Re: reply To Sally from Gloria

From: Gloria (
Sun Aug 26 23:22:56 2001

Hi, Sally,

I have learned to focus on the good things in my life. And thank goodness I have always been one to appreciate the little things in life-( it doesn't take much effort to look at and smell a flower or watch kids at play). I've turned into the best watcher in the west, LOL. My whole life has changed so very much in the past 2 years I hardly recognize the person I have become. And sometimes that gets to me. I get tired sometimes of trying to pretend that I'm Ok. I try not to worry, just put it out of my mind, but with all that's happened during the past two years and feeling enough pain already that I have to use 20 mg oxycontin (doesn't take the pain away-but does allow me to function half way normally), plus I have to still come to terms with being a different kind of Mom to the twins (compared to how I was able to raise the older girls), sometimes I just can't help but worry and feel guilty. But, at least now I can say that most of the time I'm doing OK with this emotionally. My only real problem now is coming up with the $$ to pay for one of the 3 'good doctors'. I have not given up hope and am willing to go through another surgery with one of them only. I realize though that still there is a very good chance that I won't be 'fixed'. But I do have to try one more time. I only hope things don't get too tough before I can afford the surgery. When I read some of your posts I thought to myself what a tough woman you must be-what with running the Inn and your walking ( made me hurt just reading what you were doing,LOL) among other things so soon after your surgery. Sorry about your hubby giving you a hard time. Maybe you could talk him into wearing his belt a couple of notches too tight, where it is just a little bit painful and then get him to go about his day and come talk to you that night about how he feels after dealing with his day with a band of pain around his middle. It sounds like he might need a good long talking-to that begins with the words "Hey, buster!....." Sorry if that sounds mean-but I do know the difference in how I feel if my ex-husband is being jerk-boy or if he is being considerate and helpful. Thank goodness he is finally getting to really realize how truly aweful I feel at times and is a bigger help now-a -days than he's ever been. :) Anyhow, I try to laugh at every oppportunity and smile often. I am much less demanding of myself and others and have definetely learned to appreciate what good I do have in my life. I've learned to be more accepting and understanding of other people NOT understanding my illness. The only people who I feel truly understand what it's like to live with ARD are right here on this board. Unless you've lived it you just can't really know how it feels. And it's tough because it is such an 'invisable' illness. I try not to worry-sometimes that's hard. I live for the moment and try to enjoy every second that I don't have to be in my bed. You seem like such a nice person-don't let that hubby browbeat you. I hope you're feeling better soon. sending wishes for peaceful and pain-free days, your friend and partner in pain, Gloria :)

p.s. I know, I know, I've read before: you don't have to apologize for long posts, but still feel the need, so -Sorry for the long post, LOL

Sally Grigg wrote:

> Hi, Gloria, your responses are normal or else we're all crazy (could
> be). I wanted to be pain free so badly after surgery then I thought I
> was, and now it hurts again. My mind is a maelstrom of mixed emotions,
> and its easy to cry over nothing and everthing. But, you're right, we
> have each other and that's very comforting. Love, Sally

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