Wednesday, 11 January 2017

Life Destroyed by Neuropathy


Monday's Tale

Okay, if you also wonder about this one...how can so much tragedy drop on one person's head...and then think...'only in America' and finally feel so uncomfortable that you come to the conclusion that...'it just can't be true'...visit the webpage and read the comments on this post from other people with similar stories (see link below the post). I'm just grateful I live in a country where I don't have to worry about the cost of my health, or having a roof over my head!


Life Destroyed by Neuropathy
Ed's story

In February of 2004 I was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), as well as severe Type II Diabetes. To cope with the extreme chronic pain I was put on powerful narcotics but as time went on my body became acclimated to the drugs and I had to take higher doses or ever more powerful narcotics. Ultimately I was taking large doses of morphine 3 times a day. In a drug induced fog, unable to think clearly, I helplessly watched as the business I worked so hard to build began to crumble around me. Within 3 years everything was gone and my medical bills were enormous. By August of 2007 I was destitute and had no income, assets, investments or savings left. With mounting unpaid bills, I received an eviction notice in December of 2007. That was when I fell down the front steps of my house, injuring my back, and became immobilized for several months. My weight plunged by 40 pounds in only 2 months. I was emaciated and so frail that I couldn’t even walk.

In February of 2008, two weeks before I was to be evicted from my home, my closest friends and my sister gathered at my house. They packed what little of my belongings they could and moved me to Charleston SC to live with my sister. She immediately arranged an appointment with a new doctor in Charleston. He took me off the narcotics since so many of the sensory nerves in my legs (the initial source of my pain) had already been destroyed that I could take a new drug called Lyrica to help control the remaining pain. In order to be effective though, I have to take 3 times the recommended dosage. Because of this I suffer from many enhanced side effects of the drug, in addition to the disease. Besides the chronic pain, I am bedeviled with memory loss, an inability to concentrate, dizziness, balance problems, chronic somnolence, chronic fatigue, chronic weakness and insomnia.

The loss of sensation in my feet allowed a small blister on my foot to go undetected. It became infected, causing massive blood poisoning in my leg. I was put in the hospital for 3 days in October 2008 where I received constant IVs of antibiotics. The wound itself failed to heal and I struggled with it for over a year. I now have almost no feeling below the waist, except for the constant pain. The loss of sensation has caused additional problems with bladder control, bowel movements and impotence.

Since late October 2009 I have had three major attacks from the CIDP that portend serious complications in the immediate future. The first attack landed me in the ER for fear of having a heart attack, the second occurred in late November in the middle of a doctor’s appointment where it was also feared I might be having a heart attack and the third attack occurred just a few days ago here at home. Each event has been more severe than the previous and the effects have been longer lasting, covering increasingly more areas of my body. The disease has now spread to my arms, hands, shoulders, neck, chest and middle back, causing me once again to need narcotics to control the pain. The disease has also begun to affect my motor nerves, causing severe muscle weakness and lack of fine motor control, most evident on the left side of my body and in particular in my left hand where the muscles are atrophying and I no longer have the strength or ability to grip a fork or knife in it. As such, I have to have someone cut up my steaks or other meats for me.

In June of 2009, my sister faced eviction possible herself and I had no place to go. Fortunately a friend offered me a spare room in his home. He and his wife have been supporting me entirely since then, paying for my food, other medications etc. He is disabled himself and his wife doesn’t earn very much in her job. The additional cost of food, the increased electricity cost, the cost of my medications, and the cost of the supplies to monitor my diabetes and give myself injections are a huge drain on their own finances.

I cannot afford the medications required to treat my illnesses. It is only because of the generosity of my friends, the low prescription prices at Wal-Mart, and the benevolence of Pfizer and its Connection to Care program that I am able to obtain them. My doctor also provides me with free samples of the insulin I need to treat my diabetes. Without the help from my doctor and Pfizer, those two drugs alone would cost over $900 a month.

I applied for Social Security disability benefits through the law offices of Binder & Binder in March of 2008. Both my initial application and appeal were rejected by the SSA and my lawyers requested a hearing before an Administrative Law Judge. I was told that the judge reviewed my case and “informally” remanded the case back to the SSA for reconsideration. The SSA again rejected the application, sending it back to the judge. I finally had the hearing about 2 weeks ago but the judge has not rendered a decision and instead has ordered a Consulting Examination before he does so. I do not have a date yet for that exam.

The SSA claimed that I was not disabled at any time in 2008. How they came to this conclusion, given I was flat on my back for the first several months of 2008, is beyond me. If anything, it was probably due to the fact that my first doctor in Charleston was a very young intern who lacked the depth and breadth of experience to understand and properly treat my condition. After seeing this intern for a year, I switched to a much older and more experienced doctor that specializes in conditions like mine. This doctor was excellent and could fully appreciate my condition. Since moving in June of 2009, I had to begin seeing another new doctor. He was recommended by the second doctor and appears to be equally qualified to properly assess my condition.

I appear fine on the outside, with little visible impairment other than needing a cane for balance and the inability to walk very far. On the inside my body is ravaged by the disease and racked with pain. Being burdened with over overwhelming debt, unable even to afford to file for bankruptcy, barraged by calls and letters from collection agencies and lawyers, and the loss of everyone and everything I knew prior to moving to Charleston, has devastated me mentally and emotionally. I have suffered from acute major depression since the earliest days of my illness. The depression has left me in an inescapable sea of darkness in which I confine myself to my one small room, wishing the world would just leave me alone.

I am terrified that the judge might reject my application for benefits. There is no help out there for someone like me, a single, white, 51 year old man. There is nowhere else to turn. I am destitute, seriously ill and alone. What will happen to me? Will I end up out on the street, one of the homeless, only to die from the very illness that the SSA said was not disabling enough? As much as I fear rejection of my application, I cannot continue to rely on the kindness of my friends to support me.

Regardless of the outcome, a conclusive decision on my case must be made. I am just incredibly fearful of that decision and think I would rather cease all medical care, thus encouraging the end that is to come, than to have to live without disability benefits.

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