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Posts posted by Trinity

  1. Thank you all for the welcome. I definitely want an answer about my diagnosis before I go forward. The thought of amputation was more to keep me from losing more years to pain, more than any immediate concerns. I spoke to a leader of the support group I recently joined and she is going to help me get an appointment with a doctor who knows the disease, even if he is not classified an expert. She will also help me know what to ask. I am really glad I found this site because I was ignorant to just how ignorant I was. I look forward to learning more, meeting people, and sharing my journey here.



  2. Hi Shelley,

    Truth is I'm not 100% sure of my own diagnosis. The doctors never used the words localized or systemic. I didn't even know there were so many categories within the two. It wasn't until yesterday that I'd had a doctor suggest my vasculitis issues might be connected. I just thought the ulcers were connected to weakened and damaged skin. I have never had Raynaud's. I've never really been to a doctor who knows scleroderma before. Yesterday's doctor has experience with scleroderma ulcers, but I don't know how much she knows about the disease overall. She may only be assuming my arteries are affected. I will try and look at the definitions here and will be careful about future claims. It's a bit scary to realize it may be a form of systemic. I need to learn more as this doctor also believes it's in my best interest to amputate both feet. I need to be sure I understand the disease before taking such a drastic step. Thank you for asking for clarification. It lets me know I need to clarify. I just don't know where to start.


  3. Hi Quiltfairy,


    I only recently learned about peer support when my counselor suggested I might be interested in doing it. I didn't do the training, but I imagine if I was eligible this means these people have been sick in some way themselves, but have done well in their own recovery so they want to help encourage others in theirs. I think it's natural for people to try and find some way to relate. Unfortunately this sometimes comes out wrong.


    I have actually had the opposite statements upset me. I constantly hear "I start to feel bad about what's going on in my life, but then I think about you and feel so much better." I have been told by so many different people that my life is so horrible it robs other people of the right to complain. When I finally met with other women who were diagnosed with scleroderma I thought I wouldn't have to go through it again, but after hearing my circumstances sure enough one of the women said it, and their story was bad! It can be very frustrating and depressing to keep hearing this, but I try to find the positive. I know most mean it as a compliment, because I have not given up. I still asked those close to me to find better wording. I also told them please complain! I mean within reason. Pain is subjective. I can survive days of killer pain with scleroderma and call it normal, but get a migraine of tooth ache and be flattened. The shock of a different kind of pain bypasses all my built up tolerance. If it is a problem to them I accept that and support them,even if I'd pay money to trade places. For a long time I felt differently and I admit a professional doing that would probably still annoy me, but it's been a helpful perspective, especially when dealing with the ignorant.

  4. Hello. I was diagnosed with rheumatoid arthritis at 12 and scleroderma at 13. I am now 29 years old. I didn't meet anyone else with scleroderma until my brother's girlfriend's mother was diagnosed a few years ago. I was too scared to research because I had no idea what applied to me and what didn't. Fortunately I have localized scleroderma, but it has still resulted in the loss of function to my hands and I've had non-healing ulcers for over 8 years. I am new to this site and look forward to meeting others who have gone through this and to learn about possible treatments I could use.