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Everything posted by KayTee

  1. KayTee

    Rest in Peace...Life Before Scleroderma

    Dear Amanda: I wish you (and others) all the best with counseling and moving on with life as it is, not was. Thank you for being brave enough to share your thoughts and fears. Warm hugs and best wishes.
  2. KayTee

    Raynauds & Nifedipine Use

    Hi Lil Dee: I've had primary Raynaud's for many years and it got much worse with scleroderma. I found the nail beds on either side of my index and third fingers get very sore if the nail grows, and then sometimes gets hard and white. My understanding is your nails and fingers flatten with scleroderma so the nail 'eats' in a little bit on the skin. My 'cure' is to keep the sides of my nails filed gently and carefully every couple of days. And I've taken nifedipine for a while; not sure how much it helps but I'm unwilling to stop it to find out it doesn't. Good luck and best wishes.
  3. KayTee

    Pulmonary Rehabilitation Dropout

    Great news and walks miocean. Less leg pain and more outside sounds like a wonderful recipe. Congrats.
  4. KayTee

    What's Your Favorite Holiday?

    Yes. This speaks to me. Growing up in England I remember the Rag and Bone man, the milkman, and the eggman with one arm from WWII - and how did he balance those eggs? As for maths (or math) I ended up teaching pre-algebra and learned all the names for things I already knew. Las plus ca change....
  5. Hi everyone: Sadly there are those doctors out there, but as noted, we also find the great ones, the wonderful ones, and the caring ones. I had a hand specialist who beamed when I told him my scleroderma diagnosis, but it explained my problem. And a rheumatologist who, when I questioned how to deal with skin problems said, that's what make up is for. But the amazing ones are out there and, perhaps, through this site, we know how to find them. And, reading the posts, we do.
  6. KayTee

    Signing In And Out Of Sites

    I don't have the answer, in fact I just bought a simple address book to put my passwords in because they're all on my computer. And I think I'm fairly well versed in tech stuff. Sigh. I'm a Luddite at heart just going back to pencil and paper. Warm hugs all.
  7. KayTee

    What's Your Favorite Holiday?

    Jo: You're right, I can't text with abbreviations either. And I'm so glad iPhone usually knows its apostrophes. Oh the years I spent teaching those things. Some students used to think apostrophes were like salt and pepper and you just sprinkled them around occasionally. Miocean: I do remember Bell Labs and its programs although I was never a part of it. How wonderful for you and your school district. I think these forums (fora?) are like conversations and if they wander occasionally into other topics, all good, or all's well, or ?
  8. KayTee

    Yearly Test Updates

    Hi micoean: All good news and how wonderful. Not that anyone wants to be a textbook case but plateaus are great. Warm hugs. And Margaret, I can't find the smiley dancing faces either. I use Safari, yet I saw them when I first started on the site. I'd hate to think the smiles have disappeared.
  9. KayTee

    What's Your Favorite Holiday?

    My favorite holiday is Thanksgiving. I didn't grow up with it in England but have always enjoyed it in the US. It's a day of family, warmth (compared to December and January), great food and relaxation. No presents to wrap, trees to decorate, or customs to adhere to (unless you count football). And in southern NJ where I lived for many years, I heard the 'pronoun' ussens along with youse. As a former teacher, my pet peeve was u for you in formal writing. But I digress ... perhaps that's another topic.
  10. KayTee

    my poem

    Beautiful poems ladies. Yes - I think we need a poetry section. I don't have the concentration I used to have as a teacher either. And when I couldn't turn the pages of a book properly I knew it was time to retire. Perhaps our adaptations to life with scleroderma keep us focused on that more?
  11. KayTee

    skin on hands breaking down

    Thanks micoean and Joelf for your information. After reading all the info I could (I had to stop after a while - can get scary) I think I'll ask my dermatologist about adding Viagra. The ulcer is very very slowly healing with the nitrocream but it seems like it could easily go backwards at any time. Thanks for being there.
  12. KayTee

    Pulmonary Rehabilitation Dropout

    Miocean: You are always an inspiration to me and others with your eloquent descriptions of all you have gone through. All the posts have been sadly wonderful to read and it does help me (and I'm sure others) to read and digest words of wisdom and sad experience. I read a quote recently: She had the disease but it didn't have her. Warm regards to all
  13. KayTee

    skin on hands breaking down

    Thanks for all the info in these post since I'm having trouble with a finger ulcer not healing. My dermatologist gave me Nitroglycerin ointment which seems to help but not quite heal. Has anyone else some experience with this? A doctor at UCSF who I went to see for lung issues told me to try Viagra since it helps with circulation. Again I'd love to know any advice/issues with this. Gentle and soft waves to all. Thanks.
  14. KayTee

    Off Doctors

    Congratulations!! wonderful news for you and your family.
  15. KayTee

    Gabapentin anyone?

    Hi Amanda, I took Gabapentin recently after a surprise and painful diagnosis of shingles. I found it hard to sleep although it did dull the pain of shingles on my forehead. But it took so long to wean off it and get back to sleeping again. Good luck.
  16. KayTee

    Appointment with Scleroderma Expert

    How wonderful that you were able to see such a dedicated specialist. Knowledge is power (and perhaps power is part of health?).
  17. Wonderful news!! Congrats on your skin score and overall improvement (sounds like a school award right?)
  18. KayTee

    Dem Bones and other bits

    Warm soft hugs your way. Your sense of humor helps everyone. Thanks, and hope you will be feeling better before long.
  19. KayTee


    Congratulations and best wishes to all.
  20. KayTee

    Finger Tips sore to touch

    Hi Winnie: I've had Raynaud's since birth from a missing part of the artery and was then diagnosed with scleroderma which caused very intense reactions to cold and pain in my fingertips. Even the smallest grip can be painful, and trying to open my grandson's car seat harness is an exercise in frustration for both of us. But I manage. Soft fabrics. Smooth utensils. No knives. And I ask for help. I hear you. Hugs.
  21. KayTee

    Sjogren's and Earache

    I agree with the tooth to ear connection. I had ear problems for the first time 2 months ago but it turned out to be a gum infection from scleroderma related issues causing the ear ache. Good luck.
  22. KayTee

    Starting Chemotherapy

    Hi Vanessa: I had breast cancer and went through surgeries and treatments 8 years ago. I was diagnosed with scleroderma almost two years ago. Yes - you can do it. I was so thankful for my wonderful doctors, new treatment therapies and medications. Today I am maintaining my health and starting a new life over in a warmer place - California. Best wishes and warm hugs to you.
  23. KayTee

    Breast Cancer and Scleroderma

    Dear Vanessa, Warmest thoughts are with you along with a sack of fairy dust. I had breast cancer 7 years ago, and although I didn't know I had scleroderma then, looking back I can see the signs were there. All the surgeries and treatments were successful. There are so many wonderful doctors, support personnel and medications available and I know they will all be there for you along with your significant other (bless him). KayTee
  24. KayTee

    Morphea and CREST

    Hi everyone, It's been months since I've posted or been online at this site because we sold our east coast house and moved west to a warmer climate which is helping my cold cold hands. (Plus grandkiddies are here!) Before we left I had seen ivory colored areas on my thighs with redness in-between and then that started spreading up to my trunk. I was fortunate to find a very good dermatologist on my first try here in San Francisco who did a biopsy for morphea - which it is. Does anyone else have two different types of scleroderma? Any suggestions for coping? Or suggestions for types of clothing that don't irritate? Thank you and warm hugs to all,
  25. KayTee

    Morphea and CREST

    Thanks. Actually we are not living in San Francisco - you are right it's way too foggy (although warmer this time of year than NJ), but will be moving to East Bay where I've been told the fog rarely goes. Isn't Oregon chilly? I haven't been to UCSF yet since I've just started to find some doctors. But I know it's there if needed.