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Joe

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About Joe

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  1. I have a parafin wax machine. I just put my hands in the wax for about 60 seconds and lie down for about 5 minutes and the warmth just bakes deep into my hands. The releif is so awesome I cannot express how much it helps me. It keeps your skin softer (as much as it can be) and it did help with the itching somewhat. If the cold gives you constant pain, this will give you temporary bliss. My rheumatologist advised me about it initially. Hope this helps... Joe
  2. Hang in there Sam. I tried everything I could think of for my itching and even got a prescription of steroid cream but it did not help. A topical Lidocain might be able to help the pain. I am past the itching phase now so it may not be a permanent thing. One thing to think about is if you get enough sleep. If you are always up and can't sleep, it keeps you run down and stressed out. Your Dr should be able to prescribe a moderate pain medication or other sleep aid. It has really helped me out. Joe
  3. Jefa, Thanks for the detailed information. I am sure I had ARF. My Nerfrologist gave me the 4000 mg sodium limit but I am way under that on purpose. He said my first symptom of too much sodium for my kidneys to handle would be swolen ankles and feet for several days but I have not had any issues. I would bet I am averaging 1,500 mg of sodium or less daily. 95% of everything I eat is home cooked. I am coping with it and seem to be stable. Joe
  4. I am already taking BP meds to open the blood vessels. I am going back to the wound care facility tomorrow. I am on a mission to get this healed and I will share all the details as I go through it. The wound doesn't look much different but I do believe the Panafil is softening the scar tissue. Tomorrow I expect that the Dr. at the wound care center will scrape the wound with a scalpel and I am not looking forward to that experience. I have had it wrapped with a knuckle bandage for a full week now 24/7 with cleaning every morning. It's been more painful this week. I am positive the Nitro Cream has prevented any new ulcers. It really opens the blood supply to my hands. I'll post more tomorrow.
  5. I am trying to get this single large digital ulcer on my left middle finger healed. I have had mine for several months now. I should have gone to a wound care facility earlier but I have now. The ulcer is about 3/4" wide and 1/4" long. It is not infected. The skin is red around the wound and has a rolled look around the edges. The center is depressed about a 1/4" and white and has hardened into scar tissue. The wound care center tried to scrape the hard center with a scalpel but it was too hard. So, daily, she has me clense it with saline solution then put zinc oxide around the wound and Panafil (green) ointment in the wound and then place a small foam pad on and wrap it per every 24 hours. This will last for a week and is suppsoed to debride the wound of scar tissue so it can heal with some ointment that comes next. I don't seem to be having any more ulcer issues on my other knuckes since I started using the Nitro Bid 2% ointment to increase blood flow but this one has just never gone away. I am looking for information from others that have or have had ulcers and exactly what worked to allow them to heal up. The Dr at the wound care center is researching Scleroderma this week until I return so the fact that she does not have much knowledge about this disease is concerning... If you can, please share your successes and failures so we can benefit from your experiences. I would very much appreciate the input.... Thanks, Joe
  6. The spoon article hit home for me. I was quite moved. Thank you... Joe
  7. Joe

    Trigger

    Thanks for the info everyone...I am sure there are triggers but I am also sure it is different for everyone. I think Genetics plays a role also. I found a distant cousin of mine also has it. I read that there is a high prevalence of SSc in certain Indian tribes too. Joe
  8. When I go to work, I put hand warmers in my pockets. They really last a long time and are fairly inexpensive. I also have a good space heater in my office at work. It cranks the heat almost too hot, just the way I like it. I bought a truck with heated seats. They are tremendously beneficial in winter. I wish I could have gotten a heated steering wheel. Small things like this add up and help manage this dread situation... Joe
  9. I strongly suggest that you have your Dr. prescribe Nitro Bid 2% ointment. Your hands turn white because your blood vessels clamp down and reduce blood flow. The Nitro paste opens up youe blood vessels wide open in a few minutes and it seems to last for 4 or more hours for me. It will reduce any pain you have due to the cold. Also, get yourself some good mittens. Finger gloves just don't do it. I have been able to snow blow the drive with the paste and good mittens here in Colorado with nary a problem. Hope this helps. Joe
  10. Joe

    Trigger

    Two weeks before my first symptoms of Scleroderma, I tried Lunesta as a sleep aid for insomnia. I seemed to have a reaction to Lunesta. I remember waking up and all my muscles were rigid and my wrists were bent and my chin was pushed hard into my chest. It was not normal and quite shocking. I stopped right away but right after that my first symptoms appeared and progressed to eventual Kidney failure and Systemic Scleroderma. I feel that Lunesta was the trigger for my disease. This is obviously a personal observation and can't be proved one way or the other. I have read that there are known triggers for Scleroderma. I was wondering if anyone else tried Lunesta or Ambien prior to first symptoms of if you think something else was a trigger? Joe
  11. I am 45 years old. I live near Denver, Colorado. I have been married to my awesome wife for 17 years. We have an 11 year old daughter who we adopted at 3 years old. She is doing really great now. We have two black labrador retrievers. One is a rescue dog. He was all skin and bones and scabs all over and had been at the shelter for 2 months and was just about to be put down. Got him from a rescue organization. He is just an awsome dog and is finally all fattened up. I work for a large defense contractor and have been employed there for 24 years. I am a Sr. Computer Systems Analyst. The job is high stress but I love it. I was pretty athletic until about a year ago. I have Systemic Scleroderma with Kidney involvement. My hands, arms, calves are affected. My gastro is also affected. I seem to have reached a plateau and have actually seen a reversal, a softening in my arms and hope it continues. I found that a distant cousin on my mom's side also had Scleroderma so I think it is related to genetics. Joe
  12. I have kidney involvement. Almost lost them about 10 months ago. Hands swelled up 2 months earlier and the Dr. didn't have a clue. I started throwing up for days. Thought I had the flu. Had jaundice and eyes turned yellow. Ended up in the ER with 250/160 BP and it just trashed my kidneys. Nearly had a heart attack. I think the fact that I used to run 3 miles, twice a week saved me there. I was in the step down unit for 3 weeks trying to get my BP under control. Lost 35 Lbs. My creatinine level was 4.2 at it's worst. I was put on Altace, Benecar and Procardia. Altace, an ace inhibitor is the key drug to heal your kidneys after this kind of damage. My creatinine level is down to 1.7 now. Normal is .4 to 1.4 I think. If you have kidney involvement and are not on Altace, I would start some research and talk to a good Nefro. I am limited to 4000mg of sodium per day and watch foods with high potassium and phosphates. Keeping your sodium, potassium and phosphates down for the rest of your life is key to survival. It stinks basically. Home cooking is a requirement at this stage. Hope this helps you, Joe
  13. I had serious problems with my hands being absolutely frozen in an 80 degree room. I have severe hardening on my arms and hands. My hands were so cold, they just hurt all the time. I was absolutely miserable. I also started getting ulcers on my knuckles. I would get a little white dot or line on my knuckle and then it would turn into a sore that never heals. I started using the Nitro Bid 2% cream and it really works for me. I use it two times a day on my hands and arms from the elbows down. My hands are no longer cold and it works in a couple of minutes. The white dots on two knuckles never turned into ulcers and a month after using it regularly, I have actually seen about 4 inches of softening on my arms. Not sure if it is a coincidence. I have had scleroderma and Raynauds for 1 year. If you use too much you get a headache and you could get dizzy or pass out I am told but my Dr. says if that happens, wiping it off with a damp cloth immediately resolves that. I feel if you have my symptoms and use it regularly 2-3 times a day, it will help you. Joe
  14. Joe

    Insomnia

    I've had this disease for a year now and have significant pain and discomfort. I nearly lost both Kidneys and they are limping along now at 50%. I have had insomnia for years also. My Dr. prescribed a mild prescription pain med. I take two before bed and 90 minutes later I am out for the night. I have absolutely no groggy feelings in the morning and feel better. I definately would not take them during the day. My BP is down too because I get more rest. I tried Lunesta and Ambien and was not happy with either, If you have pain, this could be a solution. I am sure there could be a dependency issue but I am at the point where I don't really care . However, I have not felt a depencency issue if I skip an evening. Anyway, that's my two cents. It really works for me.
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