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Everything posted by razz

  1. Peny, Ireland sounds dreamy! I hope there's a pot of gold in that scenario. I would say for me I would like to visit Hawaii. I would drink lots of pina coladas topped with one of those little umbrellas while lounging in a hammock. I would admire all the bright and colorful foliage and walk on the white and pink sandy beaches. Collect some shells and then watch a sunset. I'm packing! Razz
  2. Amanda, I'll admit I have a fear of anything that's computerized or has a mind of its own. With that in mind I am weary of stepping on my treadmill. There's so many buttons and flashing lights, like your ex brother-in-law I need to be careful. I was thinking of training my dog to walk on it since it's been cold out. But it wouldn't be fair to put him on the contraption first. You're right about my cat, she watches everything I do. I can imagine her saying "Now what is Ms. Lady up to?" I will definitely let you know how I fare and whether it helps. Smiling hugs, Razz
  3. Hi Amanda, It seems like I've been running on low energy lately too. I get tired faster when I'm up and about doing things like laundry (my washer and dryer are downstairs in my basement) or making dinner. Since the weather's been gloomy and cold, I stay indoors a lot more and don't go out for walks or work in my yard. I think in my case, the low activity level has a lot to do with my overall energy. I watched a program on TV about how exercise has been known to improve brain function in people with Alzheimer's and exercise helps people with MS, so I'm assuming it has to help sclero
  4. Janet, I agree that we've all experienced brain fog and personality changes. I had one doctor who acknowledged that the brain does become affected with scleroderma. So I guess besides being hardheaded, I also have a hardened brain. I know my personality has changed, like Amanda says, how could it not change aftering being diagnosed and having to live with an autoimmune disease. I've had people or family members say I've changed. Obviously they don't understand it's not easy accepting an autoimmune disease into your life. I've gone through all the emotions you can think of and set
  5. Shelley, Perhaps we can have Scleroderma Dancing for Awareness. Of course, I wouldn't want to be the only dancing participant in the spotlight. So, let's all polish our dancing shoes and come up with our Scleroderma Happy Dance! I'm going to start working on my dance techniques right away! I know there's plenty of other dancers out there. Come on everyone, join in! Besides making you feel good, it's fantastic exercise. I'm dancing the blues away, Razz
  6. Smac0719, I am thrilled that you are feeling better! When you don't notice feelings of fatigue or aches and pains as much as before that's great news. Shelley, Of all your many talents, you must also be a mind reader. I have wondered what the Scleroderma Happy Dance would look like. I have done my own version of it, with my skinny arms flailing about and kicking my legs back and forth. Although very few people have witnessed this scenario. I wonder if there's a Scleroderma Dance competition in the forecast? Hmmm. ^_^ LOL, Razz
  7. Welcome Lucy, This is a great place to vent or ask questions. Your doctor sounds like he's doing the right thing by ordering tests to find out what could be causing your symptoms. Try not to worry and keep your upbeat nature as much as possible. Some people experience Raynaud's symptoms and don't progress any further with other symptoms, or their symptoms even subside. If you can focus on the best case scenario while you undergo treatments and testing, this will produce less stress. (I have had systemic scleroderma since 1998 and staying upbeat is easier said than done, it d
  8. Hi Penypenybopeny, I like your enthusiasm and sense of humor, especially your "wheelchair" antics. I'm especially glad you found this forum of caring and supportive people who also find humor in our everyday life. I read the part on this post about your cute dog, where he's been trained to help you by picking up things and bringing them to you. How cute and helpful! I also have a dog, Tito, he's a Bichon Frise and I thought if I could train him to pick up things that fall to the floor I wouldn't have to find my reacher tool every time something falls. (I never realized how man
  9. Hi Nina Lynn, Sorry to hear you've had flu-like symptoms and other possible sclero-related ailments. I also had hot flashes a while back that were not menopausal-related, but very similar. The hot flashes would come on suddenly that I would check the thermostat in the house to see if it was the furnace running too long. Then the hot flashes would stop just as quickly as they started. This went on over a period of a few years. I'm not sure what caused them, possibly a hormonal imbalance since I'm not on hormones. (I plan on seeing an endocronologist to see if taking hormones will h
  10. Hi Tawanda, I'm glad you found this website too and I'd like to join in the welcome! You've been diagnosed and dealing with scleroderma at such an early age and I can only imagine how difficult it must have been, especially being so young. Even though I live in a large city, I rarely if ever, run into anyone who has scleroderma or is familiar with it. You've come to the right place! We are a huge family and everyone is so helpful, supportive and generous with sharing information. Even though you're not experiencing hardening of the skin, the other symptoms alone can take a toll
  11. Welcome Anderson! I have been taking Cellcept 1,000 mg a day since last February. I haven't experienced any bad side effects and it has kept scleroderma from progressing. The skin on my right arm has re-softened and loosened up. If I'm late taking my medication, I can feel the skin tightening on my arm. So I make sure I'm diligent about keeping my medication on schedule. Let us know how you're doing! Hugs, Razz
  12. MaryFanPhilly, Jeepers, I can understand your frustration! Nothing is ever cut and dried with autoimmune diseases. It's as if the initiator disease says hey everybody come on board. I do admire your unyielding persistance and determination to find out what you have and hopefully when you return from your trip you will find a noninvasive treatment. Your trip to California couldn't have come at a better time. I hope the warm sunshine :) and good companionship gives you a boost, mentally and physically! warm hugs, Razz
  13. Hi Lynne, First, I'd like to say welcome to our forum. I am sorry to hear you've encountered doctors who didn't treat you like a human being. It's a simple thing to ask for and doesn't cost anything. The doctor you're seeing now seems to have a good handle on your situation. I hope you start your light therapy right away. The people here are so helpful and supportive. No matter how you're feeling, you can come here and I guarantee you will be feeling better shortly. Everyone supports and encourages each other. We all have had our "off days" :( where for no reason we
  14. ohboyoklahoma, I think you hit on a great idea Amanda, velcro the baby to us, no problem. I was thinking of snuggly wrapping my grandbaby to your back or front with a shawl and then tie it around the shoulders, like in the old days. I like your ideas and sense of humor....so brilliant (maybe we could use syrup or honey instead of sticky glue). Warm hugs, Razz
  15. Amanda, I always wondered why they're called bouncing babies! Babies can be resilient despite all our fumbling. I hope my future grandchild is as hilarious and handsome as your nephew too. I too missed holding other people's babies because of my bent fingers and even understood when my nephew's wife let me hold her squirming baby just for a minute or two. Now I will be able to hold my own grandbaby without a time limit. I am a lucky ducky. And, if you lived nearby, I would find a way where you could hold my grandchild. :) That would be great! Hugs, Razz
  16. Jeannie, You made me blush :D ! Aww shucks. Thank goodness for that bag of magical make-up I don't go anywhere without. It works wonders. These days I'll take any compliment I can. By the way, thanks for the advice especially coming from a seasoned granny, I can use all the helpful tips you're able to pass along! I will look into diapers with the velcro strips. I figured that if I can shovel snow, push a lawnmower, trim bushes, power wash my car (even though I have to hang on to the hose for dear life), pump gas, etc., maybe I can try my hand on caring for a baby. He or she
  17. Hi Kiwi! I just found out recently my oldest daughter is expecting her first child. We are very excited especially since this is my first grandchild but I am also nervous too. My daughter has posed the possibility of my possibly providing child care and she even moved right around the corner from me. I have the curled fingers and I know how difficult it can be managing a task such as a meal. I'm sure with positive thinking I can handle the bottles, diaper changes and most of all the cuddling. Most likely I'll need a backup plan like an occasional drop-in from my mom. Either way
  18. Hi stef, You bring up a very good question. I was officially diagnosed 4/98 but I had been experiencing extreme fatigue for at least two years prior to my diagnosis. Even now when I look at pictures of myself during that time I can see the fatigue. I did wonder if I picked up a virus or bacterial infection along the way and never got the proper treatment. I had a lot of stress going on right before my diagnosis also, unhealthy diet, stressful job, insufficient sleep and rest, bought a fixer upper home and single parented a ten and twelve year old. When it was clear to me that I c
  19. I had never heard of a swallowing therapist and was surprised to hear such an occupation existed. I did notice when swallowing pills the difference when holding my head forward versus backward. Thanks for this new info. One thing for sure, with scleroderma I'm always learning something and I'm never bored! Hugs, Razz
  20. Welcome back Peanut! I joined during the time you were getting your stem cell transplant (which I also followed closely). I'm glad you're feeling better and your upbeat spirit never waivered throughout your treatment! You are loved by so many people here. May your health continue to improve with every passing day! Hugs, Razz
  21. Welcome Flower to our forum! I am sorry to hear you suffer from ischemic finger ulcers. I used to get ulcers on my finger knuckles frequently, they were all so painful and took a long time to heal. Just recently I developed a different type of sore right above my middle finger nail. The area appears red and clear with drying around the edges. I'm sure this is an ischemic ulcer which is quite different from the knuckle sores I used to get. I keep it covered with fabric bandaides and try not to get it wet. I will find out what my doctor recommends at my appointment next month. I h
  22. razz


    Hi Teresa, I have problems with cold feet (and hands) every winter! My feet don't burn but they do get numb where I can't even feel them. If I didn't look down and see them, I'd swear they were gone. Shelley's ideas are great for quick and long-term warming up. I try to stay indoors but even my house feels cold. So I take my pellet filled bean bag, put it in the microwave for 1 min. 50 secs. and either hold it until my hands warm up or put my feet on it. I hope you find everyone's ideas helpful! I will be sending warm thoughts your way! Hugs, Razz
  23. Hi Mia! I am so glad you found this forum! Everyone here is very helpful and supportive. It sounds like you have a full day on Friday with your test and appointment. What a great idea to make it a girl's day out. Your great attitude and sense of humor will go a long way in helping you deal with any unanswered questions. I hope your appointment goes well with your rheumatologist and the prognosis is good. Our first inclination is to find out as much as possible about a condition, but the volume of internet information on scleroderma and lupus can be overwhelming. Don't get caugh
  24. Thanks everyone for your kind words of support. I am never too far and still check in to see how my scleroderma friends are doing. I was feeling under the weather for a while and then I got the sad news this morning. I know I'll be fine. I am so grateful for you all being here for me and always supporting each other. Warmest Hugs, Razz
  25. Dear Friends, I have been doing a lot of introspective thinking lately, especially with the New Year. I'm not one to make resolutions. That type of thinking went out the door long ago. But I wonder what changes do I need to make to make my life better and happier? What can I do to help someone else? Then I received a phone call this morning. I saw it was my friend Donna's husband. I met Donna at one of many seminars I would attend in the Chicago area. Donna was lively and friendly even though she got around using a cane. She was diagnosed with scleroderma but didn't have all
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