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Everything posted by barefut

  1. Bone Loss And Meds Or Is It The Sclero?

    Thanks guys, At my appt withrheumy on May 1 I'll be asking her a lot of questions about pred. I will have been on it 3 months by then. She never mentioned having to take x-tra calcium.
  2. Funny Story

    When filling out the papers the nurse gave me for my first Gastro appt. I checked all the boxes indicating all the symptoms I have been having. Then off to the side I wrote, "all about 50% of the time" When I was talking to the nice intern she said she misinterpreted my handwriting because my "a" had a longish tail on it. It looked like to her that I had to call "911 about 50% of the time" when sitting on the toilet! I told her that yes, sometimes it IS an emergency but not THAT MUCH of an emergency! I couldn't stop thinking about what she said and got the giggles that wouldn't stop. Barefut :P
  3. Bone Loss And Meds Or Is It The Sclero?

    It worked! Yay! I learn something new everyday. Today I also learned that I'm still pretty computer illiterate. :huh: Thanks Shelley. I know my DDS will appreciate it. Barefut
  4. Bone Loss And Meds Or Is It The Sclero?

    Thanks Janey, I tried printing that page to take to my DDS but it prints starting at the far left, including all the sclero site info and cuts off 1/2 the information I need on the right. Do you know how I can get a good copy? Thanks, Barefut
  5. Prednisone

    Hi Megan, So, glad to hear you are feeling better! What dose did she put you on? Did you tell her our stories? Don't forget to watch for side effects. My rheumatologist orders bloodwork on me every 3 months to check on the effects of the meds. Take care and enjoy your pain free days! Barefut
  6. Colonoscopy And Upper G.i. Scope

    Hi Jackie, I have the same things done on the 27th along with an esophageal stretch. I was told I could substitute Crystal Lite for the "flavor" they use with the prep mixture. I've never had any of these tests done before. I'm worried about going 36-38 hours without eating! I will probably get an angry headache and/or faint! Not sure just clear liquids will keep me from that. Good luck to you tmorrow! Let us know how it all turns out. Barefut
  7. Fatigue

    Hi Jen, Have you been more fatigued since you moved to the mile high city? Or does that not make any difference if you're on oxygen? It was just a thought. Fatigue is SO frustrating! Especially when you have loads to get done. Then it can be depressing too. Take care and hang in there. Hope you kick fatigue's "petunia" as my 4 year old says. :) Love, Barefut
  8. Raynauds

    Raynaud's started about a year before sclero diagnosis.
  9. Reglan

    I usually do well on any new med. Reglan has actually been the only drug that I have ever experienced bad side effects on. I got the uncontrolable jaw jerks. Really strange feeling. Not painful , just strange! :blink: Was told to go off it right away. Barefut
  10. First Gastro. Appt.

    Well now I get all the fun stuff, barium swallow, endoscopy, colonoscopy, esophageal stretch. Yea, most of it not too bad I'm sure. :huh: I guess my heart got a little jealous of my son's murmur and had to have one too. News to me as my gastro doctor told me offhandedly, assuming I already knew I guess. He just says to his intern, "Yea, probably the scleroderma going to work there" So now I get to worry about that now. Also, aparently I only have to TALK about strep to GET it! My throat hurts like... the "dickens". Going in tomorrow for a culture. Today was my son's first day without antibiotics. He has been feeling good. Tonight as he fell asleep in my lap he felt a little warm. I'm going to go take his temp. Now watch ME give him strep. AAAAAAAAAAGGGGGGGHHHHHHHHHHH!!!!!
  11. "hot Head"?

    I do too sometimes get a hot, flushed feeling in my face but with no fever. Don't know.....? Barefut
  12. Doctors And Their Egos

    Very well said Mike! I agree 100%! Barefut
  13. First Gastro. Appt.

    Oh yea, NO STREP! YAY! :D
  14. First Gastro. Appt.

    Thanks Shelley, for some more peace of mind. I can't believe my gastro doctor said that! Pretty callous and insensitive. I have been running into a lot of insensitivity everywhere I go lately - the pharmacy, the hospital billing dept. I think they all need to go to sensitivity training classes! Or else go find another job. If his comment was any indication of how he is going to be for the future of our relationship, then I thnk I'd better save a lot of time and heartache and switch doctors now. I got my son in to his regular doctor last week and he was again reassuring. The ASO titer preliminary results were negative but the final results are still ot in. No one has explained to me how that works. Don't know how long I have to wait for final results. We scheduled an echo for him to further ease my mind. His appt is on April 17th. Thank you all again for your concern and good wishes. Love, Barefut
  15. I have had these come and go over the past year or so. I've read it can be related to heart problems....? I thought it was Raynaud's related. Anybody else get these?
  16. Not sleeping much and right now feels like knives stabbing me all over my torso - probably gas :rolleyes: I'm tense and I'm getting those shakes/tremors we were just talking about and sharp chest pains and flutters. I know its all lack of sleep and stress. Plus I haven't eaten in awhile. I still have not heard anything regarding my son's last blood test, (anti-streptolysin - O Titer) which will tell us if he had an untreated strep infection. It should have been back today the nurses agreed. I am convinced that he did not have rheumatic fever but he is still not out of the woods regarding bacterial endocarditis which can also be caused by other microorganisms like the mold in the attic which has its entry in my son's bedroom ceiling. I keep a heppa air filter running in there when he sleeps in there, which is rare. We've been sleeping Japanese style on our "nests" on the living room floor for a couple of years now. I FINALLY got an appt with son's regular doctor tomorrow morning. I am compiling my questions and he will get a lot of them. Then doctor will be gone - again for who knows how long. My son is now having night sweats which is one of the symptoms of endo. and in the past week he has started snoring but doesn't have any congestion. He's also started napping in the afternoons which isn't like him. (another symptom) Well, I'm going to go try sleep again - got 4 hours lastnight. Today was not fun. Got a second wind about 6pm and also can't turn my brain off at night. Sorry to keep posting about my son's condition - unrelated to sclero - but you guys are my people. Thanks for your good wishes. Love, Barefut
  17. Still Stressing About My Son

    Thanks so much everyone! My son's doctor was reassuring again. He said the ASO titer preliminary test results were negative but we're still waiting on the final results - whatever that means - he didn't explain. He's the type who talks purposely so you can't get a word in to ask a question or tell him anything. I tried 3-4 times to say something but he would raise his voice a bit and keep on talking - maddening! I think he saw my list and was trying to answer my questions before I asked them or else just be so reassuring that my questions were irrelevant. Maybe he was afraid I would ask something he could not answer! He said he knew I was probably thinking about my scleroderma and letting that worry me. Actually I wasn't. I was thinking Bacterial Endocarditis and mold. Anyway, I finally gave up and decided to save my questions for the cardiologist. My son has an appt for his echo on the 17th. I posted this in a new thread but I 'll mention it here too. My gastro doctor found a new murmur in me today! I also may have strep. I DON'T EVEN BELIEVE IT! It never ends. Have a good night, Barefut
  18. The Incredible Shrinking Mouth

    Welcome to the incredible shrinking mouth club! Exercises do help at least a little, and a little is better than nothing. Not long ago I posted a list of exercises that I do. Try doing a search for "mouth exercises." (not sure how that works tho) Nothing can be done to stop it. Here are some helpful tips though. 1. In order to make it look like you have lips, draw whatever size you like around existing lips with a lip liner and color them in with lipstick! 2. Smile a lot to hide the deep vertical lines around mouth :D 3. Work on those stretching exercises. Here are a few of them > :angry: > :o > :rolleyes: > <_< > (not kidding, really these are them!) 4. Use a mini vibrating masager on your face especially the jaw joint. Take Care, Barefut
  19. Hi Margaret, I also have (mild - moderate) ILD. My symptoms are much the same as Jennifer, Janey and Lisa though sounds like to a lesser degree. I am not on oxygen. Last summer I could actually mow the lawn withno problems. As long as I go slow and steady I'm ok. Don't ask me to run though! :blink: And even a short distance of brisk walking gets me panting pretty quick. Take Care, Barefut
  20. I am a basket case right now. I can't wait for the labs to be back. Please keep him in your thoughts. Thanks, Barefut
  21. Weird Trembling

    I too have experienced the shakes, probably low blood sugar. I was shaking the other day when I posted about my son, so I suppose stress can trrigger mine. But, the rapid heartbeat is a mystery to me. I've experienced this in the middle of the night. It wakes me up and feels like a jackhammer vibrating my whole body. Hasn't happened in a long time so it's not like it has ever been a regular occurence. B
  22. Pcp Appt.

    Hi Sweet, Sorry to hear of your fibro diagnosis. Hope you find what works to make you feel better soon! Love, Barefut
  23. Nan & emmie, Well, that makes me feel better because I don't feel like a neglectful mom but makes me still worry about that last test coming back positive. If one can have strep without fever then how DO they find it? :huh: Barefut
  24. 2 Of My Boys Show A Few Signs

    Hi Diana, I'm with Lisa, go for the blood tests and try to ease your mind. I know that even though doctors say it's not hereditary, I always have that worry in the back of my mind. As moms we always will. Take Care, Barefut
  25. Barefut....how's Your Son?

    Oh my ###### Margaret! Well, thank you! I just posted a (LOOOONG) update a minute ago. Here's a short update: He's feelng very well. Fever gone. New antibiotics must be working. I am so touched by everyone's concern. I surely did not want people to worry like I do! I was comforted by everyone's replies. They were just what I needed. So I want to thank everyone again for taking the time to try to make me feel better. You did. If you're interested, I posted a detailed update under yeaterday's post. Love you guys! Barefut