Quote Originally Posted by im so blessed View Post
I went to a new years eve party last night. I think the timing of me finding this forum was just perfect. I came home and cried my eyes out. I felt so isolated. Because of the flare im currently having and being on pred i actually ventured to talk about my wegeners. Very rare for me. I just didnt realize how "normal" ppl think i am. So the responses were just completely dead ended. No questions. No nothing. Stare and change of subject. My year was very hard. Of the years ive been sick the longest stretch of just plain hard. So i mention that and ppl are like "so what was so bad about it" umm......you all know the feeling im sure. So i told my husband i guess if i want ppl to understand me i have to act more sick. I never have. Ive always tried to keep up with my peers. You know...do everything anyone else does. If my friends plan a ski trip and invite us, well lets go! (didnt turn out too good) I have 2 kids and my group of friends are moms with young kids. So ive tried to be normal you know.BUT I AM NOT!!!!! I honestly think ive denied it. I think i'd do well to acknowledge my sickness, and live within its means. Stop pretending and maybe in the long run be further ahead. I also must realize that my current 40mg of pred is effecting my emotions. So just maybe this post is pointless. I dont know. Maybe someone will read it and put it back into perspective for me. I know i cant be alone in this. Not anymore
You are not alone! I feel the dame thing when someone asks me about my COPD Most time people ask if I am a smoker when they see my tank! I am a smoker but to explain that I lost my lungs with in a 2 week period, most people can't comprehend.

Its possible that they are young enough to believe they are bullet proof, I used to be until I got this crap!
I have had a person ask me early in my disease before I was dx, what my problem was that I could hardly move and I replied that I had arthritis and that was when I was only 54. I was subsequently dx with wegs and the treatment has taken care of most of the arthritis symptoms!
I just avoid those who I feel might doubt what I have. I really get irate to those who ask if its the same as AIDS because they are too ignorant to check the symptoms where AIDS is a lack of immunity and Wegs is too much immunity in a nut shell. This was asked by my very own sister of all people.
As you try to explain your situation, be sure to tell them that its not contagious and not passed through family genes! That is a big misconception to those who don't know! Also remind them how lucky they are that they don't have the disease that is so rare but does affect many!
By the way, the pred can affect emotion, I wanted to deck the pastor only because he said good morning! That was my first experience with steroids in 2006 and part of my cancer treatment! Glad my wife spoke up when the dr asked if I had major mood changes and I wanted to hit him also but the wife explained my moods and that I told her of my want to hit the pastor at church and I didn't know why! they adjusted my pred and I was fine. Now I live on 20mg of pred and will for the rest of my life!
Your friends cant know the issues your are having with wegs and adding pred!
Take a deep breath and live on and keep your friends! I bet they care but don't understand, in time they will!