Disability Grant To Help Multiple Sclerosis Disabled Woman With Housing
by Karin Bosela
(Winter Garden, Florida, USA)
I am a young 50-year-old woman raised on the corner of my grandmother's 40-acre farm. I learned at a very early age that homegrown vegetables were best.
Mom always preached you are what you eat so I maintained a very healthy diet and still do.
I remember mom as a very generous woman, working tirelessly for Catholic charities and programs through our church.
My father (and my hero) whom I unfortunately lost this past October, had the greenest thumb I ever saw, along with the biggest heart.
He had the ability to grow anything. He raised vegetables, chickens and turkeys. He always gave a portion away to less fortunate families along with flowers and trees he raised to beautify their property.
He was a contractor by trade and an amateur horticulturist. He donated his labor to repair the church we were members of and the school that we attended.
I tell you this because I want you to understand the person that they taught me to be: honest, hardworking and trustworthy with a strong commitment to help others.
In November of 2010 after working more than 60 hours a week for three years the property management and investment firm I worked for eliminated my job due to economic downsizing.
Although I relentlessly looked for work I had to resort to collecting unemployment to help make ends meet.
In February 2011, I became ill and was taken to the emergency at ORMC Hospital presenting with numbness in both legs that was spreading toward my chest.
I was admitted to the hospital, underwent a total of nine MRIs, a lumbar puncture and a very strong round of Solu-Medrol steroids for five days. It resulted in a diagnosis of primary progressive multiple sclerosis (PPMS).
Although all forms of multiple sclerosis are debilitating and degenerative, I was diagnosed with the primary progressive form. Unfortunately, it has no FDA-approved medications to help slow the progression of this disease.
This type of MS progresses slowly and steadily from its onset. There are no periods of remission or recovery and symptoms generally do not decrease in intensity.
Approximately 15% of people have PPMS. This form of MS has no approved treatment therefore people with this form of the disease have nothing to rely on except symptom management.
After going to my first appointment with my neurologist specializing in multiple sclerosis for more than 35 years, I was informed that I would not be able to return to work again and that I needed to start the application process for Social Security Disability.
I cannot begin to describe the shock of those words and how devastating they were; after all at the age of 48 I still considered myself young and still wanted to work.
This was really something that I was having difficulty with as I have always worked and never had to ask for assistance. I have had to accept that having MS you learn humility -- I can no longer do everything myself and I need to ask for help.
One battle won… but only to receive the news that I had breast cancer in January of 2012. I underwent chemotherapy with all of its side effects that managed to increase my MS pain and bilateral mastectomies to thankfully be told that I am in remission.
It was a long struggle consisting of a year with no income, being denied Disability twice, as the Social Security Administration made a typo of my information.
They proceeded to tell me that even though the error was on their part I needed to wait an additional 15 months until my case could be reviewed by a federal judge.
I would have lost my house, health coverage, everything so I reached out to my local Congressman for help. Thankfully, he managed to have my case file in front of a federal judge within ten days and I was finally awarded full disability in December of 2011.
Although all of this illness has practically bankrupted me I have tried to remain strong but it is becoming more and more difficult.
I still need to undergo reconstructive surgery and even with Medicare picking up most of the cost they will not cover my travel or hotel expenses.
I need a specific form of reconstructive surgery, as I am allergic to plastic and silicone and unable to have implants. Flap surgery requires muscles being cut and that would expedite my having to be in a wheelchair much quicker than I would like to be.
However, there is a one alternative for me called fat grafting and it is performed by a plastic surgeon in Miami. This would be best for me, as he would transfer fat instead of muscle from my abdomen and thighs to my chest.
I cannot express how important it is to me to feel whole again.
At the moment, my home is in need of repairs that I am unable to do myself anymore and I am unable to afford to pay someone while trying to live on disability income.
The house is 11 years old and in need of paint and sealant.
All of the bottoms of my kitchen cabinets have sunk and will collapse soon. They are in desperate need of repair and I would like to have pullouts installed in some of the base cabinets, as it is difficult to get things out of these cabinets with my multiple sclerosis.
I have applied for state assistance for food stamps and Medicaid but was turned down because I receive $2000 over the qualifying amount per year.
I have also applied for assistance with my health care insurance (COBRA), as it takes 59% of my monthly disability income.
One organization, called the Assistance Fund, will reimburse me up to $250 per month for health care insurance.
I have spoken with church pastors and although they understand my circumstances they are not in a position to help me financially.
My goal is to find a way to re-enter the workforce in some capacity to help me feel useful and I have looked into integrative nutrition training to become a health coach.
This would rebuild my self-esteem and self-confidence by enabling me to help others as well as myself.
This would also be something that I could do from home on a part-time or full-time basis -- whichever my health conditions would permit.
At the moment, my home is in need of repairs that I am no longer able to do myself and I am unable to afford to pay someone while trying to live on disability income.
The house is 11 years old and in need of paint and sealant. All of the bottoms of my kitchen cabinets have sunk and will collapse soon. They are in desperate need of repair. Costs would be:
House Prep (Pressure washing / Sealing of cracks and stucco / Prime and Paint labor and materials -- $1,100
Cabinet Repair -- $300
Pull out drawers and rails for four of the base cabinets -- $200
Integrative Nutrition Course - $5,000
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