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Posts posted by Karenlee

  1. Welcome to the forum Erin. I'm glad you found us and shared your story, although I'm sorry to hear that you're feeling so awful. I completely undestand your fear and frustration. Like Tru said, we are here for you. This is a family and it sure helps to have people that understand your fears, frustrations, and concerns. And good for some much needed laughs and comraderie too.


    Looking forward to getting to know you.




  2. Thanks Janey and Nina, yes it sure was nice to get some GOOD news for a change. It's been nothing but bad news since March and I'm so releived that my lungs are ok so far, especially since I used to smoke. That combined with the sclero had me worried out of my mind.


    I absolutely loved the technitian and told her if I ever have to come back for another PFT, she'd give it or I wouldn't do it Lol She said that things looked so good, sadly she wouldnt see me again. That made me smile. :)

  3. So basically it's sort of the same theory as nature vs. nurture. One can have a predisposition, but never become ill, where as another may have the same predisposition, and under the right (or wrong) circumstances become ill.


    It's interesting to ponder theory and read all the different accounts people have shared. Would be nice to know for sure one day. At least I hope so in my lifetime.

  4. Hi everyone...just got back from my test and first let me say that I couldn't have asked for a nicer technitian. What a doll! And we hit it off right away. She was very knowledgable re: CREST, Scleroderma so that was a good sign.

    She said my lung function was excellent and functioning at 100%. (well the reading said 101% but that doesn't make sense so I'll just go with 100).

    I have a follow up with the Pulmonologist next Friday for her to look at my CT scan and PFT test and I guess she will decide how often I have to go back for re testing.

    Anyway, thanks a bunch for all the support, you guys rock!!



  5. Razz,


    Funny, I kept my first reply short and sweet because it was getting really long winded and I was thinking of things as I was typing (sort of putting the puzzle together in my mind) and if I had kept going it would have been 3 pages long, so I'm going to try to breifly summarize here Lol


    Adolecence: Constant strep throat. Always on antibiotics. (doctors were arguing weather or not to remove my tonsils. Never had them removed)


    Between adolecense and early teens, extremely unhealthy family life. Very mentally toxic and damaging emotionally and very abusive.


    Early teens: Warts on hands. Family life worsened.


    Late teens: Anxiety/pannic/agoraphobia along with severe weight loss at first, then severe weight gain and loss of 80% of hair. Also skin dry like an alligator. (odd for a 17-18 year old).


    I lived with the weight and baldness for many years before finally getting diagnosed with hypothyroid in my mid to late 20's. Synthroid helped with the weight, but the hair never came back and even got a bit worse over time. (I attribute some of the hair loss to thyroid but most to autoimmune/lupus which was not diagnosed at the time).


    Late 30's developed Raynauds. My Dad was very ill and I was back and forth taking care of him while working full time at a high stress job. Also in the interum my mom had triple bypass and was taking care of her too.


    Got married at 39 and noticed the tanglestasias after I came back from my honeymoon but just chalked it up to too much sun on the cruise.


    Dad passed away December 2006. I felt like I lost the only link to sanity that I had left. I was lucky enough to be at his bedside when he passed, but I remember feeling like I was going to lose it right then and there. When we buried him, I tried to kneel down to put flowers down and could not bend at all. Completely stiff, so this is when the UCTD came on the scene. I just thought I was out of shape and needed to do some stretching or yoga. (yeah right lol)


    Work became unbearable as I was in a constant Raynauds attack and my cuticles were destroyed and infected. Writing became painful.


    After applying for disability I was told to see a Rhumetologist which is when I was told I had CREST variant, UCTD, autoimmune issues with lupus like antibodies. etc. Saw dermatologist to diagnosed scleroderma.


    So, that's a brief as I can possibly make it Lol Sorry if it's super long but it did start IMO when I was young. Just now it's taken a different turn.


    Thanks for listening. It was theraputic to put it down in sequence.



  6. Just wanted to know how many of you have ever had warts at any time before your diagnosis with any autoimmune issues you have. I forgot all about having them as a teenager until a couple of days ago and read that some types of warts are due to autoimmune issues. I had them on my hands when I was about 14-15 years old, so this could very well have been the beginning for me.


    Thanks for your input.


  7. Hi everyone. Well the 4th is closing in and just wanted to see what everyone was up to? My hubby has off tomorrow so we get a 3 day weekend which is awesome. A friend of ours has a boat that we plan on spending the day on (weather permitting, there's talk of thunderstorms). :D

  8. Boy am I glad to see this thread. I quit smoking June 23 and have been having this problem ever since. :( I read up on nicotine withdrawl and this is one of the symptoms since nicotine is a stimulant. The body eventually re-regulates itself after a few weeks but in the meantime I'm going to try the Miralax. Thanks for the suggestion everyone.



  9. Suzie, sorry I missed you Sunday. I would have came in the chat room but I was busy and I totally forgot about it. I'll make sure I'm on next time.


    Thinking of you all the time. Glad to hear you like your doctor. That's great.



  10. Razz and Christy,


    My Shelly does the same thing. She'll just flop down on the floor and roll around on her back like a dog. Funny though, she doesn't like it when we pet her on the tummy. Only her head and back. Lol



  11. Robin,


    I totally know how you feel. I was put on Prednisone when first diagnosed and felt hyper and loud. Also within that weeks time I felt like I gained a good 10 lbs. I had an allergic reaction to it and had to come off of it.


    I asked my hubby if I was acting different in any way, like angry or mean and he said no, just loud. Lol.



  12. After typing my reply over about 4 times, I'm going to simplify it by saying I do beleive stress/trauma is involved. There probably is a pre-disposition in there as well but definitely I feel in my case trauma was involved.



  13. Nah, we do know better. It's not lazyness, it's just that we are very deserving of these perks after all we go thru :D


    Oh, and in Sclerodermia there are movie theatres with no air conditioning :P

  14. Hi everyone,


    I am scheduled for a PFT test soon and don't know what to expect. Can you guys tell me what it is and what they do to you during it? I know it measures oxegyn but how? And how long does it take? I had a chest CT that showed no fibrosis or cancer, just 2 small 3mm nodules that I was assured thru 3 phone calls and 2 Dr visits was nothing to worry about. Gah! I'm scared.

    Any input would be appreciated.