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?

[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