User Tag List

Likes Likes:  0
Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 23

Thread: What is YOUR biggest trial with wegeners ?

  1. #11
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Having WG gave me the most pricelss treasure, the love of my life, my sweet beautiful Phil. I met him here at this Forum.
    I was so blessed to get to know him, to spend priceless times with him, to love him and to be loved by him, to make him happy, and to have so much joy just from being with him, to be inspired by his Batman's courage, to learn a lot from his Dr. Phil's wisdom, to take care of him, to fight for him..

    and WG brought me the biggest pain of my life, seeing my sweetie suffering, becoming more and more sick... being so helpless praying for his cure... seeing him dying untill the last min that God took him straight to heaven..

    more details are in the links in my signature.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  2. #12
    Join Date
    Nov 2014
    Location
    Central Pennsylvania
    Posts
    199
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    Dear Alysia, My heart bleeds for you. Truley of the people on here, wegeners has touched your life in a very deep deep way. It brought you to true love, and it stole him away. I am so sorry for your loss. words cannot even touch it. Ive read your post and many of Phils too since i joined in november. You seem so strong,altho i'm sure right now it does not feel that way. Please don't give up! When you lose someone so dear, time really is the only thing that can ease ur ache...but not take it away. You put things in perspective for those of us who are "just" fighting the disease. Dont be afraid to share the wisdom that you gain when you walk through trials like this. I've been praying for you, and i will keep on! -Blessed aka Amanda

  3. #13
    Join Date
    Aug 2014
    Location
    Okemos, MI
    Posts
    41
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Amanda what beautiful post.... for Alysea.. You are so right about her loss.. And Alysea please know that I have thought of you as well and although your story is a sad one the love you two had for each other is really amazing and wonderful that this forum brought you together if only for a short time. I will be sending healing thoughts to you. Yours Susie

  4. #14
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    thank you, from the bottom of my heart, Susie and Amanda for your kind words and caring.
    Phil's wisdom is all around here. also his great sense of humor and courage.
    you can learn a lot about wg just from reading his story.
    I know he is now helping "his weggies", like he used to call us, from above.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  5. #15
    Join Date
    Oct 2010
    Location
    Ohio
    Posts
    819
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default

    My biggest challenges are like others here have said, not being the very active person I once was. The fact that I had a lot of lung damage has still been a big issue with exhaustion. The constant rollercoaster ride with up and down on preds because of flares and trying every tx there is with no remission. I also can't ever make plans, because you don't know from day to day. I really try to keep positive and know that feeling this bad on a daily basis can't last forever. I will say that I have really gained a lot of great friends that I care about, from places like this forum and facebook groups. Also my husband of over 30 years and I have found a whole new kind of love. We try to enjoy what ever well time that I have and he's okay with that.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  6. #16
    Join Date
    Jul 2010
    Location
    Blacklick, Oh
    Posts
    1,399
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    I guess I'd say the biggest trial is predinisone. When i get low enough I seem to flare again. And now it's given me Osteoporosis, so now I'm stuck between trying to not flare and eating away at my bones.
    ~ Bob

  7. #17
    Join Date
    Mar 2014
    Posts
    199
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Accepting the new normal , admitting I have to slow down & do less is my biggest trial
    The weight gain is frustrating but my pred is going down as is my weight abit
    The odd saddle nose that people notice & sometimes ask about or not
    The fatigue is hard ,
    The length of treatment : it's a marathon not a sprint
    My biggest trial that I'm winning & will continue to win is , I'm still me . Wegners will not change me .
    Life is harder but still amazing & I'm living it


    Sent from my iPad using Tapatalk

  8. #18
    Join Date
    Mar 2013
    Posts
    119
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    I hate always wondering if the sensation I feel is a relapse or just sinusitis, or tired feet.
    I also hate that it totally changed my relationship with my daughter, now 11. She used to be daddy's girl. Now I'm too damn tired to give her the attention I used to. I think she sees me as a nuisance now sometimes.


    Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

  9. #19
    Join Date
    Dec 2014
    Location
    Colorado
    Posts
    17
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    It has been one year and two months since my diagnosis of MPA. I am in remission. I am able to work full time and my family is supportive.
    The fatigue is unbelievable!
    I am still learning Patience and The do nothing at all kind of rest. It is tough to feel vulnerable all the time.

  10. #20
    Join Date
    Mar 2013
    Posts
    119
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    I hate the "do nothing at all kind if rest" ... But need it oh so often. I feel so guilty when I vegg out.


    Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

Page 2 of 3 FirstFirst 123 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •