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Thread: Young and have WG

  1. #1
    vdub's Avatar
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    Default Young and have WG

    I thought I would post this for all you 18 year olds... I saw this on the Vasc Foundation web site. The book was written by a young lady who got WG when she was 18 and is now 32. She tells of her life and how she dealt with the disease. The synopsis alone appears inspiring.

    Vasc Foundation Link
    Dx'ed Apr 2010 by PCP. Dx confirmed Feb 2011 by University of Utah Vasculitis Center. My Story E-mail: vdub at wegeners-gpa.com

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    Thanks for posting that vdub! Hard to read at times but a good indication of the "human spirit". WG (and the meds) is like taking the worst of "sickness, aging and adulthood" and throwing it at young person to experience all at once -- a crash course mentally and physically!

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    Very cool vdub, thanks for sharing. It sounds very good.
    Nicole

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    Reading her synopsis like she said is sort of like reliving part of a nightmare. I re-read what my family wrote about me on the Caring Bridge site they set up last spring when I was really ill and I had the same reactions. I wonder if we can get PTSD from our illnesses and treatment cause it was a pretty horrible nightmare experience at times. Does any one have flash back experiences or nightmares about their earlier treatment?

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    I think we can definitely get PTSD from this. My first therapist marveled that I hadn't. I attributed it to having been in therapy since I was dx'ed.

    I'm still having a lot of anxiety about the severe vertigo returning. It began a year ago by just turning over in bed. I was perfectly fine then went into such severe vertigo I wound up hospitalized for a week. I still have lingering vertigo that gets a worse if I lay on my left side much (that was the ear affected). It's always close to firing up. It was one of the worst things I've ever had and I've had some pretty bad stuff!

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    Thanks for the post vdub.
    Dale

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    I am just the transitioning/caretaker, and I can assure you, depression and PTSD are significant side effects for both the patient and caregiver. There is a phrase that I can not quote directly, but it basically states, 'we are only as happy as our least happy child'. That was certainly the case in my experience, and I assume it would apply to any significant other, and especially if one was the patient.

    Healthy coping skills are not taught by most physicians, and one has to search for answers on an individual basis. Good for you Sangye, for being engaged with a therapist from the start.

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