Friday, March 28, 2008

video


"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. 

3 Comments:

  1. lifeafterjasper 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...
    liberty99@dcsi.net.au 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!

    Cheers

    Tracey
    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.

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