I saw post #35 by ZS in the ZS rant thread. "It's time to stop the bs and start supporting those that need it."
I thought as how I need some help, which was why I was glad to see this forum come into being.
I thought maybe a good person to "ask" for response would be someone who complained that people here were not giving enough support. So I submitted post #105 in the death of BT thread. I quote myself:
Quote:
Nice ta meetcha
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Hi, Ellie, I'm Jaye, and I have had Parkinson's Disease for about ten years and painful degenerative arthritis of my left hip for about five.
I'm one of the old faithfuls of the PD board, but there are new people who don't know me because I haven't been posting much lately. The hip is majorly painful and I don't know how to talk about it. The PD is fatal but the pain's not. However, if I'd listened to the first orthopedic surgeon, I'd still be waiting for surgery and I'd have no information about what's happening to me. I thought we should get on with it because the PD keeps getting worse and I have dystonias (muscles suddenly getting rock-stiff) in that thigh, and I was tired of the rudeness of him and his office staff, so I got a new doc. The second orthopedic surgeon will replace my hip in less than a month from now, and the first thing he said to me was, "Why have you waited this long to take care of this?" "Because doctors don't listen to their patients," I said. He explained that any more waiting and there wouldn't be enough pelvis left to attach the prosthesis to. I guess my other docs just thought I was being whiney about my PD.
And my other doctors have been nagging me to exercise. I've been telling them it's too painful to walk, and they keep telling me to walk anyway. Now maybe they'll believe me.
The point being, if i hadn't been here helping newer people deal with doctors all this time, I don't know if I would have woken up in time to change doctors. I don't think anyone's actually reading my posts through here, though, because they're maybe too intent on bursting out with what they want to say. Or someone reads them and jumps on my case about something and tells me how to feel. Well, it seems like it anyway.
Welcome to whatever this is.
The most important thing I've learned in Braintalk 0, 0.5, 0.75, 1, and 2 is not to tell other people how they should anything--post, talk, feel, act, be. Remove the word "should" when talking about or to others, and you will be much happier and wiser. So you really should do as I say.
I like a person who stands up for what they believe in. See you on one of my rare forays into chat some time.
Jaye
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Only Consider This and one of my closest personal friends responded to this.
Think about it. I 've been exemplary, yes , I can describe myself that way, exemplary in putting th efforti here to help other people. No one sees most of my problems because I take them in stride. Now I'm in a situation I don't quite know how to handle (or didn't at the time I posted, although Thelma gave some personal support and Paula called.
What is the moral situation here? What do you think about it?
Almost all of you have shown less civility, never mind support, toward a sick person than you expect everyone else to show. Just a fact.
Flashchat giggling makes it hard for me and others with concentration problems to follow the thread. Maybe we can begin to face the problems we can do something about? And dammit, a lot of food talk triggers some people with eating disorders. I KNOW I don't have to read it, but I was in the thread to read about the subject of the thread. And remember, I was bleeding pretty loud for a minute there.
Okay, everyone ready to jump in my ka-ka for losing control after all these years?
Not telling you what you should be, but geez, who are you people?
Jaye and getting Graye