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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.
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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
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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
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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.
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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!
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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
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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
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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.
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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.
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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.
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