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Everything posted by razz

  1. Norma, I forgot to mention when I say I rest throughout the day, I mean actually lay down, put my feet up. Usually for an hour or more. Sometimes I fall asleep for a while. That's when I know I really needed a break. I just listen to my body. Taking vitamins should also help! Hugs, Razz :)
  2. Helen, I was flat footed before my diagnosis with scleroderma. After my diagnosis, I noticed problems with my feet almost immediately. It felt like I was walking on pebbles. I cannot walk barefooted outside or in my house. It is too painful. I usually wear cushioned socks or cushy slippers around the house. I haven't made an appointment with a podiatrist because at the hospital I go to, their podiatrist only sees diabetic patients. Finding comfortable shoes is also an ongoing problem. I did find a specialized shoe store that caters to people with foot problems and I was surpri
  3. Welcome Norma, I've come to know fatigue very well for the last going on 11 years. The best way for me to handle fatigue is to pace myself. I make sure I eat throughout the day to keep my metabolism up. Also I try to limit sweets and caffeine since this gives an immediate boost but then brings me down quickly too. I found eating fruits or juicing gives me an added burst of energy. Using the spoon theory, I figure how much energy an activity will consumme and limit a certain amount of time for that activity. Once the time allowed runs out I know it's time for me to stop, eat and re
  4. Soaring Eagle, This is an interesting thread because I had never heard of candy spray and magic mouthwash. Although I've never been diagnosed with sjogren's, I do notice my eyes are very dry by the end of the day and it's usually worse in the winter with the dry air. I don't however have dry mouth issues. I'm sorry to hear you've had such a rough time since July. I am hoping your doctor comes up with something to give you relief so you can enjoy your aunt's pecan pie. (That's one of my favorite pies too!) I am so glad everyone's given you such great information. Hugs
  5. Soaring Eagle, It’s never too late to contribute to any of our topics. I like how your gym doesn’t allow portable music devices to encourage friendships and how it’s a science-based program. I am also glad to hear there’s been noticeable improvement in your bone mass. That’s encouraging for those of us who have experienced bone loss. Thanks for sharing your exercise experience! Susie54, I agree water aerobic is relaxing and not so hard on the joints. I prefer stretching for a few minutes in the morning. It stretches the muscles and gets the joints moving. Some
  6. JohnJ, Sorry I'm late on responding to your post (I've had a busy week). I do want to welcome you to this amazing website where everyone is so encouraging and supportive. I must say I'm impressed with your upbeat outlook and how you're handling your symptoms. You have a great sense of humor and trust me when I say it will help you tremendously. I've had systemic scleroderma for ten years now. I still get Raynaud's in the cold so I make sure my hands are always covered with a good pair of gloves. I've been hearing that ski gloves are good. I'll have to look into that. I did lose a
  7. Whitney, That's a good question to ask whether I find myself catching colds or the flu. Even I wondered about that before taking this medication. Surprisingly, I haven't caught any colds or the flu nor have I become more susceptible to them. I usually get the flu vaccine as a preventive measure but last year I missed my shot and luckily didn't come down with anything. I do pay attention to whether someone is sick and avoid being around anyone I hear coughing or sneezing. Hope you're feeling better soon! :) Hugs, Razz
  8. Hey Shelley! I like the way you put things into perspective. I guess I am all that and then some! (I better be careful I think my head just doubled in size) Rich in spirit is something we can't put a price on. :D Thanks for making my day! Hugs, Rich, Famous & Beautiful Razz
  9. Thanks Shelley! You're right. Maybe the young lady thought I looked familiar from somewhere, perhaps my book. You made me realize how popular we can might be and not even know it. And I guess having a size zero is not a bad thing. People might want to know my secret. Next time I will borrow your suggestion! Now if I could only add rich to my signoff. Hugs, Famous and Beautiful, Razz :)
  10. Hi everyone! I never know where to post, so here I'm posting in the den. Yesterday I went to the grocery store to get a refund on a purchase I made. I'm standing in line and you know that feeling when someone behind you is staring at you. Well I had that feeling and I could see a figure from the corner of my eye, but I chose to ignore it. This is my first reaction. The manager was taking long with the lady in front of me. I could still feel the staring. Now I'm thinking it must be my 87 lb. frame and I wonder what I look like from behind. Hmmm. Now this person must be cur
  11. Whitney, I also take Cellcept and in my case it keeps the scleroderma from flaring up or progressing. I started with 1000 mg once a day and it wasn't working too well. My rheumatologist increased it to 1000 2x day and I've noticed an improvement. I hope your rheumatologist finds something that works for your morphea. You should express your concerns to your doctor and see what he recommends. When I wake up in the morning I never know what my energy level is going to be for the day. I know what you mean how all of a sudden the fatigue hits you like someone flips a switch. Whe
  12. Hi Danette, I was wondering if you found another doctor in Connecticut? In your earlier post you didn't have a good experience with your doctor at the UCONN and another member here also didn't have a good experience. Finding a good doctor is so important in getting diagnosed and starting treatment. Don't give up searching and keep asking questions. I hope your symptoms improve. You can also read our Raynaud's link for information and helpful tips. Take care, Razz
  13. Welcome Whitney, I am glad you found the courage to join our forum. It took me a long time before I finally joined a forum and I'm so glad I found this one. There are a few people here with morphea. I have systemic scleroderma and the information here has been so helpful. Every one here is so encouraging and supportive. Fatigue and pain is something we all have to deal with. Sometimes it's a matter of managing our time better and knowing when to take a break. Every day I have things to do since life does go on, so I prioritize (I usually write a list) and do what's most important
  14. Margaret, I hope you get to see your dermatologist sooner than March. You are a great mom to your son Gareth and we enjoy hearing how he's doing. Do keep us posted on your appointment results. Hugs, Razz
  15. Hi Snowbird, It's interesting how everyone's Raynaud's symptoms vary. My first experience with Raynaud's (at the time I didn't know that's what I had) was a few of my fingers would turn whitish in the cold. When they warmed up I would get the reddish color and then back to pink. As my systemic scleroderma progressed I noticed the Raynaud's would change to purple and blue. Even the bottoms of my feet would turn purplish blue. Once my sister even asked me what's wrong with your feet. When I see those color changes I know I need to get my hands warmed up right away. Piper, the fat
  16. Welcome Sarah A, Sorry to hear of your recent diagnosis. I am 49 now and was diagnosed with systemic scleroderma 10 years ago when my two daughters were 10 and 12 years old. I would encourage you to read our stories and links. This is the place with the most updated research, information and great support from fantastic people. Whenever you have questions or need to vent we'll be here for you. Take each day one day at a time. I agree with everyone to go ahead and train every day and run your marathon in February. We'll be rooting for you! Hugs, Razz
  17. Judy, This is a great article and a good question to ask ourselves. Is it possible? Absolutely. We can choose to focus on the positive side of things or turn a negative into a positive. It is work and requires practice. I've noticed (since I don't work) I've lost a sense of time. It doesn't have the meaning it did before or control my day like it used to. Thank you for finding this article. It is a great reminder of the blessings around us! :) Hugs, Razz
  18. Loyhargil, I do not have morphea or linear scleroderma but I did want to say welcome to our ISN family. Your story impressed me in how through the years you adapted and didn't let the symptoms of localized scleroderma rule your life, especially at such a young age. You are on the right track by researching and eventually seeing a rheumatologist. Hair loss and fatigue are common traits in autoimmune diseases. Once you've been seen by a rheumatologist and had testing done, hopefully you'll know for certain what you are experiencing. Also, congratulations on the birth of your son!
  19. Dear Lost, Has your wife been referred to therapy to help her sort out her feelings? Scleroderma affects everyone physically and psychologically. There are resources available to help her and yourself in dealing with these ongoing changes. Unfortunately, if she's turned to drinking, that can complicate an already difficult situation. If your wife is willing to speak to anyone about her fears and uncertainties, we would be glad to help her. She can personal message me anytime and I would gladly listen to her. Speaking from my own personal experience I also went into a deep depre
  20. Hi Nina Lynn, Sorry to hear you've been diagnosed with scleroderma. Early on my hair got dry, brittle and thinner. Even my eyebrows seemed to fall off. My most recent rheumatologist said it was okay to use Woman's Rogaine. He said I could even rub some rogaine on the eyebrow area. I didn't try it and instead pencil in eyebrows. This year my hair has improved some and I'm noticing it more now especially since I'm taking Cellcept and, after reading the comments here, realized it wasn't the shampoo that made my hair look thicker and shinier. I would give the rogaine a try. I ha
  21. Hi Lost, I am sorry to hear your best friend and wife has scleroderma which has affected her quality of life. Caregivers play such an important part in each of our lives, without them we would not be here. I know personally I wouldn't be here. Don't feel guilty for enjoying moments of well-being or having a good time with friends. You need to replenish and boost your energy and good feelings to be able to give positive energy back to your wife. A sense of well-being promotes healing, is contagious and keeps depression at bay. When you take care of yourself, then you can continue
  22. JJ, Every now and then we hear about a rheumatologist who does his homework and provides a great service to his patients by educating himself about scleroderma. Your rheumatologist is one of them. Systemic sclerosis sine scleroderma is one of the hardest to diagnose. Sorry to hear you have been officially diagnosed but your doctor sounds like he's going to do the best job he can. I agree this website has the most accurate and up to date information about scleroderma. Other websites even post links to our ISN medical information. I applaud Shelley Ensz and those involved with p
  23. Clementine, I also like Monopoly and Scrabble. Boggle and Sorry are good games too. Sweet, you'll have to give me the rules for "Wineoply", it sounds like my kind of game! Razz :)
  24. Janey, I haven't been to New Mexico but it's definitely on my places to go to list. My sister's been to Santa Fe and loved it. The State Fair and Balloon festival sound fantastic! Hope you have a great time! It seems autumn has its own special tastes, smells and festivals. I just love it! Razz
  25. JJ, I've been on Cellcept since February of this year. So far no adverse side effects or complaints. Since I'm only on two medications it would be easy to pinpoint if there was a problem with either. The other one I take is pain medication for my arthritic pain and I've been taking that for 10 years now. Also no side effects. Coincidentally my youngest brother has been taking Cellcept for his heart transpalnt procedure and he hasn't had any problems with the medication either. If anything the symptoms he does deal with are connected with his transplant and the other multiple me
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