Not Sure How I Feel

Hi all,

The last few months have been busy and I have gone through a lot, some good and some bad. Some I will just touch on because they are a bit to personal to share. I took a risk and did not appreciate the end result, but do not regret it one bit because I know that I can fall to the ground and I WILL pick myself back up and I WILL be okay. I've always known that, but sometimes I need to remind myself.

Anyways, about a month ago I was put back into Occupational Therapy to work on some daily life skills. This has been something I have wanted for a while. We are working on mobility related things (wheelies, going up and down curbs, transfers ect.). I look forward to therapy ever week because I know it's going to make my life easier and better and it helps that I finally have a therapist who does what he needs to do to help me. I have been let down by a lot of therapists so this is very important to me.

This brings me to my next point. My OT is coming to my house on Thursday to do a home assesment meaning, see how I get around and what he can do to make that easier, both through therapy and modifcations. I'm not sure how many of you know this, but I live in a four-level split home so I can not use my wheelchair to get around due to stairs and a few other obstacles. So, instead I crawl but, due to the problems with my shoulders and knees, this is no longer an option. My OT has told me that if we don't chage my mode of getting around the house, I will quickly lose function in my shoulders. As a paraplegic, this is something that is very scary for me. My arms are my mobility, my independence, and my freedom and I can not imagine life without that function. No, I can. I just don't want to. We are looking at getting a platform stairlift put in as my room is downstairs. This would alleviate the need to crawl up and down the stairs and my room itself (with some re-arranging of all my crap) would be accessible. So are my kitchen and dining room. We will be putting hardwood in the living room (there is currently carpet) and I will work on wheelies more to learn how to go down the step that leads into the living room. The only real problem I see is the bathroom. We have a bath lift. but if I wamt to get my chair in the bathroom there is quite the possibility that the doorway will require widening, which I'm not even sure can be done and the bathroom itself is quite small, although with some manuvering I think I'll manage. There are a thousand things running through my mind about this, but I will find out more Thursday.

"He's not jaded or bitter, he's gonna leave the givin' up for the quitters."
This lyric has never stood more true to me. Things are stressful and hard right now but I WILL NOT give up, I will keep fighting; I will always keep fighting.

J

p.s
For those of you who believe in praying, would you mind sending up an extra prayer that our house can be modified enough for me to get around? It would be much appreciated.

It's here!!!!!!!.... actually, it's been here a while

Hey all,

I know I promised pictures of my new chair. I went and picked that up about a month ago... Love it so far :) . I also got my standing frame three weeks ago... Here are some photos of the chair and if you want to know more about my standing frame check out: http://www.easystand.com. I have the Evolv.

J

Busy Busy Busy!

Hey All!

I just realized it's been almost two months since I blogged, my apologies to those who read this blog. So, why have I been gone so long?

• I had final exams the last few weeks of June (I passed Chemistry :)
• Early July I went out of town for a while and caught a football game (my Rider Pride was in question that day)
• I have spent a lot of time out of town getting fitted for a new wheelchair and a standing frame.
  
• I head to camp in a few weeks, then to pick up my chair and frame as long as it's here and then hopefully head all the way down to Texas.
  

Hopefully you have an idea as to why I haven't been around.

Now, you are probably wondering why I am already getting a new chair because I just got one in October and was anxious for it to arrive. It never has fit me quite right, the footplate is way to short/low so I have to have a wedge under my feet which is a problem for transfers. Secondly, as most of you know I have serious shoulder problems and this new chair will be made of titanium as well as have Spinergy wheels, which the government would never in a thousand years pay for and because it will be considerably lighter this should alleviate more shoulder pain.

For those of you in a wheelchair I know you understand when I say that the chair is an extension of you; I really wanted a customized chair that is exactly how I needed and wanted it right down to the pink frame and spokes.

Hope you are all having a wonderful summer!

"He's not jaded or bitter, he's gonna leave the givin' up for the quitters."

J

Questions?

I've never understood it, will I ever? I have never understood why I ended up with this chair or this life. I am not complaining but, I am at an age where I finding myself wishing it was different. I put on a smile and I keep going because I don't have a choice, this is the hand I was dealt. That d0es not mean that I do not feel angry at times.

Those damn curbs, stairs and small ass bathroom stalls get to me. I don't have the balance to be without anti-tippers so I can do curbs. We tried and I had another tip and smash head episode. I don't get the PT I need so I can learn to do these things. Worst of all I roll through a store and get that lingering stare. Why? What did I do to derserve that? I actually had to leave a line-up the other day because some 16 year old girl just thought seeing someone sitting in a chair was AMAZING. I feel like turning around and saying "I'll give you something to F**@$ing stare about."

I know if it were not for that chair, I would not be who I am nor would I know a lot of the amazing people in my life that have inspired me, helped me, encouraged me and loved me. I long for the feeling to stand and hug those people or to be able to look at someone in the eyes when I'm thanking them for what they've done for me without them having to kneel down to my level.

Sorry, I needed to vent and I hope you understand. Thank you for sticking by me for my friends who read this, it means the world to me.

On a side note, I would like to ask for you to check out Ryan Clausings Caringbirdge. He was injured a few months ago in a motorcycle accident, left paralyzed from the nipple line down. It's his little one's birthday today and he had to go to the hospital halfway through for some medical issues. Please keep your fingers crossed he can be home for his anniversary tomorrow and for his little guys birthday Thursday!

http://www.caringbridge.org/visit/ryanclausing

"He's not jaded or bitter, he's gonna leave the givin' up for the quitters."
J

Why Did I Start This Blog?

Hey there!

As I mentioned before I am going to get my new wheels put on next week, I'm pretty excited.

The real reason I decided to blog tonight though is because I wanted to talk a little bit more about why I started this blog. I wanted to help others in the same situation. I know how hard it is sometimes, how frustrating the simpelest things can be. I'm not going to lie, there are times when I wish I could walk and I get angry that I can't walk. I get angry that I try SO hard and yet I still sturggle. The truth is though, I am one very lucky person; I can feed myself, talk, learn and so many other things. I want to mentor people; help them in any way I can and so, what I am saying is if you have any questions or topics you would like me to cover on being in a wheelchair or anything else for that matter, please comment and let me know because as I said, that is my objective with this blog; educate people about being in a chair and help those who are in way possible.

" He's not jaded or bitter, he's gonna leave the givin' up for the quitters."

J

Long time, no blog!

I just wanted to say that yes, I am still alive. I haven't had time to blog due to homework, therapy and all that fun stuff. I am going to have my wheels put on next week so, I'll be out of town and away from school. Hopefully I'll have a chance to do a real post then.

"He's not jaded or bitter, he's gonna leave the givin' up for the quitters."

J

New Wheels!

Hey!

I'm in a super upbeat mood and feel the need to blog! This could be he consequences of all the coffee and excitement over the last few days.

So, I am getting new wheels for my chair, those old mags have been coming offset over and over the last few months. They are the spoke ones. They are lighter (made for titanium instead of aluminum) so they will be easier on my shoulder. They will be adding new casters (little wheels in the front) They are going to be purple. The wheels will have silver pushrims and black spokes. They will add some cumber (tilt) to the wheels and put them closer to the front/middle of my chair so not so much energy gets lost through the frame when I am wheeling. These were reccomended to me by a rehab/ seating consultant and by one of my PT'S so if it is going to help my shoulder; we're all for it. Power chairs, I tried one; just isn't me.

This brings me to a story. For you wheelchair users out there, you know the real low-backed wheelchairs like Quickie Ti's? I wanted to try one of thos while we were looking for wheels so I transferred to one. Well, I didn't realize how quick those spoked wheels carry you and I went to lean back because my chair has a high seat and anti-tippers so I can get away with it. Well, this chair had no anti-tippers and BAM I landed on ceramic floor! I have NEVER seen so many people come flying out of their offices so fast. I'm pretty sure they were worried were going to sue them, I should've asked for a deal on the wheels :). My neck and back took the brunt of the fal, I've learned from numerous falls that the best thing to do is lean forward as I fall so my head stays upright and never hits the floor. Well, this time it saved me, I'd have cut my head open on the corner of some stairs if I hadn't done that. I think in end,, my pride hurt more than my back and neck.

For anyone interested:

Frog Leg Casters- http://www.southwestmedical.com/products/4-x-1-1-2in-Frog-Legs-Plastic-3-Spoke-Caster-Wheel-19450.html (Mine Will be Purple because I am just THAT cool :)
Spoke Wheels: http://www.spinlife.com/Spinergy-SPOX-SL-Wheels-Wheel/spec.cfm?productID=1973 (not exactly these ones)

"He's not jaded or bitter, he's gonna leave the givin' up for the quitters."

J