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amitheonlyone
@amitheonlyone

Posts: 4
Joined: May 28, 2016

Spinal Cord Injury

Posted by @amitheonlyone, May 28, 2016

I have a spinal cord injury and would like to meet others who have to deal with the daily challenges that come along with s.c.i. I live in a state that is very needy in offering services for people who have to use a wheelchair all the time, especially when seeking medical services. I have yet to find a local doctor of any kind who has an ajustable exam table therefore I am always examined while seated in my wheelchair so my exams are not as complete as othes who are able to access examination tables. I feel so discriminated against whenever I visit a doctor for anything other than medication refills. Currently I need to see a gynocologist but I am obviously not able to. I call around every couple days to find one with an adjustable exam table but none of them do. Most of them needd me to explain what one is. I find this very depressing and agravating at the same time. That is why I can only make a couple calls every couple days. I can’t stand the fact that this town is so behind the times. I have been able to find doctors in other states that do have these exam tables and that do have knowledge about spinal cord injuries. I really do not know what to do at this point. I will be filing a complaint once I find out who to complain to. So this is what is on my mind but there are so many other things that I would be happy to chat about conserning s.c.i’s so if you also have one and want to chat please repond.

REPLY

Your note reminded me why I’m working in Colorado for a universal single
payer system. I’m doing this both by supporting those who work for such a
system and being on the campaign team of a person running for our state
legislature. Change doesn’t work unless we all get involved and use our
anger about discrimination into action for equality. Our medical system is
so discriminatory in so many ways! Hugs to you and support – would you
doctor and / or staff work with you to obtain an examining table that works
for all patients? Our little mountain library got a grant for medical
supplies to teach good health to families; I bet you can find a grant for a
table!

From my past experience on The Employer Committee of The Presidents
Committee on Employment of People with Disabilities, when The Americans
with Disabilities Act was signed into law, as well as Minnesota State
Disability Council and Minneapolis Disability Council, I would suggest
“that you call or contact The State Disability Council in your state. They
often have information and even programs like your seeking available to
contact. That way people with similar handicaps work with, make friends
with and learn from others facing similar situations “how to live or seek
further information about your condition.

Kay

@irvkay312

From my past experience on The Employer Committee of The Presidents
Committee on Employment of People with Disabilities, when The Americans
with Disabilities Act was signed into law, as well as Minnesota State
Disability Council and Minneapolis Disability Council, I would suggest
“that you call or contact The State Disability Council in your state. They
often have information and even programs like your seeking available to
contact. That way people with similar handicaps work with, make friends
with and learn from others facing similar situations “how to live or seek
further information about your condition.

Kay

Jump to this post

Thank you for the advise Kay. I will absolutly locate this council and see if they can offer any help. I have been paralyzed for 29 years now and I do not know many other people with spinal cord injuries right now. I have known many over the years but some have passed away, moved away or just lost contact with so it would be nice to meet people who do have to deal with this horrible way of living and share information and maybe offer support. Thank you again. Have a blessed day.

@coladyrev

Your note reminded me why I’m working in Colorado for a universal single
payer system. I’m doing this both by supporting those who work for such a
system and being on the campaign team of a person running for our state
legislature. Change doesn’t work unless we all get involved and use our
anger about discrimination into action for equality. Our medical system is
so discriminatory in so many ways! Hugs to you and support – would you
doctor and / or staff work with you to obtain an examining table that works
for all patients? Our little mountain library got a grant for medical
supplies to teach good health to families; I bet you can find a grant for a
table!

Jump to this post

Thank you for replying to my post. I never thought of looking for a grant. I don’t even know where to begin. I will google it and see what turns up though. Doctors that I know don’t really seem to care so much. I need them for so many things I would be very intimidated to even ask them to try and get an examination table that I can use. They have so many patients and my appointment time is always very limited and I never seem to have the time I need with them to address all of my needs. A lot of the time i will ask something and as the doctor walks out of the room they tell me we will address that at my next visit. By then I forget or have already found some way to address my issue on my own. This is by far crapy medical care. I do appreciate your idea and I will absolutly look into it. Thank you very much.

Welcome to Connect @amitheonlyone. Great reminders from @coladyrev and @irvkay312 that we have to be advocates for our own care. It’s tiring to constantly have to remind people of life from your perspective. But every time you do you, you give that person the opportunity to be more empathetic to you and to others. I have an unrelated story to share. One Connect member was using ALL CAPS to write her messages. I wrote to her via a private message, politely advising that writing in capital letters is considered shouting in online discussion groups. She said she did it because she has glaucoma. Well @allegro now has a free pass to use ALL CAPS, and I learned to always ask first and never to assume.

Anyway @amitheonlyone, I am confident you are not the only one. I’m tagging @brad0811 @kellyclayborn who have talked about spinal cord injury in the past. However they haven’t been on Connect for some time. In the meantime, I’ll keep searching for others to connect you with.

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