13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
betty~ Called BOTH!! Have my family calling. Heck, I am not above knocking on people's doors in my complex today.
I am working on my signs. Tracy, hope you don't mind if I plagarize some of your sayings.
We need to run off the chants you did and pass them around so we can get some real voices going.
I thank you all for bringing this to light.
We are down, but we are definitely not out.
-------------------- ...~*Just keep swimming, Just keep swimming*~... Posts: 120 | From New Jersey | Registered: May 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
PLEASE use the sayings; that;s what they are there for. I have hoped some of them might be used.
It's 3 am and I am bummed. I had planned to go to the rally tomorrow and I have come to decide I just can't do it.
I haven't driven in six months, am housebound and bedridden about half the time. I had signed on to carpool from New Haven, about an hour and a half away.
I wanted to go so badly, I told myself I could do it. Today I could barely get out of bed, and tried to talk myself into having enough energy to make my sign all afternoon.
Finally I realized, if I can't get up enough energy to make the sign, which I really want to do, how the hell do I think I can travel to New Jersey and back?
I realized even if I manage to get myself to New Haven, by the time I get to New Jersey and back to New Haven, it is very likely I won't have the ability left to drive myself back home.
I also learned that we can't line up chairs, so sitting on the curb or standing will be expected. I just can't do that.
I am so bummed. I really want to go. If I had someone to go with me from home I would do it. But I think I am setting myself up if I think I can handle this.
I did however email almost everyone in my address book the link to make calls tomorrow, and asked them to email everyone they know. I know many will do it.
I'm so mad that I can't go. I hate to have to face my limitations like this.
It won't be forever. I'll do all I can in every other way.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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bettyg
Unregistered
posted
what a crock!
those protesting can NOT SIT DOWN as sick as we all are!! sitting on curb or grass!!
tracy, you take care of you; glad you can make those phone calls..
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My signs have been printed. I am going with two friends. Taking camera to post information later tonight for all to see.
Posts: 263 | From Georgia | Registered: Feb 2006
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posted
Called
Posts: 472 | From New Jersey | Registered: Dec 2007
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bettyg
Unregistered
posted
i called both and including my speel about our vets/active military being forced to go to idsa drs. vs. our chronic llmds ... paying out of pocket.
i could tell by their voices they are bombarded; on hold for 2 minutes on 1 call.
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Tracy, it's like that. Lots of disappointments for us. But you know what? You do your utmost here, and that's great. This is your personal best for now and I appreciate all your contributions here.
2, 4, 6, 8 -- Who do we appreciate? Tracy! - she is still first-rate!
Posts: 13117 | From San Francisco | Registered: May 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
OH Robin, THANK YOU!!!
You totally brought a big smile to my face.
Today when I awoke at 4 pm it was clear that going was not evena remote option for me; I made the right decision.
I think I just might be experiencing my first ever Bicillin herx!
Yesterday I felt like crap, but that feeling often comes and go...but today truly I knew I am in bad shape.
Slept all day, awoke and oculdn't bend my fingers, body did not want to move...blah blah blah....
I only hope the people I was supposed to car pool with got my emails and weren't waiting for me at IKEA!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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