Karenlee

Members
  • Content count

    385
  • Joined

  • Last visited

Everything posted by Karenlee

  1. Hi barefut, Like everyone here, I'm sorry you are feeling down, but this is a great idea for a thread, For us to share things that perk us up. For me a nice pedicure helps. Also petting and cuddling with my mushy furball cat named Shelly. Music is good too. I crank my favorite music and just groove a bit. Hope it helps. Hugs to you!!! Karen
  2. Thanks for the info Jefa. It baffles me that they reccomend not adding any additional herbs, vitamins or minerals but then again this disorder baffles me as a whole. I bought carrots, apples and parsley to make a juice with in the morning. I'll let you guys know how it comes out. Karen
  3. Thanks everyone. I've been keeping a running list of questions (so many of them my head spins). I hope he stays patient with me, he seems like a decent doctor so I'm sure he won't have a problem with the barrage of questions. Part of me wants to know everything and part of me wants to stay blissfully ignorant out of fear although I am aware that is the coward in me talking. :(
  4. I like the way you think Barb...I'm always up for a snack :P Thanks for all your ideas everyone. Going to get mittens today and hand warmers.
  5. Hi Kelly, Sorry to hear you're under the weather on top of everything else that is going on with you. This has been a bad year for colds/flus. You may want to see your doctor regarding this since you do have lung issues. I had a bad flu that lasted at least a week, so maybe if you arent' feeling any better by tomorrow, schedule an appointment. It can't hurt. Discuss other options and explain your concerns about antibiotics. Hope you feel better soon, and please keep us posted on how you are doing. Karen
  6. Hi Sam, I am glad to hear that you are healing up nicely. Good luck with the disability, keep us posted as to how it turns out. The weather here is still chilling me to the bone. 41 today and rainy so I've kept the heat cranked up in the house. With the oil prices going up the way they are, I try not to do it too much but sometimes you just have to. We just got 100 gallons on Monday and it was over $350. That lasts about a month if I'm careful. Stay well. Karen
  7. Suzannah, I have the same exact problem. I cannot bend enough to clip my nails, or even tie my shoes. The bow always ends up on the inside of the shoe because I can't bring my foot up far enough to get the laces tied on top. Great alternative to that is either velcro or slip on boots. Karen
  8. Hi Bunky. Thanks for the advice. I will make sure to make a list and bring it with me. I plan on writing everything down that he tells me as well. My memory really seems to be on the fritz lately. Not sure if its because of the disease or the stress from being so preoccupied with thinking about the disease. Karen
  9. Kunrty, bust that parafin out! I am going this weekend to buy one as I have been told they are wonderful for joints and skin. Not to mention they make your hands soft.
  10. Thanks Margaret and Jensue. Now that you mention it, my Dad used to play golf (rain, shine, cold, hot lol) and he used to keep handwarmers in his front pockets so maybe I'll make a trip to the golf outlet. I'm also going to pick up some mittens. Spring is almost here! :)
  11. Hi Sadie. The only changes in my face so far are the red spots all over my face and chest. My skin is tightening up on my knuckles across both hands. I have noticed that my chest is starting to look "shiny" but my husband does not see it and thinks I am looking a bit too hard at myself, but I know my body. Since I lost all of my hair, a trip to the salon is out, but I do treat myself to a pedicure every now and then. The calf and foot massage is the best part, not to mention the massage chair. And pretty toes put a little pep in my step. Karen
  12. Hi all. I would like to touch on the topic of fertility. My husband and I have been trying to concieve for 2 years with no luck. I have been seeing my GYN and we went thru the gamut of tests (at this point I did not know I had CREST). My husbands sperm count was extremely low and he was categorized as sterile and we were told that Invitro would be our only hope. During an examination my GYN found a white patch on my upper back which prompted my visit to the Dermatologist/Rhumetologist and the diagnosis was made. I explained my situation regarding in-vitro to my Rhumetologist and he said not to waste my money because with CREST, implantation would be futile. :( My question is, has anyone here had problems with conception, and or was there any treatment that would help with implantation? I appreciate all your input. Thanks!! Karen
  13. Thank you all for sharing your stories with me. I must admit that if it were not for my husband and I trying to concieve I would not have been diagnosed with my illness as soon as I was so, I look at our troubles with fertility as having a purpose. If it's meant to be it will happen. I must first take care of myself and get a handle on what is happening to my body before I can even think of caring for a baby. Again, thanks to all for your input. Karen
  14. Thanks for the advice jefa. You are right, I should have really asked more questions. I didn't think a topical cream could have such side effects. Shows how much I know. And thank you for the links. I'm going to be much more careful with use in the future. Karen
  15. Well that made my mouth water. :P
  16. Hey everyone, thanks for the advice. Funny that mittens never even occured to me. I figured that gloves were better because each finger is covered, but you learn something new everyday on here. B) Karen
  17. Hello Mary and welcome to the forum. I am fairly new to the world of CREST and have not had my blood work results yet (I am due to find out next Wed), so I am sorry that I cannot answer your questions as of yet, but I still would like to welcome you and wish you the best. Karen
  18. Hello everyone. I was diagnosed with Hypothyroidism in my early-mid 20's. I am currently taking 175 mcg of Synthroid. I had lost 90% of my hair at a very young age. Since my Raynauds did not start until my mid 30's I am wondering if this is connected in some way, and if the thyroid issues were the beggining of my CREST? Wondering if any one else has had similar issues. Thanks for all your help and understanding. Karen
  19. Thanks Kelly. Too bad the connection wasn't made a bit earlier so maybe they could have done something to salvage my hair but now that I have CREST, hair is the least of my problems. I had gained loads of weight too (on top of losing my hair) and ate as much as my thin friends if not less. Fat and bald at 22 just sucked the self esteeem right out of me. I tried all kinds of diets and exersize but it was an uphill battle. Finally my body seemed to respond to cutting out carbohydrates.
  20. Hahaha! Thanks for the laugh barfut. Yes I would like some cheese to go with my whine. My dermatologist prescribed Dovonex cream for my hands and I have been rubbing it all over my hands and using a lot of it at a time. Now I am confused if this is just for the ulcerations? I thought it would be helpful for the hardening skin on my knuckles too so I have been furiously rubbing it in all over. Unfortunately I did not ask many questions when I went to see my dermatologist because I did not like the way he treated me and I just wanted to get out of there. Is anyone else familiiar with Dovonex? And if so, what are your recommendations? Much thanks!!! Karen
  21. Princess, that's great that your symptoms have subsided since your stem cell transplant!! Congradulations!! :) My fingers instantly blanch completely white down almost past the second knuckle. Eventually when they warm up they turn a bluish purple. My right middle finger seems to be worse than the other fingers. I read that you should treat each case of Raynauds flare up as a "medical emergency", which I did not for years. Now, I wear gloves everywhere and keep a heating pad in bed to lay over them. I've had people in stores ask me "Oh, is it that cold out today?" when they see me shopping with gloves on and it's 60 degrees out. I know it's not their fault because they don't understand but it can get annoying sometimes.
  22. Kelly, Sorry to hear you are struggling with the decision. I left my job in January 07. I worked in an office and it was destroying my hands. My fingers were constantly getting infected from paper cuts, or digging for files. At one point I could not even take dictation from my boss because my knuckles were cramping up when I tried to write and keep up with what he was having me write. Not to mention the air conditioning vent was directly above my desk making my Raynauds flare up constantly. I applied for disability and was sent to see one of their doctors who then needs to send a report of approval or denial. Thankfully I was approved. At that point I had no idea I had CREST. Just thought I had a bad case of Raynauds. I was finally approved about 6 months later and told to see a Rhumetologist which is when my journey began. I have a review for renewal in September. I do have to say being home full time after working for so many years is a difficult transition. Good luck to you in whatever you decide. Karen
  23. Hi Sadie, The same with me. I am right handed and the Scleroderma is more affected on my right hand. Karen
  24. Good luck Pamela. I really hope it works out for you and that your case worker does the right thing by you. Let us know how it goes. Karen
  25. Oh Peggy, how I feel your pain about the thinning/loss of your hair. I had beautiful thick hair up until my early 20's. I tried just about everything there was to try, with no luck. My 2 sisters have beautiful thick heads of hair (too much if you ask me lol) and my friends and I would get ready to go out for the evening and I felt so unattractive and depressed. I looked like a female Bruce Willis. About 4 years ago I finally broke down and went to a hair salon that ordered a custom made human hair peice that is glued onto the scalp. It is virtually undetectable and I feel like a woman again. It is expensive (about 2K per peice) and you have to go back every 4-5 weeks to have it re-glued but I wouldnt have had peice of mind without it. It may not be for everyone, and I know it's a vanity issue, but in my mind it releived a lot of my self conciousness. Karen