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RSD Chronic Pain Disabled Mom Seeks Grant Money For Accessible Home

by Melinda
(Delaware, Ohio, USA)

My Oldest Son and Me

My Oldest Son and Me

When I was 36, and my children were 3, 5 and 6, I came down very suddenly with a viral spinal cord injury, like Transverse Myelitis.

This then turned into CRPS (Complex Regional Pain Syndrome) from my waist down.

This has led, over the years, to dysautonomia, which causes bouts of extremely high blood pressure, and from constant severe chronic pain.

My legs and feet have gotten to the point that I cannot stand or walk for very long because of stiffness and pain, so I use an electric wheelchair at home most of the time. In a severe flare-up (a couple of times a year), it's all the time.

Since our laundry is in the basement, I am unable to do our laundry, and we really need to bring it upstairs in our tiny 1100 sq. ft. ranch house.

We must add on to the master bedroom, and make an ADA bathroom, which also includes room for the laundry.

Our current master bath is 4' x 7.5', with only a shower. A whirlpool tub would be of great benefit for my condition.

The cost of this is going to be about $25,000, which we don't have. We can't make our mortgage any higher, as we don't want to put ourselves into a financial bind.

Our medical bills are very high every year, which has kept us from being able to save like we would have liked to do.

We have thought about selling and moving to a more suitable house, but we have not been able to find one that's within the same price range as our house.


Our kitchen is also less than 4' wide and I can just barely get my wheelchair around in the kitchen, and then no one can get around me very easily without my backing up or turning.

A larger kitchen would be so wonderful, and would make such a huge difference in the way I can function in our kitchen.

I spend a lot of time in bed, so consequently we spend a lot of family time in our bedroom, which is very small.

If we could get a grant to add onto our bedroom, we would have space for a sofa and chair so that the entire family could get together comfortably in our room, and our family times would be much more enjoyable.

Any help that we could get from different sources would be so very much appreciated. We have never received a "handout" before, but now we really need the financial assistance.

We could make our home more disability-friendly, with wider doorways, laminate flooring rather than carpet, for the wheelchair, make one ADA bathroom which would also house the laundry, and make our master bedroom larger, because we'd be taking a large chunk out of it to make the bathroom larger.

Thank you in advance for any assistance you may be able to give us, even if it's simply to point us in the direction of available government grants for the disabled.

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RSD Chronic Pain Disabled Mom Seeks Grant Money For Accessible Home

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Jun 13, 2011
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How are you doing?
by: Katina

I was reviewing some stories published and came across yours. I remember the first time I read your story. How is everything going for you? Please let us know if there are any changes.

Have a wonderful Father's Day!

-- Katina


Jun 13, 2011
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RSD for over 24 years
by: Mary

I understand everything you are talking about. I'm in the process now of trying to get a motorized wheelchair. My RSD is my left side now. Started in left arm. I have no strength now in either arm.

I would never wish this disease on anybody. It is hard to keep your head up everyday but if we don't then this disease keeps spreading.

Good luck in getting your grant. You deserve one with RSD. Only people who actually have it really understand the pain and the meds we have to take just to be able to cope.

May 03, 2010
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Chronic Pain Toolkit
by: Katina from Accessible.org

Congratulations on making the effort to submit your story to Accessible.org. With the publication of your story, you are now well on your way to:

1. Getting your story known to a wide audience that could help you.

2. Getting your story polished up and presentable so you can submit it elsewhere, including the White House.

As a disabled person myself, I can sympathize with your situation and I definitely understand your need for help.

I've done a bit of research and found these resources for you:

HUD
http://portal.hud.gov/portal/page/portal/HUD/groups/localhomerepair

Chronic Pain Toolkit!
http://www.aids-ed.org/aidsetc?page=etres-display&resource=etres-300

Others reading your story may be able to contribute more. In any case, please let us know if they've been helpful to you.

Katina from Accessible.org

Good luck!

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