What is YOUR biggest trial with wegeners ?

[im so blessed]

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 :) :)

[vdub]

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

[MikeG-2012]

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!!

[blu4runner]

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!

[mrtmeo]

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.

[NikkiNicole]

Right now, for me, is that I STILL feel miserable. Something isn't right and I am miserable.

[Ruotsi1]

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.

[Pete]

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...

[brew22]

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!!

[Wegetarian]

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.

[Alysia]

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.

[im so blessed]

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

[brew22]

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

[Alysia]

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.

[Jaha]

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.

[Psyborg]

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.

[Jayne 14]

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

[greenjeep]

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.

[Dkathleen]

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.

[greenjeep]

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.

[lag713]

My greatest challenges have been fatigue and stress (related to having the diagnosis and what it might mean in the future).

It's hard to make decisions that go against what you want but are best for your health. I decided not to travel across the globe on a family vacation to visit my brother because I knew the trip would be too hard on me. I developed asthma and migraines shortly after diagnosis and I knew the trip would be difficult to enjoy with asthma (out of breath with moderate activity) and trigger my migraines (need to go to a dark, quiet place for hours if not the rest of the day). I feel like I missed out but I know it was the right thing to do. I would have felt so guilty for spending so much money being there and being unable to enjoy it.

[Pierre42]

For me the hardest part of WG has been surfing the fringe of hypochondria. (I'm not "fine", I'm just asymptomatic)

Learning what is normal and what is "emergency ward worthy", learning to listen to what my biology is telling me.

It's the little things in life: early to bed, early to rise, stops the WG from screwing up our lives ....

Getting used to having a conversation which starts with "I caught the flu or something" and ends with "and it took 5 days in hospital with three different IV antibiotics, simultaneously - doctors with _really_ worried looks on their faces on the third day..."

... only last week a work colleague asked me how my weekend was: to which I replied "I got sick but I didn't end up needing to go to hospital - so it was a good weekend". (colleague spends the next 5 minutes popping their eyes back in)

[vdub]

Ah, Pierre, you really nailed it! I would usually quote one or two particularly good parts from a message, but your entire message, each paragraph is right on target. Those are issues I have had, too, but never quite expressed them in words.

I really like the first paragraph "surfing the fringes of hypochondria". No kidding! Every bump, every pain, every cough, sneeze, or wheeze is immediately a concern.

Very Good!!