side -- I could feel the pain traveling up each side of my crotch as if highlighting the nerve's path.  Ever since, the pain has seemed worse.

At the end of the day on Friday, even after standing for most of the day, my pain was in what I think of as the "exquisite" zone.  When I saw a dermatologist for my pain, the resident working with her said that pain conditions in the genitals can be "exquisitely painful" because of all the nerve endings down there.  It seemed strange word choice.  Apparently it has a medical meaning ("extremely intense, keen, or sharp").  But at the time all I could think of was chandeliers.

The "exquisite zone" for my pain is a blend of both medical meaning and chandelier meaning.  My pain is "exquisite" when it's as if I can see every little nerve ending down there, and each one of them is being traced by a tiny razor.  In my synesthetic view, my exquisite pain literally looks like a chandelier.

So after work on Friday, I sat my exquisite self down in my car and the pain immediately started to jack up.  Imagine walking closer and closer to a hive of bees.  That's what the pain sounded like as it grew -- and I knew I was headed for a heap of pain if I didn't lie down when I got home.

I lay down all weekend, and my pain stayed relatively low.  I really, really appreciated that.  Today I stood all day at work, feeling extra-thankful for my standing desk.

When I go back in a few weeks, if this nerve block doesn't work, Dr. Westesson will try the genitofemoral block.  I think it's possible that the genitofemoral nerve is involved in my pain.  I have had a lot of weird hip issues over the years, including super-sensitive skin over the area and pain.  However, I don't think the genitofemoral nerve is as involved in the vulva as is the pudendal nerve, and that is the main area of my pain.  Plus, as Dr. Westesson pointed out, if the entrapment were in the genitofemoral nerve, I wouldn't have increased pain with sitting.

As I am sitting right now and hearing those bees approach, I am thinking that yes, the pudendal nerve must be the one involved.

So I'm hoping this nerve block works.  The doctors have both said that some people report that their pain gets worse after a nerve block before it gets better.  Maybe, hope against hope, that is why I am feeling worse.

As I mentioned before, both doctors have hypothesized that interstitial cystitis might be involved in my pain; this past visit, Dr. Westesson said there is a doctor at U of Rochester who has studied IC extensively.  I had two urologist here in Cleveland tell me I don't have IC -- now I have two pelvic-pain doctors in Rochester telling me I very well might.  I think I'll think about that one later.

Nerve blocks: From Alcock's canal to genitofemoral nerve

The first nerve block didn't do anything to help my pain.  That was in the ischial spine.  The second time, April 3, the doc tried doing the block in the Alcock's canal.  Same nerve, lower down the butt.  That doesn't seem to have worked either.

I go back on Monday, April 22, and the doc will try doing the block in the genitofemoral nerve, through the abdomen.  I feel like if I have hope that it will work, it definitely WON'T work because the universe likes to see me crumble.  But I feel like I have to have hope because, rationally, that's what you have to do in these situations.

I want to explain all the reasons why I think the next nerve block in the new location may or may not work but then the universe will know what I'm thinking and it will do the opposite.

About a month ago, I went off a med that was making me crazy, like crazy, like eye-bulging crazy according to my mom, which is a funny image, frog-like, and my anxiety broke soon after I stopped the med, and if I never go back there for the rest of my life that will be good enough for me, even if I spend every day in bedridden depression.  I just keep reminding myself: this mental state isn't THAT ONE.

Now I am in some kind of shadow zone where I am afraid of where I was and I feel helpless in the face of the future.  I feel like I've spent everything I had, tried every corridor in this rat maze and now the only logical thing to do is bed down here but there is no bedding and none of the other things a rat needs to live.

I'm going back through my months and years to remember the last time I felt truly good.  I keep going back to 2008... I was in grad school... I was eating extra and I was piling my brain with constructive things.  My self-discipline was high.  In my journal from that time, my handwriting is uniform.  These days, when I do journal, it's illegible even to me.

At the time I had a grad assistanceship under a professor whom I called Sandpainter because he was so measured and patient in everything he did, painting one grain of sand at a time, not for the detail but for the practice of it.  I think that made a difference.

I wrote some other stuff here but it was too pathetic.  So I'll just end this here.  My mom told me to focus on the most basic of basic things right now.  So I wiped out all the dust from behind my toilet.  And then I dusted the plunger.  And after a few days I had detailed the whole bathroom.  Then I slept all my extra hours for several days, but that's how it goes.

Meeting Eyes

Tall, dark eyebrows, body made to work.  Then he was gone.

My doctor had swooped by the open door first.  I knew the patient would follow, so I waited, actively waited to see who it was.  Tall, dark eyebrows.  A possible "You too?"

I knew his name was Adrian; I had heard the doctor calling it.  Now out in the waiting room, I heard Adrian say, "Ceramic, granite, anything you want."  A thank-you, a thank-you.

The assistant warned me the numbing shots would feel like bee stings.  She and the doctor walked back and forth in their lead aprons.  The machine whirled about me, a cross-section of my pelvis up on the screen, my chin resting in my hands.

They rolled me out; they stung me; they shoved a needle through my butt cheek toward my ischial spine.  The anesthetic would kick in immediately and last several hours.  The steroid would take a couple weeks to kick in (or not) and prove (or disprove) the nerve-entrapment hypothesis.

"How do you feel?"

I walked a few steps between the curtain and the bed.  "Strange balance," I said.

"Do you feel any pain?"

I sat down.  "In the urethra?  But it might be fading."

"That makes sense," the doctor said.  "The urethra is the most innervated area."

Now it is a week and a half later.  A couple days ago, I thought I was feeling less pain.  Then my period started and it was all back to normal.  The reduced pain, I think now, was a coincidence.  It happens sometimes.  So I'm still waiting for signs that the steroids will work.

That guy I saw walking by the door, Adrian -- he was the first person with pelvic pain I've ever met.  Not a word between us, and only a split-second's look, but I do think it was a look of "You too?"  Me too, and maybe the nerve blocks will also work for me and I'll be so thrilled that I'll offer the doctor a free counter top or bathroom floor or, I guess in my case, a really, really lovely blog post.

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Native Tongue

"We love your grandpa!" the nurses called after us.  Of course they loved him.  He is a flirt.  He likes to shine his crooked smile for the ladies.

Grandpa navigated the way to the dining room, circled our choices on the little menus, ate silently next to his buddy who is also a John.  Fish, jello, cottage cheese, chocolate pie, all of it into his 6'3" frame.  In a wheelchair, just like his mother.

She had spent her final years in a nursing home after suffering a massive stroke that robbed her of English and left her with Slovak.  He, now, was in a physical rehab center, having fallen into a period of weakness.  Whether he would return home remained to be seen.

As we wheeled back from dinner, the sun was starting to set.  The hospital grew rooms.  There was a beer for me in the fridge.  His mother was in the kitchen.  I was his daughter and his granddaughter and his daughter.

"You sure you'll be all right?" he asked about my leaving.  "I guess it's about a half a mile from here."

"I'll be fine," I said.

"Let me call Grandma.  I'll let her know you're coming."

"That's okay, Poppa.  I already gave her a call."

It is a fifteen-minute drive to their house.  I arrived just after sunset.  My grandma sat in her chair watching TV; I took a seat on the couch to her right.

"Poppa called to say you were coming," she told me.

We chatted.  A few minutes later, the phone rang.  My grandma picked it up.  I heard my grandpa's voice on the other end.  After an English "hello," they spoke in Slovak.

Whenever they speak Slovak, it means they are telling each other to give us money.  I braced myself for the tussle that would follow.

Grandma hung up.  "I told him you made it okay."

She stared quietly at the TV.  Then she said, "I know why he was speaking Slovak.  He thought he was calling his mother."  We laughed.

"Dialed the same number both times.  Didn't notice that."  This she said a little self-consciously.  Then, "That's sweet, calling his mother to say 'I love you' before he goes to bed."

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Roch Crotch Doc Nerve Block

Here's a little summary of the nerve block I had in Rochester on Wednesday:

The procedure was performed by Dr. Per-Lennart Westesson.  He is a really nice, patient guy.  He interviewed me before the block, a few questions about my pain.  I told him my pain is symmetrical, so he decided to try nerve blocks on both sides even though Dr. Howard thought the entrapment might only be on the right.

The procedure itself was very quick.  I lay face-down in the CT machine.  They got an image of my pelvis, then they numbed my cheeks up and injected an anesthetic and a steroid at the site.

The site is the ischial spine.  If the anesthetic took my pain away, it would indicate that the pudendal nerve is involved.  If they steroids work, they will take 1-2 weeks to kick in.

The anesthetic took away about 90% of my pain.  The remaining pain seemed to come on as my bladder filled.  Dr. Howard told me that pain in the urethra and bladder usually point to interstitial cystitis.  After observing my bladder pain while numb everywhere else, I think it's a good guess that I have IC.

But anyway, yay, 90% of my pain gone!  That was fun.  In fact, I was able to poke at my very low abdomen -- where my bladder is -- over and over.  If I pressed hard enough, I could feel some pain in my clit/urethra.  But I had to press.  At my appointment with Dr. Howard, just the light scrape of the wooden end of a Q-tip over my lower abdomen made my clit/urethra hurt.  Ridiculous!

Having a numb everything down there is strange.  It was like novocaine: you don't feel nothing; you feel an area that you can't feel.  My balance was different.  Then as the pain crept back, I realized how much the anesthetic had reduced my pain.

I go back for 2 more nerve blocks and then see Dr. Howard.  If these blocks don't help, it could be that a nerve block in my genitofemoral nerve would help.  That would be in the abdomen.  Given my super-sensitive abdomen, maybe that nerve is involved as well.

Super-sensitive abdomen, by the way, means flashes of extra pain when I cough, sneeze, laugh, jump, twist, fart, etc.  This has been a fun 6 years.  Ha ha :)

The Pudendal Hope site lists positive coping mechanisms for people with chronic illness.  Here is one:

Spirituality: You can be spiritual without being religous. Spitituality means worldliness. If a person is able to have some spirituality and/or faith/religion, studies have shown that this can improve a persons well being, attitude and good overall outcome.

This is the hardest coping mechanism for me to hold onto right now.  My spirituality has crumbled.  I don't trust anything.  Why should I?  I've been in pain for six years and my anxiety is astronomical.  Literally.  I'm worried about the stars.

I know a reduction in my pain will not make me stop worrying about the stars.  But I could use some damn relief just for the brain space.

The Funeral Rite

My uncle's mother died last week.  She was so light the wind might as well have picked her up and knocked her into a tree.  But she went by usual means, being old, the body wearing out.

She was a full-voiced woman despite her thin body.  Pictures at her wake showed her to be of beauty that is regal in its reserve.  In one picture, she sat on a sofa in a billowy gown made pink after the photo was developed.

My uncle's brother gave a bare-souled eulogy.  The pallbearers carried her out to the hearse, and we sat in our idling cars.  The snow was more like mist.

We took surface roads for a while, then we got on the expressway headed east.  I swore.  I was the last car, the flashers on my hatchback frantically warning people to get out of our lane.  Cars and SUVs ran up and slid around me in the slush.  I swore more.  I swore at the woman ahead of me, her spine too collapsed for me to see her past her seat.  I told her she was driving too slowly, that she had to keep up because I didn't know where we were going.  I put some music on to camouflage my swearing inside of singing.

Finally, after miles, after arriving in an outermost suburb, we turned off into the cemetery, its gravel path soaked with winter.  By the time I got out of the car, the casket rested on its support.  We walked up the grass, across headstones we couldn't see under the snow.  The pastor said a few words, very few, the temperature below freezing.  He asked the family to lay their flowers onto the casket.  Beautiful roses dropped onto the lid, some pink, some a perfect white.  I wanted to stare at the white flowers, but we, the more distant relatives, we went back to our cars to give the family a moment with their matriarch before she went into the ground.

Why aren't we carrying her?  Why aren't we carrying her festooned casket down the street, bells ringing, people chanting, ourselves dressed in our brightest colors, why aren't we putting her on a funeral pyre, why aren't we dancing to reach the gods and ask them to receive her?  Why haven't we put food in her casket?  Why aren't our bodies painted -- why do we have no song?

I wondered in the car on the way to the cemetery -- how do I require dancing at my funeral?

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