How true you make look alright and know one knows your pain,I remember that when I see some one ,you do not know what there going through ,so be kind ,thanks for sharing,hugs Shirley

We look ok from the outside, but inside we are a shipwreck. my children say that I look like a complete snob at times. When I am at a checkout the tellar says hi how are you. If I hear them I certainly reply. most times I don't hear them making me appear standoffish. This is not the case. I am a very friendly person and love to chat with people. This disease eats away at us leaving us very much in the dark about a lot of things because we don't hear, and that my friends makes for a lonely life. When we have no visible signs of illness or distress no one knows what is going on inside. I was out grocery shopping yesterday, my youngest son (18) was with me, they would never leave me alone or unattended. So I wasn't feeling very well at all but the shopping had to be done. i am hanging onto the cart for dear life hoping I won't fall and totally embarras myself and my son. So my balance is totally off therefore making me look like I have just finished a bottle of Jack Daniels first thing in the morning. It has become a standing joke at my house......Drink much! i guess I'm just venting because I've been feeling poorly this last week or so. I wish my world would stay still for a little while. Take care Nancy

I have been thinking alot about the word "invisibilities". I even put this as my signature of my text messages. My sister said she didn't like it, she said it was a constant reminder of my illness. That made no sense! A reminder? I don't have to be reminded about how I feel. Does this make sense?

I truly agree with you. Unless you have this disease, you have no clue what life is like. Even my good days it haunts me. I feel like a walking time bomb sometimes. Which my family as good as they have been through all this still doesn't fully understand. Somedays I can walk as normal as anyone, other days I feel like it is such a challenge. I to when shopping feel like I need to hang on to the cart. try to stay as positive as I can in front of my family so they don't worry. It is great that we have each other, to share are ups and downs with.hang in there we are with you.

Thanks Catalinav. How true. No one knows what it's like. On days when I feel good and I am out socializing I am so up and talking would almost seem manic at times. I'm reminded of when I was a paper boy collecting for the paper. Elderly women all along the route would invite me in to their home & feed me cookies, they were starved for conversation, lonley, sweet old ladies, small town, all of them knew my family, they just wanted to talk. I feel like that now when I go out or when someone stops by. I don't bake cookies yet but I could someday. So many things in my life have changed.
IWSteve

How true. I have been doing better with the MD tho my ear still keeps plugging up for the last 4 months and of course, I have the most stubborn ENT who thinks I need surgery cuz that's what HE WANTS! sigh. Can't wait for new insurance next year and pray for a better DR!
But when I feel "normal"and try to do everything, I forget and then whamm!, I'm on my back in bed:(
NANCY-if u see this post, I wanted to know more about the sofracort u take but see U Don't know how to respond to messages on here??