May 17, 2011

It Started When I Woke Up

I should have gone back to bed and pulled the covers over my head.

Poor Iris/Virus arrived this morning in a tizzy. You know things are not going to go well in your state when the new governor begins his budget cuts with the disabled. The Teenager is no exception. She receives very little assistance because she lives at home since a few years back disabled children and adults who lived at home had their assistance hacked to death. It was almost as if parents were being punished for
not institutionalizing their children while institutions received much more generous funding per client. Like the group home who's delayed men live in unsafe conditions and who are encouraged by the staff to have sex with one another during their "quiet time" even if the sex was not consensual which, by the way, I believe is called rape.

I know. I know. I've harped on this "quiet time" crap before and will do so again and again. I cannot get over the fact that there are places like this collecting $100,000.00 per client per year when the disabled at home are allotted $14,000 per year. Adult diapers for the disabled at home can run $5,000 per year alone.

It's too confusing to go into and I don't have the mental energy to rehash it but basically Iris must complete paper work by the 31st of this month or I lose the few hours of personal care assistance I have for The Teenager. Forever.

Ever dealt with a bureaucracy? Need I say more? At every turn Iris's submissions have been rejected. She is told to do something one way, submits it, only to have it rejected. She is then instructed to do the same thing completely different.

This has been going on for over one year. I've been told by The Teenagers "support coordinator" that hardly anyone has been able to pull off the paper work and kids are losing their aids by the hundreds.

Then I go to the orthopedic surgeon after I finish up my first client of the day. My appointment is at 9:40 He comes in to see me at 11:30. He shakes my hand. He seems a little somber to me.

"You've been having this problem for a while now haven't you?"

Hmm. I did not like the way that sounded.

"So... I assume I have a legitimate reason for the pain, neck spasms and numbness in my left arm?"

"I'll say."

Uh Oh.

He ponders my MRI and the dozens of x-rays taken this morning on the view box.

"C3. "Beautiful."

"C4. "Beautiful"

:C5-C6. "Not good"

Severe arthritis. Herniated disc. Bad Spurs. Inflamed, pinched spinal cord.

"What have you done to alter your lifestyle and activities with this condition?'

Crickets chirp in the exam room as the group of 3 wait for my answer.

I look around at this sports MD's office. Signed jerseys line his wall. Baseball. Football. Soccer. There are champion surfers. Boxers. Autographed photos of Olympians, para-Olympians, marathon runners, kick boxers. A huge poster of bad boy Jose Conseco thanking him for his surgery in bold magic marker stating how "good he feels" after the operation.

I decided then and there that when I have surgery I am donating an 11 x 14 photo of me with my family smeared with chocolate pudding and peanut butter. Throw in a couple of lizards, some dog hair and a few turds.

I'll autograph our photo in big, bold, black marker like the rest of the sports heroes with: "This uncoordinated, slightly over weight, non-athletic mother of five thanks you for my surgery. I feel soooo good after my operation! Keep those Vicodin prescriptions coming! Love, Yo Yo Mama"

He can hang the photo next to my autographed "jersey."

After drifting off I remember the original question.
"What have you done to alter your lifestyle and activities with this condition?'

Well...nothing seeing as illness or physical impairment is a luxury in my household.

I leave his office. I can't quite shake the mental image of him cutting into the front of my neck to do bone grafts on my cervical vertebrae.


I drive to The Baby's school where i make it just in time for her annual IEP. Yes. All this and an IEP, too. Seriously people could it get any better than this day?

There are 7 tiny little pre-school chairs in a semi circle. I lower myself into one wondering what the weight limit is while clutching my neck. All of the baby's therapists parade in give their speeches and make excuses to leave early. The IEP ends. The services The Baby receives are exemplary. Who would have ever thought that in 18 years of hideous IEP's that an IEP meeting could be such a pleasure?
I feel like I am in a dream world and I haven't even filled my Vicodin prescription yet.

Or was my perception impaired by my compressed spinal cord? Just a thought.

I do feel sickened and saddened for the public school system in our state, however. It seemed after the governor went after the disabled he began on our public school teachers and employees.This month in our state teachers and school therapists (PT, OT, Speech) are losing their jobs and benefits by the thousands.

A friend who is was a school therapist got her walking papers last week but was consoled by the fact that she qualified for COBRA so she could continue with her families health insurance policy.

For $1,800.00 a month.

What? You can't afford that after you've been laid off? But why? Good luck to you and your children and don't let the door hit you on the way out.

I've said it before and I'll say it again. Middle class America is quickly becoming the new indigent.

After the mornings frivolity I run to get my prescriptions filled. I have been warned I am not to allow myself to go into spasm and pain like I did in April. Take the Vicodin you never got filled. Take the Mobic! Take the Soma!

What about my kids? I can't even imagine what they would do to me if I was unconscious.

At this point I cancel my evening clients. I'm tired. Besides they have ringworm and I really don't need pain and a fungal infection.

Even I have my limits.


Beverly said...

So much for "Let's get to work." I am a native of this state, and I would so like to leave it all.

I'm so glad I'm no longer in the school system.

Lilith said...

Hope the surgery helps. My father had the same thing and the surgery did help. And yes, governments do like pick on the disabled, they're not as vocal as some other groups. They should be ashamed of themselves.

Anonymous said...

You remain my hero! I am with you completely about the disability funding. Makes me sick. Good luck with the paperwork. I always look forward to reading your posts. I wish you wrote novels in your spare time (ha). I'd read them all! I'm so sorry to hear about your neck. I took vicodan for over a year for back injury and made myself as much of a wreck worrying about taking it as I was a wreck from the pain. It finally got better and I quit taking it. I never ended up wanting to sell my children to obtain more! In retrospect I regret how much I worried about not wanting to take it. Take the meds and be glad you have them! A dr isn't going to give them to you unless you need them and you are no good to anybody when you are in too much pain to function without misery!!

Take care- Jennifer in Fl