Update! Has it been this long?

Well, well, well! Almost May already! My blogging has been lax, and I am sorry for this!

The chair has helped out so much! I still have some family that doesn't think the chair should be necessary. I really wish they were right~

On May 14th, I graduate from Spoon River College! I am getting an Associates of Arts in Teaching for Special Education, and another AAT for Early Childhood Education! I am planning on attending Western Illinois University in the fall. At graduation, however, only one side of the stage has a ramp. This is the side that everyone comes down from. I guess we are going to have my chair at the end of the stage waiting, and I am going to walk across the stage for graduation. I am extremely nervous about this, as I am so scared to fall, or throw something out, such as a hip, while going across the stage. I really want to do this, but I am just nervous. With the way the flow of the graduation is, my disability advisor at the college thought it would be the best, if possible, to try it this way. I also found out that I am the only one going through graduation with an AAT degree. Only one other person is graduating with this degree, and she is not going through the ceremony. I wish she was!

Still waiting to hear who is coming to watch the graduation. It is at a local high school gymnasium. I kinda laughed to hear that I have to go back to high school in order to graduate from college!

My daughter, that also has EDS, just had a tooth extracted last week. As usual, she is having problems healing. She was pretty sick last night and this morning. She is home from school, and it appears that I will be calling the doctor today. Pray that it isn't something serious!

My only other major issue right now is gas stations. Does any other EDSer have an issue with this? The gas stations offer handicapped fueling, and they tell you to honk twice, wait five minutes, and if no one comes out, honk again. I now honk twice, wait about 3 minutes, and then call inside. I have been collecting the phone numbers of all local gas stations. I had to leave one gas station, as the attendant refused to help because she was alone. She didn't want to be outside the building if anyone else showed up. I didn't have the phone number, so I sent my daughter inside to tell her we needed help. She told this to my daughter after waiting almost 15 minutes for her to come out and help. She, being the sassy 13-year-old she is, quipped to the attendant, "If you have a sign that says you provide handicap fueling, you should provide it, or take the sign down!" That's my Sami... I now do not go to that gas station. If at all possible, I get my husband to fill the tank for me. Gas prices being what they are, however, I am trying to stay away from as many of those stations as possible! I have a full size, 1991 Chevy G20 Sport Van. We still laugh at the "Sport" part of the name. We joke that it runs well, and passes everything... except a gas station. It has a wheelchair lift installed in it, so while it is short on looks and gas mileage, it sure is a help to have.

Thanks for reading! Hopefully will update again soon!

Winter and Wheelchairs

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!

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

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