Well, I called Invacare yesterday. I asked them if I should be going out in my powerchair, since we just got a few inches of snow. Of course, they said that the chair was not waterproof, so they didn't recommend that I did.
I guess I don't understand something. Why isn't someone out there working on a powered wheelchair that can be used in all weather? I got the chair for better independence. I am going to school. In Illinois. In the spring. That is a recipe for daily adverse weather.
I think it was just a hit to me that I feel I must still be dependent of others in order to have independence. Does this make sense to anyone else? I had a friend that came over and shoveled, shoveled, shoveled... Thank you, Jenna!
Powerchairs... they cost a lot, and have plenty of restrictions with them. If you can, also have a manual chair for the days that the powerchair shouldn't be out (which in Illinois, is quite often apparently). I don't like using a manual wheelchair, because of how much it tears up my fingers, hands, and arms. I guess it is a price to pay, however!
Thursday, January 13, 2011
Thursday, January 6, 2011
A bit frustrated
I went to a community chorus practice tonight. Tonight was the first night to meet and rehearse. We will be performing it in 7 weeks, so I knew that there would be a lot of practicing and a lot of learning. They were meeting in the basement, so I had to use the wheelchair ramp, and then the elevator. I am 120 pounds. My chair is 264 pounds. The weight limit on the elevator was a mere 350 pounds. I out weighed it. We lowered the chair in the elevator, and I had to take the stairs. Not real easy, but got there. Met the chair at the bottom, and quickly got back in it. My legs were ready to go on me.
When I got down to the basement, I was met by one of the production managers of this. She said that there would be no way that I could get the chair on the stage, and that it would not be able to fit in the script. She saw that I had a cane (my daughter fetched it to help me down the stairs), and said excitedly that I could use the cane to help me get across the stage and to stand when we stand for different parts of the production. I don't honestly think I can do it. I feel that I am left out, and that if I want to use the chair, which I need, I can't be in the production. I understand that there is no easy way to get me on the stage with the chair. But I felt like the kid on the playground that was told that they couldn't play with a group of other kids.
Not sure what I am going to do from here. I enjoyed doing the music, and it was a friend that wrote this entire mass/play.
What do you think I should do?
Angie
When I got down to the basement, I was met by one of the production managers of this. She said that there would be no way that I could get the chair on the stage, and that it would not be able to fit in the script. She saw that I had a cane (my daughter fetched it to help me down the stairs), and said excitedly that I could use the cane to help me get across the stage and to stand when we stand for different parts of the production. I don't honestly think I can do it. I feel that I am left out, and that if I want to use the chair, which I need, I can't be in the production. I understand that there is no easy way to get me on the stage with the chair. But I felt like the kid on the playground that was told that they couldn't play with a group of other kids.
Not sure what I am going to do from here. I enjoyed doing the music, and it was a friend that wrote this entire mass/play.
What do you think I should do?
Angie
It has been forever since I have updated on here. I finally got my power chair, and I love it. I am working with vocational rehabilitation, department of human services, department of rehabilitation, career link, and United Access to try to get a vehicle that I can use to get the chair inside a vehicle, rather than carrying it on the outside on a wheelchair carrier. I am having a hard time using the heavy gate, a hard time balancing and standing while strapping the chair to the carrier. I am having a tougher time getting all of these departments to work together.
I have one semester left at Spoon River College! Yay! I have 5 classes to take this semester. I also got inducted into Phi Theta Kappa Honor Society! After that, it is on to Western. The only problem with that, however, is that it is a 30 mile trip to WIU, and a 30 mile trip home. Not sure how often I will have class, this means that I have GOT to get the wheelchair thing taken care of.
Dislocations have been becoming more frequent lately, but not as painful. Does that make sense? To anyone with EDS, have you experienced this? I'm not saying it is without pain... far from it! But I have noticed that the same dislocation may be an 8 on a scale of 10, rather than an 11 out of 10. I wonder if the joints are sliding in and out more easily, or if my pain tolerance has increased. Maybe a combo?
I tried a Tempurpedic bed at the back store the other day. HEAVEN! I want the cloud luxe! I felt like I was laying on a marshmallow! I noticed that the pain in the joints would disappear for the few moments that I was laying on that! Now if anyone has a spare $4,000...
Hope to post more soon!
Angie
I have one semester left at Spoon River College! Yay! I have 5 classes to take this semester. I also got inducted into Phi Theta Kappa Honor Society! After that, it is on to Western. The only problem with that, however, is that it is a 30 mile trip to WIU, and a 30 mile trip home. Not sure how often I will have class, this means that I have GOT to get the wheelchair thing taken care of.
Dislocations have been becoming more frequent lately, but not as painful. Does that make sense? To anyone with EDS, have you experienced this? I'm not saying it is without pain... far from it! But I have noticed that the same dislocation may be an 8 on a scale of 10, rather than an 11 out of 10. I wonder if the joints are sliding in and out more easily, or if my pain tolerance has increased. Maybe a combo?
I tried a Tempurpedic bed at the back store the other day. HEAVEN! I want the cloud luxe! I felt like I was laying on a marshmallow! I noticed that the pain in the joints would disappear for the few moments that I was laying on that! Now if anyone has a spare $4,000...
Hope to post more soon!
Angie
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