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razz

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Everything posted by razz

  1. Thanks Amanda, It's the day after and everything went great! There was enough food ((popeye's) fried chicken, mostaccoili, scalloped potatoes, salad, atomic cake and tres leches cake). Oh, and of course plenty of beverages. The black and yellow streamers looked great and I did get the balloons, which my two daughters huffed and puffed to blow up. :blink: I hope my daughter downloads a picture or two for me and I'll upload one here. Today, I'll take it easy. There's some cleaning up but it's mostly throwing out the yellow table cloths and rearranging the dining room table. My poo
  2. Mando, Thank you for the compliment! I didn't realize how often I swallow in between talking until I watched the video. I had to gather my thoughts, press record and begin speaking without stopping. I admire teachers and lecturers for the work you do every day because it is not an easy job. It took me many years before I felt comfortable enough to share my experience. Now, I'm a veteran of scleroderma and I wear it like an old shoe. I did the same thing when I was still working, I didn't tell everyone what I had (only my two partners and my lieutenant). I wanted to keep it p
  3. Sam, Thanks for the offer. I'd have taken you up on it too. I'm surprised how everything's falling into place. My daughter's going to decorate and put the party favors together tonight. I can finally relax and take it easy. Can't wait for the fun to begin! Hugs, Razz
  4. Hello everyone! This year my youngest daughter, Megan asked me if we could have a party this year instead of going out to a restaurant to celebrate her birthday. She said we could invite a few people and put together a simple buffet style dinner. I said, Sure why not? I just realized my mind is not in sync with my body. They don't connect or agree when it comes time to do things. So this past week I've been cleaning, decluttering and moving things around that hadn't been moved for quite some time. I don't mind because my youngest hardly ever asks for anything and besides 21
  5. omaeva, Sounds like you've been busy! I loved my stay in Seattle and I must say the medical care at Virgina Mason Hospital was the best. Hope you connect with a good doctor. Hugs, Razz
  6. Amanda, Ouch! That does sound painful. :blink: Red, swollen and oozing pus, yes it does sound like an infected ulcer. PrinB and Lizzie both gave good recommendations. Call your rheumatologist's office and describe what you have so they could call in a prescription to your pharmacist, or they might even ask to see you right away. Whenever my fingers get that way I know it's an infection. It usually clears up after taking antibiotics. Speaking of sores, I have one right above my right index finger. I didn't realize that I had been using this finger to push open my garbage pa
  7. Barbara, You're a star in my book and we could use a standup comic! Maybe we could cure scleroderma with laughter. We'd laugh so hard scleroderma would pack its bags and leave town! Thanks Barbara (you're my hero). Hugs, Razz
  8. Sharon, I had hand and feet swelling early on. It felt like my feet were on fire. I even thought I would have to go to a bigger shoe size. I couldn't shake hands with anyone because I would cringe from the pain. I noticed the swelling was worse when I was physically active. If you can, take a break and put your legs up for a while. Hope your doctor was able to make a good recommendation. Hugs, Razz
  9. Hi Becky! When I was first diagnosed 10 years ago, I wanted to try cyclophosphamide but my doctor thought otherwise. It's use then was relatively new sort of like cellcept now. I believe back then it would have helped me tremendously because it is a strong and aggressive medication, works especially well on lung involvement. I would think its temporary use in the early stages is helpful. I'm taking cellcept right now to keep my condition stablized and haven't had any bad side affects. Cellcept turns off the autimmune system which is believed to stop the progression of scleroderma, and some pe
  10. Hi georgette, I've also heard that people do go into remission with scleroderma. Since everyone's symptoms and degree levels are different, the affects vary from person to person. My condition was very fast moving and aggressive. I was switching doctors and treatments every 6 months (thank goodness I live in a large city where I can do this) because no treatment would slow or stop the disease. By the time I had the stem cell transplant, I already had the full affects, contracted fingers, tightened skin and overall systemic involvement. I did undergo hand therapy my first two years,
  11. Sophiebun, Sorry to hear your vocal cords are affected. You should be able to go to any healthcare facility and not be limited to the local county hospital where the medical treatment is not up to par. You're right about that 20% out-of-pocket as a reason for having to choose between excellent treatment and substandard care. It shouldn't be that way. I do hope you find someone soon who can help you. I visited San Francisco back in my heyday. It really is a beautiful city with so much to see. I couldn't get over driving up and down the hills! It was a lot of fun and we took
  12. Princess B, I'm happy to hear your results show improvement from your baseline. I had my stem cell transplant 6/2000 and the improvements from the first two years was music to my ears. My lungs also got better. I'm excited for you and look forward to hearing more about your progress! Hugs, Razz
  13. Hi Lizzie! Your post couldn't have come at a better time, with the weather getting cold over here. I have what I call a bean bag. It's about 14in. x 8in. filled with great smelling herbs and beans. I put it in the microwave for 1 1/2 min., not more than 2 min and it comes out really toasty. I put my hands on it or tuck it under my blanket and get cozy on the sofa. I use it for my feet, neck, shoulders, even my head. My sister bought it for me at the mall. It stays toasty for a good half hour but it does the trick! I have a cat too. Sometimes while I'm lounging, she'll cra
  14. Hi Judy, I am glad to do this for myself and everyone. Scleroderma can be a lonely and isolating disease, but doing something about it helps me feel proactive and positive! You are so very welcomed! Hugs, Razz :)
  15. Hi Shelley, I think I will have a t-shirt made that says "As seen on CNN". You have a great idea here! I'm all for continuing to get the message out and bringing awareness to scleroderma. I also like how you posted the youtube link on the home page. Real cool! Susie, Thanks, I hope we get more future media publicity. I can wear my t-shirt at every scleroderma function. I know there's a health fair coming up in Chicago this winter where they have a scleroderma booth. I better get ready! Hugs, Razz :D
  16. Hi Shelley! I saw it too! It was a brief 2, maybe 3 sec. but at least my hands got in there. Wow can't beat that 3 seconds of fame! I was curious what the segment was about and how the tapes would get used. I'm glad we did the Youtube video. It was well worth it. Hugs, Razz
  17. Sam, Thanks, I never videotaped myself before but I did learn something new. And what better way to get the message out. Razz
  18. Jensue, You are most welcomed and you're absolutely right. It's bad enough to have some unknown disease with no cure, but to have something no one's even heard of makes for a double-edged sword. At my doctor's appointment with social security the doctor had never seen someone with my condition. Last year my rheumatologist asked if I would volunteer to be part of their annual medical school session where med. students would participate in diagnosing various rheumatory illnesses. It was a 3-hour session where about 10 groups of students, each lead by a rheumatologist, came into m
  19. All I can say is Wow! I honestly didn't realize the impact my video could have but am glad I made one! By putting a face on scleroderma and showing the full nature of its affects, I hope finally we'll get the attention we need and scleroderma won't be something people never heard of. Debonair Susie, A week in Hawaii sounds fantabulous! Let's all gooo! Whohooo. MaryfanPhilly, I feel right at home here because I know what I have and how I look is not unusual for us. Please do pass my video on to everyone. The more people who see it, the better for all of us! Lucy,
  20. Amanda, I'm usually the one who's good at doing something outrageous and ridiculous. I thought why not do it for my fellow sclerodermians. I'm glad to hear we have the hands in common and I'll wave to you from here even though you can't see me! :) Hugs, Razz
  21. Debonair Susie, I like challenges and trying something new. On the Youtube video I didn't realize how hard it is to remember everything and say it all at once. I kept doing retake after retake, then it was getting late, finally I settled on the last take. It was fun doing it though! Lizzie, Now you get to see what I look and sound like! Yikees! Wouldn't it be cool if we could all see and talk to each other? Margaret, You're absolutely right! I did realize later that you couldn't see my hands, only for a second or two. The CNN segment will most likely show my hands
  22. Thanks Shelley, Sheryl, Emmi and Nina Lynn. I would also encourage any one who is interested to make a video and submit it to ISN to bring the necessary attention to scleroderma. If you need assistance in downloading or tips on how to videotape, I would be glad to help you. This was the first time putting a video together. Thank you Shelley for all your great technical assistance! I'm looking forward to seeing other member's videos and hope everyone tunes in to see CNN's program on scleroderma! Hugs, Razz
  23. Kamlesh, You pose a good question and it is something I also wonder about. I would like to know where the 300,000 figure originated from. How was that number compiled and taken from what data. Also, I'm curious why it hasn't changed in the last 20 years? I believe that figure is outdated and a new census should be taken to accurately reflect how many people have scleroderma, in the US and all over the world. Celia, I also heard that there are more people affected with scleroderma than MS. Why does everyone know about MS and not scleroderma? Good questions! Hugs, Razz
  24. Loyhargil, Thanks for letting us know how your appointment went today. And, how fantastic is that to have a doctor recognize (and not a specialist) what you have, order the proper tests and tell you the fatigue is real! I am so happy that you found a good general practitioner. Hooray! Hugs, Razz
  25. georgette, My heart goes out to you and everyone who has had a bad experience with doctor(s) and some are even stuck with their current winner. The one doctor that bugged me was dr no. 2 who would greet me with a huge smile and say how are you? That was early on when my health was spiraling downward so fast I felt like I was on a plane going nose down at a high rate of speed. I wanted to say My dearest doctor, I am dying while you are nonchalantly treating my disease like I have a bad cold. How do you think I'm doing? After 6 months of his monthly cheshire cat greetings I had to move
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