9 replies to this topic

[rkzenrage]

I really did not know what to put... mine is not so simple. I have a birth defect that is from L1-5 and down into the S area, but also have injuries all through my spine. I have Osteoporosis and degenerative disc disease as well as a number of other problems like a severe stenosis of the epidural space (basically it is a birth defect like my lower spine and spinal cord), advanced arthritis, bla, bla, bla. There is no name for what is wrong with me, it is tied in with my hormonal system and other stuff like my liver.
I just don't want anyone to think I was being dishonest with my answer when signing-up.

[Alin Steglinski]

rkzenrage, on Oct 10 2006, 05:49 PM, said:

I really did not know what to put... mine is not so simple. I have a birth defect that is from L1-5 and down into the S area, but also have injuries all through my spine. I have Osteoporosis and degenerative disc disease as well as a number of other problems like a severe stenosis of the epidural space (basically it is a birth defect like my lower spine and spinal cord), advanced arthritis, bla, bla, bla. There is no name for what is wrong with me, it is tied in with my hormonal system and other stuff like my liver.
I just don't want anyone to think I was being dishonest with my answer when signing-up.

[bigsmiles]

rkzenrage, on Oct 10 2006, 11:49 PM, said:

I really did not know what to put... mine is not so simple. I have a birth defect that is from L1-5 and down into the S area, but also have injuries all through my spine. I have Osteoporosis and degenerative disc disease as well as a number of other problems like a severe stenosis of the epidural space (basically it is a birth defect like my lower spine and spinal cord), advanced arthritis, bla, bla, bla. There is no name for what is wrong with me, it is tied in with my hormonal system and other stuff like my liver.
I just don't want anyone to think I was being dishonest with my answer when signing-up.

I like honest people... Welcome mate

[LadyPilot]

You have a lot to deal with don't you?!!!

Welcome, I hope you get to enjoy this site as much as I do......

Any questions? just ask

[cvelusc]

Welcome to the site rkzenrage!

[rkzenrage]

Thank you all for your welcome. I have been feeling a little apprehensive about trying sites again.
My first attempt last year did not go well.
I was, in not so many words, asked to leave, since I can walk short distances and am not confined to my chair at ALL times.
Kinda' why I wanted to be sure that I was VERY clear about my condition and make this thread, so no one felt that I was being unclear.
I was not intentionally unclear on the other site. I have to use the chair a lot and cannot leave the house without it and use it in my home a great deal. If not in the chair I use a walker or cane (on a REALLY good day) just to go to the bathroom, etc, but not to do any real traveling.
Apparently, they only wanted to speak to those who were strictly confined to chairs 100% of the time and seemed pretty ticked that I had joined their site.
I read your description and that did not seem to be the case here.... so I just wanted to be clear.

I've been sick for a long time. It gets pretty lonely. I'm in a weird place. My ribs break if I push a regular chair, so I have to use a power chair, but I can get up and go to the restroom or get a drink if I need to.... so no one really looks at me as able or fully quad. I have no community, no sangha. It has been years.
Do you suppose this may be the one for me?
If not I will understand and there will be no hard feelings.

[Avocado Baby]

Hi! Of course you're welcome here! Just cos you don't fit into a particular 'category' doesn't mean that we can't share experiences and views on things. We all have our differences but there are lots of issues we share and can help each other out with! I have Spina Bifida, so mine is a birth defect and not an injury either and everyone has been very welcoming!


I hope you like this site as much as I do. It's been a great help to me!

[rkzenrage]

Whew...
Thank you very much for your kindness.

[Joed]

Hi rkzenrage....and welcome!

I'm a part-time walker too, and no one has kicked me outta here yet.

It's hard for people in our 'in-between' condition to find a place where we really fit in. I'm glad I found this site two years ago, as the forums where I had been posting were mainly people with disk issues...and although they were a good group, I wasn't able to get the kind of info/feedback that I really needed.

I hope you'll find this place as useful and supportive as I have.

Edited by Joed, 11 October 2006 - 11:37 PM.

[milosh]

my case also is not so typical and i don't suffer plenty of problems other quadris do and vice versa. of course, you're welcome! ;)