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Everything posted by razz

  1. Oh my, I wandered in here and found this thread. I love all the ideas! I can add a few. The ATM machines are easy to use, no trying to slide the card in. All the food packages are easy to open, especially jars. Now for the fantasy Sclerodermia. The sun is never too hot and it never rains. Our day starts with a knock on the door. Oh it's my chef, housekeeper, beautician and masseseur. My chef cooks me a healthy breakfast while I get my morning massage. There's another knock on the door! It's my neighbors, who offer to mow the lawn, wash my car and clean out my garage. Everyone
  2. John, I hope your mouth sore healed and you're back to feeling better! I used to constantly get canker sores making it difficult for me to eat. Then I read a book that mentioned eating nuts or chocolate will cause canker sores. I used to eat peanut butter and choc. candy bars pretty regular until I read this piece of info. As soon as I stopped, so did the sores. Razz
  3. Karen, I'm impressed with the advice everyone has given you and the many good points to consider. I'm aware of a couple of women withSD who became pregnant and gave birth to healthy babies. It's interesting how the SD went into remission during the pregnancies. I understand your desire to have a baby. It is a miraculous and joyful event! You do have to weigh your options. Can your husband help out so you don't get overwhelmed? Can someone come in and do your housekeeping and cooking while you get used to caring for your baby? Is your family available to help you? How stable is
  4. Leslie R, I forgot to mention before I developed SD, I was 5'3" and 150 pds. (Nice and plump). All together I lost 60 pds and even an inch in height. I would like to gain at least 30 pds! I'm sure there's some real nice clothes you can wear. I love all the summer pastels, bright white tops and above the knee shorts. You got a lot of helpful tips from everyone on variations of swim wear. I wear a t-shirt over my bathing suit or with shorts. It doesn't matter what other people think, but I bet your husband thinks you look great no matter what you wear! Sadie, I was even thi
  5. Gocartmoz, I already like the title, that's a good play on words of SD. The more people who write about SD, the better. This way scleroderma would become recognizable and maybe there would be more interest from researchers to find the cure. Either way I think writing your journal is a great idea! Susie54, It did take every bit of energy to fight this disease and combined with the fatigue it left me like a deflated balloon. I'm semi-inflated now. Jensue, I did go through a mean and nasty phase, but I knew it was the SD making me feel that way. I'm feeling more like mys
  6. Hi Leslie! I have problems finding clothes that look good on me too. Since I'm at 90 pds right now most tops hang on me like they do on the hanger. I also have vitiligo around my neck and upper chest, which I usually cover during the winter months but in the summer I want to stay cool. My arms are so thin (they look like tree branches) I keep them covered when I go out. I was thinking wouldn't it be nice if there was a make-over show that dealt with our challenges? I would love a make-over! I even sent one of the talk shows a suggestion about doing make-overs for us! Haven't he
  7. Hi Sam! I thought I recognized a familiar face! I'm a little nervous about releasing the book. I just want it to be good! If anything I know I speak from the heart. I mentioned to my rheumatologist. a while back about how I was writing this book and how I didn't think anyone would be interested or would want to read it. And, he said "I would." I thought "Wow, I better hurry up and finish it." He even edited my first draft, marked it up like crazy. When I see my proof copy, hopefully tomorrow, I'll be pressing the send button! It's not easy revealing personal info and sometimes I j
  8. Tru, You're so right, kids emulate what they see! It sounds like you've raised good sons and I'm sure you're proud of how they've turned out. Sometimes we can't see things for what they are and it takes someone else to point us in the right direction. One summer, I was on a tight budget and feeling broke. I mentioned to my young daughters that I didn't think we'd be taking a vacation that year. My oldest, 4 at the time, said "We do have money mom!" I said "We do?" The next thing I know she's dragging this glass wine gallon from the kitchen I had been putting pennies in (there wasn't
  9. Thanks for your comments Margaret, Peggy, Nan and Karenlee, There is a rainbow after so much perseverance! The qualifications for consideration for the SCT back then were: Have a diagnosis of systemic SD (w/internal involvement) 2 years or less, 45 years of age or less, have tried other treatments and a diagnosis from a rheumatologist. Now the requirements are not as stringent, i.e., it isn't necessary to have tried other medications or treatments and candidates are accepted withearly-stage systemic SD. It's worth looking into! Hopefully withtime, the costs will come down and ma
  10. Tru, I remember when I first got approved.....it was great! It took like 8 months and an appeal, becuz my doctor who filled out his section, thought it was a questionnaire for my insurance co. and wrote how great I was doing. We straightened that out real quick. Celebrate and treat yourself like a queen!!! Kids say the most honest things. They see right through everything! I love it! Razz
  11. Thanks Tru and KarenLee, I'll try joining in your chatroom sometime. I've never done chatroom stuff. The message board is also kinda new to me. As You can see how long I've had SD and this is the first time on this forum. I'm all thumbs (literally) when it comes to computers and it takes me a while to figure out stuff. I appreciate the invite --- who's bringing the donuts? Razz :rolleyes:
  12. In 1998 I was diagnosed with scleroderma. I was 37 years old, a single parent raising two young daughters ages 12 and 10. I experienced my first symptoms in the winter where my fingers would go numb and turn a pale color. Gradually, over the next few months, my fingers began to swell and it was very painful. I got diagnosed by a rheumatologist who knew immediately I had scleroderma. At the time I still looked normal, except for my swollen fingers and the burning sensation in my feet. I had an aggressive systemic form of scleroderma. Within six months I started losing weight at a rapid pac
  13. razz


    Suzie, I think about you and wonder how you're doing. I'm glad you keep everyone posted because you've become a special person to everyone who knows you. What struck me the most about you when I first read your threads was your kind disposition and it never waivered. You personal messaged me when I was feeling down and for that I am grateful. I hope you're getting the royal treatment because you deserve it!! Your friend, Razz :)
  14. The welcome here is phenomenal and I can see why people hang around here. I started reading some of the older posts and got lost in a den somewhere. That's where I found out you can log personal stuff, recipes and special hobbies. I'll figure out how this works so bear with me. Before I tell my story (in a new thread) I wanted to shout out to Sadie! Hey Sadie, I missed you and I am thrilled to hear you're in great spirits! You know I am the only Razz. I'm glad you knew it was me! Tru and Nina, this is a nice place to come to after a long day. I agree it is a safe and comfortin
  15. Smac, One of the treatments I had involved a holistic diet. No white flour, sugar, diary or deep fried foods. I ate lots of fruit, vegetables, brown rice, nuts, millet, organic chicken, fish (if organic is expensive, use regular) and filtered water (no soda pop). I started dropping weight real fast, my daughter too. One of her teachers asked her if she was okay, that's how well it works. Unfortunately for me, one of my issues withsclero was low weight so this exacerbated my problem. I had to go back to regular eating. It works for anyone trying to lose weight. I love bread too.
  16. Yfchoice, I see the respectfulness here and I love how the posts get screened before they appear on the board. Yeaaaa. Nope, I hadn't been posting. Just snoopin'. Now I'm a poster. I definitely look forward to being here for the long haul and adding some new friends. Yippee! I promise to tell my story but I couldn't hold back from saying howdy. Razz P.S. Age is just a number!
  17. You guys are terrific! Thanks for welcoming me. I think I'm gonna like it here. I hope I do fit in here because I like to laugh and I have a great sense of humor. You have to when you have scleroderma!? Nan, I think having a ramp is a great idea. Going up and down stairs used to be hard on me. Especially because my washer and dryer are downstairs and I have to carry my laundry basket up and down. I have more energy now than before but I still get worn out. When I first developed scleroderma I was tired all the time. Now I'm better but I still push myself. Like today, me and mom
  18. Thanks for the warm welcome you guys! Christy, hey I finally poked my nose in...it takes me a while before I feel I can dive in, but I did it! It's funny because I recommended this site to my pals, yet I held back. By the way the garden is coming along great. The tomato plants are about 2.5 feet tall. Today me and my mom are opening up the pool. Yikes! It might take us a while, my 73 yr. old mom is a very strong lady though and a great help to me. Hopefully if I survive this grand opening you all can come over and hang out! Truman, I can totally relate to your friend. It's not that I'm shy
  19. Hi everyone! I've been hanging around for a while and finally thought I'd take the plunge into your forum. The ISN forum was recommended to me by someone very special here and I see a few of my friends posted here. My name is Doris (I like to use Razz) and I've had systemic scleroderma for 10 years now. When I was first diagnosed with scleroderma, I had never heard of it before, nor did I have a clue what to expect. I am stubborn by nature, and it takes a lot to get me down, but I was determined to beat this thing called scleroderma. Boy, did I have a wake-up call. I went through
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