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  • Andrew Tribble
    March 20, 2012 - 15:37

    I too had a 'good job' before deing diagnosed with 'uncatigorised' vasculitis; there were about seven strains, at first....Now down to about five! I am also on dialysis, have been for about three years now. Anyway if Ican help, in any way, let me know. Best wishes Andrew T.

    • Blue Ink
      March 21, 2012 - 09:35

      Hi Andrew, a you in Newfoundland? For such a rare condition, there does appear to be more than usual out here. Feel free to sign up to Karen's new Facebook group if you are local. Never know, there might be a get together some day if there is enough local interest.

  • McRocket
    March 17, 2012 - 20:34

    I am really sorry you are going through this. I hope the outcome is better then everyone thinks.

  • Aunt Geraldine
    March 17, 2012 - 19:12

    Hey Karen my love, there's not a day goes by when I do not think about you, Leonard and the children! Wish I was could be there with you. Who would ever have known that YOU would be MY inspiration (:>)! Keep the faith, we are all standing behind you and pushing you along when you grow weary. All my love and prayers!!! Aunt Geraldine xxxoooo..............................

  • Ruby
    March 17, 2012 - 15:23

    I just read your story, and my prayers are with you also.God bless you.

  • Blue Ink
    March 17, 2012 - 14:53

    Ivan, I gather that you too have Wegener's? Me too by the way. Here is another great link for people who might be interested. http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/wegeners.asp It scared the beejezus out of me when I first read it in the hospital bed. Especially the part about life expectancy.

  • Starr
    March 17, 2012 - 14:42

    Karen Google The Juice Lady (Cherie Calbom). She has experienced miracles through juicing of fresh veggies and fruit, and of course eating them. Can't hurt and it is detoxing and healing. God bless.

    • Peter jackson
      March 19, 2012 - 10:11

      To Starr: Your heart is in the right place. Just want to emphasize though (as Karen already knows) that many fresh fruits are high in potassium and not recommended for patients experiencing kidney failure. Kidney disease is a catch-22 when it comes to nutrition, because many of the fresh, healthy foods we'd normally recommend are taboo for someone unable to filter the electrolytes through their kidneys. There are many websites out there that can help with maintaining a healthy diet for kidney patients. I might add that when I received my kidney transplant four years ago, the first thing I did was eat an orange and drink a can of tomato juice. Pure bliss, and something for Karen to look forward to.

  • Ivan Tucker
    March 17, 2012 - 12:47

    Karen,i just read your story,that hasn't finished,& probably never will.Your determination & mind set,will be the be the most important part of your recovery. Having gone through my own ordeal,that started in 2000,when at the time i lived,just outside of St. John's,& had my own business.my issues caused me to lose my business. I'm not about to make this my story,because having read what you have as a disease,it just bought back memories of the ordeals that "YOU",& your family have to try & overcome,are the bigger than any mountain,that is put before you.I so admire your tremendous will to not let this defeat you. It is at this point, harder on your family to deal with your illness,as the well persons,try so hard to say & do the right things,without fully knowing your inner pain.Throughout my illness.which is under control today after nearly eight years of treatment,i still incur side effects.I deal with these side effects,knowing i beat the illness,that could have taken my life.I always knew,no matter how bad my situation,there was always someone,worse off than myself. My prayers for you,are to beat this disease,& assume,as normal a life as you can.God Bless you (KAREN) along with your wonderful family & friends.I can also say with certainty,that there are hundreds.of people you will never know or meet,that are also saying there prayers for your recovery.Stories like yours,with self determination,believe it or not,also reaches out to people like myself,& gives me the strength to never give up,but hopefully give strength to others. Once more,take care & God Bless. PS-----my one wish,is someday,somehow,know that you are off dialysis.& you are up & about,& enjoying the life you so deserve.Ivan

  • RCollier
    March 17, 2012 - 10:15

    The NL Arthritis Society also provides support for this type of illness, which is actually a form of arthritis. They can offer information and support through their various types of programs and services,. You can also read more about the illness on their website at http://www.arthritis.ca/types%20of%20arthritis/Wegeners/default.asp?s=1 Good luck Karen, you seem to have gained control which is the first step of managing the disease and hopefully you will continue to become stronger and beat it!