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KayTee

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Everything posted by KayTee

  1. Morphea and CREST

    Thanks Shelley. I love the idea of baby fabric. My fingers are too 'dislocated' and sore to sew but my daughter-in-law does occasionally. Perhaps I can work with her on the Soft Pants Project. Great idea. KayTee
  2. Morphea and CREST

    Thank you Susie. I think I'm going to make Soft Hugs my mantra. Soft Hugs and Soft Clothes!! I've decided a 'new' life in the Bay area requires new clothes and I'm purchasing the occasional soft cotton item. Occasional because what feels good in the store doesn't always feel good after an hour on. And I've discovered not all cottons are the same. But I'm a lifelong learner. Thanks for your warm thoughts KayTee
  3. Morphea and CREST

    Thank you for your insights Amanda. The steroid lotion is helping with the burning/itchiness or the morphea and hopefully more medication won't be needed. I've read that morphea tends to subside after a while although it never goes away. Has that been your experience? Thanks. KayTee
  4. Am I alone?

    Thanks so much everyone for the topic and all the responses. I learn so much from seeing other people's situations and feelings; it especially helps to cope with my own. I think at some point I will seek out counseling but right now I'm coping (I think). This is definitely the right place for information and understanding. Thank you all.
  5. Pain...venting need help

    I agree with the others - lots of thin layers and maybe also try the sweat cuffs for wrists? Good luck and hope tomorrow is better.
  6. Happy Anniversary

    Congratulations of all your progress. Lots of warm and positive thoughts coming your way.
  7. Hi everyone: I haven't posted in a while (been looking after mom/grandchildren) but as always, there are more questions. After my CREST diagnosis last November, I went to a scleroderma center and have been very happy with the doctors there. My next visit is August. Meanwhile, I have seen several other doctors for things and they have said there are drugs which slow the progression of the disease. Does anyone know if this is standard practice? Based on individual progression? As scary as everything can be sometimes, this site really helps. Thanks. :bye: KayTee
  8. Always more questions

    Thanks so much for all replies. A part of me doesn't want to take anything (of course) and yet it's hard to listen to people, especially other health care professionals, who say you can do this or this and this...... I really appreciate all your input. And it helps me add to the inevitable list of questions for my next expert visit.
  9. Nail changes

    Good luck with your nails. My nails were the first indication of CREST and in a way they have kept me aware of more changes - nails now curving down. Best wishes. KayTee :bye:
  10. BEST READS EVER IN THE WHOLE WIDE WORLD

    Hi Janey: I saw your post about a month ago and decided to read the Swans. It took a little while to get into it but it's fascinating. I know some Chinese history but the impact on the individual, then community, leaves you stunned. Thanks for the post. Have you read Balzac and the Little Chinese Seamstress? It is a semi-autobiographical novel written by Dai Sijie that was also made into a stunningly beautiful movie. Warm regards
  11. Laptop computer tip

    Hi Mando: I just read a review of an app to make your phone into a hand warmer. Who knew! It makes the fan run on high and does heat up the phone. Unfortunately it also goes through the battery in about 30 minutes. So not generally recommended.
  12. it's been awhile

    Thanks. I need these reminders on certain days.
  13. Dear miocean: Thank you for sharing your fears and concerns. I'm awed by how helpful this site is, and how caring and supportive also. Please let us know how you are doing. warm regards,
  14. Thank you Emmi. Sometimes it's easy to get caught up in all the changes/problems and not see some fundamentals. Hugs.
  15. Great ideas. I travel 6 hours to see my grandchildren several times a year. As Jeannie said - definitely a neck pillow but it has to be very flexible. Slip on/off shoes for security! It's hard to tie knots any more. I also bring a book I've been waiting to read, but sometimes my eyes hurt so I turn on the airplane mode on my phone so there is no wireless signal, and play a couple of highly addictive games I've downloaded. Nothing that requires a lot of hand movement. Have a wonderful trip. :bye:
  16. Wow! I would never have thought of using a brush with liquid foundation. Off to buy brushes.... Thanks for the details.
  17. Questions about Digital Sympathectomy

    Dear Blessed: I had a digital sympathectomy last year before I knew I had scleroderma. It really helped the fingers on that hand (left dominant) which were constantly numb, white and eroding, plus very painful. My fingers have been better since then. It hasn't solved the underlying problem of course, but I believe it saved my finger on that hand. I found the pain less than I thought and very manageable - just 3 days of meds. Physical therapy was wonderful after everything had healed. Each week I felt I could do more and more. The hardest things were brushing my hair and teeth because it was difficult to grip things. But that became my benchmark for each day. Best wishes. I'll be thinking of you.
  18. Rheumatoid factor

    Hello warmheart: My tests were positive for Crest (limited sclero), rheumatoid and lupus. However, I was told that was due to general inflammation from the sclero. (Not sure.) No subtests came up except for CREST so doctors don't think those other two are a factor. And I agree with 'enjoy the ride"; never boring. Good luck and hope everything goes well.
  19. Finger issues

    Hello everyone: Has anyone any experience with cysts on fingers? I have one on my index finger, first joint, that is pretty big. Right where the arthritis bumps are of course. My doctor gave me a sulfa cream and a splint, but I'm just wondering if they do go away? The doctor said surgery to remove the bone spur if it doesn't get better.... Not what I wanted to hear. I was believing in a magic pill of course.
  20. Thank you for this post. It's hard to be open and discuss the disfigurement of this disease, but it's something I need to think and talk about. For years I have worn long Capris or skirts in summer. Frida Kahlo was a painter who had a wasted leg from polio as a child, and then had a horrendous traffic accident that left her with very scarred legs and arms after 30 operations. She favored long colorful peasant style skirts and blouses, with lots of jewelry. I don't wear rings or bracelets any more, but I'm thinking I'll adopt Frida's look. Thanks again for sharing ideas and experiences.
  21. Finger issues

    Hi Shirley: It seems to be inflamed and is so sore that nothing can touch it. Even a slight brush against an object hurts. I think the combination of the splint for immobility and cream is working. It looks less red. The sulfa cream is an antibiotic topical. I don't think there is a calcinosis. I picked up the Xray and to my totally untrained eyes didn't see anything. And the osteoarthritis is exactly the cause. Too much pressure and not enough circulation. Thanks.
  22. Finger issues

    Thanks Jeannie. I've been told it's a cyst although I just had an Xray to check. One doctor said a calcinosis, another said a cyst and the 3rd said an ulcer. But it's being treated as a cyst. I looked at the picture on the site and I think it looks more like an ulcer. Thanks again.
  23. t.v. commercial for heating oil

    Hi miocean: I also live in NJ and saw the ad but wasn't really paying attention. I'll have to listen next time. Thanks.
  24. Laptop computer tip

    Hi Mando: I've wondered about the smooth fingertips also, but it works when I'm warm. Maybe there'll be a smart phone/hand warmer one day? The phone does radiate a little heat, but perhaps a little extra heat discharge with a mini-fan? Oh well, one can dream...
  25. Laptop computer tip

    Thanks for the tip. I just realized why my smart phone doesn't always respond to my icy white fingers!! Oh well, my thumb still works.
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