My First Steps

7/29/2010

Praise the Lord for what he has done for me. Click the link to see the video

PT OT

These are some pictures of me doing therapy in the house. Sorry I don't have much to share right now.

There will be a pot luck party at our house next Saturday afternoon, August 7 for the folks who have been so supportive and helped out thesee last four months. Call us for details.

Cell Phone Pictures from the First Half of 2010

My NEW Chair

My status has been upgraded from amateur to professional

July 17, 2010

This is from a post I wrote shortly after the 4th of July:

“…while waiting for the fireworks to start, I saw someone in a wheelchair come down the sidewalk and cross the street. I was awestruck by how graceful and independent he was. He came down with a group of friends who went off to the right while he went off to the left into a parking lot. Moments later he emerged from there and took off after his friends, across the street and down the hill. He moved as easily as I can say these words. So far my experience with using my chair outside has been anything but easy or graceful. I struggle to keep the wheelchair pointed in the direction I want to go and forget about going up any incline-it is too hard.”

This week I got my new, custom built chair. It’s awesome! The chair is designed to fit me perfectly. It is like a part of my body and is engineered to fully utilize the power in my upper torso. Going up and down Jacqueline Drive is like riding a bike, I coast, accelerate and brake smoothly.

I’m intoxicated by my newfound of mobility. I left the house Saturday morning and traveled on my own the half mile to our local McDonald’s restaurant for breakfast. Then I lingered over coffee and read the paper. On the way home I stopped at a drug store and bought a candy bar (a no-no, but I was intoxicated.).

After that, I ran into Alex, walking home from his mornings activities. He was amazed to hear where I had been. For the first time in a long time I felt like an adult, making my own decisions and traveling independently.

Before I got my new chair, traveling on the local sidewalks was extremely difficult if not impossible. This meant in order to exercise, someone would have to drive me to the local big box store where the floors were flat enough for me to roll across. Now I know I can just go out my front door and travel up and down the street.

Getting outdoor exercise is extremely important. If I don’t tire myself out during the day, I’m extremely irritable in the afternoon and evening. There the combination of pent up energy and frustration make a bad mix for my mood.

Exercise and mood are important to my attitude. At my best, I am a jerk. The side effects of Prednisone and Cellcept exacerbate that condition. I often have to explain that I am having “crazy thoughts” and should be left alone. There is a condition known as “Steroid Psychosis” and sometimes I feel so out of my head, I worry that I am developing it.

As I’ve recovered, I’ve noticed that I have started to become alienated from the world around me. It’s like an undeclared state of apartheid between the Bi-peds, those whose arms hands feet and legs work perfectly, and the disabled, who inhabit the lowest tier of society because they lack four, symmetrical working limbs.

The other day someone put something in my lap and I found myself yelling, “I am not a piece of furniture!” I was prepared to go on about how they shouldn’t assume I was their personal storage cart that they could load up with useful items and move from place to place at will, but I could tell by the look on the person’s face that I had already gone too far.

I’m completely horrified whenever someone grabs my chair and begins to pull and push me without asking my permission. It wouldn't be acceptable if I were standing up, but because I have wheels...

Lucky for me, the volunteers at the hospital have a good sense of humor.

TMI?

Saturday, July 10, 2010

I just spent the last 2 hours getting bathed and dressed. Alex functioned as my valet, putting water in the tubs and bringing me things I couldn't reach. What makes this occasion especially noteworthy is that I did 100% of the washing myself. From the top of my head to the spaces in between my toes, including those hard to reach places, I washed, rinsed, and dried them myself.

Then I flossed and brushed my teeth and shaved. Next, using a grabby stick that a friend gave me, I got my clothes off the shelf and dressed, sitting on the edge of the bed. The hardest part was getting my underwear under my butt. To do that, I had to rock my hips back and forth while pulling on the waistband with my fist inside my shorts. My fingers aren't strong enough to grab the waistband securely.

To give credit where it is due, Alex was a big help for getting things together and cleaning up afterwards. He also periodically checked in to make sure I hadn't stroked out.

And I still need to put on my mantihose. Hopefully Adrienne will handle that. Although I am certain that the day is coming when she will hand me my mantihose and tell me to do as much as I can.

But for now, I'm going to take a nap. I'm exhausted.

Graphic URL