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Thread: What is YOUR biggest trial with wegeners ?

  1. #1
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    Default What is YOUR biggest trial with wegeners ?

    I guess you could say i'm kinda doing a survey...altho in reality i think we could all be encouraged by seeing different aspects of struggle that this disease brings. I know for me in the last 2 months,realizing i'm not alone has been my biggest source of strength-thanks to all of you. So i know behind every screen there is a person with a past,AND a future. Just wondering your thoughts. How has wegeners impacted your life? for better or worse. It does come with both, at least for me. I was dxed young (16) and am now 30. I posted earlier that i'm not sure how i would've dealt with wegeners if i had already been established in my life. I learned to accept it as "me". I did'nt know another way. Yet, i've been so blessed. Having children when the dr tells you that you probably never will...WOW! I guess because this one feels like MY biggest blessing despite my wegs, it also carries the heaviest burden for me. Only in this aspect and i'm being very vulnorable. With tears in my eyes. I'm afraid of leaving my children without a mama someday. When they are too young to understand. They are 8 and 4. I begged God at thier birth to let me stay long enough that they remember me. Well....now i just want to stay long enough to remember thier children. Funny how that works,huh? WE are never satisfied are we ? This is something i think of alot...anyone else like me ? My children have learned at a very young age what sickness is. Visited me in a coma in the hospital ,altho they would'nt remember. They have learned to wash dishes when mama's sick...i guess it makes them stronger. My oldest son prays for me to get better. This is just the life they are use to. I'm rambling. Prednisone keeping me awake tonite so i decided to hang out with you all I dont want to be morbid or pesamistic (altho i do have that rep) -i more feel like we have to be realistic. So to end on that note-i have wegeners, BUT i'm planning to watch my grandchildren get married someday

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    For me, the crushing fatigue forced me to abandon a lot of my retirement plans to the point were I was beginning to sell some of my most prized possesions (my antique tractors). But after 4 years and a lot of pred I had a turn around and i'm close to being back on track, but 5 years late.s

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    For me it is the fact that with my lung function diminished and the constant fatigue, I'll never be able to be as active as I was. That crushes me daily. The other thing that is a part that I hate is the fact that we do not make many plans ahead of time because of where I am with the disease right now. I hate living day to day!!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    As many others I deal with fatigue and not being able to do what I could in the past. My biggest struggle is still having to keep the trach and hopefully someday I will be able to have that reversed. Thankful that I am in remission though!

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    My mom has MPA and the biggest struggle for me is her kidney function.
    However, as far as symptoms goes, the fatigue is the worst.

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    Right now, for me, is that I STILL feel miserable. Something isn't right and I am miserable.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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    My biggest struggle is fatigue, but if I pace myself I do well. I have a 4 and 6 yr old, and they too, are my biggest concern. They know as little as possible about my disease, but are frequently with me at lab draws and doc visits. My daily prayer is that I will be here until they are grown and on their own.

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    I guess my biggest trial is getting my weight and physique back to my pre-disease state. I've lost the pred pounds, but I still have more of a paunch than I want. I'm starting to do some weight/resistance training to rebuild muscle mass.

    Before disease onset, I never worried about my weight. I also never worried about (or paid attention to) my diet. Sigh...
    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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    Right now after 9 months of having this disease my biggest trail is fear of a flare. I just don't want this experience to start up again. I am learning how to handle just living with it in remission and the residue it has left. Flares are my nightmare!!

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    I used to play a lot of online poker, but pred messed up my concentration and short time memory. Its been over 1.5 years now, but maybe if I'm off the pred I'd be able to return to the same stakes I used to play. I at least thought I was getting better last summer when my Pred went down to 7.5mg / day, but then I had to take 80mg / day again in August.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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