Sometimes it just honestly sucks !!!

[im so blessed]

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 :)

[Pete]

Hang in there!! It gets better.

[MikeG-2012]

If you are not usually this emotional, then it IS THE PRED. I used to hate the mood swings from tat darned stuff.

I agree with Pete, hang in there! It will pass once the 'roids get out of your system.

[ozterry]

You are never alone here. As the others said, pred doesn't help with mood swings. Some days are ****, others are passable. Stop worrying what other think, you know how you feel. Enjoy the not so bad days, I drink the three beers my rheumatolagist allows me twice a week. :)

Take care
Terry

[annekat]

I think sometimes others need to know when we have a medical condition that may affect our ability to participate fully in the same activities everyone else does. I agree that people's eyes just tend to glaze over and they change the subject when we mention our illness by name.... they just cannot relate, it is nothing they've ever heard of, and we seem OK to them. So maybe it is better just to say " a health issue", "a medical condition", or "an auto-immune condition", and let them use their imaginations, or not. At least it would explain why we sometimes leave early or decline invitations to evening or day-long events. If they want to ask further, they may, and then we'd do best to keep the answers brief and simple. Very close friends should want to know the details, others will probably not be able to process the information. It is a tricky balancing act, and some of us on here prefer not to let on about our disease at all, if possible, and just try to live the way anyone else does. That's a personal choice. As for the prednisone and the emotional reactions, YES! That should improve when you get into the lower doses.

[MikeG-2012]

So maybe it is better just to say " a health issue", "a medical condition", or "an auto-immune condition", and let them use their imaginations, or not.

I use the line, "I have a rare auto-immune disease that has similar symptoms of Rheumatoid Arthritis, plus more."

[mrtmeo]

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.

[annekat]

I use the line, "I have a rare auto-immune disease that has similar symptoms of Rheumatoid Arthritis, plus more." That's good, Mike.... it does seem smart to mention it in comparison to another AI disease that they HAVE heard of, that they are probably familiar with through knowing someone who has it. And especially one like RA that is known for causing physically debilitating symptoms that limit the patients' activities. Unfortunately, some may think of RA as minor since so many have it, and may not be aware that it can be very severe and even life threatening in some patients. But it is a good approach that will help explain your physical limitations, and the "plus more" is an important addition.

[Jayne 14]

I'm so blessed
You are not alone
It's very hard understanding this disease ourselves let alone explaining to others
But , you can't keep on as before & your friends I'm sure would love to help u
I get fed up too but this site & all fellow weggies wrap their arms around me & then it's better
Rant away if it helps
👍


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[vdub]

We (us on the forum) have said over and over that the most often heard comment is "gee, you don't look sick". Some have responded by not talking about their disease and others have responded by educating people about the disease. I try to educate people. I tell them how the disease works, that it isn't something they can catch, how it makes me feel, that it can be controlled, but not cured, and that the drugs I take for it make me feel almost as bad as the disease itself. Not everyone is interested. Those who are interested are the ones I call "friends". The others just aren't important to me as I am not important to them -- its a win/win.

[NikkiNicole]

You're most definitely not alone. We have all had some experience with people's reactions to our disease, and the myriad of emotions that comes along with it. Prednisone makes us all over the place and on top of that, the disease limitations in of itself can make us depressed and emotional. I've been off prednisone for a long time and I find myself all over the place emotions wise. Things upset me much more than they did before. Depression hits pretty darn hard all the time. My doctor recommended I take an anti-depressant given everything that I was going through but I didn't like it. I'd rather feel honestly. As a writer, that's what I need!

People will never understand our disease unless they take an interest in it. I have had a few friends who sat down and researched my disease so that they could be more understanding of what is wrong with me. The most touching gift I received this Christmas was a friend bought me a bunch of scented hand sanitizers and a little holder for them because she knew I hated regular sanitizer and knows my medication makes me attractive to germs. My own husband seemed mildly clueless until his aunt made him realize things were more serious than he was taking it. My condition itself isn't that advanced but now he's hellbent on making sure I don't get worse.

You're with us. We are all together. We are in this together. Come here and vent away!!!!

[jakekell]

I think most of us can relate to what your feeling at I can for sure. Things will get better when the pred comes down for sure, but it can be hard to keep up with your peers no matter what age you are. I am having a hard time accepting that I can't always do the same. We are in our late 60's and retired. We were always very active, however this wegs is making it tougher to keep up with our peers. I of course have gained weight as originally had huge does of pred as I had gone deaf. I am still on smaller amounts and struggle to lose. I know that would help, but harder to do now. I don't think others understand the disease as all I hear is you look great! I haven't been great since last spring, however is getting better. I always look healthy so how can they understand, don't think they can. I was finally dx 9 years ago this month, some very good then some down hang in there.

Mary

[annekat]

"You look great!" can feel dismissive, as if we must be OK and not sick if we look great, so they don't need to think about our illness any more. But I guess the best thing is to take it positively, and be glad we look great, even if we don't feel great. I find myself saying "you look great!" to people I know who are recovering from cancer, etc., and they don't seem annoyed, but maybe I should think about it a little more before saying it.

[jakekell]

I do agree that we need to take it more positive and sometimes do. I think for me it feels like I am being dismissed when do something as just not up to it that day and then the "well I got to tell you that you look terrific" comment is made. I understand it isn't meant to me dismissive, but part of it is that we already feel back about not doing something. I went through having cancer and did like to hear I looked good/winning! I think your fine saying that to people with cancer and be sure to how are you feeling?

[vdub]

I may have mentioned this before, but shortly after I was dx'ed with this disease, I had a sister-in-law going around telling family and friends that "it wasn't a big deal". She told enough people such that it got back to me. I'm not sure how she felt qualified to make such a statement. And, that was after I had just got out of brain surgery and was still in the ICU. Some people just aren't worth having as friends or relatives. She lives in your town, Nikki!

[jakekell]

Wow! That is a lot of nerve and your so right not worth being around her. Who's town, mine? Mary

[annekat]

Nikki's town, Santa Rosa, CA? My sister lives near there.... I hope neither she nor Nikki run into this woman! Although unfortunately, they are everywhere, I guess. I don't know why people without medical degrees have a sense of entitlement to pass judgement or make statements about rare conditions they know nothing about. I imagine they do the same thing in other areas of life, drawing conclusions and spouting them them out, when they have no qualifications and shouldn't be meddling in the lives of others. I guess it is a mark of insecurity to have to always think you are right and know everything about everything.

[jakekell]

I think some people need to be the center of attention and to many people messing over Nikki may have been to much for her.

[annekat]

I think some people need to be the center of attention and to many people messing over Nikki may have been to much for her. Oh, I don't think it was really about Nikki.... vdub just mentioned that that relative who said his illness was "no big deal" happens to live in her town, which is Santa Rosa, CA. I agree, these big-mouthed people like to be the center of attention; that is a symptom of their insecurity, I feel ..... I just think it is a fairly common trait among humans and we just have to tolerate them, though they should be set straight when they mouth off like that, and we don't have to be their friends. On the other hand, they can teach us how not to be, and there are also plenty of respectful and more reserved people who don't act like that.

[vdub]

Santa Rosa... She's a strange duck for sure....

[Tom]

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!

[annekat]

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!

[jakekell]

I think you hit it on the head!

[Realpro325]

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

[Tom]

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.

[annekat]

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!

[Susan55]

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

[vdub]

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.

[Susan55]

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. :(

[vdub]

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.

[Susan55]

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.

:( oh wow, I am so sorry you had to hear this from her. I find it even harder when it's family. but we just stay strong and stand stall

[Marley3562]

Hi...I’m new to the site and just saw your post. I had my 2nd Ritixumab infusion today, and today it finally dawned on me that I’m sick..really sick, and I’ve been trying to pretend to everyone that I’m ok. The infusion room has 5 chairs. Last week everyone was quiet, today the room was chatty. Met some very inspirational women. I finally talked about my symptoms and didn’t sugar coat anything. Actually felt good and cathartic.
Marlene

[gilders]

I finally talked about my symptoms and didn’t sugar coat anything. Actually felt good and cathartic.
Marlene
....and that's precisely what Andrew has created with this forum.
I tend to disappear from the forum when things are going well, but then return when things aren't so good and I need a little support and "good and cathartic" feelings after I've told everyone my problems (usually kidney transplant related). I occasionally browse kidney forums, but rarely post. This is the forum I always come to first and genuinely see many of the members as friends who genuinely care.
I always hope that when other forum members seem to go quiet on the forum, it's because they're out there enjoying life!

[Aneinu]

....and that's precisely what Andrew has created with this forum.
I tend to disappear from the forum when things are going well, but then return when things aren't so good and I need a little support and "good and cathartic" feelings after I've told everyone my problems (usually kidney transplant related). I occasionally browse kidney forums, but rarely post. This is the forum I always come to first and genuinely see many of the members as friends who genuinely care.
I always hope that when other forum members seem to go quiet on the forum, it's because they're out there enjoying life!Understand completely. I have the same cycle.

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