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Thread: Sometimes it just honestly sucks !!!

  1. #21
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    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!

  2. #22
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    People seem to know that RA is nothing like AIDS yet they ask that question about Wegs. Maybe they don't know that RA is also an autoimmune disease, like lupus and MS, which also aren't compared to AIDS, because they are well known as distinct diseases with their own characteristics. We are in a weird situation with a condition that is so unfamiliar to people that they can imagine whatever they want and whatever we say may go in one ear and out the other. When WE say autoimmune they may hear immunodeficiency. The AIDS question does not come up often, however, for me, anyway, and it IS due to ignorance. But I do get people all the time acting like I need to boost my immunity by taking echinacea or elderberries or changing my diet. It is annoying, and trying to set them straight may go in one ear and out the other. And true, the pred doesn't help in dealing with it at all!
    Anne, dx'ed April 2011

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    I think you hit it on the head!

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    Preach it sister !! We do know how you feel. Please read my introduction post "vertigo anyone" and you might feel a little better.
    James

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    Quote Originally Posted by annekat View Post
    People seem to know that RA is nothing like AIDS yet they ask that question about Wegs. Maybe they don't know that RA is also an autoimmune disease, like lupus and MS, which also aren't compared to AIDS, because they are well known as distinct diseases with their own characteristics. We are in a weird situation with a condition that is so unfamiliar to people that they can imagine whatever they want and whatever we say may go in one ear and out the other. When WE say autoimmune they may hear immunodeficiency. The AIDS question does not come up often, however, for me, anyway, and it IS due to ignorance. But I do get people all the time acting like I need to boost my immunity by taking echinacea or elderberries or changing my diet. It is annoying, and trying to set them straight may go in one ear and out the other. And true, the pred doesn't help in dealing with it at all!
    I absolutely agree with you! Its just too easy to make assumptions either by how a person lives etc. I had a couple of people that I worked with several years ago that like to tell people that smoked how we must e looking forward to dragging an 02 tank around everywhere you go! I was a smoker but I haven't smoked since May of 06 and was an other wise healthy active mid 50's guy! Doc says I was symptomatic for only 3 months and the flare was with in striking distance of killing me, Like in a week or so it sounded like because of the original lung surgery to remove the growth. That all ended over a 3month period and finally when I was close to suffocating that seeked help. Three more months passed I was on 02 24/7 and then the flare and the root of all my issues. Within 2 weeks of the flare, my lungs were destroyed, my were attacked and damaged but still have 80% and they are functioning no doubt due to the Pred! I also have a time digesting others referrals to their "Dr or some Whole health clinic! Or the best one is that my dr cured my mom friends son in law and he had abut the same thing" ! and then follow that stupid unconfirmed healing with "You need a new Dr man!" "They are just stringing you along for the money" and Blah blah blah!I fear that I have hijacked the thread with a rant but I do, as we all know what the op is talking about.

  6. #26
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    I don't think you are hijacking the thread. The thread is about how it sucks, and you are just giving more examples of how it does!
    Anne, dx'ed April 2011

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    Quote Originally Posted by mrtmeo View Post
    People don't seem interested when I mention the disease until I tell them it is worse and more deadly than cancer.
    Once I get their attention, I tell them about the disease, but I still get some dead stares.
    I think people want to ignore the pain and suffering and live their lives in only positive things (dream world).
    What they don't realize is that there can be a positive life with this disease and some go into remission their whole life.
    Everyone could get along with all if they just take a moment to understand others.
    We all have different crosses to bare and some worse than than others.
    Working together makes us all stronger.
    I haven't told too many people. They few I have told, just stare and change the subject or I have the same symptoms it's just part of aging, or oh we all get that. I just want to go nuts on them, but don't. I just walk away and cry. Why can't close friends and family just try to understand a bit. I have found people who I have shared with (with minimal information) just that I have GPA are now keeping their distance from me. They all say well you look fine. So, yes I just need to focus on ME and not worry what others think or say. To me true friends will want to know what is going on and ask more questions and try to understand a bit more. But this just isn't reality and I need to except that

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    They all say well you look fine.
    I think every last one of us have heard this and they have no idea how you are crumbling inside. It is terribly maddening and you won't ever be able to explain it to them. It sucks.

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    Quote Originally Posted by vdub View Post
    I think every last one of us have heard this and they have no idea how you are crumbling inside. It is terribly maddening and you won't ever be able to explain it to them. It sucks.
    I just had a friend last night tell me that this just isn't a real disease and if it was her she wouldn't take chemo med's. Well between the side effects of the steroids and my own anger I was not too nice to her. I said OK then I will arrange a meeting so all of you who don't understand can attend and ask away and learn. She was not happy, but I mentally can't take it anymore. Then my brother calls me 1 hr later and tells me to stop all med's and just live with the symptoms. Why can't the doctor's do a test to prove 100% for sure you have it? OMG OMG OMG I give up...just needed to share my week this week. Just stay in my place and close all doors and blinds..not sure how to handle it anymore.

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    Shortly after the brain surgery where my pituitary was removed and they had a positive diagnosis of wegs, my sisinlaw went around telling people that she knew of someone with this same disease and "it wasn't a big deal". I was very unhappy about that.

    Nearly all of us have heard people say dozens of times "but you are looking great". You just have to grin and bear it. If it gets really bad, trip-up one of your more annoying friends just for fun.

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