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LoriNC

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About LoriNC

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  1. Rosa, I have had them too and found the nitrocream applied 3 times daily along teh fingers with the ulcers and at the webs of my fingers has cleared them up. My rheumatologist dicated that if the nitro cream did not work Viagra was probably the next step. She said insurance usually balks at viagra, but eventually caves after other treatments have failed. I also apply Oover the counter "neosporin + pain" ontop of teh ulcers for some relief Hang in there Lori
  2. Helen, I also have diffuse and significant curling - unfortunatly all the information that I have received from my OT,PT and rheumatologist is that the hand therapy and splints will slow the envitable and the drugs may relieve some of the skin tightening and underlying fibrosis.... Not a rrosy picture, but I cling to the fact that evryone's body is different and maybe I will gt improvement or hopefully a complete reversal. Positive thoughts, positive actions and we may be different than the norm! Lori
  3. Ann, Funny you should mention cholesterol, i asked my doctor about it - my number since being diagnosed have from 130 to 215. i was flipping out when he gave me the numbers, asked him if it was connected...He basically said who know - he says he treats my symptoms as the arise and figures anything is possible and all changes in my symptoms, blood # should are reviewed...bottom line he told me not to worry, but everyone is different. personally I think my rise in cholestorol #'s are directly related to the changes sclero has forced on me - lifestyle, food and environment. lori
  4. My greatest invention for improving my daily lifr - my 13 year old son - I call him fingers. I bought cheap intercoms from an electronics store and installed in the upstairs and garage, that way my 13yr old fingers re readily available. I use the good grips tableware as I cannot hold regular silverware. I use an electronic toothbrush that has a large handle easy to hold base My mother made me mitts in a simialr shape of oven mitts to keep my hands warms and safe outdoors - my fingers have curled so much that normal gloves just don't cut it. Cur styrofoam - really thick to fit around washing machine knobs so I canturn. Purchased corel unbreakable plates, because they are lighter than my pottery one to handle. Down comforter with fluffy pillows to make sleeping easy and I only need one blanket and can "grasp" better. Fluffy pillows because I deserve it! Installed soap and shampoo dispensers similair to ones found in athletic clubs My husband built ip our couch by adding 4inch blocks to the legs - wow that one was great - I felt like a regular person getting up easily and with grace again! I could go on forever!!!!! Thanks for starting this thread! Lori
  5. Heather, When I was placed on cellcept it was with the intention of going to 3G if my body tolerated cellcept. Lori
  6. Gwen, I understand your concern that your condition may worsen while you wait for the drug to take effect, I felt exactly the same way. I tried really hard not to focus on it(ha ! Ha!), at least daily I figure out how long I had been on cellcept. No real advice here, other than I was able to take that daily concern and turn it into a time of personal meditation..... Initially I was put on cellcept to try to stop or slow the aggresive progression of my sclero. I developed mild lung in involvement two months into the drug and 7 months later my lungs have stabilized with no scar tissue and minimal inflammation. Recently I think there has been some reversal of the skin involvement, but it has a really long way to go and am unsure if it really is working. Evert case is different....Earlier in the month I saw my rheumatologist and asked if I should change from cellcept, and if so what drugs would be next. She did not want to change, but indicated there are other options whcih may include oral ot IV cytoxan. I hope the cellcept begins to wok its magic soon and with good results! Lori
  7. Janey, I can tell you have been on a roller coaster but....Your husbands interest and desire to be there for you seems to be the highest point on your roller coaster ride. Give your hubby a great big hug for me!!!! Lori
  8. Thanks, yes it is ahuge relief and the best present my family will receive this year! Patty and memeto2, I have digital contractures with skin involvement up to my shoulders, feet, thighs and calves. Along with mild lung involvement. I have been sick since April 05 - I quit work March 06. What a sad time that was! I have to believe, My doctors support in her records and recommendation were key to my approval, as well as my detailed answers on the form itself. I had my husband type in excrutiating detail how difficult evryday tasks are. For example, I included the exact way I have to manipulate my world to get the toothpaste on my toothbrush. I included details about how every meal is fixed for me and that when I have to be alone for the day my food is left out on trays and I am limited to food choices that can remain at room temperature. Lori
  9. Hi All, There is usually a lot of questioms regarding disability approval so I wanted to share that I applied in september and was approved ttoday!!!!!!!!!!! What a relief. Now I can begin the maze of medicare and prescription drug coverage. Wishing all who try for disability the swift process that I experienced! Loi
  10. Irene, I am so sorry to hear you are having so much pain in your shoulders. When my skin thickened on my hands I experienced puffiness and sensitivity to touch, howevr when it tighten on my forarms none of that was noticeable. The biggest symptom I have noticed over large muscle areas such as the thighs was ITCHING!!!!!! Goes to show ya that every Scleroderma case is different. It is a good thing you are seeing your rheumatologist today! Lori
  11. My rheumatologist gave me nitro glcerin cream to rub in between my fingers, near the ulcer, around knuckles the feel like one is developing, and on my wrists. She also told me to apply neosporin to the ulcers. Has anyone done that? Does it work? Has anyone used nitro cream? if so how many times a day did you apply? I asked about viagra and the Dr. said the insurance company will be more likely to appprove if we show we tried the traditional medicine first. Thanks Lori
  12. Sherill, Your post gives me hope that my hands might become a bit more useful. If you could post pctures that would be great. I rarely meet people with extensive hand involvement early in the course of the disease. Are you on any immunosuppresants? Thanks Lori
  13. Irene, Your desription of the involvement of your hands and diagnosis of carpal is just like my history. I wor hand splints evry night for 2 years and wore them all day while at work - really hard to type but you get used to it. When I only had carpal tunnel I reaped great benefits from hand therapy. The best thing to do is to religously perform your excercises and wear your splints. Once the extensive swelling started I started on the adventure of diagnosis and 3 months later Scleroderma was diagnosed. I have diffuse scleroderma nd in the words of my rheumatologist - It is marching along faster than a speeding bullet. I continued hand therapy until my skin became so tiight that I have hands in the form of a claw. One of the most important things I learned from my therapist was to protect the webbing between my thumb and fingers. if your hands become as involved as mine the webbing being partially moveable allows me to "pinch" items between my thumb and index fingers. Best of luck with your therapy. Lori
  14. memeto2, I use a pain management clinic and they have worked wonders. Find apecialist, even if you have to drive a bit. A specialist xan support your disability case and may improve the odds. The key I hve found with disability is to ensue your Doctors notes are detailed enough and have the actual pharse in the " patient is disbaled" I think ss does not kick in until 6 months after you quit. does your company provide short term disability - sometimes that will buy you 90 days of reduced income. The difficult part of the disbility approval process is that it takes so LONG!, however once approved you get back payment starting at the 6 month. Lori
  15. Jackie, I used a parafin wax a lot last year and it worked beautifully. This year however my skin has progessed and is much tighter and more waxy looking so now I use bag balm on my knuckles and at night I cover my hands with cotton socks. I was given a medication to improve circulationwhen my knuckles started cracking, the name escapes me. If you would like the name private message me and I will have my husband dig out the prescription bottle. Lori
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