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Everything posted by miocean

  1. I have been getting a tendon friction rub in my left ankle off and on for quite a while now. My physical therapist treats it with ultra-sound and stretching and it goes away but then comes back. I have just weaned myself off prednisone under my doctors. supervision, but have had the rub while I was on it, too. I don't have any pain with it. My question is: are tendon friction rubs dangerous or harmful in any way or are they more of an inconvenience than anything else? Thanks in advance for your responses, you are all always so very helpful.
  2. Hi Barbara, I am so glad your tube is replaced and that you are happy with the new one. I hope everthing turns out well for you with the new one. I'm sorry you had such a painful experience though. I enjoy reading your blogs and look forward to the next one!
  3. Karen, I am sorry to hear about your Mom's passing and know you must be very sad at losing her, especially so suddenly. It really does put things in perspective. I'm glad you're feeling better and are back to posting. My thoughts are with you.
  4. I have white spots under my chin. One is a mark from a neck collar I had to wear after neck surgery and is most pronounced but the others have appeared recently. I am not on plaquenil. I saw my sclero specialist this week and she said they were dipigmentation because of the sclero and that I have them on my arms, too. I can't see them on my arms but they must be there. I am also pretty brown all over from the disease and I love the sun so I hope they don't get worse.
  5. It's interesting to me that this thread has come up at this time because I just found out in dialysis that I am Vitamin D deficient. They mentioned the parathyroid glands and will be giving me D with my treatment. I was surprised because I get a lot of sun, maybe it's because it is winter time and I'm not getting so much now. It's amazing how many people are deficient.
  6. Hi Barefut, I have been going to hand therapy for two years now. It has really helped keep my hands from curling. They are slightly bent and I can't make good fists. My left hand is worse than my right. I believe the therapy has prevented more damage to my hands. I go twice a week for over an hour. Part of the time is spent with a parafin dip and heat on my hands. Then there is a series of exercises that I do, some with putty, some with weights and others on machines. Then my therapist massages and stretches my hands. That sometimes is uncomfortable. Good luck with your hands. Miocean
  7. Hi everyone. It has been a while since I posted regarding my kidney transplant. I just found out yesterday that my donor was not approved because her kidneys are functioning at 50% instead of the needed 80%. Needless to say I am dissapointed. So it is back to square one, except I am now on two lists for kidneys, one in NJ and one in FL so hopefully something will come up. I had to have surgery this week to replace my catheter as it is infected. The worst part was getting stuck to get the IV in. It took4 tries and finally they used an infant's needle. I know many of you have the same problem with finding veins so I thought I'd pass it along.
  8. I went to a specialist at Thomas Jefferson and was very impressed with him. I forget his name, unfortunately. I opted to have my treatment done in New Brunswick, NJ as it is closer. The lenght of the drive can be very important, especially if something comes up like hospitalization. I am happy with my specialist in New Brunswich but would highly recommend Thomas Jefferson.
  9. I was an art teacher and my hands were always in water so they cracked in the winter. Someone recommended a cream and it really works! My husband has an outside job and has the same problem in the winter but if he uses the cream his fingers don't crack. You can find it in the drugstore by the medicated lotions. You may send me a Private Message if you want to know the brand name of it. Good luck!
  10. I get a massage once a week at my chiropractor. The new massage therapist uses hot stones and she also has a heated pad for her table. It is delicious! I think some of the reasons I don't have a lot of pain is due to the chiropractic and massage. Try it, it feels sooo good!
  11. I have been going to hand therapy for almost two years now. It has kept my hands from misforming. Although I can't say there has been tremendous improvement, my hands have not become worse. Good luck with the treatment for your carpal tunnel syndrome, I know many of the people at hand therapy have been treated for it.
  12. I see a specialist in scleroderma, Dr. Vivian Hsu in New Brunswick, New Jersey. She sees me 4 times a year. I don't have a local rheumatologist. I've been wondering whether I need one, so far this seems to be working okay. Originally, I also checked out my situation at Thomas Jefferson in Philadelphia, but decided on New Brunswick as it is closer to home.
  13. I have a handicapped tag for my car. When I first got sick I used it a lot. Now I use it when I need to, like when I am exhausted from dialysis, or if there is no other parking available. I feel guilty sometimes, because there doesn't look like anything is wrong with me.
  14. I, too, suffer from fatigue. It is very frustrating and sometimes I wonder if it is fatigue or depression. I have more energy now than I did when I initially came down with sclero but not like my old self. I find it an effort sometimes to do daily tasks and find myself laying down every once in a while. My sclero specialist says that one of the biggest problems is fatigue.
  15. Congratulations Lisa! You deserve it after all your efforts. Best wishes!
  16. I was on oxygen for 4 months after I was diagnosed and hospitalized. I was on it 24/7, doctors. orders. I had a unit with a really long hose here in the house and a portable Helios unit to take outside so I didn't have to use a tank. I felt like a dog on a leash in the house, I would get caught on things and it was a pain. I was so happy to get outside I didn't mind the portable unit and didn't notice anyone staring at me. But it really helped. My PFT got better so I don't need it anymore.
  17. My mouth got smaller when I first came down with the disease but it is normal size again. I do have vertical lines around my mouth, it almost looks like I was a smoker. My skin is getting softer for which I am glad.
  18. I initially lost 30 lbs. when I was in the hospital and diagnosed with kidney failure and scleroderma. I have managed to gain it all back and feel like I keep on gaining. I was running 3-5 miles at a clip and now can barely walk 3 miles so what muscle I had has turned to fat. I am on prednisone but only 2 mgs. alternated with 1 mg every day so I don't think that is causing the weight gain. I have had trouble with my weight all my life...figures, I get a disease that causes some people to lose weight and not me!
  19. I get a flu shot every year and it has never made me sick. At first I got one because I worked with kids and now I get one because my immune system is so low. I get one in dialysis every year. I was told after my kidney transplant even my husband should get one. I know there is a lot of controversy about vaccines but I haven't been sick since I received the shots. I think they are worth it.
  20. I just wanted to let you know that I heard from the Mayo clinic this week and I have been approved for the kidney transplant! Now my donor needs to be tested and if all goes well we will do the transplant after the New Year. :D
  21. My kidneys failed rather suddenly. I had been sick for a few months and had just received the diagnosis of scleroderma. My legs were very swollen and my urine was foamy. I started throwing up and could hardly walk. I went in the hospital and when they took me down for a CATscan I stopped breathing, my heart stopped and my kidneys failed. So I didn't go through any stages of kidney failure. Try to keep your kidneys going because dialysis is no fun. I go before the committee today for approval for the transplant.
  22. I had posted on the other site about going to FL for evaluation for a kidney transplant in Sept. I wanted to wait until I was approved to let you know how everything went but after almost a month I am still not approved. They tested me for seven days and were very thorough, and, I thought, very organized. However they are still missing test results and information they were supposed to gather. It is very frustrating! I am trying to be patient but dialysis is difficult. I have a donor so it is just a matter of going through the steps to get it all done. But the steps are harder to get through than I thought they would be. Thanks for listening.
  23. Hi everyone! I am trying to learn how to use this forum. I can't seem to change the font color. Did it work? Thanks to Lisa for all her help so far.
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