Karenlee

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Everything posted by Karenlee

  1. Oh boy, sounds like I'd better watch myself. I have had weight issues already from Hypothyroidism, and now this. Thanks for sharing everyone.
  2. You go girl! That's great news. The squeaky wheel gets the oil. Congrats to you. :)
  3. Hi Sadie, I just recently started having issues since my rheumatologist told me no more coffee. Now things aren't quite moving along like they used to. I used to be very regular when I had my morning java but now not so good. I started having bran cereal every morning and drinking more water. Hope it helps. :(
  4. So is the weight gain because your metabolism slows down? Or does the appetite increase? I'm just curious so I can try to manage it if I can. Thanks
  5. Yaaaaay!! Sadie that's great news! Keep on keepin' on! ;)
  6. Hi all. I am going to my Rhumetologist next Wednesday for a consult on all of my testing that has been done over the last 2 weeks. So far I have had blood drawn, x-rays, and a doppler (sonogram) on my hands. My concern is that I will not ask the right questions, as in what type of CREST, what can I expect in the future, treatments, etc. I am asking for your advice on what to make sure I ask as I have a tendancy to not say much, and think on the way home "why didn't I ask....."??? "what did he mean by....???" etc. Any input you could give me would be greatly appreciated. Thanks!! Karen
  7. Tru, thanks for sharing your pics. Your dogs are soooo cute! Was that the Stanley Cup I saw? And who was that near it? If I ever figure out how to post pics (without my husbands help) I will put some up of my cat Shelly. She's the light of my life :)
  8. Best of luck to you TJ! Let us know how it went.
  9. Thanks everyone. Your input really helped with me taking notes and asking tons of questions. It's a great feeling to have you all to turn to :) I'll keep you updated as to how the meds are working.
  10. Ok well here goes. Unspecified connective tissue disorder with limited crest. I have REST without the C. They are starting me temporarily on Medrol for one month, until I see an eye specialist that has to give the ok to put me on Planequil Sulfate. Am also going to have a chest CT in the interum. My Scleroderma is limited as well. My rheumatologist said that when I do get on the Planequil, that it will take 6-8 weeks before I see/feel any results. He also thinks that the Dovonex that was prescribed by my dermatologist will not do much to improve the white spots. Karen
  11. Hi everyone. Well today is the big day. Thanks for all your suggestions regarding questions. I have 2 pages worth, so that should keep my rheumatologist nice and busy for a while I have a knot in my stomach this morning, dreading the outcome of the test results. Came pretty close to re-scheduling, but I think of my Dad when he was ill, and how brave he was. Went to every appointment and didn't complain, or look for pity. I am trying to pull from that and use him as inspiration although I have to admit it's pretty hard to do. Karen
  12. Hi Sadie, Frustration comes in abundance with what we are going thru. It's like a never ending puzzle that just keeps getting bigger and stranger at every turn. I understand your feelings and remember that venting is good. You have to let out what your feeling. Feel free to email me or message me if you want to talk. Karen
  13. Hi Karen I have really swollen hands, with some thickening on my knuckles although not shiny. The thickening is not tight per se. I see shiny skin on my chest, although my husband does not see it so not sure if that's me being paranoid or him being in denial. :P Hope this helps. Karen
  14. I'd like to add something else to the mix here. Laughter. A good comedy, no matter what makes you laugh. For example, I had been pretty down and scared for the last couple of weeks since this is all new to me and I'm still trying to wrap my brain around everything. So, I'm shuffling around my bedroom feeling sorry for myself and being mopey. I had the TV on in the background and Fraiser was on. I overheard a line that had me laughing until I had tears running down my face. When I finally composed myself I felt so much better inside and out. I think laughing has a physiological affect on the body so try to watch something that makes you laugh. :P
  15. Hi Bunky, Great news that you were able to get in with a specialist. Can you contact the specialist and ask what records the sclero doctor may want? This way you aren't running around in circles. (I know the feeling :( ). I would think any x rays, blood work, sonograms and if you've been to a dermatologist, any reports from that. Also any meds you may be on. Good luck!!!! Karen
  16. Lizzie that would be awesome to have a symptom that is finally NOT related to all this mess. Let us know what you find out from the "norms" :P
  17. Barefut, no I have not had a lip cramp. Just knuckles and feet. Oh catherinechaos !! Yes I do get that when I bend over. It feels like a muscle is popping out of place and I have to sit straight up to get it back in place and I can actually feel it move back. My husband was concerned when I told him about it but I just kind of blew it off, but now that you mention it, I'm thinking it may be Sclero related. I have an appointment with my Rhumetologist tomorrow, so I will mention it and let you know what he says. I'm sure he'll send me for some sort of test (sigh). Karen
  18. Alright Serena! Congrats and I know you'll be a great support to all on here. I'll probably still call you Barefut as my memory is shot, but either way congradulations :)
  19. Hi Karen, I have had bad reflux for over 2 years now. Long before I was diagnosed with CREST but now that I look back it did start around the time I was getting the spotty face. Like you, I just thought I was eating/drinking too much or the wrong things. Then I noticed it happened even when I didn't eat. I was chewing on Rolaids like my plane was going down. Finally I broke down and started taking Prilosec which really helped. Triggers for me are anything acidic like tomato sauce, any citrus juices, coffee. My Rhumetologist told me no more coffee which admittedly almost made my cry, but I have been weaning off of it slowly over the last 2 weeks replacing it with decaf. I hope this helps in some way. Good luck to you. Karen
  20. Just found this info on a website. Vitiligo causes white patches on your skin. It can also affect your eyes, mouth and nose. It occurs when the cells that give your skin its color are destroyed. No one knows what destroys them. It is more common in people with autoimmune diseases, and it might run in families.
  21. Janey that sounds yummy with the berries. I wil have to try that one next.
  22. Hi everyone...I have a question regarding raynauds episodes. I wear gloves pretty much everywhere. Sometimes even at home. Today I went grocery shopping with gloves on and still had a raynauds episode. Can anyone recommend a certain type of glove that is more effective like maybe a sports type glove that has a heating element in it? Has anyone seen something of the sort? Thanks!!! Karen
  23. All great suggestions guys! Thanks. I went out and bought a fleece steering wheel cover for my car. It looks silly but I tell ya, it's super warm and comfy. You know the steering wheel can make your hands cold even with gloves on, so this really helps.
  24. Hi LMS, I am in the early stages of "diagnosis" so many of your questions I cannot answer but am curious of as well. Your comment about the changes along your hairline that look like vitaligo caught my attention. I have the same thing but didn't pay much attention to it because I was so focused on the telangiactasia spots on my face. I thought I had just gotten too much sun on my honeymoon, but that was almost 2 years ago. Please let us know what you do find out about that. I am sorry I couldn't be of more help with your questions. My thoughts are with you during your journey. Karen
  25. Sorry to hear that Peanut! Wow, that must have really hurt. I'm praying for you and throwing all positive vibes your way. You will get that transplant!!! Stay positive. Karen