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living linda

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About living linda

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  1. New drug

    I have taken that medication for a couple of years now. My rheumatologist and pulmonary doctors agree that is a good drug to help suppress the pulmonary fibrosis. I have blood test every 6 weeks and thankfully have never had a problem. I feel fine on it and so far it seems to be working. I do hope it works for you too!
  2. Fingernails

    I actually have an appointment coming up soon with a pulmonary doctor. He has been following a lung nodule for a couple of years. I get a c-t scan every 6 mos. and so far the nodule has not grown. The pulmonary doctor did confirm mild fibrosis though. He told me I am his one and only scleroderma patient. I don't want anyone else to have this terrible disease, but would feel a tad better if he had treated it before. Never has any doctor mentioned my nails to me. I plan to mention it to them next visit. I am going to become my own best advocate!
  3. Raynaud's in feet

    I am so thankful for the suggestions. I just left a grocery store that was so cold I had to leave almost immediately. It is 60 degrees outside and the air conditioner had the building freezing cold. Isn't that crazy? Air conditioning is harder on me than actual cold weather.
  4. Freaking out today

    I am so glad you addressed this situation! I pulled through the bakery drive-thru, placed my order, was told to wait a minute, then the manager appears. Hey- I noticed you when you drove thru the line. You have scleroderma don't you? Well, yes, but how did you know Am I that noticeable in public? I drove home and could have cried all day. You know why I didn't? I have very few tears. The manager was so sweet and meant no harm. Sometimes it just hits me out of nowhere. I will be feeling so like my old self and I will see a photo of myself. Where did I go? I had to go to a walk in clinic while in the Tacoma area last fall. The doctor walked in and said," so, how long have you had scleroderma?" I went to a dermatologist and she walked in and said, "you have fish mouth". What!! That's what she called the lines above my lips. I just love this forum. I would love to go to a convention and meet you all in person. I will be the shy girl in the corner back table with a fish mouth and patriotic fingers. (red, white, and blue).
  5. Fingernails

    I did forget to respond to the nail salon question. Thanks for asking. I still love to talk about what happened. Ha,ha... I went back to my original nail girl and confessed up to what I had done. I told her what had happened and she didn't like it a bit. She is so sweet and professional and I shall never stray again!
  6. Fingernails

    Although I love pretty gardens of flowers and vegetables I never work in them. That's my husbands hobby and mine is to watch and pick. I had seen another scleroderma patient with my "nails" and have always wondered the why. I just did a search on the net and found a slideshow from Mayo clinic and found my nails. It is called clubbing and can be associated with low Oxygen in blood and lung disease among other things. Could my severe raynauds or pulmonary fibrosis be the cause? I plan to discuss this with my rheumatologist when I see him. If he will sit long enough. Maybe I'll tie him up or lock the door. Just teasing, I love my doctor.
  7. Fingernails

    Does any one else have some weird shaped fingernails? My middle nail on the right hand is curved very oddly. I don't know how to describe it but it curves all the way under? Now my index nails are starting too.
  8. Raynaud's in feet

    The bottoms of my feet burn at night. They feel like I have been walking on pavement barefoot maybe. Like right now. I have them covered in my soft socks with my feet up and they are hurting. I hope I am not getting neuropathy.
  9. Raynaud's in feet

    Thank you for all the responses. Very useful ideas from people who know what I'm talking about. One suggestion was to use a heated throw. I live in the south where we get hot temperatures in the spring and summer, but I cannot make it without my heated throw year round. It seems air conditioning affects me more than cold. We visit our children up around Seattle fairly often, and I left a throw there. The first trip I packed it in my checked luggage and confused the poor checkers of luggage when it went through the scanner. All those wires!
  10. Raynaud's in feet

    I have had diffuse systemic scleroderma for a number of years but now I am encountering a new problem. My feet are beginning to have Raynaud's attacks. My fingers have always had them but I now have numb feet when shopping in stores or eating in restaurants. I know which ones to avoid or hurry through. It seems if I wear tight shoes like heels that it's worse. My feet also have such calluses on the toes. Any suggestions would be appreciated.
  11. No Tears

    I was a work in because my back cap fell off, so I didn't have the nerve to engage my sweet dentist about my dry mouth. But, I plan to do so at my next appointment. I do go every three months for cleaning at her suggestion. My symptoms are making sense now. That may be my cavity problem in spite of excellent dental care.
  12. Ear lobes shrinking?

    Just when I thought I was going to be a trendsetter I hear I'm not the only one with the shrinking earlobes! I do think the side show might be something to think about though. You know todays economy and all. Would anyone be interested going on the road with me? You all do make me smile and laugh and that's a good thing isn't it.
  13. Ear lobes shrinking?

    Have any of you noticed your earlobes shrinking? I have always had smaller ears, but my lobes are to the point I can no longer wear earrings. Just wondering.
  14. No Tears

    Thank you Shelley. You answered so many of my questions and it just so happens I have a dental appointment today! I plan to do exactly as you suggested.
  15. No Tears

    I have noticed for several months that although I am crying in my heart, no tears will come. Does this ever happen to anyone else? It is an uncomfortable feeling. I have emotions, but absolutely no tears. I also have dry eves, skin, and mouth. Any ideas what to do?
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