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ME/CFS and Beating the Clock
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Phoenix Rising YouTube Video Thread

Discussion in 'Action Alerts and Advocacy' started by starryeyes, Jan 22, 2010.

  1. starryeyes

    starryeyes Senior Member

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    Thank you vdt. :hug:

    I love your field of poppies avatar.
  2. gracenote

    gracenote All shall be well . . .

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    teejay,

    I'm just starting to realize how immense this project was on so many levels. You had the vision and extended an invitation for help, the community responded, and look what is emerging out of that! It is now out there for the world to see.

    I just want to say, teej, good job. Thank you for following your impulse, for making the effort, for putting your heart into something tangible for all of us to share. I'm proud of you.
  3. ixchelkali

    ixchelkali Senior Member

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    Wow. Just wow. Add me to the list of the tearful. Thanks to everyone involved. It's beautiful.
  4. Rrrr

    Rrrr Senior Member

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    just watched it. cried all the way thru it.

    rrrr
  5. starryeyes

    starryeyes Senior Member

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    Thank you Gracenote. That means a lot to me. :Retro smile:

    :hug: to all of you.

    teej
  6. gracenote

    gracenote All shall be well . . .

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    Just got these comments about the video on facebook.

  7. Finch

    Finch Down With the Sickness

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    :hug: Gentle hugs back to you, Teej. :hug:

    Thanks for sharing which photo is yours. I'm so sorry for your pain.

    I know some of you by your photos, but I wish I knew you all.

    I'm lucky to be one of the "healthy looking" ones. Definitely far from actually being healthy, of course.
  8. creekfeet

    creekfeet Sockfeet

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    teej, more amazing than ever, that you accomplished this despite such a level of illness. You are fabulous, and an inspiration.
  9. starryeyes

    starryeyes Senior Member

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    Thanks for sharing those comments Gracenote, Finch and Creek. I am very blessed to have a lot of support and help from my husband and such wonderful people here who inspire me!
  10. From the bottom of my heart...

    From the bottom of my heart, thankyou. I wept.

    I've posted the video to my facebook. I've sent it by email as a forward to everyone I know.

    Thankyou to all who worked to create the video, contributed photos, music. Thankyou to Cort for the Phoenix Rising site which is the best portal on the net for ME/CFIDS info, for these forums without which I would not have any sense of community.

    This is huge for me to be here with others who 'get it'.

    For the first time in a long time, I feel visible. ( Yes, I am on the video. My photo is the sepia toned one with the lyrics scrolled along the bottom which say, "Sometimes I count it as a victory when I manage..." )

    Thankyou for giving me the opportunity to feel useful in the effort to solve the 'ME/CFIDS Mystery'... especially since it was by simply sitting here. lol

    :victory:​
  11. Adam

    Adam *****

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    Big hugs and crappy wheelchairs

    TeeJ:hug::hug::hug:

    My smiley pic was taken on holiday 6 years ago. I took my wheelchair that year and had to use it all week. I don't mind anyone seeing my smile. I am not miserable. I refuse to appear miserable. I've brought up two kids. The last thing I wanted was my illness impacting upon them. So the least I could do was hide the pain, the anger, the exhaustion. I cannot hide the disabilty though. Impossible. So I use a wheelchair when we go to the coast. Or I am dropped off as close as is possible to where we want to be and then walk with a stick (kids call it Roger?). Don't ask me why.:D

    So some of us are in chairs and some of us smile a lot, or occasionally and some of us are in pain and some of us walk like stroke victims - we are just people living with illness wondering if we should ask for more.

    I love the video TeeJ. It says everything it needs to say.

    As you Americans say GOOD JOB:Retro smile:
  12. starryeyes

    starryeyes Senior Member

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    :hug::hug: Bluebird and Adam! You have me smiling ear to ear right now.

    I'm grateful for the community we have here too.

    (((((Group Hug)))))​

    teej
  13. Tammie

    Tammie Senior Member

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    I realize that some people on the video want to remain annonymous, and otehrs have already said who they are, but I was wondering if those who do not mind telling us who they are could somehow be listed in order so that when we are watching we don't have to keep going back here to try to figure out who's who

    that may be too hard to do and I certainly don't want to make a ton of work for anyone, though, so if it's not possible, it's no big deal

    the reason I think it would be neat is bc I consider most everyone on here to be almost a "family" of sorts and I would love to be able to put faces with the names of those I consider so dear

    oh and I am the one holding the stuffed dolphin (couldn't get my cat and bunny to pose....and I love dolphins - my apt is filled with all sorts of dolphin things & my interest in them is one of the few things I can still hold onto even while being sick)
  14. Finch

    Finch Down With the Sickness

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    Bluebird, Teej, Adam, Tammie - whoever else I'm forgetting ... it's so nice to be able to put a name to the faces (even if they're nicknames) and the messages people post here.

    So in that spirit - Finch sighting is at 1:56.
  15. starryeyes

    starryeyes Senior Member

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    I won't tell who's who because some have asked to be anonymous. I also feel like we're all a big family and I know it's nice knowing who's who so if anyone is comfortable saying who they are, feel free to.
  16. SeaShel

    SeaShel Senior Member

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    I'm at 1:06

    Here are two of the most important comments I got from posting the video link on my Facebook.

    "Its important to re-educate the public because there has been so much confusion to date. Kudos for taking part. Encouraging and hopeful signs are on the horizon and its nice to see you be a proactive part of that challenge."

    "Shel, I am just really appreciative of you. I am sorry that you have this wicked disease and we need to educate everyone about it! This was a great education, and "we" all need to be aware of it. It was an eye opener for me.......Wow, didn't know so many things about this disease! Sounds like you are doing a great job getting the word out there. We were discussing this at work today. No one has any understanding of it. Like you said they felt people could just overcome it.
    I will help all I can, keep me informed."

    Teej and Mr. Teej and Cinderkeys, I think they speak volumes to your work, and your success at how powerfully you got the message across. Both comments are from people I had been out of touch with for many years. Someone actually started at conversation at their workplace!! I think that's HUGE!

    You have made a difference! How cool is that!?!

    Shelley
  17. gracenote

    gracenote All shall be well . . .

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    Okay, I'll out myself. You'll find me at :52 (though that's not the view out my window which, in the photo I sent in, has a lovely tree instead), and at 4:00. (Photos were taken by myself using my Mac laptop, an interesting and quite funny challenge.)
  18. dannybex

    dannybex Senior Member

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    Wow. Tee...I am so sorry to hear you are so disabled. Of course most of us really don't know each other, except through our various exchanges on the boards, and when I've seen your posts from time to time, I just (mistakenly) assumed you were "high-functioning" because you've done so much here and you've written what...1300+ posts?

    I've been going to a local support group for the past six years now, off and on, but even then we still don't really know that much about each other...because during that limited time, we spend what little 'energy' we have talking about symptoms, protocols, the isolation, etc., etc..

    But just last week a friend in that group posted my blog to the local yahoo group, and so some members saw some of my ancient artwork, and I found out that one of the group members was an art teacher before she got sick. I knew she was a teacher, but had no idea she taught art, and just last night I asked if she'd send me a jpg of one of her paintings...and it was really AMAZING. Makes my stuff look like.......well, I guess there's not an icon for that word. But it was so beautiful, and I feel bad that in all these years, I didn't know that side of her at all.

    I'm going to ask her if I can post it on my facebook page, as it's really great, and come to think of it, maybe others would be interested in sharing their artistic talents as well?

    d.

    p.s. I'm glad to hear you've stopped pushing yourself. It's SO hard isn't it...but so crucial. I'm finally so bad off that I can't push myself, so I guess the body has a way of shouting "STOP!"...doesn't it?

    p.s.p.s. Thanks to others for pointing out where they are on the video. I'll take some notes tomorrow and figure out where everyone is...
  19. Frickly

    Frickly Senior Member

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    Hi guys...I am really tired it is way past my bedtime...but. I posted this on my facebook wall and had two friends from college contact me. One is a disability attorney...I know what your are thinking. But, He is a really good guy and has represented several people with this disease. He said to please let him know if anyone needs help as he thinks the attitude about cfs from employers and insurance companies are so wrong. He is awesome!

    Also, Another friend contacted me saying she was diagnosed with EBV when she was 18 and she keeps getting it. In fact, she just got a blood test back saying she had high numbers..again. She says she is not as sick as me but to the point where she really needs help. She has all our symptoms. She asked for my docs name and number and I think she is going to make an appointment.

    It was frightening to put myself out there like that but think it was worth it. Everyone involved in this video should feel very proud. :)
  20. Finch

    Finch Down With the Sickness

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    Hi Frickly and Danny! It's wonderful to see you Shel and Gracenote. Excellent job with the photography Gracenote, and I'm so glad you have a lovely tree to look at!

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