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barefut

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Everything posted by barefut

  1. barefut

    Prednisolone

    For me Prednisone is the drug I hate to love (rather than the drug I love to hate) I am only on 5mg daily and it has helped me a lot. I am afraid to go higher and afraid I will soon find that 5mg isn't doing it fot me anymore as I have already found on some days.....So then what? By the way....What is the difference between prednisone and prednisolone? B
  2. barefut

    I'm A Basket Case Right Now...

    Sam, I feel for you. You are going through one of the most frustrating, maddening things one can have to endure. To be at the mercy of others who are not in your shoes and they hold the power to either make your life easier or miserable. All I can say is hang in there and try to find time in your days to decompress. Soak in a hot tub, yoga, big fat margurita? (my favorite) ...Whatever will help you to relax, even if it is only for a little while. Venting is important too, so let 'er rip! We're here. Barefut
  3. barefut

    Leg Pain

    Susie, I was having pain in my legs too and was worried about blood clots because my pain was behind my knees but occasionally went down into my calf. my calves were also very tight all the time. I had lower extremity blood pressure tests done before and after a 5 minute treadmill walk and all was normal. Doc said to lay off the salt. So I have. Haven't had any pain like that in a long time but my calves are starting to tighten up again. I worry about your bruising. Keep us posted about what your doctors say. Barefut
  4. barefut

    I Went For A Walk!

    Yay Patty! That really IS an accomplishment! I was just at the mall the other day with my 5 year old son and there were a couple times I really didn't think I would make it back to the car. Had to cut my shopping trip short. My hips were killing me. And killed me all the way driving home even though I was sitting. 2 Alieve and 4 ibuprofen did no good. I was so tempted to pop a couple more preds or ask my friend recovering from cancer surgery for some of his pain meds! I remember walking Seattle's 3 mile Lupus walk and I was pretty proud of myself then too. Of course my sons and I finished last and my hips were killling me then too but hey, we finished! So anyway, way to go girl! Hope you can do it again sometime soon. Barefut
  5. barefut

    Hello/newbie

    Rachelle, Welcome. Sounds pretty painful! I had just what you describe, only on my right middle finger tip. It took months to heal. That was 3+ years ago (before sclero diagnosis) and I haven't had one since. I eventually got a metal finger brace and wrapped it up big to cushion the blows when I bumped it - and I bumped it a lot! Sounds like yours is in a hard place to protect though. Do you also have Raynaud's? I hope you find out soon what's going on and get some relief! Take Care Keep in touch, Barefut
  6. barefut

    Barium Swallow

    Glad to hear it went well Patti. I had one last month and all was well for me too. Take Care, Barefut
  7. barefut

    A Little Sadness In My Life

    Whirlaway, So sorry to hear about your friend. May your precious memories of her fill the empty space in your heart. Be Well, Love, Barefut
  8. barefut

    My Disability Parking Placard

    Jen, I agree with Bookworm. If it were me, I would write a letter to the opinion forum/editor of your local paper and set the record straight. It would make me feel better and educate a lot of people. Maybe it would make you feel better. I also agree with Janey. Sounds like you need a break from sclero stuff and the other stuff that has you in the rough patch right now. Escaping to the serenity of nature does it for me too. Doesn't solve any problems but is a nice break, a breath of fresh air so I can go back and tackle what I need to. Big hugs to you! You have been so supportive to me! I am here to return the favor whenever you need a shoulder! Take Care, Love, Barefut
  9. barefut

    Pure Agony

    Yay Barbs! I don't know why but I am crying. I think because your telling of it puts me there and I am thinking of all you are going through right now. Good job woman! That's pretty brave going that route. Glad it was over quick and that you have a nifty new button. Take it easy, Barefut
  10. barefut

    Trigger

    I suspect stress and pregnancy.
  11. barefut

    New Pains

    I've been having sharp pains in my upper and lower abdomen - like needles poking me inside. Anybody else? What could this be? I'll be calling gastro doctor but wanted to run it by y'all too. Thanks, Barefut
  12. barefut

    Medications

    Hi Lynda, I have taken Cellcept for about a year and a half now and at my last pulm. doc. visit he said my lungs have remained stable over the past year (at 70% diffusion). I take 5mg Prednisone daily but would not want to go any higher. The pred helps me a lot in getting through my days. Did your doctor mention any other medications to you? I wonder why he has not started you on Cellcept or Cytoxin but went straight to the Pred? I'm not a doctor of course but I have never heard of Prednisone being used to slow progression usually immunosuppressants are used to slow progression. Prednisone would be used to reduce inflammation....and it helps a lot with my range of motion and mobility. Good luck to you and I'm sure you will be feeling better soon! Take Care and keep us posted, Barefut
  13. barefut

    The Brick Wall

    Was feeling extra tired yesterday. Thought a good night's sleep would fix it. WRONG! Woke up feeling like I was hit by a bus. To make matters worse, my son's 5th birthday party is scheduled for here at my messy, cluttered, dusty house tomorrow at 1pm. I have not done a thing. I promised him a dirt bike cake. He may have to settle for a store bought one. I'm moving the party to a park but at the very least I have to prepare a fruit and a veggie tray and buy or bake a cake. Why does my body have to wait until something so important to do this to me? My whole week has followed Murphey's Law. I feel like a Murphey's Law Enforcer. Whatever can possibly go wrong - will. And it has. Of course I keep trying to ignore all those little annoyances this week like spilling my coffee at the restaurant right after my son spilled his water, not having the right screws for my project and stripping all the heads, tripping on the cord of the new drill I had to buy on credit because hubby took mine, having to rip open the box of my new hammock (I had to buy on credit because the dog chewed up my old favorite), because the thing would not slide out of the box, then dropping the wooden end of it on my ingrown toenail, only to find that it was a cheap piece of junk and I have to return it to the store 40 miles away in my gas guzzling kidmobile, without a box.......I could go on and on and on but I'll spare you. After awhile it becomes hard to ignore all those 'little' things. I was beginning to think I was on Candid Camera or that my life had become a cruel cartoon. And now my body hits the proverbial brick wall. I should have seen it coming.
  14. barefut

    Traumatic 24

    Oh Barbs, I will be thinking of you and your parents and sending get well wishes their way. Your "Traumatic 24" puts my "Murphey's Law Week" to shame! Do take care of yourself. If you have to go fall apart in private, go do it. Don't try to be everyone's rock. May your proceedure go off without a hitch and everything get back to normal for you all! Love, Barefut
  15. Very well spoken young woman! Good to have her as a spokesperson.
  16. barefut

    The Brick Wall

    Well, the party went very well. We had to use a picnic table by the basketball courts because the shelters were reserved so we had no shade and it was a VERY uncharacteristicly HOT day. BUT we had an intermitent breeze without which I would have suffered heat stroke, so I survived. I brought all manner of sports toys and just let them play while us grown ups sat and talked at the table. I put up my golf umbrella and held it over the table for awhile to help shade us and the food but I kept poking people in the head with it whenever the kids came up to me for something. So I gave it up before I put someone's eye out. My sister came in from out of town to help and she was a blessing as always! The kids had fun and so did the grown ups. I'll be having his party at the park for years to come! Party On! Barefut
  17. barefut

    Insomnia

    I too have had trouble sleeping due to all my aches and pains - can't sleep on sides because of hips, can't sleep on stomach because of back....now just sleep in recliner because of reflux. Tired Ami years and years ago but could not function at all - TOO sleepy. I started taking warm baths and stretching before I went to sleep - helped a little - also take a Tylenol PM or two now and then. I wait until I'm SO tired I fall asleep easily but my problem is waking up at 2 - 3 am and not getting back to sleep! I can sympathize.... Hope you find something to help soon. I never considered apnea as a possible cause withme. Hmmm. Good Luck, Barefut
  18. barefut

    Raynauds & Finger Sores

    Have you tried any topical pain relievers with Lidocaine. Works pretty good for my tender toes. It's hard to find. I can PM you the brand I found if you want. Take Care, Barefut
  19. barefut

    The Brick Wall

    Update: After I called everyone to change the location of the party, I looked at my messy house, loaded the kids into the car and ran away from home - to the beach! :D I was looking forward to a cat nap when my son's friend and his mom came strolling by. At first I was disappointed because I wasn't in the mood for company and I didn't want her to feel obligated to sit with me. I'm pretty sure she was feeling the same way. She said she was hot and tired from working in her garden and planned on taking a nap too. I told her to feel free to do what ever she wanted to do. She ended up sitting with me and we had a nice conversation and the kids enjoyed playing with each other. I came home feeling better and with enough energy to do the dishes and finish the fruit and veggie trays. I'll bake the cake in the morning (I hope!) Patty and Margaret, thanks for your encouragement and kind words. Kathygirl I love the jello jiggler idea! If I had time to make some I would! I'll still do it another time. My kids will freak if I started a jello fight with them! It WOULD be quite the memorable moment from a mom who touts proper manners while eating and no wasting food. They still talk about the pillow fight I started past bedtime that lasted 1/2 hour. They love it when mom breaks her own rules. *SIGH* Better get off towards bed. Big day tomorrow. Thanks again for the cyber hugs. Love, Barefut
  20. barefut

    I'm Not So Tough.

    Wow........ Thanks everyone! I'm sorry I let this post get to page two before I replied. I have read and re-read everyone's replies. You all always make me feel so much better! There is no way to thank you enough for that. I hope I have done the same for someone else out there. Love yous! Barefut
  21. barefut

    I'm Not So Tough.

    I have learned that you only need to scratch the surface of me to find out just how emotionally fragile I am. I am not sure I believe that the more I am dealt the stronger I get anymore. Instead I think the more fragile my shell becomes. It's all lying there just under the surface and it only takes a hand on my shoulder to release the floodgates of emotion that have built up. More than anything I feel insecure, unsure, alone, not safe. Walking on eggshells, living in a house of cards......and overwhelmed. Does anybody else ever feel the same way? Barefut
  22. barefut

    Telangiactasias

    Hi Jen, Sorry you are feeling depressed about your appearance. Don't discount it as trivial or feel like you're being vain or anything like that. Just because it isn't a life threatening priority doesn't mean it's not or shouldn't be a priority too. How we feel about our appearance is something we have to deal with every day and I know how easy it is to get depressed about a disapointing appearance! (Been there, doing that! :rolleyes: ) Hope you find a safe, easy, inexpensive fix soon! Love, Barefut
  23. 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.
  24. 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
  25. 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
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