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living linda

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Everything posted by living linda

  1. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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?
  16. I have had swallowing problems for years. I have my esophagus stretched usually every six months to a year, and that usually works well right away. But, I had the stretching done recently and felt no improvement afterwards. In fact it seems worse. I am curious as to why? I don't know whether to call the doctor or not. I had a bad experience there. I told the out-patient clinic beforehand that I was a hard one to stick but they didn't listen and I threw them behind. The doctor appeared somewhat ticked off about it. But, I had warned them! Now I am thinking maybe he hurriedly did my procedure and didn't do a good job. He has been my doctor. for years and I have never had a bad experience before. Any suggestions? By the way, I have trouble eating out because the restaurants are usually so cool. I always have a sweater, but I still will choke easily. I have found that if I drink hot decaf coffee I have less problems swallowing and the hot mug keeps my fingers warm!
  17. No, they are hurting because I lifted, pulled, and tugged on too many things today. I am so aggravated at myself. I know better, but when I am feeling so well I forget and overdo.
  18. I have been feeling so much better lately that I decided to do some Spring cleaning in my closets today. As a result my old friend regurgitation visited me and my stomach, chest, and throat are giving me fits this evening. I bent over too much and as a result I will pay the consequences tonight. My lung doctor warned me not to do much bending because he said that the regurg. can damage the bottom of the lungs too. Oh, I get so frustrated! Just when I think I am doing so well I go and mess up my stomach again. And, my neck and shoulders are so painful. Do any of you ever do as I did today and cause yourself pain? Wouldn't you think I should know better? If my eyes would produce tears I would cry! Thanks for letting me vent again!
  19. I chose Living as my screen name in honor of the 15 years plus of living with this terrible disease. I remember having the doctor tell me to go home, get my affairs in order, and in other words there is not much to do about it. I don't use that doctor any more. I would leave his office feeling like a hypochondriac with none of my issues resolved. He was the only rheumatologist here at the time. I was fortunate that when we had a new doctor come to town, my general doctor. gave me a referral. The amazing thing is that she was an associate in the same clinic with my "old" doctor. I have made progress and am never made to feel like a bother or hypochondriac. I am not cured but I am gratefully alive!
  20. Hi everyone. I had a back tooth break a while back and have been putting off going to the dentist. Not only because of the money but because like so many others with this disease I have an extremely small, non-pliable mouth. My dentist is a small lady and is so patient with me. I hope she doesn't retire before I don't need her any more. Anyway, today I had to get a temporary cap put on and my tongue feels like it had a sliding accident on the freeway pavement and my lips are cracked on the corners from stretching them for two hours. She suggested I use "the gas" so I made it through without too much pain. After I left there I thought I'd run by my doctor's office for lab work since I had some gas left in me. That is a whole different topic. My veins are terrible and he had a new lady working. Needless to say I have not had a good day. Thanks for listening!
  21. That is funny! It is so refreshing to be able to laugh in spite of the circumstances. I'll never pass that nail place again without thinking about my friends on this forum.
  22. I know what you're saying. I have lived with sclero and all the fun things that go with it for over 15 years. At first the disease consumed me. I would get so frustrated because nobody seemed to understand just what my problem was. Today I honestly go days and don't even think about it. It has just become my way of living. I am reminded when I see a picture someone snaps of me, or if I catch a glimpse of myself in a mirror. I am so sorry you are going through this. It is difficult not to think about it especially in the beginning. Maybe some pamphlets would help for those who have the most questions, I think I gave some out in the beginning. I think my biggest problem was the way people treated me. I don't want to be treated like poor you. I hope I have helped a little. It will get easier.
  23. My husband just looked at me and wanted to know why I was laughing! He thought I had really lost it. That was so funny. You're right! I am going to toughen up. No more shy girl for me. Watch out manicure salons I won't take it any more!
  24. Good morning! I am so happy that I have a place to vent some of my frustrations and know you may understand. Do any of you have fingernails that curve under? Mine are starting to do that, and I have the typical digital ulcer scars on the tips of some of them, and the claw fingers. Well, I go once a week to get my nails polished thinking if I have to have yukie hands why not have them look the best I can. I visited a new place last week that is closer to my home. I got a man that spoke in a foreign tongue "about" me I think, because he called over another worker and they carried on about my hands. He asked and I tried best I could to explain the weird arthritis thinking he'd just hush and I could leave and never return. Get this- he had the nerve to say,"always ask for a man, because your hands will gross out girls"!!! I didn't think that much about it at the time due to the humiliation I was enduring, but as I laid there during my sleepless nights I pondered the best responses that I should have said. Oh well, needless to say, it's back to the old shop. Thanks for listening! My hubby says thanks too.
  25. Wow! Do you know how special you all ( hint hint I'm from the South) make me feel! It is so encouraging to have someone else know just what you're dealing with. I personally do not know anyone else with scleroderma, so I look forward to the opportunity to chat with you here. Thanks!
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