your opinion?

[alexciasmom]

Has anyone else found that family and friends after so long when they ask how u are doing and you start to tell them and its as if they really don’t want to know. And most of them act like that just because your on what hopefully will be your last treatment that it’s a cure. And you should now be all the way back to normal doing what you did before you got sick. Or is this just me? :unsure:

[delorisdoe]

People are being polite but your best answer is just "much better thanks". They rarely do listen to the answer.

[Sangye]

Personally I don't believe in saying something that isn't true just to appease someone though I understand why others might. I've gotten better at giving a quick update. Most of the time I answer "How are you?" with "Physically I don't feel so good but I'm in good spirits." If I don't feel well and I'm not in a good mood because of it I say "It's a tough day."

Over time my friends have gotten much better at understanding that this is a long haul. It was really difficult for the first few years. Everyone thinks it's like cancer, meaning if you survive then you should be getting stronger by the day. That hasn't been the case for me at all.

[delorisdoe]

That has just NOT been my experience. People get that same glazed look over their faces that my husband gets when I tell him about something going on at my work. I am not saying that i say "much better" if I am deathly ill but It is my standard answer otherwise. Mind you, I am very private and do not like to discuss my health face to face with anybody so it could be more me than them.

I was in the hospital recently with diverticulitis and I did not call my dad or anyone else because to me it was embarassing and not a conversation starter. My dad found out because my husband told him a few weeks later. Within 3 days men I did not know even knew me were comming in to my work asking me if I was better now and that my dad told the lions club he belongs to all about it. I was horrified!!!. I always pictured his lions club to be like the flinstones water buffalo meetings and I could not believe that the water buffalos were discussing my intestines.

trust me, they still come in and ask me about my "problem" and i answer ' much better thanks". I just now realised that most likely his entire water buffalo brothers also know about the wegeners although I can only imagine what my father has told them as I dont think I have ever really explained it to him.

[RCOSSIO]

I hear your pain.

When my joints hurt and I am limping, they always ask ....Is something wrong???

And after I let them know is was the 15-mile run followed by the 1-mile swim that did me in, they always suggest..."I should slow down"

Like Really..what am I Iron Man.

TG I have a great sense of humor.

Well see ya, I am leaving now to ride my bike from Miami to NYC, hey Sangye I'll stop in Baltimore and get you a cake from Mad City Cakes.

[drz]

I hear your pain.

When my joints hurt and I am limping, they always ask ....Is something wrong???

And after I let them know is was the 15-mile run followed by the 1-mile swim that did me in, they always suggest..."I should slow down"

Like Really..what am I Iron Man.

TG I have a great sense of humor.

Well see ya, I am leaving now to ride my bike from Miami to NYC, hey Sangye I'll stop in Baltimore and get you a cake from Mad City Cakes.

Year ago pre diagnosis but after symptoms of joint pain had been almost disabled I went to an orthopedic who specialized in treating athletic injuries. He examined me and said he had no idea why my joints hurt. He had only seen those symptoms in marathon runners who train at more than 50 miles per week. So I told him in jest I had cut down to 25 miles a week but the pain remained. He told me to get the H--- out of there and come back if I had an injury he could fix. A sense of humor helps gets through the rough spots!

[Sangye]

Leigh, it seems like you're giving mixed signals about what type of response you want people around you to have. It may be that people get that glazed look because they have no idea what you want them to say.

I've been in that boat at times. I didn't realize it.

[delorisdoe]

Probably. I wear my heart on both my sleeves and i hate it there.

[Psyborg]

I can see both sides. It bugs me that some people feign concern, but don't remotely get the situation. By this I mean they clearly don't care except how it impacts them. Others are truly concerned and I try to give them more complete info. But I'm generally a pretty empathetic person and can get vibes from people pretty well (which is not always a good thing).

[RCOSSIO]

Year ago pre diagnosis but after symptoms of joint pain had been almost disabled I went to an orthopedic who specialized in treating athletic injuries. He examined me and said he had no idea why my joints hurt. He had only seen those symptoms in marathon runners who train at more than 50 miles per week. So I told him in jest I had cut down to 25 miles a week but the pain remained. He told me to get the H--- out of there and come back if I had an injury he could fix. A sense of humor helps gets through the rough spots!

LOL...I am sure he was bewildered when you told him that :w00t:

[LisaMarie]

I get just as fustrated...my feeling if you don t want the answer don't ask....since we don t always look as sick as we feel ...I think it is hard for people to believe we are as sick as we are ....sometimes I just want to ly in bed and bawl and wail due to the pain and the pure exhaustion from the fatigue...but God made me a stubborn strong person who will probably die working at my desk then laying around somewhere.....I think somepeople do not understand this disease kinda determines our daily life so it is always a thorn in our side

[Sangye]

I remember early on having major problems with all this. One day my therapist asked me to describe what I'd like others to say and how I'd like them to treat me. You know what? I couldn't even answer it! I was so unclear in my own mind that that was what came back to me from "out there."

The other piece was that I couldn't feel compassion for myself so I didn't even recognize it when others directed it at me. I labeled it all as "pity" and resented them for it.

I still have these habits and have to stay on top of them. They crop up everywhere-- in relationships with friends, doctors, receptionists, you name it. Sneaky devils!

[alexciasmom]

So it'snot just me. lol I gess i need to find my sense of humor agin :rolleyes1::wink1: Thanks for the input.

[Hammy8241]

I agree. no one really wants to listen to the answer. We look OK, so we are OK.

Still, in my normal manner, I'd like to help. So after great thought, i found this mood chart which you can show to people. It will save them asking and you having to answer - great!

[BrianR]

Love the mood chart Hammy. And...great name for your pooch! No one who lives in our town of Jasper can really name their dog as such so nice to see it crop up on such a handsome canine as yours! I trust he is making his mark throughout your house as all good pups will do!

[Hammy8241]

Thanks Brian.

Not picked Jasper up yet so the house is still smelling sweet. Collect week Saturday. We go and visit him each week. Been collecting newspapers.

Good of you to name your town after my dog, he'll be proud:wink1:.

[NicShaf]

Has anyone else found that family and friends after so long when they ask how u are doing and you start to tell them and its as if they really don’t want to know. And most of them act like that just because your on what hopefully will be your last treatment that it’s a cure. And you should now be all the way back to normal doing what you did before you got sick. Or is this just me? :unsure:

I find that it's a 50/50 mix. I think those who have gone through something difficult or had a loved one fight a tough battle against some sort of disease are usually genuinely concerned in what I say and how I feel. I find that most "healthy" people, especially people my age, don't really want to hear how I'm doing...nor do they understand what I'm going through. I have learned to read my audience a little more, and I tailor my answer from there.
I talked about Wegs and what I'm going through to a friend’s wife...I especially confided in her about how we may not be able to have kids because of everything I'm going through. She still insists on rudely asking us in front of people "when are you guys going to start having kids", even though she knows it's a sore subject. And she acts like, "oh, is that still going on". Grrr, just had to vent about that one:)

[ScreaminMeanie]

Oh boy, Nicole, that's a tough one. I'd be pretty upset if a friend did that to me......

Sangye, I think I'm a lot like you described, too.

I think a lot of my unwillingness to talk about it is that (some) people subconsciously (or even consciously) blame anyone who is sick for their own condition. I fear that anyone I tell might do that, since it has happened with so many other people. It may not be overt, and they may not realize they are doing it, but trust me, they are doing it. I have friends who ask me why I don't go out dancing anymore. They know how much I love to dance, and they just can't understand - didn't I have some treatment? Aren't I doing better now?

Another part of it, I think, is that people we are really close to (spouses, parents,close friends, etc.) don't want us to be sick, so they might be in a form of denial about it, and it can come across as lack of understanding or lack of caring.

Like others have said, I think all we can do is have a sense of humor about it.

[alexciasmom]

Oo he's so sweet.... LOVE HIM... good luck with the puppy stage lol

[alexciasmom]

o hey any one else having trubble sleeping? And what have you found out that helps? (Plese eexcuse the spelling between the drugs messing with me and numb fingers its some times a pain to type. :ohmy:

[drz]

o hey any one else having trubble sleeping? And what have you found out that helps? (Plese eexcuse the spelling between the drugs messing with me and numb fingers its some times a pain to type. :ohmy:

If you are taking prednisone trouble sleeping is standard complaint. Try to nap when you can.

[elephant]

I had severe insomia when i was taking high dose of prednisone. I took naps and looked forward to them.

[vdub]

We look OK, so we are OK.
Yeap! I have a sister-in-law who is convinced that "because I look ok", then I "must be ok" and she tells people that the disease I have is "no big deal".

As for the answer when I am asked how I'm doing, I usually say "good days and bad days, but no worries". If they want to know more then I tell them....

[alexciasmom]

o joy and o joy. we had a bday bbq for my papa inlaw and my handicapped nephew asked my if my face hurt when its gets swoled and red like that. o my i laugh and cryed all in one... the joys of pred i gess.. lol

[pberggren1]

I find some people are geniune and then others really don't care. Some others put on an act that they care but really don't. For example. A friend of mine recently sent me an e-mail saying quit reading into everything so much, you are driving me crazy, and can't imagine how you treat your docs. Well, I soon set him straight and said: when you ask about my day and how I feel and everything about my diseases, etc, are you really interested or are you just bullshitting me? He said he really does care but though I am reading into things too much. I asked what he meant by that and he said I worry too much. I said it is hard not to worry when you have Wegs, no hearing, and deadly lung infection, and many other things to deal with. I felt like punching him.

I have some other friends and family that are just great and want to know how I am doing what is going on week to week.

Then there are others that say all I need is to go out and find a job.

[elephant]

Phil, you have some good friends and family and that is all you need. The other don't matter, just got to keep moving forward.