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Thread: Worst things about having Wegener's granulomatosis

  1. #21
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    72. when you have to communicate with your dad about body functions colour, quantities, texture -- you get the picture

  2. #22
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    73 Not been able to see because of side effects of preds needing operations to correct
    74 The look on some people face when you tell them what you have and they ask , can anyone catch it !

  3. #23
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    (#41 has my top vote, too!)

    75. Being unable to sit in the sun because all the meds make you sunburn, and the heat makes you sicker
    76. Being unable to enjoy physical activities you did before--hiking, biking, snowshoeing
    77. How isolating it can be to have a chronic, rare disease
    78. Being the only one in your circle of friends who is sick
    79. Being unable to stand and talk for longer than 5 mins without heading for a chair.
    80. The chronic anxiety of having a disease that acts like a stealth attacker. Ninja disease.

  4. #24
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    herer s one
    kinda gross but o so true
    73.Finding blood in the toliet then trying to figure out where it is coming from as we think "oh crap..not again"...men have 2choices...most of us girls get 3.
    Want to see a miracle? Plant a word of love heartdeep in a person's life. Nuture it with a smile and a prayer and watch what happens...Never underestimate the power of the seed!

    My mojo for today.....gonna be johnny apple seed and just keep planting
    Lisa Marie
    The happiness of people is not necessarily to have the best of everything...but make the most of what you have!!

  5. #25
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    Quote Originally Posted by LisaMarie View Post
    herer s one
    kinda gross but o so true
    73.Finding blood in the toliet then trying to figure out where it is coming from as we think "oh crap..not again"...men have 2choices...most of us girls get 3.
    74. only having 2 chouices of where the blood is comming from because cytoxan took one of the 3 away from you.

  6. #26
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    75. Not being able to cuddle and comfort your four year old when she is feeling sick and asking for you because you're afraid that you'll catch what she has and wont be able to fight it or it will restrict you from getting your treatment. Then it ends up with both you and the four year old crying.

    76. Looking at people trying to figure out if you're a drug addict because of the colour of your face and the black circles around your eyes, and the thinning hair showing your white, sad looking scalp, but they're confused because you're nice, and smiling and seem pretty coherent.

  7. #27
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    Quote Originally Posted by marta View Post
    75. Not being able to cuddle and comfort your four year old when she is feeling sick and asking for you because you're afraid that you'll catch what she has and wont be able to fight it or it will restrict you from getting your treatment. Then it ends up with both you and the four year old crying.

    76. Looking at people trying to figure out if you're a drug addict because of the colour of your face and the black circles around your eyes, and the thinning hair showing your white, sad looking scalp, but they're confused because you're nice, and smiling and seem pretty coherent.
    Number 75 sounds like a real heart breaker. Can you do it with a germ mask and gown like they use in the hospitals? I would feel that would be something real important to try find a way around. I think that is probably the hardest thing I have read on this list so far and one I never thought considered before.

    My daughter and I did have the same concern when my grand children came to visit and being worried what would happen if they were ill or sick with something cause then we would have to cancel the visit.

    Number 76 could also be mistaken for AIDS victim too. I think most people think we have a form of cancer cause we take cancer meds too.

  8. #28
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    Face masks offer no protection from viruses at all. They only block some bacteria. The main thing they protect you from is droplets from sneezes and coughs.

    I'm so sorry for #75 Marta. I can't imagine how difficult that must be.

  9. #29
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    Watching your son suffer and praying to God that he will have a normal life.

  10. #30
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    Quote Originally Posted by jeriorleans View Post
    Watching your son suffer and praying to God that he will have a normal life.
    I'm feeling it big time. This is a tough thread for me to read.

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