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Everything posted by razz

  1. Dear rmm, I am sorry to hear your mom has had to deal with scleroderma and all the symptoms. In answer to your question, I had the privilege of undergoing an autologous stem cell transplant back in June of 2000. During that time and long before that, the stem cell transplant procedure was administered to cancer patients and proved to be successful and beneficial in battling cancer. In the 90's, doctors came up with the idea that this procedure could also benefit patients diagnosed with autoimmune diseases. The first SCOT trial was coordinated and began accepting their first gro
  2. How about soft comfty sofas, chairs and beds that are easy to get in and out of. All the furniture and household would be free from sharp corners and edges to keep us from bumping our knuckles and knees. An added feature, the house interior and furniture would be dust-proof, where dust would bounce off and float back outdoors. This place sounds like such a paradise even the healthy people would want to live here!! Hugs, Razz
  3. Barbara, I feel like it's a race to hurry back and forth from the house to the car, to the grocery store, appointments or having to shovel snow in shifts at 15 min. intervals, etc. I'm always doing a raynaud's check to see if and when my fingers have gone purple or blue. It's like a timer...okay time to get them warmed up, quick!! A change of weather and season always make the difference. Just yesterday, the sun came out in all its glory and I thought Great, a warmer and sunny day! I was lulled into believing the sun made a difference, until I stepped out and the wind chill was blo
  4. Lizzie, That's great news about your skin score improving!! I hope they figure out which medication was the source of this good news. Sorry to hear about the stress in your family and I hope that improves also. Keep us posted. Hugs, Razz
  5. Welcome KD, I'm sorry to hear you have SD and how your lifestyle has changed. I know the feeling of having to accept a different life style. For me, it took time, this board, education, adjustments and continuous monitoring of my health to find a level of comfort and a new (albeit different) "normal" life. How I approach each day and its challenges affects how I see my overall situation. Small minor accomplishments like running an errand, completing a chore or making a simple meal helps me realize if I take my time and use my energy sparingly, I can get through the day and feel g
  6. I dread whenever I sustain any type of injury because it takes so long to heal. I mostly get cuts, nicks or nasty bumps on my knuckles just from handling dishes, pots and pans or even chopping vegetables. If I try and move a heavy object like a chair, box or laundry basket, I end up banging my shins or bumping my knuckles :( trying to get through the doorways. As much as I take my time and use extra care it's unavoidable sometimes. The only good thing I can say, these injuries heal much faster :) than the ulcers I get, which lasts a long long time. Razz
  7. Hello everyone! I'm somewhere in the middle (Midwest) to the right of Susie wearing my extra thick warm mittens. Let's keep the chain of hope going.~~~ It's working, I can feel the warmth and gentle hugs going around. Great idea Janet! Virtual hugs, Razz
  8. Hi Lucy, Welcome to our forum! Your concerns and symptoms are also important no matter how minor you think they are. I am glad you found this website. Don't hesitate to ask questions or contribute. Everyone is here friendly and supportive. You mentioned how you are starting to have problems with your hand grip. There are stretching exercises for your hands and fingers which would be beneficial in keeping your hands flexible. You should see a physical or occupational therapist who can help you get started. I also experience dry eyes, usually by late evening my eyes are very dry
  9. Hi Jax, I am sorry you haven't been feeling well. I hope the heating blanket does a better job in keeping you warm and toasty. The only consolation I can give you is spring and summer are not too far away. The warm hot sun should help with warding off Raynaud's. I'm looking forward to the warmer days for that reason too! Are you using something for the dry itchy skin? A good lotion or cream applied every day should help relieve the itchiness. I agree bringing up these issues with your rheumatologist is a good idea so he/she can recommend medication for your skin and digesti
  10. Peggy, I hope the nodule showing up on your CT scan proves to be nothing serious. I completely understand how unnerving it is to have test results that say anything but "normal". If the pulmonologist and radiologist both agree that the nodule is small and you should wait six months to have it rechecked, perhaps it isn't something to worry about right now. I know it's hard to wait and see. Maybe they can recheck in three or four months instead. I will be hoping for the best outcome. Hugs, Razz
  11. Jefa, I love the sound of bagpipes! Congratulations on your promotion and thank you for your hard work and dedication to ISN!! :) Razz
  12. Debi, Welcome to our forum! Now that you've been officially diagnosed with scleroderma you've come to the right place for answers to your questions. Everyone here is very helpful. First I would suggest you find a qualified rheumatologist who specializes in scleroderma. Depending where you live in Illinois, you should be able to find one close to your home. If you still have any questions after checking our Scleroderma Experts listing, I would be glad to give you a few recommendations since I also live in Illinois. Your pain management doctor does not know a thing about sclerod
  13. Dave, Congratulations on the fantastic news! A zero skin score is the best results we've heard in quite a while. Thanks for giving us a Good News Day. Woohoo!! Hey guys make room for me in that conga line! Hugs, Razz
  14. Amanda, What an emotional roller coaster! To go from happy to concerned to worried and back to happy. Sounds like mischieveous Scler O Derma is at it again. I also wish those test results were easy to translate so we can figure out if a celebration is in order. I hope your doctor makes sense out of it and your results are within the normal range!! Keep us posted. My mom used to drop in when I was first diagnosed and check in on me too. Thank goodness for moms. Ready to nurse us at a moment's notice, armed with a cup of hot tea, chicken soup and vapor rub. Now that I'm
  15. Jeannie, I am so sorry to hear about your dear best friend. I'm here for you and will be sending healing thoughts your way. Your friend is very special to you as I'm sure you've both been through thick and thin together. Your support for your best friend will help her get through the rough times. Please give her a warm hug from me. You've always been supportive of everyone here, now we're here to support you. You can lean on me. Warm hugs, Razz
  16. Jeannie, I'm familiar with the slipper shuffle, I live in slippers. That's perfectly fine and will do. Don't let the other two dogs get too jealous! I had to go back and re-read your post with the 1800 miles. I thought it was a typo, you know an extra zero. Then I realized how far you had to go to get Christy. Wowww now that's what I call true love for border collies. I do recall smelling something in the air back then but I thought it was the oil refineries across the stateline. Nina, I agree we are a WILD bunch here! I think in my case it's a result of the med's
  17. Jeannie, What we do for the love of our pets a/k/a family. Oh nooo, poor Christy. I guess my trip wasn't so bad after all. I forgot to add, at the end of my day I was so relieved I did a tired version of the Scleroderma Happy Dance! Yeaaa!! Hugs, Razz
  18. Cindy, Welcome to our forum and congratulations on the new member to your family! Don't fret about being embarrassed to post here. Many of us are at varying stages and/or degrees of scleroderma and other symptoms. It is amazing that you got diagnosed right away and are now on the road to treatment. I hope you feel well and you can stalk as much as you want. We don't mind. (I didn't post right away either, but now you can't stop me!) Jill, I also wanted to welcome you to the forum. I sure could use a personal trainer to keep me going on my slow days! Even at my health
  19. Shelley, And the beat goes on...and the beat goes on... I had one of those if anything could go wrong day, it would yesterday. I woke up bright and early to take my dog to the groomers which is a good 1/2 hour drive. He has motion sickness, so I dread these grooming visits. I have to stop at least 2 to 3 times for him to puke out my driver side door. I finally make it there and while checking him in find out the visit is going to cost much more than I had planned on paying, because of some extra de-matting. I figure I can do the job myself and save a substantial amount. When
  20. Honey, It's amazing how we start out thinking our symptoms are the cause of one thing and then over time find out it is something entirely different than we imagined. I initially thought my first symptoms were arthritic which led me to make an appointment with a rheumatologist. That was ten years ago when I was diagnosed with systemic scleroderma. Thank goodness I didn't get the go around back then. Now I see a good doctor and take my med's like clockwork. (It also took me a while to get used to taking medications in the beginning.) You're right on track with discussing your tre
  21. smac0719, I keep laughing everytime I pull up this post. It has taken on a life of its own, the song, the dance, the bidding and imagining the contestants! It is all very funny and given me the boost I needed today. Shelley, I'll be trying out your granddaughter's Clean the Kitchen Happy Dance! While singing the song, cleaning and dancing, I'll bet my kitchen will sparkle like never. Penny, I loved your Scleroderma Happy Song! What a talented and creative group we have here! Laughing til my belly aches, Razz
  22. Penny, I can't believe I missed it! I had been waiting to catch the House episode on scleroderma and of all days to have a dinner engagement last night, I didn't get to see it. Maybe I'll catch it next time around. I'm always interested to see how scleroderma gets portrayed or explained. Any exposure is great! (Ditto to...it is not a death sentence!!) Razz
  23. Peggy, At last, you've found a doctor who truly cares for his patients and treats them with compassion and consideration. The whole team of doctors sound like they are coordinated and working together to give you the best treatment possible. I am especially glad to hear your PFT results were better than before and the Cellcept seems to be working! That's fantastic news! I've been battling fatigue these days also and I'm not sure why. It could be for various reasons, so I just take a lot of breaks. Hopefully others will chime in with ideas. I hope your condition continue
  24. Hi Nina, I hope you're feeling better these days. I know how it feels to be down in the slumps and nothing, not even good news perks you up. I thought I'd check in and say hi and I hope you're not in the doledrums any more. When I'm not feeling too swell and believe me if you could see through your computer, my hair sticking up in all directions still in my pajamas, you might laugh. And, if that didn't get a chuckle then imagine watching me running after my mischievious dog and cat while pulling up pants that don't fit me and fumbling with my phone. It's a typical day at my house.
  25. Barefut and Amanda, I agree wholeheartedly that Shelley being member number 1 should lead and be the number 1 happy dance! If I end up laughing at my own stiff dancing, then it has to be side-splittingly funny. Try and imagine the tinman (only very skinny) from the wizard of oz dancing, that's me. Razz
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