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Everything posted by Jessiere88

  1. Welcome rach9, I am a new member here too, however I have had scleroderma for 10yrs, since I was 15. I have systemic scleroderma and quite extensive sick involvement, not least of which on my chest, so I totally understand. Unfortunately, I personally haven't been able to find anything to help with the tight skin. I use a lot of moisturiser which helps to soften the skin a lot and lesson the pain of the skin pulling. I'd also like to direct you to a painting I did about how I feel with the tight skin of scleroderma, particularly on my chest, which is one of my worst areas. It is in my photos o
  2. Jessiere88

    My Artwork

    These are a collection of some of my artworks
  3. Jessiere88


    From the album: My Artwork

  4. Jessiere88


    From the album: My Artwork

  5. Jessiere88

    Sad tiger

    From the album: My Artwork

  6. Jessiere88


    From the album: My Artwork

  7. Jessiere88

    sclero girl

    From the album: My Artwork

    This one was a purely therapeutic painting of how it feels to have scleroderma. That is a zip on her chest. I often wish I could unzip my tight skin, and release it like a pair of too tight jeans, but as you all know, we can't.
  8. Jessiere88


    From the album: My Artwork

  9. Jessiere88


    From the album: My Artwork

    This is drawing I did of my Granddad after he died. It is a special one.
  10. Jessiere88

    baby lion

    From the album: My Artwork

  11. Wow Amanda, that's fantastic. Mind you it's very early days as I literally had the idea less than a week ago, but hopefully by early next year I should have a group organised and I'm sure that page will help. I may also need to drop you a few/a dozen questions as I have no idea what I am doing. Thankfully Google knows everything! Talk soon, and take care, Jess xx
  12. Hi Jess91, My name is Jess too, and I also live in Australia, but over the other side, in Queensland. There are a few specialist over here. I have seen them all over time. I don't really know what services are available over in Western Australia, but would be happy to chat with you about any issues you have. I've had scleroderma for a relatively long time now, 10yrs, and I have learned a lot over the years through many experiences. I understand your frustration in needing to find a doctor. My family moved from a small town to a bigger city to be near specialists before I managed to get a d
  13. HI Amanda, I'm not sure if you can have the smaller inside of the mouth without the outside smaller mouth as I have both. While I was reading your post I just kept thinking YES! I know exactly what you mean. The inside of my mouth is definitely smaller. My tongue, like yours, takes up my whole mouth and sometimes I become super aware of it and try to manoeuvre it to be more comfortable but feel like it just can't fit. The outside of my mouth has gotten so small that when I got my wisdom teeth out I had to be given a general so they could cut the sides of my mouth to make it open more so t
  14. Hi Lindahannah, I am sorry you are experiencing these digital ulcers. When I was high school I used to get them a lot. While a nitrolingual spray on my wrist helped to open the capillaries in my fingers and heal the digital ulcers, I have also used other things to help with the pain in the meantime. A topical anaesthetic gel like lidnocaine (there are other types which I just can't think of the names right now) simply numbs the area. It comes in different strengths so you should be able to get some relief. It does need a script so I would recommend speaking to your doctor. Sometimes doctor
  15. Thanks for sharing your stories with me. I know what you mean Amanda. I am always amazed at the many ways scleroderma can affect someone's body. I am looking forward to sharing experiences on here. I have also decided to start a face to face support group for chronically ill young people in my area, as there is nothing like that here. I am hoping to get the assistance of a former ICU liaison nurse I got to know well when I was in there and was made redundant just after I left. Talk soon Jess xx
  16. Hi everyone, Thank you so much for your welcome. A bit about me: I was diagnosed with Mixed Connective Tissue Disorder/ CREST (Rheumatologists still like to debate my actual diagnosis, as some believe I have too much skin involvement to be CREST while others say I have every symptom of CREST, so it's CREST) with Juvenile arthritis, Scleroderma and Polymyosiits when I was 15, 2 years after getting sick. I also have Raynaud's as a symptom. I have some internal involvement but so far my lungs and heart have remained untouched, which I am very grateful for. I do, however have restrictive lung
  17. Hi Cillam, I am also 25 and have had systemic scleroderma since I was 13. For a number of years now I've had calcifications, mostly on my knees where I have quite a lot. It has been a rather frustrating journey with them. I have seen specialists, surgeons and been hospitalized with infections because of them. Eventually I found a general practitioner who removes them for me each time they break through the skin, as our experience has been that they will not heal until they are removed. We try hard to not cut them out until they physically break the skin though because we are careful to not
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