Wednesday, February 23, 2011

Smurfs and other happy musings

Just when you thought you couldn't hurt any more, your brain remembers that you have fingernails.

Monday, February 21, 2011

howareyouI'mfinethankyou

If you were to answer that perennial question "How are you?" truthfully, what would you say?

I imagine your answers would range somewhere from "I'm actually doing ok today -- first time in three months!" to "You could pound railway spikes through my knees and it wouldn't make much difference."

Other possibilities:

"I want to vomit and my ass is on fire."
"There are bugs biting me everywhere. Do you see them? Me neither."
"Somewhere along the line my brain decided I burned myself badly from the hips down. It feels just great, thanks."
"Another day, another 24 hours in agony. Joy."
"I smile because what the hell else am I going to do?"
"Well, five doctors and a cabinet of pharmaceuticals haven't fixed me. How do you think I'm doing?"
"Just waiting for that robotic body to come in. I paid in advance, so the brain transplant is free. Can't wait!"
"Every muscle in my body aches and I haven't slept in three days."
"The thought of feeling like this for the rest of my life makes me want to call for a do-over."

I'm fine, thank you. And how are you?

Friday, February 18, 2011

medication for the win

Off meds:
  • dizzy
  • headaches
  • muscle aches
  • nausea
  • nerve pain
  • stomach rumblings not to be described in any vivid detail
  • fatigue
  • cognitive issues (i.e. can't remember words, read the wrong words, flip numbers, can't do mental math)
  • big time memory issues

On meds:

  • dizzy
  • headaches
  • muscle aches
  • nausea
  • nerve pain
  • stomach rumblings not to be described in any vivid detail
  • fatigue
  • cognitive issues (i.e. can't remember words, read the wrong words, flip numbers, can't do mental math)
  • big time memory issues

Dear pharmaceutical companies,

You might want to work on that.

Sunday, February 6, 2011

irony is a constant

Surgery on Tuesday. My daily-use pain med is also a blood thinner, so I'm not allowed to use it for 5 days before the surgery and 7 days after. I guess this is where I'm thankful that we haven't found a med that really works on my pain levels yet. Otherwise, I'd be a heckuva lot more screwed right now.

Saturday, February 5, 2011

there's a special sort of hell...

...for the person who designed the application process for disability benefits. The initial application involves filling out an online series of forms. The estimated time provided to complete these forms is half an hour. The reality for someone who is actually disabled? Well, it took me over five hours. When I was able-bodied, sure, half an hour. Now? Ha!

Following the online forms, I received more than 20 pages in the mail, all to be filled out by hand. The kicker was that most of the information repeated -- several times -- what I had already submitted electronically. Oy vey. A friend with good handwriting kindly agreed to fill it out for me, over the course of several hours. I bribed thanked her with peppermint hot chocolate and filled out the parts that required me digging through ten years' worth of medical records over the course of two weeks, a few sentences at a time.

Follow that up with a 2.5-hour interview and series of tests with an appointed psychologist on the second floor of a building with no elevator. Popped my hip on that one and took four medicated days to get moving again. All this just to achieve the first pinnacle of the journey toward the possibility of contributing to my own medical care and my family's financial stability -- the first denial, received two days before Christmas.

You don't receive disability benefits. You EARN them.

Wednesday, February 2, 2011

You know....

You know you have fibromyalgia when....

...you feel sleepy at 8 p.m., after taking a 3-hour nap that afternoon.
...and you got 12 hours of sleep the night before.
...and you took a 3-hour nap yesterday afternoon.

You know you have fibromyalgia when....

...your medicine cabinet reads like that of a person with severe depression.
...and cancer.
...and epilepsy.

You know you have fibromyalgia when....

...your 4-year-old talks about conserving his energy.
...your 6-year-old pretends to walk with canes.
...and you take longer naps than your children.