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Thread: New Member ~ Phoenix, Az

  1. #11
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    Default Re: New Member ~ Phoenix, Az

    Hello Don and everyone!

    It has been a very long time since I have been on here but I think about this support chat all the time. The most un-exciting things I have been dealing with are surprisingly not Wegs! In March 2021 (for a 50th birthday surprise) I broke my right proximal humerus bone from a fall, followed by another fall in July 2022 and breaking my left distal radial/wrist and had surgery. I endured nearly a year of PT if you combine both. It's first time I have broken any bones in my life - just crazy! Oh and COVID twice in 2022! What! How I went all that time without, arghhh!

    In better news! Guess what I have been doing this week? I have seen/visited with Dr. Mertz/Rheum at Mayo Scottsdale who also referred me to Dr. Mendez/ENT Mayo Phoenix. I've had all my blood labs, CT of Sinuses, and the camera up my nose (flexible Nasopharyngoscopy). I am so thankful for this recommendation here because I have finally found the experts treating, with their vast knowledge and expertise, about Wegs! I deeply wish everyone could be treated by Mayo doctors. At this moment, I am not on methotrexate or prednisone - went off in Nov'21 and remaining symptom free! However, my blood labs did come back Monday positive for c-ANCA and PR3 and will see what Dr. Mertz thinks at my next visit in April. I am cautiously optimistic because you have all warned me this disease can be sneaky and I heard that loud and clear!

    If I have one thing to share it would be that if your Wegs is affecting your upper respiratory, you need to keep with an ENT doctor too, in addition to your Rheum doctor! The last time I had seen the ENT was in February 2018 and there are things they need to absolutely monitor for you that your Rheum doctor likely will not and I had no idea until now after visiting Mayo.

    I hope each of you are doing well. Keep doing the best you can and better each day.

    Thank you for having this support group because this week meant everything to me by getting to Mayo and the reassurance I needed from top medical experts. I am super thankful to you all.

    Peace and Blessings,
    Michelle
    Kind Regards,
    Michelle

    “No act of kindness, no matter how small, is ever wasted.”
    Aesop

  2. #12
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    Default Re: New Member ~ Phoenix, Az

    hahaha Peter! love this post and yes I know I am seeing it quite late. I did not hit 50lbs! it stayed just under at 49! sooo close! But I am back on track and encourage everyone to know just watch your calories and it can happen YES on Prednisone!

    I am also trying to be really cautious of skin cancer but apparently not well enough. I had another one this past December too - squamous cell carcinoma this time.
    How are you doing with your Wegs over in Queensland? When is your summer?

    Take care and I hope you are doing great!
    Kind Regards,
    Michelle

    “No act of kindness, no matter how small, is ever wasted.”
    Aesop

  3. #13
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    Default Re: New Member ~ Phoenix, Az

    Hi Pete! How are you doing? Still in Ohio? I hope your Wegs is remaining at bay!

    Take care!
    Kind Regards,
    Michelle

    “No act of kindness, no matter how small, is ever wasted.”
    Aesop

  4. #14
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    Default Re: New Member ~ Phoenix, Az

    Dr. Mertz is the best...always errs on the side of what's right for me at the time. I'm still with him and rheumatology at Mayo. It's kind of a 2nd home for me! Had 2 RTX shots, but he doesn't like or follow the idea that I need the shot every time my numbers creep up. He and his staff have kept GPA at bay for 12 years now. You're in very good hands for sure. Best to you! Oh, and stay upright!!! LOL
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  5. #15
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    Default Re: New Member ~ Phoenix, Az

    Quote Originally Posted by ShellLeighScott View Post
    Hi Pete! How are you doing? Still in Ohio? I hope your Wegs is remaining at bay!

    Take care!
    Still kickin’. My golf league starts in a few weeks. I’m looking forward to hackin’ with the geezers again. Wegs is pretty much dormant. Life is good!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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