Grants To Help Cherree With Multiple Disabilities Get Permanent Accessible Home
by Cherree Weeks
(Tigard, Oregon, USA)
I am a 58-year-old woman with an 18-year-old son who is a senior in high school. He is very well rounded with above average intelligence.
He is taking all IB classes and hopes to be accepted to the University of Michigan in 2017. He is my only child and I am very proud of him, but will miss him if he goes that far away.
He is the only family I have that lives near here. My mother lives in California. She has a fatal disease and I hope she comes to live with me.
I have a sister that is a long-term missionary in another not-so-safe country. I have two other siblings that are both semi-disabled.
I grew up in Los Angeles with a timid mother and a now deceased alcoholic father. I moved to Oregon to be close to my sister who had moved to Oregon with her husband and son.
I then became pregnant and moved to the Portland area, where I live now. My son's father now has a "new" family and has moved on. We live in a two-story home and my son's father rents out the lower half, as he owns half of the house.Disability Issues
In 2010, I was having tremendous amounts of pain in my right ankle area. Finally, I could no longer walk on it and so I went to the local urgent care. They x-rayed it and thought it was plantar fasciitis on top of my foot, gave me pain pills and sent me home.
I knew that plantar fasciitis didn't happen on the top of your foot, so I called an orthopedic surgeon that I had gone to a long time ago. He was booked way out and suggested another doctor. I made an appointment and went to see him.
He read my notes from urgent care, looked at my ankle, asked me a couple of questions, touched my big toe and said "You have tendonitis." He gave me more pain pills and sent me home with a sleeping boot.
I waited about a week, ran out of pain pills and called back. He had me go get an MRI. After that I went and saw him again and he said that he did as much as he could and would send me to a specialist.
I waited for a call that came two days later and it was a pain management clinic. I knew then that he was not the doctor I needed. I called my GP and got a referral to a vascular surgeon as I had thought that I had a blood clot and had thought this and expressed this several times.
So, I went to the surgeon's office. They did an ultrasound and found that my leg did have a blood clot and that my leg was almost "dead." But they also found that I was filled with blood clots. So they sent me to the hospital, which was next door.
While in the waiting area, I blacked out for six days, waking up to find out that I had had a stroke while in the waiting area and that I was going to lose my leg.
I was in and out of it for several more days. I had to be told twice that I had lost my leg. Meanwhile I was given iodine during a CT and found that I am allergic and it shut down my kidneys, so I had to go on dialysis every day.
My next and most serious problem was that my blood platelet count was dangerously low and getting lower to the point they thought I would die and didn't know what was wrong.
They told my family, including my then 12-year-old son, that I was going to die. One day while I was on dialysis a new doctor came in and looked at my chart and announced, "I know exactly what is wrong with her!" I have a rare incurable blood clotting disease called, "Catastrophic Antiphospholipid Antibody Syndrome."
After that the treatment was daily Plasmapheresis https://www.mgawpa.org/pdfs/Medical/Information%20on%20Plasma%20Exchange.pdf along with dialysis. My platelet count at one time had been four whereas normal is over 400,000.
Once my numbers were fairly normal and my kidney function was back to normal, my physical and occupational therapy started. At first I wasn't even able to lift up my head.
Finally I was "well" enough to go to a nursing home to learn to function again, both in a wheelchair and then with a prosthetic. While there, my knee became infected and I had to go back to the hospital and have it removed. Back to the home only to get a lung infection, back to the hospital, where I was kept do to hallucinations. Back to the home, and then finally home three months later.
At first I had short-term disability, then long-term disability and great health insurance and employment. I was told to apply for SSDI by the long-term disability company.
In fact, they hired a company to do all the paperwork and deal with the SSDI people. I was awarded it on the first filing. It awarded for both my stroke, which left me with short-term memory loss and as an ATK amputee.
As I was the CFO at my employer, I had to be replaced at some point, but had health insurance and disability until I could get on Medicare.
Then the long term disability company decided that they wanted to see if I was "really" disabled so they sent me to a doctor to have my memory tested and I failed so miserably that the doctor said I was faking and they stopped my payments.
I had hired an attorney to have the doctor who had misdiagnosed me originally but they couldn't find a doctor to testify.
So now I am unemployed, on SSDI and Medicare and yet I still have the same bills I had before all this happened. Plus now I had Medicare, a supplemental plan, and 11 drugs I paid for monthly.
I had been putting into an education fund and a retirement fund monthly but not anymore. I got rid of every cost I could find, including selling some of my stuff.
My son will be leaving for college soon and in June I'll lose $767 a month from SSDI as he graduates from high school.
Plus I'll lose child support when he moves. I'll be forced to sell my home, as I won't be able to afford it and it is much too big for me.
I'm planning on having $100,000 from the sell, but I will only be making $16,000 a year from SSDI. This will afford me about a $573 a month house payment, including P & I.Income Efforts
Working outside the home would be very hard as there are days that I have phantom pain, blisters, broken parts on my prosthetic etc. that would cause me to miss many days of work. I feel that wouldn't be fair to an employer.
Being a boss at many jobs, it wouldn't be a good situation for me. I've signed up with several at-home agencies, but nothing has ever come of them. I've applied, taken tests, even scored high, but you aren't given a reason, so you never know why you aren't higher, so no room for improvement.
I've tried to sell things on Etsy and eBay, but with no real luck. I've looked for piecemeal research jobs that you "bid" on, but the people overseas bid like $3 an hour and I can't work for that.
I'm already on SSDI and not old enough for SSI yet, but it will be the same as what I make now either way.
As for church, I donate time there and get free classes and lunch sometimes. I don't get money from anywhere else.
My family and friends would help if they could. They give of their time if I ask. I have checked into grants, but never seen to quite "fit" into the "box" 100% or they don't have any funding for what I need or frankly, I don't know who to ask or where to look.Specific Needs
I'm looking for help in building an ADA-type house that can be my "forever" house. I'm tired or going up and down stairs either on my behind or one step at a time with my prosthetic leg.
I want to be able to not bump into doorways, reach cabinets, not have to hang at a sink, to cook sitting without having to stand, then sit, then stand etc.
I've been looking at houses that I can "gut" and then build inside the way I need them, but then who knows what problems you might find.
I can't afford an already built home or even a modular home. If I had the money or someone that could do it, my ideal would be a house built on like ¼ to ½ acre so I could garden or maybe even have a community garden.
We're talking two small bedrooms, two bathrooms, a living room/den combo, maybe a small craft/office, the least amount of walls and no stairs.
I know this a lot to ask for, but I have friends and family that can help with the labor and I do have some money just not enough to be safe. Being disabled I've learned is expensive, not just hard.Business Idea
I contacted SCOUT here with a consignment store idea, but the rep didn't sound very encouraging. As I said before, I've tried selling on Etsy and eBay, but never found a "niche" that would work for me.
I've worked as a boss most of my life, but I'm not sure how to start a business and if I could even run one. I know how to do lots of things, just not use how to utilize them. I do not sell myself well. I do a lot of volunteer work and a lot of things for people for free.