Alice02

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About Alice02

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    Senior Bronze Member
  1. Hello everyone, I'm sorry I haven't been here for a while. Recently, I have been very busy going through extensive work training rehabilitation. Things are getting better for me. I am in the process of getting to a customer service internship in one of NYC hospital. I want all Sclero.org members to know that I always talk about how kind and extremely helpful you were to me when I was going through difficult times. Recently, I have been suffering from pain muscle pain in additional to terrible hot flashes. I appreciate your input. Warm hugs, Alice
  2. Hello everyone, I haven't been here for a while now. I just would like to ask if anyone has used carbon dioxide laser to remove calcinosis cuti. I have them all over and they just ruined my life in addition to Scleroderma. Thank you in advance for your input. Warm hugs, Alice
  3. Thank you Shelley, I appreciate your input. Warm hugs. Alice
  4. Hello everyone, I haven't been online recently. I lost one of my dearest friend and still going through grieving. I had surgery last September on my knee and removed most the calcinosis. Yet, now I'm having crucial pain on the same knee again. I heard that there is a lazer treatment that help remove calcinosis cutis. Does anyone here know anything about? Please let me know I appreciate your input. Much love, Alice
  5. Hello everyone, I was searching on the internet and found an interesting Japanese study on Probenecid therapy that has proved to help decrease Calcinosis cutis. And I just would like to know if any of you have heard of this therapy. Warm regards Alice
  6. Hi I can't agreed more with Catty, I too have calcinosis cutis for more than thirty years I lost count on how many surgeries I had over years. But, I did have surgery on two of them about several years, one on my arm, and the other one my leg they didn't grow back after surgery. I always dream if the same thing would happen on all of them. However, I have a lot of them on my both knees, and hips. I just had a very painful surgery on my left knee I am hoping every minute that they won't grow back again. And, yes most surgeons don't even want to operate on me to remove them. I am lucky that I have a dermatologist doctor for years, who never says no to me, and always helps me. He is wonderful, he just couldn't operate on my knee, because calcinosis cutis were too close to my knee cap. But he did send me to one of his colleagues. On this note, it is definitively a terrible thing. They didn't kill me, but they certainly destroyed my quality of life. I'm sorry to sound so negative. Much love, Alice
  7. Hi Nata, My heart go to you. I didn't have access to heath insurance for more than one year when I was waiting for disability benefit. I too get low grade fevers most the time, I was told is part of Scleroderma symptoms. Since my my body temperature is always normal during those low grade fevers. I just learned to cope with them, in fact I have them now. Much love, Alice
  8. Hello everyone, Thank you so much for your input, it means so much to me. I am feeling so much better now, and I have very little pain. Although I am still using the cane to walk, and it is kind hard especially I live alone. But hopefully in week I will be able to walk normal again. I actually started to feel better right after my surgeon removed stitches, I had so much drainage for more than a week. So I was right about that blood underneath was causing all that horrible pain. I told nurse practitioner at the hospital, but she didn't think so. As of result I had to suffer crucial for two weeks. And yes Shelley you are right that we do build up tolerances to pain medication I had to be on very high doses in order to get some relieve, and only last for couple hours. I had many surgeries as mentioned, and I never was scare of going in operation room, but now after this surgery I will not have another surgery again for very a long time. Much love, Alice
  9. Hi everyone, I just want to thank you all for being always there every time I need help. I appreciate. I had surgery on my knee September 9, 2009 and removed bunch of calcinosis cutis, I thought that it will ease the pain that I have been suffering for long time. Unfortunately, I now have crucial pain more than ever. My surgeon had to take out stitches too soon to let blood come out, we thought that will perhaps release the pressure and help ease pain I'm experiencing. Well It didn't, and I'm still in constant terrible pain. I had tried many different of pain medications. My surgeon does not think that the pain I have is from surgery. I had had these calcinosis cutis with Scleroderma for more than thirty years now, I used to get pain only when I have an infection. But now I'm so confused I don't why I'm having so pain now. Most the time I have go to the emergency room to get some relief. My rheumatologist thinks is all cause by Scleroderma, and prescribed more of pain killer for me. I am going to go to John Hopkins Hospital, but it will be a while before I get there. Thank you in advance for your input. Much love, Alice
  10. Hi everybody, I finally found a plastic surgeon in NY area who did agree to help me, and I just read some of impression listed MRI imaging report which I did not understand. So I thought of asking you, perhaps some of you have hear of them, instead of waiting until I see my doctor. And here they are: 1. Mild chondromalacia patella. 2. Horizontal tear of the body of the lateral meniscus 3. Small, complex medical popliteal cyst I know that I might sounded as if I lost my mind with this topic. But I am sure that all of you can related to how it feels when you are in so much pain and trying to understand every symptom you have. Warm regards, Alice
  11. Dear Jeannie, Thank you so much for your informative input I appreciate. And I really appreciate your sense of humor even more. Warm regards, Alice
  12. Hi everyone, I hope that all of you are managing to cope with this terrible disease that we all suffering from. I just want to say this perhaps some of you have some information for me that can help me understand it. I was not able to go to John Hopkins Hospital due the insurances issue, because they accept Medicare, but not the Medicaid and I cannot afford to pay for the other 20% that the Medicare does not cover. I also tried to buy the supplement insurance and I could not afford to buy that either. On different note, lately the skin around my mouth has gotten so tight that my lips bleed every time I go to see a dentist. Does anyone of you have any information on that? Thank you in advance for your input. Warm regards, Naima
  13. Hello everyone, I haven't been here for a while due to many ups and down with my health as most of you living with this terrible disease are familiar with. I am in process in arranging a visit to John Hopkins Hospital to see a surgeon who specializes in calcinosis cutis. Lately I have been experiencing serious symptoms of fibromyalgia and wondering if it is possible that I can develop fibromyalgia in addition to Scleroderma? I would I appreciate any information or experience any of you may have. Thank you in advance for your input on the subject, I appreciate it. Warm regards, Alice
  14. I hope everyone is well, or trying to cope with this terrible disease that we all suffering from. Does anyone here have any information on the latest treatment for calcinosis cuts. Your input is appreciated Much love Alice
  15. Hi Nina, I appreciate you taking the time to reply to my topic. I just came back today from one of those network that social security hired to help people with disability to get back to work. And I got so depressed, because the kind of jobs they have is something I can't do. I called social security and asked them if I'm allowed to find job on own and they said is fine is long as I send them all the information about my job. Alice