Wednesday, January 2, 2008

Happy 2008

For personal reasons as well as professional, I am glad to see the end of 2007! It wasn't a very good year.

My resolutions are:

1) finish putting books into Jessie's springboard and upload them so that other people can use them.

2) work on making the XO a piece of assistive tech by
a) learning the operating system and trying to run standard AT/AAC programs on it with a windows emulation program

b) looking into touchscreens for it

c) learn python

d) contribute to the olpc wiki on assistive tech

3) take a programming class at the community college if I can

4) continue to try to talk my bosses into letting me, well, work while I'm here

5) find a job in AT

Other disability/health related goals:
1) join a gym
My school district had a great corporate wellness program and a trainer who has done some work on fibromyalgia. It's not the same as RA, but at least he's familar with auto-immune conditions.

2) get off predinsone
I'm tired of it. It's been two years now, the longest I've ever been on it. =I don't like this.

3) get off methotrexate
I'm still on it, despite my abulance trip in August. It's scary to decide I'm done with it -- for 12 years, it's saved me from disability. But I'm done. It's time to move on. I start Humira soon and I think I only need to poke myself with one needle, thank you very much.

4) examine mobility options
when I asked my nurse practicioner about helping me get a folding scooter, she said it would be fraud because "You're not there yet." She said it would be the same if I had a handicapped hangtag. I already have one.

When I am Christmas shopping and the only spaces are so far back that I go on instead of carrying out what my plans were, I think of that.
"We want you to exercise" she says. She would be a good conductor. When I'm almost in tears by the time I reach my destination and have no energy left for the activity, that's not a good thing. That's not "exercising." I'm tired of bravely struggling. I want to ride so that I have energy left for what I want to do.

I think I'm going for a folding scooter this year. It's not fraud. It's mobility.

Other goals:
Volunteer for a local agency that provides services to people with disabilities, like Horses for Healing or Champs.

Continue to help with AT exchanges and awareness for the agencies and people I'm affiliated with

Get everyone in J.C.'s life together for pizza once every two months or so. It doesn't have to be a formal microbaord, but there does have to be some communication.


Lorri said...

I am sure that you can find another health professional to help you qualify for the scooter. I live in Canada, and things are very different, so I can't help with specifics. I have met online "friends" who have scooters in the US , and they just needed a diagnosis from doctor, not a judgmental opinion from a Nurse Practitioner.

Keep trying, you deserve to live a comfortable, dignified life. Exercise should be done on purpose, not because you are forced to push your physical limits to do your shopping!

Lesley said...

Thanks. I struggle with whether or not I really "need" a scooter.

But there are so many times in my life where I would have had much more fun had been able to put my energy into the task at hand.