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Everything posted by barefut

  1. 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
  2. barefut

    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
  3. barefut

    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
  4. Hi Everyone, Thanks for all of your comforting replies. My son had an ear infection 2 weeks ago which was treated with a short course of antibiotics. Weird thing was that he had no fever at the onset of the ear infection but fever set in on the 4th day of treatment and has continued even after his ear was cleared up. I had him in to have his ear checked after the fever continued and they said ear looked good but if fever continued, bring him back. It did, so I did and at that 3rd visit the ARNP heard a heart murmur. He has never had a murmur before, and because of the lingering fever with no other cold or flu symptoms, he wanted to start him immediately on a longer, stronger course of anitbiotics, get a urine sample, strep culture, bloodwork and an echocardiogram. All he told me was that he may have had an untreated strep infection enter his heart. This normally jovial man had a quiet, serious demeanor and was adamant that my son get on those antibiotics and get the blood drawn that night, before the lab and pharmacy closed in that next hour. Needless to say, I left the office with my head spinning! With no other information I of course turned on my computer hoping to ease my mind (yea, right ;) ) After our visit to ARNP today, he told me the strep culture was negative and the only thing I remember him saying about the blood work was that the test that will tell us if he ever had an untreated strep infection (don't remember the name of it of course) won't be back from out of state until most likely Wed. I asked him, "So, what are we worried about here?" and he said rheumatic fever, which results when a strep infection goes un treated or under treated. And one of the many complications of rheumatic fever can be heart valve problems. Well, my son had a cold with a fever in Feb but has NEVER compalined of a sore throat let alone strep throat! I think if my son ever had strep throat, it SURELY would not go unnoticed! Not unless there is such a thing as "mild strep". Is there? I left a message for my son's regular doctor to call me after 2p so I would be sure not to miss his call (tons of questions!). He called at 1pm and said he had to call early because he had to be out of the office after lunch (golfing? ) I missed him by 10 minutes. He did leave a comforting message though, saying he didn't think he had rheumatic fever and that his murmur is most likely benign. That just leaves the mystery of the lingering fever. He's had NO symptoms of cold or flu, and with his ear infection SUPPOSEDLY gone, who knows what's up with that. His last temprature was 99.1 lastnight , so I think these new antibiotics are doing their job. I'm thinking now that it's been his ear all along and this murmur probably isn't "new" but that this ARNP just has bionic hearing. At least I can relax a little this weekend thanks to the doctor's message. I just wish my son could have seen his regular doctor in the first place! Thank you all again for your comforting replies, and they all DO comfort me! And thanks for reading my long rambling post here. Love you all! Barefut
  5. barefut


    Megan, I forgot to say, YES! There IS always hope. Don't ever lose hope. I am inspired by the young woman you met too. I wish we had more inspiring stories to read. Take Care, Barefut
  6. barefut


    Kiwi, Well, since YOU asked........ I kick myself everyday for not stepping up to the plate and demanding something for my pain, stiffness and fatigue like 8+ years ago! I am angry and sad because I feel like I WASTED all that time being miserable when prednisone was there all the time. I will classify it as a "wonder drug" for me. It is not for everybody and it IS a scary drug and it DOES have awful side effects for some people and at higher doses. I've heard it described as a double edged sword. A lot of drugs are like that. I have only been on it a short time but I will say that prednisone has given me a big part of my life back and that is invaluable. However, for some people, it has taken big parts of their life away and for that I am very sad. I just feel very grateful to be lucky enough to not have had any problems with it - so far. And grateful to have a rheumatologist who is willing to try it with me and monitor it closely. Tonight I was practicing Tae Kwon Do with my son. I can do some pretty awesome kicks for an old lady of 41 with scleroderma. I might just have to sign up for the class and start working towards a black belt. ;) Good luck and best wishes finding the right pain relief for you. Love, Barefut
  7. barefut

    Problem Feet

    ced, My feet are pretty stiff too. I have to stretch them just like everything else. My ankles crack a lot. My achilles don't get too tight though. I used to have problems with hot, burning, tingling feet too but that has long since gone. I don't know what to recommend to help you. Maybe a cool soak with epsom salts before bed? Take Care, Barefut
  8. barefut


    Funny, for me, I usually tolerate meds well but with Reglan, I got the creepy involuntary jaw twitches and quit it immediately. Barefut
  9. barefut


    Hi Pauline, I have a lot of tightening in my face too but mine is not painful. I'm sorry your's is. I also haven't noticed if one side or the other is tighter. I have noticed though that some days it is tighter than others and it's definately tighter in the mornings. Some days it's a stretch to get my mouth over a sandwich. Stretching exercises help a little. If you lay a warm moist towel on your face for 5 - 10 minutes first it will be easier, not to mention feel pretty good! :) Somewhere online - probably here - I read and printed out some face stretching exercises. But you don't have to have instructions. Just do what feels right to get a good stretch but be gentle! I once strained my cheek muscle by giving it too much of a stretch from the inside out, with my finger. Here is what I remember from those insructions: 1. puff your cheeks out and hold for 5 sec 2. stretch your lips over your teeth 3. push your lips from side to side 4. tilt your head back and open and close your jaw(good adam's apple stretch ;) ) 5. stick your tounge out as far as you can and move it side to side 6. open your mouth as wide as you can and hold 5 sec I also bought a mini vibrating hand massager recomended by my hand therapist, that I use on my face too. It feels good to rest it on my jaw joint and let it vibrate my whole head. (Maybe THAT'S what's wrong with me! :huh: ) I also have tender spots in various places in my body but not my neck. They feel like overly sensitive bruises. Hope this helps you a little....at least lets you know you're not alone. Love, Barefut
  10. barefut

    Not Just For Fun...

    This recipe is well known to parents of preschoolers everywhere. I love making it because it feels SO good to knead the dough while it is still warm. It's a nice gentle work out. So here is the recipe for you kids at heart who might enjoy a warm, gentle hand workout as well as a little fun. 1 Cup Flour 1/4 Cup Salt 2 Tablespoons Cream of Tartar 1Cup Water 1 Tablespoon Vegetable Oil 1 Pkg Koolaid Mix ingredients with a wooden spoon in a NONSTICK skillet over medium heat stirring constantly. Mixture will quickly form into a soft dough ball. Let cool to warm and knead away. NOTE: The Koolaid is optional, for color only. You can leave it out and use a drop or two of your favorite smelling aroma therapy oil instead - unless you LIKE the smell of artificial cherry or grape... :rolleyes: This play dough will stay soft for many, many months in a zip bag. No need to refrigerate and you can rewarm it in the microwave for a few seconds for warm hand workouts whenever you want. Happy Kneading Barefut
  11. barefut

    Update On Sct

    Hi Dave, Thanks for your update. Good luck to you with everything. Barefut
  12. barefut

    Tender Spots

    I keep noticing new tender spots in various places over my body. Mostly around my ribcage and shoulders. And by tender I mean, I'll yelp at the slightest touch. Otherwise I don't even notice they're there. Weird - or what? :huh: I had my first ever massage last week by a student at our local massage school. She went easy on me and it was great over all but could feel it when she passed over a tender place. I have them in my hips too. My old lame general practitioner lamely did the trigger point test for fibromyalgia but said I didn't have it. That was over 2 years ago. I won't be sad NOT to have fibro. However, I was wondering if anyone else has these tender spots who also does not have fibromyalgia? Thanks, Barefut
  13. barefut

    Could Be Trouble

    Barbs, Wishing you a SPEEDY recovery!!! YES, report that doctor! (GRRRR :angry: !) Take Good Care, Barefut
  14. barefut

    I Hate Scleroderma! Please Help...

    My thoughts are with you, your grandmother and your family. It is so very hard to see someone you love suffer. My heart goes out to you. Your grandmother is lucky to have you in her corner fighting for her. Best wishes to you all, Barefut
  15. barefut

    Immobile Shoulders

    ltulip, I also have a lot of loss of range of motion in my shoulders and hips. Some days I can't reach my left armpit with my right arm to put on my deoderant! :P My hands are the same. My dominant side (right) is the stiffest. Is that the same for you? I'm sorry you can't paly golf anymore or that it is so difficult. I can't get out to do my yardwork or gardening and my yard looks terrible. I'm glad you have a physical therapist. I just finished hand therapy and she showed me some shoulder stretches too. The slow progress is frustrating. :angry: I always think, with all the stretching I have to do just to gain a little mobility, if I didn't have sclero, I could be a gymnast by now! So not fair. Hang in there. You are not alone. Barefut
  16. barefut

    Disability Approved

    WWOOOOOOOO WHOOOOOOOOOOO! I bet you're SO relieved! Too bad it took SO long. Best Wishes, Barefut
  17. barefut

    Scl 70--a Guarantee?

    Hi Erin, Welcome. I was diagnosed a year ago in Jan. I am the mother of two beautiful precious boys ages 9 and 4. A year ago I felt as you do now. It was hard to try to educate myself without scaring myself to death! I know every thought you've had regarding your daughter. My best advice to you is to not read too much of what's "out there" but instead read what's in here and ask lots of questions. Shelley and all of the moderators are so very well informed and educated and experienced with scleroderma that you can't find better advice or resources anywhere else. Also, there are so many caring helpful supportive people here that you will find they become fast friends. As far as your scl-70 goes, from what I remember (and don't quote me) 0>10 is normal >10 = positive. I just looked for my old lab report to confirm that but I can't find it. I do remember that my scl-70 result was 168 though. That is good that your lungs, BP and heart all look good. Try to focus on the positive. I know that is easier said than done too. Take Care, and keep us posted. Barefut
  18. barefut

    Typical Age Of Dx?

    KellyAnn, I was diagnosed with sclero at age 40. My first symptoms were hair loss, flu-like aches, fatigue and positive ANA. 6 years later, Raynaud's. 1 year later what got me referral to rheumatologist was a new doctor :rolleyes: , as well as higher ANA, puffy hands, loss of range of motion in shoulders and hips and skin crawlies in addition to the continuing hair loss, aches and fatigue. I don't think I had any symptoms before my first pregnancy. I suspect my pregnancies were a trigger.
  19. barefut

    Barium Swallow Results

    Ssakar, Sorry to hear about all your frustrations with your doctor and his girls. I've been there, done that. :angry: Glad to hear you're feeling a bit better though. Also sorry to hear about the reason behind your new living arrangement. Maybe a blessing in disguise? Glad to hear you will be close to your parents. Hope they can be a comfort to you. Be Well! Love Barefut
  20. Wow, thanks for the acknowledgement Sakar. It's not so much how do I do the kid thing with scleroderma, as it is how I do the scleroderma thing with kids. I probably wouldn't even get out of bed (ever! ) if it weren't for my kids. They are what keeps me going. Again, thanks for thinking of us moms. You make me want to cry. :( And you've reminded me of a new topic I've had in the back of my mind for awhile now but I am too tired to post it now. Stay tuned..... Love, Barefut
  21. barefut

    No Stopping Me! Exciting News

    Congratulations Barbs! I applaud what you are doing. Don't even get me started on children's nutrition....I have fits when I visit my son at his lunch time in the school cafeteria. You wouldn't believe what the public schools in the US try to pass of as "healthy" ! Even though we qualify for reduced priced school lunches at only 40 cents a meal (and I can't pack a lunch for that price) I started packing my son's lunch for him because I was disgusted at the "food" I saw. And get this, the school thinks its doing a great service by offering breakfast but they serve junky sugary cereals and doughnuts! I was like......."Where's the FRUIT?!" Then I remembered, Oh yeah probably can't afford fresh fruit. But seriously, how hard would it be to put out some apples, bananas or oranges for pete's sake? I am not a nutritionist by any stretch of the imagination but it doesn't take a nutritionist to see garbage. If I had the time or energy right now, I'd be leading a crusade to completely overhaul the system. Well, I said don't get me started but there you go and do it anyway. :D I'm off on my tangent again. I wish I could listen to your program. Thanks for looking out for the kids! Have fun with your new career! Love, Barefut
  22. barefut


    Hi Jennifer, I don't know but I have always wondered the same thing. I was diagnosed with probable endo when I was in my late teens. I had horrific menstrual cramps that put me completely out of the game every month for 2 - 3 days and ended up in ER once it was so bad. doctor suggested I go on the birth control pill to aleviate symptoms and I felt cured! Then I had trouble getting pregnant in my early 30's. My doctor found some tissue growth around my fallopian tubes and removed it laporoscopically. He said I also had a twisted fallopian tube which he "straightened out". When I left his office he said, "No sex for 2 weeks." But when I returned for my post op 6 week checkup, I was already 5 weeks pregnant! :rolleyes: Sorry - a little off the subject there but had to tell the happy story. Anyway, when I thought I had lupus I wondered about a connection because there seemed to be a lot of people on The Lupus Site also with endo and asking the same questons. Now with my sclero diagnosis. I wonder even more. I wonder if endometriosis is or could be autoimmune? I learned that it could actually show up in places besides the uterus. I have heard of it being found in the GI tract. Well enough of my rambling. I hope your biopsy goes well and that you can get it done and over with soon - and that it's negative! Take Care, Barefut
  23. barefut

    Restless Legs

    Thanks for the link Heidi. I sure would like to know the science behind the bar of soap remedy! :blink: Anybody have any ideas? I guess I'll try it next time. Seems harmless enough and if it gets me to sleep well then I'll be singing the praises too. Barefut
  24. barefut

    Loose Teeth

    Well I did it! I finally went to the dentist. It's been two years.....AGH! I read a thread awhile ago about sclero and loose teeth. It seemed a lot of us experience this so I asked my DDS. He said my lose teeth were most likely caused by clenching and grinding at night because he also saw evidence of chips and cracks on my lower teeth. He said that maybe the tightening of the muscles and ligaments in the face may lead to the clenching at night which in turn leads to the loose teeth. He did say that he'd do a little research on sclero and also ask a colleague if he's ever run into it. I have to go back end of the month so I will let you know what he says. Looks like I'll have to wear a mouth guard at night :angry: Take Care All, Barefut
  25. Hi Janey, I have been on 2g Cellcept for just over a year. My PFT's have had only minor fluctuations with regard to my diffusion therefore my pulm doctor has deemed my lungs stable. All other aspects of my PFT's have always been normal. I have had no bad side effects to speak of. I have noticed less episodes of SOB since one year ago. I don't know how I can say if Cellcept has really helped to slow progression or not because maybe I would have remained the same without it? Better safe than sorry though I guess. And also who's to say that another drug might have done the same thing or maybe even better things? I don't envy you in the decision you have to make. My pulm doctor didn't give me the choice. I feel like I must be part of their secret study because they don't want me to switch to anything less expensive either. (Maybe THEY could pay for it! ) When I asked about switching to something more affordable both rheumatologist and pulm doctor were very persuasive about staying on Cellcept because as rheumatologist put it, although there haven't been any official studies, they "have had some very positive results with the 13 scleroderma patients that they are seeing who have been taking Cellcept." Wish I knew the difference between Cellcept and Imuran and any other immunosuppressants. If they are all supposed to do the same thing then why would one be better than aonther? Hope this helps you a little in your decision. Good Luck, Barefut