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Thread: Prolonged Subglottal Stenosis

  1. #11
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    Nicole,
    thank you so much for your well wishes. I hope you can get your trach out soon! The trach itself really did not bother me, it was just the extra effort (I am lazy) it took to keep it cleaned and the effort I took in blinging it up, then there is the effort to explain myself to people when they stared.
    I was never informed of the stoma stent or collarless trach, that is something I would have jumped into had I been given the opportunity.
    I suppose, since mine was always meant to be temporary, they figured why tell me?
    I would love to say my pred use is done, but I am taking more pred than you are. Just changed from 15mg to 12 1/2 2 days ago. In two weeks I am going to 10mg and then my rhuemy told me I would stay there for a while. Honestly, If I had the choice I would keep the trach over the pred!
    But, that being said, I am thrilled to have my trach out and still haven't shut up! It is not that I couldn't talk with the trach, it is that I love talking without it! Or singing or shouting.
    I hope you continue to get along with your trach. If you want some blinging ideas, I would be glad to share. I sincerely hope you get to get yours out soon.
    I am very close to remission myself....so feeling great and knowing I am through with the ENT now helps my disposition. (I hate doctors and doctor visits.....especially waiting in the waiting room)
    Keep chatting with me if you want......I know what you are experiencing.
    LIsa Coffeelover

  2. #12
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    Nicole, I'm glad about your CANCA, i can't seem to shake mine. I would hope that your trach days ar numbered.
    Lisa, Row row your boat (its the only song that comes to my mind ) lovely to hear you sing
    Jolanta

  3. #13
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    How about singing "It's a beautiful day " by Sting or What a wonderful World by Louie Armstrong?
    Lisa

  4. #14
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    I can hear you sing even with my wonky ears LOL
    Jolanta

  5. #15
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    Joanta,
    I am presently in Colorado visiting and traveling. Thanks for inspiring me to travel. I felt so trapped by WG in so many ways and not traveling was driving me crazy. I am so glad you continued to encourage by example.
    Lisa

  6. #16
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    I am glad to have helped, I remember how hard it was those two years without traveling for me. Enjoy
    Jolanta

  7. #17
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    I'm happy for you Lisa. I'm glad you are able to travel. Did you drive out there? I love to travel myself, but I find it very tiring now that I have WG.

  8. #18
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    Colorado, ahhhhhh. Let your eyes soak up some gorgeous mountains, the endless trees, the big sky of the West... and then ship me some of it, would ya? So glad you're on the road again. Changing the scenery goes a long way towards feeling better.

  9. #19
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    It will take me three or more days to recover from my "pred" trip, but it was worth it! Oh the mountains were beautiful, the roads were smooth and the friends I met up with including my fellow Weggie was enlightening.

    Yes, Phil, I am tired and darn near depressed today (back at work) but this too shall pass.

    LIsa

  10. #20
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    Quote Originally Posted by coffeelover View Post
    It will take me three or more days to recover from my "pred" trip, but it was worth it! Oh the mountains were beautiful, the roads were smooth and the friends I met up with including my fellow Weggie was enlightening.

    Yes, Phil, I am tired and darn near depressed today (back at work) but this too shall pass.

    LIsa
    Lisa- Perhaps posting vacation photos in your WG Disease Support Forum album can take your mind off work. It's easy, though it took me some time to discover, then post my own silliness in it. Of course, this suggestion might seem insincere considering I'm drinking coffee from my "I don't care! I am retired!" mug, enjoying the morning air on my bare feet, and catching up on my postings! To use that abomination, lol!

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