posted
I have seen a few updates but does anyone know whatever happened to all these people.
Some Lyme people were posting on youtube, then I worry and worry about them, plus everyone here too,
I faithfully check back and subscribe to their videos, and then there is nothing more.
Does anyone know?
There was a blond young mom whose husband left her and she was always looking for a place to live.
She had a few youtube videos.
And the really nice mom who lost her hair and posted some youtube videos.
Then, a young mom/actess who was amazing but so sick with no money, so she turned to alternative healing methods.
And then all the UOS people.
I cried and cried when that one lady died. I couldn't stand it.
By the way, I just met a person in my town who has Lyme disease but can't do anything about it because of money.
I gave him UOS and a copy of CUre Unknown and told him we would do whatever it took to help him.
He hasn't contacted me yet. I want to be insistant, but I am not sure.
I love all you awesome people here. You are so important to me. I have no friends.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
quote:Originally posted by OptiMisTick: You find out who your real friends and family who care are.
That can be a shattering revelation sometimes.
Wow, you aren't kidding. It knocks you back knowing that some people you would've died for, don't think twice about turning their backs on you.
This made me almost just as sick as Lyme did.
quote:Originally posted by OptiMisTick: Then you find others who stick, in the long run. Including your Lyme Folks.
The people who stick with us through thick and thin are nothing short of angels on earth.
Posts: 1142 | From South | Registered: Dec 2010
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posted
Yes, I am surprised by it. People let us down, but I know that they are busy. It is when family members let me down especially the retired ones that we would do anything for and love a lot.
They give excuses that they don't want to bother us. I understand that. I respect that they are not interfering and respectful. But ditching me in the emergency room because it was going to take too long and you would have missed your soap opera is not acceptable.
I also want to know how these other Lyme people are doing that posted youtube videos and were on UOS.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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posted
was the first woman's name jamie? and she had a little boy... she lived with her grandparents for a while... and she was very thin..
not sure if it's the same person, but i used to watch her videos, and i always wonder what happened to her!
Posts: 442 | From usa | Registered: Oct 2010
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posted
yeah, i wish i knew what happened to her... hopefully she got better!
i never saw any of the other people you mentioned, but that is very very sad
i did watch one other lady with dark haired woman with tan skin... she had a baby, and a really nice fiance. i THINK her name might have been shandy or shannon, but i cant be sure. i could relate to her a lot though!
Posts: 442 | From usa | Registered: Oct 2010
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posted
Hi - I just know about a couple UOS people. I believe Mandy is doing well and headed toward nursing school. She and Sean got divorced.
Dana was doing much better, and got married to the young man we saw in the film.
Posts: 13116 | From San Francisco | Registered: May 2006
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then i know about the people you mentioned, missing!
i wonder what happened to poor nancy as well, the woman who was being moved to the nursing home.
i felt SO sorry for her! it's so wrong that she couldn't get the help she needed!
she still had a sense of humor though, even though she couldn't talk. i really do hope she got better
all the stories made me cry too! i felt so bad for the boy born with lyme who lost his ability to walk and talk just because doctors wouldn't do anything. his life was robbed from him... he didnt even get a chance to feel normal
i saw on tv that mandy and sean divorced... i was so sad to learn that they seemed like such a great couple, and i hate that that happened!
i was also heartbroken when i realized the lady fighting for lyme awareness died. and in her interview, it was like she KNEW she was going to die, so she was just doing what she could for others while she had the chance
i swear, this has got to be the most ignored disease ever. people are dying because nobody will help them... this doesn't happen with other illnesses. i don't get it!!
it's like we have to die to be taken seriously...
Posts: 442 | From usa | Registered: Oct 2010
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
it took aids a while to get our attention, when i first hear about it, it was all a moral issue and ignored it, then as word got out to us that the goverment knew and was blindsiding us from it.
its a tuff nut to crack forsure, my personel views on UOS was when i took it to the family group and showed it, off direct TV... when it was through my folks said do you think everyone has lyme? really... nope just me. we need rock solid testing. and then a treatment program for chronic lyme. then the coumunity can profit from nursing homes for lyme - as i believe it is in all diseases. like the egg came first then fib/cfs etc. my sister was dx'd with chronic fatigue syn and she will not look beyound that !!! welcome to old age, if i had a dallor for every time i heard that. go in peace, wayne
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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posted
Missing, you have such a big heart. Have you Googled "Under Our Skin blog?" They do post occasional updates, and I check it quite often.
Leslie's death really hit me hard, too. Watching the movie, we feel like we know these people, because we can relate to so much of what they are going through. I watched it right before my diagnosis, then discovered that Leslie, in her early forties, had passed away. Her words are so haunting and prophetic when you listen to them now.
I did not know her, but she was from my home state of Minnesota, and her sister Tracie and her started a Minnesota Advocacy group. I believe it is called Lymefighters? I will post a link sometime, if you want. There is a beautiful tribute to Leslie on the page. Then I saw a photo with her and her two beloved dachshunds, and I am also a dachsie fanantic...just so very sad.
I related most to Dana in the movie. How she said how she asked her friend what she sees when she looks at her, and how they cannot see the pain that she is suffering, because she "doesn't look sick," then called herself "the walking dead," or something of the sort. That is so "me." Always pushing forward. Going through on pure adrenaline. Pushing through the fatigue and the intense pain with a smile on my face...most days.
This will take time, but I believe our voices are being heard. Awareness is spreading and pretty soon IDSA are going to look like the complete fools they are to more than just us, but to the entire public. It will happen.
-------------------- Best Wishes,
Hope
"Hope is a good thing, maybe the best of things, and no good thing ever dies."
~~The Shawshank Redemption~~ Posts: 234 | From Minnesota | Registered: Dec 2010
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