Friday, March 28, 2008

"People have often asked me what do I mean when I say I have permanent laryngitis so today I thought I would give you an example. This is how I have sounded everyday for the past 4 years. As you can see, I can be pretty hard to understand."

Some days I sound worse than this. It starts like this; turns into an East Indian accent; then I start to sound like the Swedish Chef (a la Muppets) until finally it just sounds like gibberish. To communicate, I rely on e-mail and MSN and sometimes charades. Renzo has gotten pretty good at translating what I am trying to say but some days, even he can't figure it out. The 'pups have often needed him to translate what I am telling them to do. When I go out, I either make sure he is with me to do all the talking, or I make sure I have pen and paper to write it out. I even have laminated pieces of paper with my Tim's, Starbucks and shawarma orders on them (now if they would just get video drive thru's...). Occasionally, I will have a thoughtful clerk think I am hearing impaired and try to communicate with me in sign language. Unfortunately, I don't know sign language so this really isn't helpful but the thought was there. One of these days, I should learn it. But that would also require everyone who has regular "conversations" with me to know it too so I guess that really wouldn't be helpful either. 


  1. Anonymous said...
    wow, S, i had no idea that is what you sound like... if it weren't for the translation below the video, i doubt i would have picked up on much of what you said...

    i can't imagine how challenging this is for you and R... said...
    Hi Steph,

    I too have Juvenile RA, diagnosed however when I was 33! I consider myself lucky to have been well enough to get by without a diagnosis for so many years. I've been living with active RA now for almost 14 years, but what I now realise is that the laryngitis I get almost every year years is probably related to my RA. Here I thought it was just me talking too much! Probably is!
    You have endured waaaaay more than I could ever have imagined and your story has enlighten me, (and thought I knew a fair bit about RA after all these years!)

    Good luck in the battle and thanks for your inspirational story. Certainly makes me put my own battle into perspective!


    Anonymous said...
    I too was diagnosed at the age of 2. I am now 43 and have never been in remission. At 38 I had both knees replaced. Felt pretty good for a while, but now I am going through major setbacks throughout my entire body. I feel your pain and often feel like nobody understands me. I have had horrible hoarseness my entire life that nobody has been able to explain. I never knew RA could affect your voice. I will bring it up to my doctor for sure. I even had surgery to remove a nodule and was told by ENT it was a benign cyst. Now I am wondering. Thank you for sharing your story.
    Hannah Scott said...
    Wow, thank you so much for posting this! I read your story and know that you said you have damage, but I didn't fully understand.
    You are so brave and I'm sorry that you have had to go through so much.

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