Jump to content
Sclero Forums


  • Content count

  • Joined

  • Last visited

Everything posted by barefut

  1. barefut

    Gastric Bleeding- Does It Ever Stop?

    Wendy, I recently met another woman in my town who also has diffuse sclero and told me about her gastric bleeding problems. She said she doesn't have much of a stomach left! I asked her if she ever visited this site but she has not. I can give her a call and encourage her join as I think she would be a very helpful person to many people here. If nothing else I can at least ask her your questions and relay her answers to you.
  2. barefut

    The Other Woman

    Well, I finally found the other woman with scleroderma in my small town. Three different people have told me about her but none could recall her name. I have been looking for her for about a year. Even tried to flush her out with a personal ad. I had an oportunity to mention scleroderma to my favorite checker at the grocery store and she took my name and number and gave it to the other woman when she came through her line. She was diagnosed 7 years ago, also has diffuse and is on a kidney transplant list. I spoke with her on the phone and will meet her at my coffee shop on Thursday. I am looking forward to it. Barefut
  3. barefut

    Tattoos And Skin Involvement

    WestCoast, I was concerned about that very thing so I cancelled my appt to have my ingrown toenails taken care of. They are not gross or infected or anything. I have just been battling with them for a couple of years, they get very tender now and then and I was tired of dealing with them. The doctor said that in addition to cutting the nails she would kill the roots where they tend to grow inward and that I would have thickened skin there for up to a couple of years. Well, my screen name isn't "Barefut" for nothing. I go from May - September in sandles or thongs and I didn't want them to look grotesque. I worried that if a normal person's skin would get thick and ugly what would sclero do to them?! Also, I accidentally snipped the back of my hand while cutting my son's hair, it was just a little nip and it made an ugly lump of a scar. Barefut
  4. barefut

    The Other Woman

    Well I met "the other woman" today. I'll call her Jane. She was wonderful. Funny and inspiring. She told me that she knows someone with sclero who's grandmother lived into her 90's....with diffuse! She reminded me a bit of americanmike with her optimism and a bit of Barbs with her humor. She referred to her medications (40 pills/day) as her pharmeceutical food group. Her sclero came on fast. Within 3 months of her diagnosis she was having kidney failure. She said she has lots of "ologists" and credits her nephrologist with saving her life twice. I am so glad to have met her. Barefut
  5. barefut

    Itchy Spot

    I have had a stubborn itch in the same hard to reach place on my left shoulder blade for months and months and months! It's maddening! :angry: I'm in the kitchen grabbing my pasta server and going up my shirt with it.... :blink: or else sitting on the couch and writhing back and forth..... So why the same itch in the same place? No skin changes there. Any home remedies for for this? Thanks, Barefut
  6. barefut

    Tight Feet And Legs

    Isn't it maddening that we have to stretch 10x that of a normal just to try to come close to the flexibility of a normal? If I stretched this much without scleroderma, I could be a gymnast by now! :blink:
  7. barefut

    Scleroderma Registry & DNA Repository

    So, what is the registry used for? What do they do with the information we provide? Barefut
  8. Just a funny lung story.... My mother -in-law has always been a heavy smoker, smoking up to 2 packs of buttless cigarettes a day most of her life. She's tried a number of times to quit and actually did for many months a couple of times. Well she told me of a dream she had after she had fallen off the wagon once. She said she dreampt that she took her lungs out, hand washed them, hung them up to dry and put them back in all squeaky clean! Wouldn't that be nice...... Off the subject a little farther....... Another funny dream my freind told me about: She had always wanted long hair but had trouble growing it out. She dreampt that she was washing her long luxurious hair in the shower but she discovered her hair was PERFORATED and the shower spray was causing her hair to snap off at the perforation and it all went sliding down the drain. That's not a dream, that's a nightmare. ;)
  9. barefut

    Bad Taste In Mouth

    Well my rheumatologist called me back right away and said that my change in diet could have changed the way Felodipine is being absorbed and because of that I may be experiencing metallic taste as a new side effect. Never thought of that. She still advised me to speak to my DDS as it may be a side effect of the teeth whitener trays I recently finished using. Just thot I'd update for anyone who was interested. Good night, Barefut
  10. barefut

    Bad Taste In Mouth

    Hi All, For the past week or so, I've had a recurring bad taste in my mouth, sort of metallic. I've used a teeth whitener but I don't think that would be it. That's the only change I've had in my normal routine of things. Haven't added any new meds/vitamins, or subtracted any. My labs came back normal except that my liver "ALT (SGPT)" was one point below normal. I have no idea what that is or means? And my Polymorphonuclear Leukocytes were 83% and it said, High. Again, I have no idea...? Under doctor's comments it said, "GOOD!" So I'm not worrying about it. So, has anybody experienced metal mouth? It's awful. Been chewing gum a lot. Thanks, Barefut
  11. Hi Elehos, My first symptom (and I thought it was just because I was fat and out of shape) came when I was coaching my son's soccer team when I was scrimmaging with the boys. My endurance was so low I became hot and flushed very quickly and easily, with very little running and it took me 2x longer to cool down and return to normal heart rate and temp. At other times I also experienced shortness of breath - not a panting, but a feeling that I can't satisfy a breath no matter how deep I breathed. And I would get the yawns. I hope you get to the bottom of your lung issues soon. Yes you do need a rheumatologist! Can your general practitioner refer you to a good pulmonary doctor? Take Care ! Barefut
  12. barefut

    Bad Taste In Mouth

    Thanks Sam, Your post sneaked in right before mine. I was just replying to mention a change in my diet so I am very interested in what your mom has to say! Thanks! Barefut
  13. barefut

    Bad Taste In Mouth

    Thanks for the replies all, I recently visited the DDS and all was well except a cavity and some slightly loose teeth. No bacterial problems. I read that certain medications for high blood pressure can cause metallic taste. I've taken Felodipine for my Raynaud's for over a year with no problems, so that shouldn't be it. When I have reflux its different, not metallic. I seem to taste it from the very back and sides of my tongue. Nelly, now that you mentioned drainage, I do have seasonal allergies and have been having some drainage but I still don't know why metal taste. That reminds me when I went to Maui on my honeymoon 11 years ago, my allergies flared up bad and I tasted gardenias the whole time! I forgot to mention that I have changed my diet suddenly and drastically (for me) I've cut my calories to 1500/day and cut out a lot of fat, sugar and sodium. Maybe my body is rebelling! Thanks again for your ideas everyone. I'm gonna call rheumatologist and DDS right now. Be Well, Love, Barefut
  14. barefut

    Carrie Maddoux: Isn Sclero Forums Manager

    Welcome and Congratulations Carrie! Barefut
  15. Heidi, I will miss your support. Glad to hear your health is good right now. Hope your complications work out soon and for the best. Take Care, Barefut
  16. barefut


    Yes Thanks Mike, It's always good to know where you're going......I think? This article and your explanation of it opens up a lot of questions for me to ask my rheumatologist at next visit. (She might even think I'm purdy edyoukated. ) It's very interesting stuff. Barefut
  17. barefut

    Happy Mother's Day

    Happy Mother's Day to all the moms out there! Hope you had a pain free day doing exactly what you wanted to do and nothing more. Love, Barefut
  18. barefut

    I'm New

    Hi Janice, You found the right place for information, sympathy and support. After awhile, everyone here feels kinda like family. Being able to come here and meet all these caring, sympathetic, supportive people and share how scleroderma has affected my life and read how it has affected other's lives, has made such a positive impact on how I have been dealing with this disease. I know I would not be doing 1/2 as well without this place. So come and ask your questions, share your worries and your fears let us help you through your hard times, we will be there. And soon you will find that you will be able to be there for others too. Barefut
  19. Hi Mike, So, when they say 10 year survival rate are they talking about 10 years from diagnosis or 10 years from onset of symptoms? Barefut
  20. 10 year survival rate 64%. Not good enough.
  21. barefut

    Back From Colonoscopy & Endoscopy

    Well, it's a good thing I didn't have my endoscopy one week later, after watching my favorite MD show where an endoscopy went wrong and the patient died! Maybe I'd better stop watching medical dramas. Got enough of that in real life. ;) Barefut
  22. Hi all, Got back lastnight from a long weekend in the big city and my "scopes". doctor took biopsies from both ends and I'll know results in 2 weeks. Discharge instructions said colonoscopy normal and come back in 10 years, yet he took a biopsy....? What's up with that? I can only guess that taking biopsies are a standard routine? Endoscopy said esophagitis. He didn't stretch my esophagus - guess it didn't need it - yay! I asked if he could look at my vocal cords and he said no (why?) but he'd be able to tell if reflux was causing my problems. I didn't get to talk to him after so I know nothing about that yet. He had also ordered a motility test that he didn't tell me about. No big deal but I like to be informed and know ahead of time! It course it showed dismotility. I could have saved some time and money and just told him that. I had a different motility test done last year which showed the same thing. Did I really need another one? Going for 3 mo check up with rheumy tomorrow am. Good night all, Barefut
  23. barefut

    Raising Scleroderma Awareness Now!

    In line at the grocery store I had another chance to tell someone about scleroderma - the checker. She said she knows another customer with diffuse but couldn't recall her name so she took mine, and my phone number to give to her next time she sees her. I have been told about this woman by other people in my small town. I have even tried to flush her out with a personal ad. I think I may have seen her last year in the grocery store but I was too new to this disease and too afraid to aproach that person then. Hope I get to connect with her someday. Anyway, only good can come from spreading awareness. Take care all, Barefut
  24. barefut


    Nausea - yes. :(
  25. barefut

    Can't Eat Popcorn Anymore!

    Popcorn is my secret sin. I'll have it up to 3x/week sometimes. I make a huge bowl, use a whole stick of real butter on it, sprinkle with salt, give my kids each a small bowl and finish off the rest myself. There! I said it! :( Yes, I know. I'm surprised I'm not dead yet too if not from the butter and salt alone. *sigh* I feel cleansed. Confession is good for the soul. B