Tuesday, June 24, 2014

Back on my feet

So here's what happened.  I took the week of June 2 off.  I worked two half-days from home the week of June 9.  I worked half-days from home all last week, and this week I'm back to working full-time, though I'm still at home.

And I am overjoyed to be back at work.

After my first week off, I wanted to go back to work if only for mental hygiene -- it felt like staying out of work any longer would only create inertia.  So I drove to work that Monday, but I had to go back home immediately.  Driving there, I felt like nowhere was safe, like I was a neurotic cat who had been kicked out of the house and was now in desperate need of a shadow to hide in.  As I left, I panicked thinking of how far away my house was and how there was no "safe" way to go -- no continuous shadow to be in until I got there.

So I worked from home that day and the next, and I totally crapped out on work at the end of my half-day Tuesday.  I was in extreme-anxiety mode.  The rest of that week is a blur.  I was just trying to hold the lid down on my brain.

But spending those days just trying to hold steady paid off.  I had fallen off the Lyrica wagon, so I started taking 75mg at night as it boosts my mood.  I made sure to take a Valium each day whether I thought I needed it or not.  Sometime that weekend I found my way to my parents' house despite the cat-with-no-shadow-to-be-in feeling.  And by Monday I wanted to try working again.

I am still not awesome at leaving the house.  I get stuck just inside the doorway.  If I'm going by foot, I feel okay; if I have to drive somewhere, I get panicky.  Big-box stores are wobbly parallel universes, but I was in Target long enough last week to get my prescriptions and buy some food.  Sunday I went to the beach, and I remembered that it is impossible to be anywhere else -- even inside your own anxiety -- when you're at the beach.

All of this anxiety has been going on for a long time, but it reached critical mass and kaboomed in May when the pain just wouldn't give up.  And that's why yesterday, when I started working my first full-time day, I was so excited to be working again.  I had thought maybe I was done.  I had thought my mind had broken.  But maybe not!  And I woke up today with the same feeling of excitement.

Excitement and pride.  I am so proud of myself.  It's like conquering a boss in a video game.  I beat that m.f. down.  But only I know the shape of my monster -- or, rather, its shape doesn't come with words.  I can't describe what I conquered, so the pride is strangely private.  But no less glorious.

My pain spikes have backed off over the past few weeks, probably as a result of recovering from the genitofemoral nerve blocks I had in April.  I had an ilioinguinal nerve block last week with my new doctor -- we'll see if it kicks off a bad round of pain.  I'm hoping that it was the site of the nerve block that was the problem before and not the steroid itself.

And as you can tell from that paragraph, I have no hope for pain relief from this ilioinguinal block.  Haha!  It wasn't at the site where I had the nerve block in February that relieved my pain... these doctors seem to be stabbing my stomach randomly as no two blocks are the same.  The block I had in February numbed my leg, which hasn't happened with any blocks since.  Maybe that is the key.

My new doctor wants me to see another doctor... the pelvic-pain specialist in the pain management department at Cleveland Clinic.  Dr. Joseph Abdelmalak.  I have an appointment with him on July 8.

Pursuing treatment for my pain is stressful, which drives my anxiety, and I'm ready to take a break from seeing doctors just so I can regain some composure.  Yes, pain is bad, but if you're not mentally stable, you can't do anything.  I don't want to lose my job, and I don't want to be stuck in the house.  I don't want to be stuck watching reruns of reruns all day on my iPad because doing anything else is overwhelming.  So if I have to take a break from seeing doctors to regain my footing, so be it.

Wednesday, June 4, 2014

On to pain management

Cleveland Clinic neurology doesn't know what to do with a pelvic pain case, so I made an appointment with pain management.  Ohhhh I'm so glad I called them.  My appointment was today, and they were so compassionate.  And they don't care what the cause of my pain is.  I didn't think I'd like that -- I thought all along I needed an explanation, and all the doctors I saw before were either giving me hypotheses or giving me explanations why my pain was something they didn't treat.  But these guys don't give a crap what's causing my pain.  They only care about making it better.  They'll try something and if it doesn't work they'll try something else.  Totally empirical.

So they agreed today to try an ilioinguinal block on the right side, the one Dr. Westesson didn't repeat after my February appointment in Rochester.  They'll do it by ultrasound.  Dr. Westesson did it by CT scan.  They say they can see the tissue, etc., with ultrasound, which CT scan doesn't include.  (I think CT scan is just a nerded-out, super-spinny X-ray, but maybe I'm wrong.)

I really appreciate that they thought it made sense to start with the block that I thought helped in February.  For whatever reason, my instinct tells me it was the ilioinguinal block that provided so much relief.  This block will be anesthetic only (I think I am getting this right), which -- if it's at a good site -- might provide prolonged relief, but if not, they can burn the nerve to shut it up for a longer period of time.  And if the ilioinguinal site doesn't work at all, they can move on to other treatments.

There is a doc who works in pain management who is the Center of all Pelvic Pain Treatment at the Cleveland Clinic.  This is a vortex that did not exist when I was moving thru the Clinic several years ago looking for the right doctor.  The doc I saw today said I can move on to see the Vortex for another opinion before doing the block.  I decided to just do the block now with the present doctor and move on to see the other doc if the block doesn't work.  But now that I'm calling him The Vortex I feel the need to schedule an appointment with him.

And to make this blog post even longer, I will report that on Monday I started a leave from work.  I am very low on vacation days due to my visits to Rochester, so as of today I'm on FMLA.  (I think.  I can't count.)  My pain has been so nasty recently that I kept having to work from home or come home midday -- even with the standing desk -- and I kept having to work past the workday to finish up because I couldn't concentrate, and I was sleeping all my spare hours away and not eating, and last Friday I woke up and it was all clear.  I said, No, no-no, this is not happening anymore.  On top of all that, my panic/anxiety/agoraphobia has been monstrous lately, which is half the pie that is the whole take-a-break picture.  I am back to taking valium 1x a day, and life is just soooooooooooooooooooooo much easier when I take it.  I am not in space, I actually exist, it is not strange that planets are round, there is not blackness inside everything I see, I do not freak out when the sun goes to the other side of the Earth and I have to wait for it to come back, I am not concerned that atoms have a shelf life, and now that I type this all out, WHY IN THE WORLD DID I MAJOR IN PHYSICS IN COLLEGE?

I don't think I'll be on leave for long.  I'm going to challenge my anxiety over the next few days, going INSIDE buildings!!! and things of that sort.  The pain is more of an unknown.  I think April's steroid injections set it off.  They are messing with my period, so maybe it's tied to that.  One day it is workable, the next day it is stupid.  I've mostly been lying down the past few days, so I'll start challenging the pain too to see where it stands.  Worst case, if the pain is still nasty, I'll ask for flexibility to work from home at least part of the time, to make it an official thing, and see if that flies.