Thursday, December 30, 2010

Would I Change It?

The above question is one I have been asked many times. If I could, would I take the opportunity to be able to walk? The not so simple answer is, no, I  would not.  My disability does not define me, but it has shaped me.  It has made me a more accepting, less judgemental, and more compassionate person (or at least I hope it has).  If it were not for my Cerebral Palsy, I would not be the person I am and I know that.  Sure, sometimes I feel overloaded by all the stuff that goes along with my CP, but everyone has things that overload them; work, school, kids, marriage. We all have something that overwhelms us but, truth be told, often times the things we fret over really aren't things we should be worried over.  Now, obviously if your marriage is falling apart and your significant other says they want a divorce or if your kid falls and break their head open well, yeah, you should probably be stressed.  I stress a lot about the unknowns. Driving, moving out on my own, finding a job and all the other stuff and so, as a coping mechanism, I ask myself "is this really worth my time and energy right now?" 99% of the time the answer is no. I shake my head at myself and get on with my day. Anyways, my CP has taught me that I need to deal with the challenge I am currently facing rather than the ones that I may face in the future.  The challenges I face, they're good.  If everything came easy I would be a lot less grateful and excited when little things happen.  For example, my OT has told mom to do more work with me in the kitchen for daily living/fine motor skills and the last few days have been quite successful.  Yesterday with very little help, I made macaroni (yes, it was from a bag, I'm not THAT good yet :) and dished myself up and after cut up some garlic sausage.  Today I cut up more sausage and cut up the cucumbers for the salad (tomatoes are still a bit difficult and need some work). Now, to the average person, this would be no big deal but, because of my challenges with fine motor skills, this was huge and I am SO excited to be able to say I did it!  There are some obstacles I still face like cutting the tomatoes, being able to reach the buttons on the stove, and being able to strain things.  Mom has assured me that with a little bit of help from OT to find the right adaptive equipment, all those issues can be addressed.  Then the dreaded thought came into my mind and I asked mom if she thought I would always have to use certain adaptive equipment and she said yes and that there was nothing wrong with that.  I told her that needing to use adaptive equipment sometimes makes me feel less capable and just as I finished saying that, I realized how flawed my thinking was. Mom beat to it and told me that I have to take the attitude that if I didn't use the adaptive equipment I wouldn't be able to do it all so I may as well take advantage of the things that are out there to help me.   I also asked her yesterday (and please do not leave nasty comments, I am simply being honest) if it was wrong of me to be jealous of people with CP who could walk and she told me yes because she thinks it is a trade off and that there are probably things that the people who can walk can't do that I can.  True. 

To anyone out there facing a challenge of any kind, don't compare yourself to other people because even though on the outside their life make look easier, you do not know their story just as they do not know yours.  You can do anything, you just have to want to do it.  The only limits you have are the ones you place upon yourself.

Ok, it's 4am, I'll quit preaching now.

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

p.s.

Ryan Clausings story is being covered by FOX News!!! Thank you to anyone who commented, shared, or prayed and a special thanks to Joan, the writer of yesterdays article.

Tuesday, December 28, 2010

Ryan Clausing

Hi all,

I have posted before about Ryan Clausing and his family.  His family is having a lot of trouble right now regarding the legal system and his accident.   If you would like to read more about the Clausings go :

This article
His Caringbridge
 The family site about the accident

His battles are far from over as with any life changing injury, but his battles should not be made more difficult by the legal system which is in place to serve justice.  He was almost killed.  There is no debating that and justice needs to be served.  Please keep him and his family in your thoughts and prayers.

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

J

Friday, December 24, 2010

Little Things Make an Enormous Difference

This brought tears to my eyes. The hearts of others usually open during the Christmas season and we must remeber it is not all about the best gift. There are people out there who can't even afford food, nevermind gifts.  Hold your family close and to those of you how have little ones at home, enjoy being woken up at oh, I don't know, 5am? :) 

http://thebloggess.com/2010/12/my-heart-grew-three-sizes-and-now-i-have-an-enlarged-heart-worth-it/

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

J

Thursday, December 23, 2010

Because You're DYING to Know

Hey All!

I went and got my AFOS adjusted today, they feel MUCH better. OT came with the DME, they measured for a lift and got my standing frame adjusted properly and tried a standing chair with me. That was a pretty cool experience because there is not table like on a standing frame. There is a chest strap and seat belt. I have fairly decent trunk control so my OT took the chest strap off and although I felt a bit off balance at first, it was nice to be less restricted as compared to my standing frame. Right now, however, it would not really be a practical piece of equipment due to the fact that it's about 10 pounds heavier than my current chair. After Christmas, I will be allowed to borrow it for a week or s0 to try at school where it could be used in a practical way (eye to eye with peers, not sitting for so long during the day). As far as everything else is concerned with the home assessment, we will be able to widen the bathroom door, my bath lift is ready to go, and dad is fixing the shower over the holiday. Thank you to anyone who did send up a prayer on my behalf for today :). The next step will be choosing the right lift (we have pretty steep stairs.) and then securing funding for it so, again, if you wouldn't mind sending up an extra prayer about that, it would be very much appreciated.

Now that that is over, I don't have therapy until the first week in January, which being that I am on break and that it is Christmas time is a nice thing. For the next couple of days, I will be trying to focus on relaxing and leaving behind the things that have to be done. Even if it is just for a while, I need a mental break because as I have said, the last few months have been crazy. I will be enjoying time with family, fun, food, and of course, sleep. I hope you can do the same. Merry Christmas!

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

J

Tuesday, December 21, 2010

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.

Tuesday, October 12, 2010

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

Monday, August 2, 2010

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

Monday, June 7, 2010

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

Saturday, April 24, 2010

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

Thursday, April 22, 2010

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

Thursday, April 8, 2010

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

Wednesday, March 31, 2010

Wheelchair Problems Anyone?

Hey Everyone!

Tonight I went shopping with mom, sister, her friend, and my nephew. All day I had a funny feeling something was wrong with my chair. A few months back, one of the wheels became offset, I don't know how or why... Today, the same thing.

It has to get fixed before I go out of town on Monday so, tomorrow I will take it in to be fixed which means, wait for it...... NO SCHOOL FOR ME!! I can't realy go to school with no wheelchair....

You might have expected me to be pissed off that my chair is messed up but, I've been in such a negative mood the last while that I'm just tired of it so, I'm finding the positive in this situation.

What positive thing happened to YOU today?

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

J

Monday, March 29, 2010

Shoulders and Wheelchairs.

Hey!

For those of you who are in a wheelchair and read this blog, I'm sure you can relate when I say wheelchairs cause some pain issues with the shoulder.. I have been trying to recuperate for about a year now, going to PT, changing how I do things and all that. I've progressed bit by bit but, I'm still having some serious pain issues. Today, I finally went for an ultrasound to check for a tear. To be honest, I was hoping for there to be one so I could have surgery and be done with it. NOPE! The radiologist reviewed it right then and there and told us I just had severe inflammation. So, same old stuff. PT and Cortisone. Sorry to come and rant.

I might be frustrated at this point and sick of being in pain but,

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

J

Sunday, March 28, 2010

Shocking and Sick and On a Lighter Note

I wanted to post two links tonight. The first one makes me sick. For those of you who are following from the Apparelyzed Forum you may have already heard about this. Ths guy got beaten with a metal bar from his own wheelchair! How low can you go? http://www.huffingtonpost.com/2010/03/11/wheelchair-bound-tourist_n_493653.html
One of the youth has been caught, the other they are looking for. 12 and 15 years old *shakes head*. The link shows the attack, just to warn anyone who's interested on checkin' out the link.

On a lighter note there is a man named Brandon Sulser, he was paralyzed a while back and has been featured in a vid of Collin Raye's. It's called "Quitters" and I think that everyone should hear it :). http://www.youtube.com/watch?v=yEFHbGWv8u8

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

J

Saturday, March 27, 2010

Hey Everyone!

Hey There,

I am starting this blog to share my experiences with other people. I have Cerebral Palsy and decided this was a cool idea to get to know people in similar situations.

I'll keep this post short because I am exactly sure what to tell you about myself. I have Spastic Diplegia. I like going on the computer, hanging with friends and Country Music. I LOVE coffee and I do not like spiders.

That's all I'll write for today. Feel free to comment and tell me about yourself or feel free to ask a question if you have one I didn't cover here.

Thanks for Reading!

J