Karenlee

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Everything posted by Karenlee

  1. Tangelo, Thanks for the updates. I've been thinking about Peanut and hoping she's recovering and doing well. Karen
  2. Thanks for the explination Gidget. I now understand what you mean about the bell curve and the waxing, waning etc. I just have to figure out what point I am at in that curve. I don't really know when to say I had skin involvement. When I was 19, is when my doctor said my immune system issues started ie: hair falling out, thyriod shutting down. It was not until about 3-4 (late 30's) years ago that the Raynauds started which is part of the CREST syndrome. About 2 years ago I noticed the tangs. on my face. The actual skin involvement started early this year. And the UCTD I noticed for the first time about 1.5 years ago, but not sure exactly when that started for sure. Sorry for rambling and babbling but it's a tricky puzzle to peice together. B) Either way, I am hoping that the Plaquenil will stall the disease if I am in the bad stage. Karen
  3. Peggy, Sorry your not having much luck with the IVIG. Let us know how the appointment goes on Monday when you have the numbers. Maybe they will have improved enough to get approval. I'm not familiar with that treatment, but it sounds like it's not something that's payable out of pocket? Margaret, Thanks for the kind words. Can you tell me how long it was before Gareth saw improvement on it? That's wonderful that he's improved so much. I'm very happy to hear that. Snowbird, Well I think the hump of depression and fear is subsiding. I wasn't the most joyful to be around for a few weeks there lol. (props to my husband for putting up with me). And as far as the baby situation is concerned, what will be will be. I need to get healthy first. Funny how all 3 doctors were butting heads over the situation for a while. And I was smack dab in the middle of it. Surprised I didn't just throw my hands up and say forget it Lol Again, thanks to all for your support and kindness. Karen
  4. Stape, Welcome to the forum. I am glad you are going to get on top of things right away. Early diagnosis seems to be the best line of defense. Good luck and keep us posted. Karen
  5. Hi Kelly, It's ok to whine. I think I've cornered the market on it lately, but now I'll let others take over for a while Lol I have pretty much exactly what you have described. Including the tangs, I have a white ring around my hair line with a long brown spot, like a line (I look like a character from Star Trek lol) running from the middle of my forehead down about 2 inches. Also have the dark upper lip which is really attractive. I am noticing the bleached areas are now also over each eyebrow. My doctor said the Plaquenil can cause "bleaching" on skin and hair. My arms, legs and trunk are abnormally tan, to the point that people ask "did you go away on vacation?". I'm noticing some small bleached spots on my legs but not too bad so far. Anyway, I understand how you feel, and yes, we are vain about our looks and to me that's perfectly normal. I use about a bucket load of makeup when I go out and if that's the way it has to be then, so be it. PS: My Dermatologist warned me not to try to "tan away" the tanglestias, wear loads of sunblock. Just thought I'd throw that out there. I think the sun aggravates it. Karen
  6. Tangelo, I am 41 too and I feel like I have the joints of an 80 year old. Stiff as a board. Poor hubby has to push me out of bed sometimes and pick up everything that I drop (which is a lot :P )as I can't bend down. I wonder too sometimes, if it's the disease or me getting older, or a combination of both. I've tried stretching exersizes, but so far I still have trouble even tying my shoes. I hope you feel better soon. Maybe it's just a passing flare? Love, Karen
  7. Our fishing buddy. He chased us for the leftover bait lol
  8. Greenport lighthouse from the boat
  9. Food! What else is there? (this is a crab avacado salad that I could have eaten a pallet full of)
  10. Sunset view
  11. Beautiful view from our balcony
  12. Thanks Christy. Yep, this medication requires a LOT of patience. And this is just the beginning. Some said 6-8 weeks, some said 3 months at least, and I've also heard as long as 1 year. Yikes! Tru, actually I just got back from my anniversary vacation. I did cheat one day and spenet a full 8 hours out on a charter boat in the blaring sun (I did slather sunblock on though). I know the doctor said no sun, but Oh,, I just had to enjoy the weather. So, what time did you say to be there for dinner? :D Sounds yummy. Karen
  13. Fancyface, Good luck on getting the regular disability. Have you applied for it yet? It can be a tedious process but well worth it, as financially it's a necessity if you are having trouble functioning at work. I went thru the process last year so if you have any questions please feel free to ask. Linda, Sounds like you got approved! That's great. Congradulations to you. I bet that helps you sleep better at night. :) Karen
  14. I have a question. When they say the 3-5 year period, that means of skin involvement. What is considered skin involvement? Tightening, thickening, pigment change? Does that include CREST symptoms? Sorry for sounding ignorant but it's confusing. B) Thanks Karen
  15. Hi Linda, Wow, that is awesome news that the morphea spots are gone! I'm so glad you've finally had something positive. Karen
  16. Hi Christy, Welcome. I was a regular member, but dissapeared for a bit so sorry for the late welcome. I'm so glad you found a competent Rheumatologist. That's priceless. I also have a cat, her name is Shelly and she keeps me smiling. Karen
  17. Hi Suzi, I'm thinking of you. I hope Sadie is keeping you company and making you laugh as she is so good at it. Not sure if you are accesing you emails but I sent you one the other day. PS: Shelly says hi :) Karen
  18. Hi Sadie, Glad you finally got some answers from the doctor, and he's going to start you on the antibiotics. I hope it helps, and you get releif soon! Hang in there! E mail me if you want to chat. Karen
  19. Can I jump for joy yet or is it too soon? Lol! Imagine a topical for Raynauds?? One less pill to take is always reason for cellebration. Let's hope they don't drag their nice warm feet on this one eh? :D
  20. Happy Mothers day to all the Moms on here. I wish you lots of love! Karen
  21. Hi Debra Welcome to the forum. I look forward to getting to know you. This is a wonderful place for information, support and venting. Karen
  22. Ced, I get the same thing with indentations, especially on my hands. Like if I'm bringing a bag of heavy groceries in the house, when I put the bag down I have an indent where the bag handle was. Also ya know the pillow lines you get on your face when you wake up? Lol! They stay like that for quite a while, so it can be an hour later but looks like I just rolled out of bed :P
  23. Sarah, Well what a way to start the week eh? Glad you were able to sleep a good full night. 11 hours! I'd kill for 11 hours straight :D Karen
  24. Sorry to hear about your fingers Colleen. I'm sorry I don't have any information for you but maybe one of the members here can help you. Karen
  25. Want to wish a Happy Birthday to Linda. Who's always there when you need her, is inspirational and strong, funny and just so cute! :D Happy Birthday girl! Let's bring on the cake!!!! Karen