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Everything posted by Karenlee

  1. Karenlee

    Update on Skin Graft

    Haha I like the way you think Tru :D I deduct a year for every bad boyfriend I ever had so I think I turned 12 last year :P
  2. Karenlee


    [email protected] Margaret! :P That one sounds the best yet. Well from reading this thread I've been guilty of mis pronouncing it as well. I've always pronounced it literally as it's spelled with the d.
  3. Karenlee

    Update on Skin Graft

    Hi Tru, First off, don't apologize for feeling down, you have every right to those feelings. I'm glad they are letting you back on the Nexium. No one should have to suffer with that kind of burning pain on top of what you are dealing with. You told me your birthday (and in my brain fog I forgot the day), so please let us know the day and we'll have a virtual birthday party! Is it today? I really hope you get those hives under control. I'm sending you good healing vibes (((()))))) Karen
  4. Karenlee

    Old Friends

    Barbara, What a wild story! What are the odds of that happening? Slim to none. Makes you think that certain people come into our lives for a reason and that meetings are not so random after all. As much as this disorder (I dont like the word disease) freaks me out, I think of the awesome people on here I never would have even known existed. All incredible people in their own ways. Thanks for sharing that story. Karen
  5. Karenlee

    Update on Skin Graft

    Linda, Sorry to hear about the infection on top already having to deal with the hives. Please do keep us posted. I'll be thinking about you. Karen PS: Feel free to email me if you want to talk.
  6. Karenlee

    Raynaud's Phenomenon

    Leslie, Sorry to hear you are suffering with your hands, I fully understand what you are going thru. My fingers/cuticles were constantly infected and I had bandages, creams, peroxide, etc. The whole gamut. Some tips that have helped me: 1. If you have to have your hands in water, use rubber gloves. I go thru a pair a week, but it's certainly worth it. 2. Keep you cuticles soft with a cuticle salve so they don't crack. That's the main culprit in getting the infections, so prevention is key. I have found one that works wonders (havent had an infection in weeks) so if you'd like the name, just send me a pm. 3. My dermatologist prescribed Alcortin A to rub in and around the cuticles, it prevents bacterial and fungal infections from developing and kills any bacteria that may have already gotten in. Hope this is of some help. Keep your hands soft and dry as much as possible. Karen
  7. Karenlee

    Are there different degrees of sclero?

    This is a hard question for me to answer but I'll give it my best try. At 18-19 my hair fell out. I had super dry skin and gained a ton of weight (I really didn't eat that much). Tired all the time and constipated. Started having the absolute worst panick attacks, I mean to the point where I couldn't leave my appartment and lost 10 lbs from vomiting out of sheer fear and terror. I was tested for my thyroid a few times which came back "normal" so I just figured it was what it was and blamed it on bad genetics. Finally in my late 20's I was tested again for my thyroid which was way low. Started meds for that and stayed pretty much stable for about 8 years or so. About 3-4 years ago the Raynauds started. That was around the time my mom got ill and had triple bypass (was home taking care of her and working full time). Then my Dad was diagnosed with Alzheimers and Parkinsons. (theres a point I'm getting to with this). While he was ill I did notice the inflamation and red speckles on my face but wasn't really focused on myself at the time. Didn't have the time to actually. My point is, I do think that this disease can be exaserbated (sp?) by stress if you are pre disposed to it. When my dad passed away it really took a toll on me. I was urged to see a rhumetologist/dermatologist which I put off for about a year when I was finally diagnosed with CREST variant without the C and UCTD. I do have some skin involvement, but all tests so far show no internal involvement. Sorry for such a long blather but these are the peices of the puzzle that are just starting to come together to make a picture. In theory I've been dealing with autoimmune issues since my teens and I am now (gasp) 41. Karen
  8. Karenlee

    bath oils and creams

    Linda lou, I will pm you for the name brand. For my hands I use a good thick hand cream, then do a parafin dip. Works wonders for the skin on your hands and I use a cuticle balm that helps with cracking and preventing infection. I'll give you the name brand as well if you'd like. Karen
  9. Karenlee


    Barbara, Get out! Your tounge? I have to say that's a first. I do get attacks in the summer too but it's not that bad unless of course I'm in A/C, so I think instead of adding yet another medication to the littany of ones I'm on now, I'll wait it out until the Fall. I've also noticed since I am no longer working in an office, my fingers arent as messed up from infections and sores etc. I guess keeping the Raynauds under somewhat control and not slicing my skin open with papercuts and mangling my cuticles has helped. If the Plaquenil doesn't help by the fall then I'll try the Viagra I suppose. Lol Karen
  10. Karenlee

    Losing it!

    Linda lou, Thats great that you got out with your mom and had fun. It's a good idea to drop the illness from the conversation and just not focus on it 24/7. I can't really do that with my mom, its all she wants to talk about when we're together and it starts to make me more nervous than I already am. I know shes worried and means well but I can only handle her in small infrequent doses if ya get my drift :( Glad you didn't notice any black outfits in the room. I think I'll bring a garlic necklace with me next time Lol. The nurse that drew my blood had to write my name on all the vials she took and turned around and said to me "thank goodness you have a short last name" Hahaha! If I were still using my maiden name we would have been there all afternoon :D
  11. Karenlee

    Losing it!

    Just needed to get that out. I'm lost in a sea of doctors, appointments, tests, opinions and unanswered questions. I know you all know the feeling, and I'm not trying to say I have it worse or anything like that. I just needed to let that out. :( Anyway, it's a great feeling to know I can come here and whine to my friends. You are all awesome in your own ways and thanks for letting me get at least some of that off my chest. Karen
  12. Karenlee

    skin tightening process

    Hi luvbnmom3, Well since we all have different degrees of the condition it's hard to say, but I do beleive that Raynauds is normally confined to the fingers and toes. Absolutely I do have tendon issues, very stiff in the morning, somewhat better as the day goes on. Sclero would be tightening of the skin as you have described. Is this your primary doctor that mentioned the sclero? You may want to see someone that can evaluate you a bit more and run some tests. Maybe see a Rhumetologist if you haven't yet. Good luck and please keep us posted. Karen
  13. Karenlee

    Are there different degrees of sclero?

    Interesting point I wanted to bring up regarding remission. I saw my Rhumetologist last week for a follow up. I explained to him that hubby and I are considering going thru with the in-vitro process, and asked if I would have to come off of the Plaquenil, which I was concerned about since I've only been on 3 weeks and it hasnt been long enough to receive any benefits from it. He told me that I can stay on during the process, but when/if I do get pregnant that the disease will go into remission for the duration of the pregnancy. Interesting to say the least. I'd stay permanently pregnant if I could. Lol Karen
  14. Karenlee

    Back pain update

    Hi Celia, So, they ruled out the perforated stomach? Thank goodness for that. (whew!). I don't know for sure if the infection is sclero related, but my guess would be no. I did a search online and no where does it show kidney infections related to sclero. But of course you have to bring that up with your rheumatologist when you see him. Let us know how you are doing with the antibiotic and the infection. Karen
  15. Karenlee

    Endoscopy today.

    Hi mando, Sorry you had a rough time at the endo appt. I know the feeling about seeing and feeling your skin hardening, it's one of the most scary things one can imagine. But remember there are cases where it's only on the hands and does not spread to the rest of the body. My knuckles look like elephant trunks. That was a hard one to accept, but I figure if it doesn't spread, I can live with that. I have noticed some skin changes on my chin but I am in denial about that and trying really hard not to focus on it. It's understandable that you feel down and out. My fingers also swell pretty bad. As my 15 year old nephew so eloquently put it "your fingers look like sausages!". Well its true, they do, but that's not the end of the world. Take it one step at a time and try to stay optomistic. I know it's easy to say, yet hard to do, but try your best. Anytime you want to talk, please feel free to shoot me a message. Much love and warm squishy hugs!!! Karen
  16. Karenlee

    Left Leg Twitch *ugh*

    Peanut! The time is drawing near! I am sending you lots of hugs and positive vibes! I get twitches occasionally but nothing like you are describing. Most of the time it's in my eyelid of all places. Anyway, please keep us posted when you can. We are all thinking of you and wishing you the best!!! :) Karen
  17. Karenlee


    Sheryl, So glad to hear you didn't have another episode. Just keep taking them the way you are and hopefully that was the first and last time that'll happen. Karen
  18. Karenlee

    How have you made a friend?

    Sadie you little minx! Next time you meet a hottie, you'd better get his number :D
  19. Karenlee

    Losing it!

    Thanks Peggy. I am a kid at heart so it's fitting that cartoons mellow me out :P And yes, there are many things one can do to cheer up. I went and had a spa pedicure last week and it was amazing. The massage alone was well worth it. Not to mention having pretty pink toes :D I went and got my blood work overwith today. I counted 13 vials by the time they were done. I'm surprised there's any blood left in me now. You'd think Dracula had his way with me Lol Karen
  20. Karenlee


    Hey Tru, Well finally a nice side effect huh? Lol I think we deserve at least one thing that others wish they had :D Karen
  21. Karenlee

    About to start Gleevec trial

    Welcome Yaya. Like the others said, I have not had experience with the Gleevic trial, but some here have and I'm sure they will answer your questions. Good luck with the trial. Keep us all posted as to how you are doing. Karen
  22. Karenlee


    Linda lou, I noticed in your first post you said something about a permanent tan. It's funny you mention that because every time I go the doctor, and the nurses take my vitals, they always mention my skin being tan, asking where I went on vacation etc...which I have not since my honeymoon 2 years ago. Is this common with sclero? Tanned skin? Just wondering as I havent seen anything on this subj. Anyone have a similar experience? B) Karen
  23. Karenlee


    janey, are you bringing the "extra" ingreedient for the punch? :D
  24. Karenlee

    Curling Fingers

    When my rheumatologist gave me the script for the PT, he was asking me what areas I would like them to work on. So I said, hands, knees and back. I have no idea what to expect. Yet another adventure around the corner. Maybe/hopefully it will help with my flexibility. I'm wondering about the OT if I should reqeust a script for that? I guess I'll see what the PT does first and take it from there. My joints are sooooo inflamed I can barely move so until the plaquenil kicks in maybe the PT will help. Jefa, sounds like you found a great OT. She took the time too hand deliver a tool to your house! Very cool of her. :)
  25. Karenlee

    Losing it!

    Gidget: I am grateful that I have a crew of good doctors looking after me. I just have so many of them I can hardly keep up, but I'm managing. Even though I have each sending reports to eachother, (after repeat requests by phone to the NA's that assure me that they sent them, but had not) they all seem to be ordering ones that have already been done plus some new ones to boot. Again, this thread was just to blow off some steam and not to seem ungreatful. I am sorry you had a doctor that was un-interested in your care and just blew you off. I hope you have found a better doctor to take care of you. Every one of us here deserves the best care. smac: thanks for the advice. I was watching cartoons all night. I know it's juvenile but it takes me back to my young vibrant healthy days and I get lost in it :P And a big hug and thank you to everyone who posted. ((((HUGS)))) Karen