I was diagnosed with hepatitis non-a non-b in 1988, before they even had a name for it. Either I wasn't told how serious this was or I didn't hear them. In 1989, I got very ill and had to quit working as an equipment maintenance mechanic. With no insurance available to me, I got a Mass. Health Card from Social Security but, unfortunately, they took it away after a few months. They said that I didn't meet their guidelines, they implied that I wasn't dying fast enough. I had just gotten a biopsy (wide awake, not even an aspirin for pain, or a crummy valium for nerves) and an endeoscopy (again, awake). I couldn't understand why they would deny me medical help with the shape I was in! I went untreated. In August, 1994 I caught what I thought was a bad flu bug. It lasted the entire winter. I literally couldn't get out of bed unassisted. By March, my hands and feet were numb. The nausea was so bad I couldn't even keep water down and I suffered from a horrible itch that I couldn't 'get'. That was almost as bad as the pain in my guts. I was always cold, couldn't remember day-to-day events, and my period hadn't come in over a year. Too tired to get up, and over-taxed from lack of sleep, I was miserable. One morning I noticed my hands and feet were extremely swollen and my stomach was extended. I looked ten months pregnant and weighed 92 lbs. A poster child for some third world country, it finally hit me... I was dying! And I was scared. I went to my doctor and he put me on diuretics and potassium. He also suggested that I give ol' Social Security another shot, as I could barely afford the medications, let alone pay for the treatment/transplant) I'd be needing soon. REAL SOON! I applied again to Social Security and finally in August '95 I received a Mass. Health Card. My doctor referred me to another doctor, who in turn got me hooked up with New England Medical. Evidently, there was nothing left for me to do. The word "transplant" scared me, but coming from these doctor's lips, I was somehow relieved! Could there be hope for me yet? Hope was slowly taking over the anger, frustration and utter despair that was raking me. Could it really buy me enough time for the researchers to get a handle on this disease? On September 2, 1995 I received a letter from Social Security Administration. It read: "Based on your health problems you do *not* qualify for benefits on this claim. This is because you are not disabled under our rules." I went to a lawyer that specializes in Social Security claims immediately. I probably could have been on interferon years ago, but they took away my health card. Maybe if they hadn't, it wouldn't have come to this. I could have *tried*, at least I would've had a *chance* at beating this beast, this dragon, this hepatitis c. In Oct.'95, I took out my third appeal to the Soc. Sec. Admin. I had included all the hep/gods documentation, diagnoses of "end-stage" liver disease and my placement on the transplant list as a status 3. On February 2, 1996, I received the findings. The statement read, "Although you have some discomfort, your condition is not disabling according to Social Security standards, and does not prevent you from working." I was horrified! I had contributed to S.S.I. for 28 years, and in my time of need, it was not available to me! I enlisted the entire HEPV-L list and we wrote letters to politicians, newspapers, and the entire media. On Feb.22, the story had hit the newspapers and a week later the follow up article gave the good news that the decision had been reversed. They were quoted as saying it has all been a big mistake and they were sorry. I now receive all SSDI benefits. :) My husband, Bud, is a saint. He's filled with support and possesses the kind of love that is everlasting. In some ways, I think it's harder for spouses to handle this disease. I can't imagine watching someone I love slowly deteriorate... it must be a burden. My best friend Steve, who goes through this nightmare with me everyday of his life, is right there for me, too. My mother is another story, though. When I called her in September, '95, to tell her what had happened, she hung the phone up on me. The couple of times I have talked to her since, has been painful. I think she has a problem accepting my fate. I guess she thinks I'm 'looking for attention' because she thinks I'm 'making all of this up', or that I'm "doing this" to punish her. I don't know, but it hurts. I'm heartbroken that she won't talk to me, or have anything to do with me. I need my mother now, and I miss her terribly. I miss the old Jeanne, too. Loud, fun loving and extremely active. She worked hard and pla! yed hard. She was a nice person. If it sounds like I'm talking of myself in the past tense, I am. That part of my life is gone forever, never to be seen again. Now I'm a totally new person, with an entirely new attitude and outlook. I look at life with new perspectives and priorities. As it stands now, I'm listed as a status 3 on the transplant list at New England Medical Center (Tufts), waiting for my new liver (my friends at the HEPV-L named it Miz Scarlette O'Lily), and my renewed life to begin. The waiting seems endless, the days and nights drag on... and the hours tick by...
