...most days I just go through my daily routine, watching what I put in my mouth, reading the ingredients, praying for a clear mind and a painless body...
Then I am reminded of people like Leslie who did not deserve anything she was put through. I become filled with frustration over this disease and the absolute nonsense tied to it... .... very infuriating.
.damn.
Posted by momindeep (Member # 7618) on :
Thank-you ThatColorGreen, for remembering.
Posted by Lymetoo (Member # 743) on :
I do remember her name. Always a loss... a tragic loss.
Posted by lou (Member # 81) on :
Yes, remembering Leslie, and Rose, and Greatcod, and Charlie, and Joe Ham, and a lot of others. We need to remember these people and fight harder, for ourselves and for better response by the medical societies and institutions, govt health agencies.
Posted by missing (Member # 22437) on :
I always cry my heart out when I watch her interview.
I would loved to have helped her.
Did she die because she didn't have enough money for her medications?
How is that lady doing that was from Alaska. She was laying in a hospital bed in UOS and they were moving her to a nursing home. I think she was going to start treatment.
I think about the UOS people all the time and wonder how they are doing. How are the children doing from UOS? Does anyone know?
I have been starting to video tape myself when I am really having a bad time. I want it as evidence of how much I suffered. I actually look and walk much worse than Mandy did on UOS. I need a wheelchair, and have to take triple the narcotics if I want to be able to simply walk to the bathroom
I think we should all video tape our selves at our worst and scariest times. Copy and save it to disk. One day , these videos will help our cause tremendously. It is going to be great proof that we were not faking it.
I don't have a video camera , so we are just using the regular camera that has a video option on it. The video doesn't have to be long, and you can also just use your phone to do the video as well.
We should find someone trustworthy to send these videos too. Lorraine Johnson, from Lyme Policy Wonk seems like a natural first choice.
What do you think? I will contact her today, and ask her what she thinks of my idea. I am willing to either email or send her a disk of my worst moments. Maybe she will think that it would be helpful at all.. I will see what she says.
I am always trying to find ways to push this along and shock the world into seeing how much we suffer.
Posted by lou (Member # 81) on :
Good idea, missing. A video archive of suffering. Of course, not all suffering is visible, but some of it is.
I think UOS website has a follow up section on the people in the film.
![[Frown]](frown.gif)