Saturday, March 16, 2013

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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Wednesday, March 13, 2013

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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Friday, March 8, 2013

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.

Tuesday, March 5, 2013

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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Saturday, March 2, 2013

The Nerve Block

My nerve block is scheduled for this Wednesday, March 6.  I didn't expect it to be so soon!  It's only a little over a week since I saw Dr. Howard.

This is the first time in my six years with vulvodynia -- pudendal neuralgia, I should say -- that I've felt medically illiterate.  Here's what I think will happen.

Dr. Westesson will do the procedure.  He will use a CT scan to identify the Alcock's canal -- and I think something else too? -- where he will first inject a numbing agent as a test to see if my pain is coming from there.  If he is certain that the injection site is the source of my pain, he will then inject a steroid.

The steroid is the actual "nerve block."  It's supposed to reduce the swelling in the surrounding area.  That swelling is, theoretically, what's causing the nerve entrapment.

The numbing agent is like Novocaine.  I will have a numb pelvis for a while after the procedure.  The steroid will take several days to work, and my pain may get worse during that time.  But after a week or two, if all of this postulating is correct, the steroid will kick in and my pain will go down.

My pain might go down!

For the past few days I've been really nervous about the nerve block.  I haven't been thinking about it specifically -- I'm just more anxious in general.  But today I am a teeny bit excited to see what happens.  It's an experiment after all.  I love experiments.

If the experiment fails, the docs will do a nerve block on my genitofemoral nerve, which is in the abdomen.  At least I think that's what they will do.  It is Dr. Howard's second theory about where my pain is coming from.  I think it might be involved given the pain in my bladder and clit.  But the pudendal nerve can be involved in that area too.

And then if that doesn't work...  I'll just be back here trying to figure things out.  But now I have Dr. Howard to work with, and he is an expert-expert expert on pelvic pain.  I haven't ever had a doctor to work with.  They've all been specialists insulated from each other, unable even to refer me to another department.  So, I am finally in the proper hands, and I am trying to trust them.