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Sandy... First, blessings. prayers, and a heap of love from me to you. No one should be forced to chose between being able to afford a meal or buying desperately needed drugs. Now. m'dear are you legible for Medicare? If so, you may then chose an HMO who provides your with meds as part of the plan. I joined Kaiser Permanente as soon as I was awarded my SSDI benefits (after a two year battle with Social Security). It's a trade off tho, since I have some "DECENT," and even a few BETTER than decent physicians, plus I've cheerfully received every drug I need to take (with a modest co-payment). If tests are needed, I get 'em with no quibble, the same thing with a specialist. I realize that not everyone is elegible for Medicare, however, if you're accepted as being disabled by the Federal Government in the "person" of SSDI, you SHOULD be eligible for Medicare benefits. Barb Mallut [log in to unmask] -----Original Message----- From: Sandra Norris <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Tuesday, September 26, 2000 2:17 AM Subject: STRUGGLING!! Good early morning list family, It is 3:11 early Tuesday morning and I am struggling with a few things...May I use your shoulder a bit? Many of you know I have recently moved into my own apartment. When I was packing things up readying my "stuff" to be moved I came across the video that my 2nd neurologist had made of me when I was finally diagnosed. When I unpacked I stuck the video in a closet. It was neither out of sight nor out of mind. I placed it in a closet that is a pantry to my kitchen and because I love to cook I open this pantry quite a bit. I have been in my apartment now 1 month and 8 days and I have been struggling with whether or not I wanted to watch it. I finally watched it this morning around 1:00 am. Having many mixed emotions, I am desperately trying to sort through them. You see, leaving my husband and embarking on an independent life has led me to a path of uncertainty. Struggling with the question in the back of my mind of just how much the pd has progressed....struggling whether I buy food today or I buy medicine today...struggling with my neuro about pain management. Being outraged over the unavailability of help for acquiring medicines. My local neurologist has referred me to my 2nd neurologist at the Bowman Gray/ Baptist Hospital at Wake Forest University. I feel as though I have been backed into a corner over the medication issue that all of us are having to struggle with. Well I have decided to come out of that corner fighting!!! Please family, listen with the passion that beats in your heart....We need to make an impact on Capital Hill. I shared with my local neuro the passion of my heart of "come hell or high water" I will be going to Capital Hill with a voice to be reckoned with. I am proposing to my neurologist that the media come into my home and document through word and film my life with medicines. Then I will go on a drug holiday (only if neuro approves). (Yes, I know what this will entail) It will be dangerous. While going through the holiday I will have the media document and film what I will look like without meds. No one and I mean No One should be faced with the questions Food today? Meds today? Family, do not get me wrong....I am blessed and thankful everyday for what I do have. Yesterday I did get word that I will have help with food. Still yet...drawing $736.00 a month disability and the cost of meds $620.87 does not leave much to live on. Before getting notification of help with food I was faced with 9 days without food. That would be dangerous to my health as well. Before I could get assistance I had to sign over my rights to the house and land that I jointly shared with my husband that I am now separated from. I can not have anything of value that could be sold to help with meds and food. Another thing. Hopefully there will be some valuable information gleaned from this drug holiday. Watching the film of my diagnosis was an eye opener. To document the progression of this disease since diagnosis will serve as valuable info for the pd community. I know there will be legal issues...emotional issues...spiritual issues....medical issues. I am working on the legalities...I am seeking counseling on both the spiritual and emotional aspects of this challenge...Having a stomach virus one year ago I could not keep pd meds down. I had to be hospitalized in critical care...feeding tube...catheter...using the sign language of the alphabet(shakily) so I could communicate after my jaw froze from rigidity and tremor. I will be going into this with eyes wide open. Because of my meds I can cook. I can walk two miles a day. I can pick up my neice and hold her and help chase away her hurts. This past Friday, because of my meds and my own wisdom of not eating anything with protein, I was able to dance for the first time in nearly 6 years. I mean from 9:30 pm to 1:00 am I cut a rug! Let me tell you, I wrote a whole new verse to the song "Let's Give Them Something to Talk About". I am very thankful... Without meds....I am a frozen vegetable..or better yet I will be a slab of cement that has already gone through the stages of drying and now allows the federal government to walk on me with blatant disregard. This wall of injustice being erected, brick-by-brick by the lack of prescription benefits is holding me back from living life with dignity. The buck is gonna stop here. If I have to tear the wall down brick-by-brick then I will. I refuse to be held back and I refuse to walk around the wall in denial of the sad state of affairs of Medicare. I have had my say...thnks once again for letting me vent...sorry it was so long....I am in the process of getting my ducks in a row. Please don't call the loony wagon. I have already fought and won that battle...much love...and admiration for those who are passionately continuing in your battle.... Keeping up the fight.... Sandy Norris 40/28/20 "Faith is the daring of the soul to go farther than it can see."