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About SoulDancer

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  1. SoulDancer

    Rheumatologist Answers.

    Dimarzio, I'm so sorry about the responses you've gotten from your doctor. I've heard the same thing about the limited not turning to diffuse and also being unlikely to kill me. I get the feeling my doctor thinks I'm a bit of a simpleton. However, since I am just starting out with my baseline testing I am stuck with him until I get it all sorted. Hopefully you will be able to find better care soon. I'll be thinking of you. SoulDancer <><
  2. SoulDancer

    Skin in Shower.

    Thank you for your reply Sweet. The links were helpful. Can you tell me if this issue has been sclero related for you and what has helped the most to control the symptoms of dry skin/sloughing skin? Thanks! SoulDancer <><
  3. SoulDancer

    Skin in Shower.

    Thank you for the links and sound advice. I think you're right that it's easy to wonder if everything is connected to what's happening with this disease. It might be time to schedule another appointment with my general practitioner. SoulDancer <>
  4. @judyt: I'm not sure you'll see this but if you do . . . How did they determine the organ prolapse was the result of limited scleroderma? I'm curious because I too have had prolapse of internal organs. (bladder, uterus) I have had them repaired but it was unusual. And I worry about prolapse of "other" areas. This was not something I mentioned to my doctor during the intake because it seemed irrelevant. Is this something I will need to keep an eye on in the future? SoulDancer <><
  5. SoulDancer

    Skin in Shower.

    Ok, I apologize if this is a TMI (too much information) post and if it is please feel free to skip it or the moderators can modify it. However, I don't really know where else to ask this. Here goes: The last few months I have reduced my showering to 1 time per week or less because when I do shower it feels like the entire top layer of my skin comes off. When I get out of the shower my skin is on fire. I am red, stinging and there are little bumps on my skin. Oh and it itches! On the floor of the shower are large flakes which used to be the top layer of my skin. I don't use soap/bodywash and the shampoo/conditioner I use are super gentle. The first time it happened I thought it was my bath products so I stopped using them but it still happened. Then I reduced the number of times I bathed/showered and it still isn't helping. Now when I get out of the shower I slather myself with seaberry oil and then coconut oil. The next day the skin looks ok but it's dry and still itches in places. Is this a symptom of Sclero? of something else? It's becoming a real problem. I dread taking a shower or bath. It's painful. Any advice or anyone have something similar? Thanks in advance. SoulDancer <><
  6. SoulDancer

    Tips to conquer fatigue?

    Hi mammabear, Sorry to hear the fatigue is knocking you out. While I don't have any advice on how to combat the fatigue, i certainly can relate. One of the symptoms that sent me to my doctor was the overwhelming fatigue that was causing me to miss out on my own life. At one point I was sleeping/resting up to 16 hours a day. I find for me that it comes and goes. While I always have some tiredness/fatigue and it gets worse as the day goes on there are some days that are better than others. So far I take each day as it comes, participate when I can and rest when I need to. I wish I could offer better advice. Hopefully others will be of service. Be good to yourself. SoulDancer <><
  7. Also wanted to add that my blood tests showed negative for Anti-Scl-70 IgG. I believe this is the main reason the Dr. believes it is limited vs. diffuse. So to recap: +ANA +Anti-CENP +Rheumatoid Factor IgM -Anti-Scl-70 Hope that helps. SoulDancer <><
  8. @Dimarzio I'm so sorry to hear your symptoms have been giving you such trouble. I believe my doctors gave their diagnosis based on my symptoms and blood tests. My skin involvement is so far limited to my hands (swelling in both hands but not all the time, slight hardening on distal tips of index finger of right hand and left middle finger), red dots on hands and face, raynaud's (leading to damage in the capillaries on nailbeds). I also have joint swelling and pain, fatigue, dry skin/mouth/etc., carpal tunnel, GI issues, and various other things which have sent me to other doctors over the years. As for the blood tests: + ANA titer 1:5120 with Centromere pattern +Anti-CENP IgG +Rheumatoid Factor IgM I am definitely trying to live as healthy as I can. Right now I'm going through the paces of getting all the baseline testing to see where I'm starting from so I can see how things are (or aren't) progressing. I'm sorry I don't have much info for you other than my own personal experience of what I've been told/how I've been diagnosed but I know the people here can probably direct you to more resources. Many Blessings, SoulDancer <><
  9. Thank you so much for your quick reply! I received a diagnosis of limited systemic sclerosis last week (so I'm not sure I can get a referral to an expert) and I am currently being scheduled for lung function tests, however since receiving my diagnosis it made me wonder about the previous supplements other doctors have put me on. I am under the care of my ob/gyn for hormonal imbalance (I'm getting old) and currently take up to 30 supplements daily including the bone collagen. I placed a call to the doctor but she is out of town and can't get back to me. Soooo . . . I decided to ask Dr. Google and you lovely people. I'm kinda feeling a bit overwhelmed. Lots of information and yet not a lot of answers. So weird. So happy I found this place. I'm loving that gal in the videos. Feel free to throw any info you think would be helpful my way. SoulDancer <><
  10. Hello everyone, I was wondering if anyone had any experience with drinkable collagen supplements or knew if they were considered safe to use if one has a diagnosis of limited scleroderma? It's the same stuff that's found in bone broth and it's supposed to be good for healing the gut. I have searched online but I can't seem to find anything. I would be grateful for any info or links anyone could provide. Thanks! SoulDancer <><