6 replies to this topic

[Sandman]

Hey all -- I'm new here, and It's kind of hard for me to write this, but bare with me -- making it short here.
also forgive the wierd "I just realized..." but it really feels like thats true -- I havent focused on it before, I think I was tottally blocking it out...

I was in a car accident when I was 11 years old, in 1999 (I'm now 17) Apparently I'm a
"Complete" injury -- and I can't recall the level of injury -- but I remember it was in more
than one place, so somewhere in the T's and maybe C even...

Well, I spent 6 months in the hospital and than... that was it. Literally, thats it.
they "released" me and said "goodbye" and I was only taught how to catheterize -- I have a
nurse come in every 3'rd day to do some "Rectal stimulation" so I can do #2 ...

The only way to describe the way I been feeling this past 6 years is... "In Awe" I never
acknolldged my injury -- and only until recent DAYS did I look into the mirror and think
"god damn... This really is real"

I don't do any therapy, or excercises, no special diets I eat whatever is there, I'm
starting to gain weight that I can't lose, becoming to lazy to do anything...

I have full control of my arms -- but I can't feel anything below my nipples -- so I can't
fell my stomach and so forth -- also a wierd note is I can't feel my UNDER ARMS you know
wear the armits are and move on up until past the elbow...

As you can see It was probably a case of racism -- I was tottally neglected and left by the
hospital and resulted in 6 years of doing nothing -- I spent 2 weeks doing excercices at
a gym 6 months after my injury and the insurance stopped paying so I stopped going.

Anyway -- feel free to comment on anything above -- but my main QUESTION here is:

I want to be free now... im 95 % independent, I'm strong, and young -- How can I break free
of this nurse? I want to do that bathroom business on my own, but I have to see -- I think
its near impossible to gather up the encourage to put my finger there... is there ANY
other alternative?

thanks --

[Kevin]

Sandman, on Jun 5 2006, 01:18 AM, said:

Hey all -- I'm new here, and It's kind of hard for me to write this, but bare with me -- making it short here.
also forgive the wierd "I just realized..." but it really feels like thats true -- I havent focused on it before, I think I was tottally blocking it out...

I was in a car accident when I was 11 years old, in 1999 (I'm now 17) Apparently I'm a
"Complete" injury -- and I can't recall the level of injury -- but I remember it was in more
than one place, so somewhere in the T's and maybe C even...

Well, I spent 6 months in the hospital and than... that was it. Literally, thats it.
they "released" me and said "goodbye" and I was only taught how to catheterize -- I have a
nurse come in every 3'rd day to do some "Rectal stimulation" so I can do #2 ...

The only way to describe the way I been feeling this past 6 years is... "In Awe" I never
acknolldged my injury -- and only until recent DAYS did I look into the mirror and think
"god damn... This really is real"

I don't do any therapy, or excercises, no special diets I eat whatever is there, I'm
starting to gain weight that I can't lose, becoming to lazy to do anything...

I have full control of my arms -- but I can't feel anything below my nipples -- so I can't
fell my stomach and so forth -- also a wierd note is I can't feel my UNDER ARMS you know
wear the armits are and move on up until past the elbow...

As you can see It was probably a case of racism -- I was tottally neglected and left by the
hospital and resulted in 6 years of doing nothing -- I spent 2 weeks doing excercices at
a gym 6 months after my injury and the insurance stopped paying so I stopped going.

Anyway -- feel free to comment on anything above -- but my main QUESTION here is:

I want to be free now... im 95 % independent, I'm strong, and young -- How can I break free
of this nurse? I want to do that bathroom business on my own, but I have to see -- I think
its near impossible to gather up the encourage to put my finger there... is there ANY
other alternative?

thanks --

It sounds like you have some catching up to do, but it's possible! You know what you need in order to become independent, now you just need to know HOW to do it. Go to an occupational therapist, SCI nurse, or anyone else who can teach you to do your own bowel program. If possible, go to a real rehab program. You obviously got cheated out of good rehab when you could have used it the most, but there's no sense in dwelling on that now. Think about how going through rehab now could help you. There are some very good rehab centers that accept people years after their injuries.

Other general suggestions... sports! Find out what you CAN do and meet other wheelchair users in the process. What about school? You say you're 17 now. What are your plans for college? Find something you're absolutely fascinated with and learn everything you can about it. We all have passions in our lives. Why have them if we aren't meant to follow them? What are yours?

The short answer to your question is yes, you can become independent. You have many, many more opportunities than you think you have. As you said, you're young and strong. Look at all the possibilities you have (although they're probably hard to see at the moment), find things you want to do, and go get the skills you need so you can do them.

Think seriously about going through a real rehab program now. I have a feeling you'll be amazed at how much better you feel for doing it and how much more knowledge you have.

[chimneygirl]

http://www.backuptrust.org.uk/

Back-Up is a national charity dedicated to providing opportunities for spinally injured and abled bodied individuals to experience the buzz of outdoor activities together and so increase self belief, independence and motivation.

They organise a varied programme of activity courses throughout the year,
which integrates spinally injured participants and able-bodied volunteers.
These act as a catalyst which can totally change someone's attitude to disability
and enable them to focus on how much is possible.

I have done loads with backup, they really helped me gain my confidance....

[xMaddiex]

realising youre disabled is a big thing to face up to. youve been getting by for six years so you probably know the basics about being in a wheelchair and stuff, but the organisations mentioned above will be a big help and now youve come to terms with youre injury youre half way there...or something like that...anyway, if you want to talk or ask questions, theyl always be someone here for you

[Joed]

When dealing with any insurances for coverage of what you need, I've found that one has to be very assertive....don't take 'no' for an answer. I had to get downright onery with them at one point, but it's what got the ball rolling. At 17, assertiveness often doesn't come easily....it's a learned skill....just be clear on what you're goals are and establish a good rapport with one contact person who is on your side. Associate yourself with other helping organizations, as they can often help you to cut through any tape and speed things up.

Don't forget to get written documentation from your doctors as to what your needs are for rehab, and present these to your insurance. I've found that you can't assume that the doctors make sure that the right info gets to where it needs to be.

Best of Luck to You....let us know how it goes.

[Sandman]

thanks alot for the input guys -- I really appreciate it

... however, there seems to be something I forgot to mention, dont know why I overlooked it.

My case is "Settled" all I got out of it was a 2001 "accessible" van that shot out when the ramp fell through on the road ...

The accident occured in the west -- but I moved too the middle-east and things are not even HALF as good (condition wise) for a wheel-chair bound person.

I've constantly had a UTI for about 5 months... could it be the different caths?

well most of the stuff you guys mentioned cant be done because Im in the middle east, my case is settled... and yeah... anyother suggestions?

[xMaddiex]

this sounds like a stupid question - but the middle east of where? like what part of which country? rules and stuff vary in different countries obviously, but you can get in touch with your local government/social worker/council/OT and they can tell you what services are available for you to call or get in touch with.