A Letter from a Friend (From Pat)

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Thinking of you…

I just wanted you to know how much I appreciate having people to communicate with who understand this awful journey.

Last night I reluctantly went to a neighbors for a holiday party. People I hadn’t seen since my surgery in January told me that I looked just fine, so it (AD) couldn’t possibly be that bad! When I wasn’t eating anything (because it hurts so bad to chew, or talk for that matter), everyone suggested that I needed to eat because I was too thin (like I want to be?).

I never felt so alone in a room with over 40 people! All I could think of was how I didn’t fit or belong with “normal” people anymore (sadly). I realize they can’t help that they have no frame of reference for what we are experiencing, but still I wish people could have more sensitivity.

So thanks for being there - know that I’m appreciating you today. Pat

Hi Pat,
May I copy and paste this message into a discussion? I believe this to be most important and 879 others may agree! love, bob

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Oh Pat, I know exactly how you felt, I always being told how well I look, yes I do have rosy cheeks, because most of the time one feels as if it is on fire, I always go red with pain. Yes I am quiet because I hurt, no I am not moody. No I can't drink it won't lift my spirits, it won't make me forget my troubles. No I don't want to sit by the fan to cool down, please understand it will make my pain worse. Please can I now go home, no I am not being miserable. Oh why did I come in the first place. No it is not just a headache a asprin won't make it go away. Yes I have been there got the teeshirt now I just refuse invitations. There comes a time in everyones life when they realize they do not have to conform, this pain has me selfish I no longer try to please. Margaret.