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Thread: Worst things about having Wegener's granulomatosis

  1. #11
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    45. Fear of fractures due to bone loss from prednisone. Fear of falling cause you will break like an egg. Fear of going out in icy or wet weather for this reason.
    46. Knowing your big outing today will be a trip to pharmacist or lab for blood draw.

    rephrase of 41--hearing people tell you that you look good when you feel like crap.
    Last edited by drz; 03-13-2011 at 10:08 AM.

  2. #12
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    45. Not feeling so "special" about having such a rare disease.
    46. Trying to stay on top of all the new changes and treatments for the disease (this forum helps greatly!).
    47. Wondering who will take care of your family if the treatments don't help or work.
    48. Feelings of despair at having an incurable disease.
    49. Continually wondering when the next flare will come and how bad it will be.
    50. Trying to remain strong and positive for your family as they have never seen Dad sick before now.

  3. #13
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    51. playing disease top trumps with your nearest and dearest
    52. trading pred like they were sweets with my mum!
    53. Blood tests
    54. Nasal douching.
    55. trying to have a conversation with a normal person about what "crusting" is
    56. fighting to get the best treatment
    57. bitchy receptionists!
    "I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack

  4. #14
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    #41, either way, is a doozie.

    I like #45 too

    58. Keeping track of ALL the pills you have to take daily, and not forgetting a single one!
    59. Drinking so much water
    Nicole

  5. #15
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    60. Knowing that making a list like this might be the highlight of your day.

  6. #16
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    61. That it has once again become pretty much all I think about.

  7. #17
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    Gotta love 41....
    62. Driving somewhere and forgetting where you are going
    63.remembering what doc what day and what time
    64. Chewing on milk dud to keep my pred mouth in check while my brain catches up
    65.Filling my lovely pill box with the right meds for the right time of day
    66.Trying to explain to my kids why????????
    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!!

  8. #18
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    67. Drinking so much water to swallow the pills and then getting up 8-10 times a night to pee, which causes interrupted sleep, which causes my day to be hell!

  9. #19
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    68. Waking up in the morning feeling pretty good. Then, taking a shower uses up all the energy I thought I had.
    69. Knowing that all my co-workers are looking at me wondering why I've let myself go.

  10. #20
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    My latest...

    70. Having a tooth that needs to be extracted, but having the Wegs expert tell your periodontist that bone graft and implant will have to be delayed til your labs are better.
    71. Pred acne, pred puff, chemo hair loss and now a big hole in the mouth - so great for self-image/self-esteem.

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