If you would like to be active helping all of us, GREAT! We NEED YOU!
You can check with local support groups for updated information and suggestions if you are new at this.
You can join lists to have updated information sent to you so you know what is going on.
You can contact local or national groups or organizations with your ideas before you invest your precious time and energy and money into a project. Someone will be happy to advise you and provide you with tips to make your idea more successful.
The ONLY requests I have would be, IF you would like to do something to help...
1. Check to be sure what you plan to do is not being done already by someone else, so we don't duplicate each others efforts or interfere with a plan that is already in progress.
2. Do your thing and enjoy doing it. But when discussing it or posting about it, don't beat down others for what they are trying to do or have done or haven't done in the past.
I think if we could all be respectful and abide by these common sense rules, we could make activism a nicer thing to do and it would be much more effective.
Thanks!
Posted by bettyg (Member # 6147) on :
thanks for the reminder; we can agree to disagree, but be NICE and fair. Posted by Tincup (Member # 5829) on :
And know what is going on so we don't hurt... rather than help the situation. That is VERY important too.
Thanks BG.
Posted by bettyg (Member # 6147) on :
Kayasdad,
i've dealt with your wife, and they have NOT been pleasant to say the least.
she is very verbal and attacks often as she has PUBLICLY done to me here from her 1st few days on this board. to date, she has never apologized to me either.
so dad, apologies work both ways; NOT one-sided ok.
dad, so food for thought on this one...
we are ALL fighting to get our lives back from lyme.
i know also as parents, you are wanting to get things done just as we/lyme patients are.
so we agree to disagree especially on what you just posted. i do understand. peace. Posted by Robin123 (Member # 9197) on :
Kayasdad, I saw strengths in everyone, and differences in opinions.
Strength: the incredible work you did to help your daughter get help. Kudos to you for being there for her!
Strength: TC suggesting that everyone work together and not separately on the advocacy.
To respect the work being done by the big organizations who have been there for the long haul.
That is also a difference of opinion. Some here wanted to go ahead and express themselves to various entities involved in this guidelines process, and did so.
If we have a difference of opinion, for the sake of everyone's nerves on the board here, I think it's best to simply state we have a difference of opinion, and not to start yelling here at each other.
Yelling at one another can result in threads being removed because they are too unpleasant for people to read. Hope this helps. Peace.
Posted by lou (Member # 81) on :
The problem is that no one knows what is being done and has no way of finding out and the response to outside ideas is nonexistent or negative.
There needs to be a way for everyone to contribute and we need to be open to alternative approaches. No one can say they have the silver bullet, so allow multiple paths.
Posted by Tincup (Member # 5829) on :
Kd said.. "The irony is that it was Tincup who caused her such stress after he/she suggested that my wife has no respect for Lyme doctors, patients or their families."
Tincup- it's a she.
You probably don't remember me though, but no big deal. I'm the one who worked with you all last year to get your daughter's medications when you were denied by your insurance company. I hope that you are still getting them.
I'll continue to pray for your sweet daughter, who I hope is doing better after seeing our wonderful Dr. Jones... and your two littler ones... and of course, you and your wife.
Take care of you.
Posted by bettyg (Member # 6147) on :
kayas mom,
thank you for coming to this post and posting!
i accept your apology, and it's now WATER OVER THE BRIDGE OK! PEACE
i will now take you off my IGNORE list as well to pm you if the situation arises again. i couldn't send you since you are/were on mine!
yes, we must each FIGHT for whoever of us does have lyme/co-infections and in such bad shape as you mentioned the possibility of your daughter dying.
all 3 of us are very verbal, and none of us hold back; but it can be done civilly, nice, and as tactful as any of us are blessed to be.
i struggle on that point; just warning everyone now since i can't think of words and really struggle. so i use what comes to my mind.
anyway, as far as you/me go ... no hard feelings; WE ARE MOVING FORWARD just as we are in trying to get into full-time REMISSION!!!
LYME PATIENTS UNIT, and not fight each other; fight the IDSA crap going on! Posted by proudmom (Member # 15532) on :
Thank you Tincup for this post. I ran into someones.......how shall I put it?.....shot down when I posted what i wanted to do and how I felt.
Basically I was told that other people were already doing lists and such and there is no need to duplicate info.
I was on another site and she told me to come here. I love it here but there are lots of other people on other sites that don't come on here.
I was kinda hurt, like she was saying that my help wasn't needed because others were already doing stuff.
Blew the wind right outta my sails. You and many others here are fantastic people and I'm soooo grateful for all the hard work you do.
Just a "tiny" vent here, Hugs and loves, proudmom
Posted by Tincup (Member # 5829) on :
Hey Robin 124372847,
Your emails aren't going through. I tried 2 times today in response to your earlier email. It says your box is full.
Proud...
Nice to see you! How's our girl doing?
And you too?
And don't you worry about having things to do. If you want a project I have them stacked up here so high, you wouldn't believe! And within a week.... I believe, I hope cause I am tied of waiting... the BIG ball will be rocking and rolling. Soooooo...
Just ask and you shall be used up royally!
And thank you for wanting to help!
Let me know how you all are doing.
Kayas mom...
I'm sorry your feelings were hurt. I am sorry for anything I said that upset you.
I wish only the best for you and your family.
Posted by Robin123 (Member # 9197) on :
Hey, TC, try again - I was away - looks like when away, the emails will play...
Posted by mushroomman06 (Member # 13088) on :
T.C.
I want to help. you say you have other projects stacked high. Let me know what some are and I will see if I can be of assisstance on those that are to be done.
Posted by Tincup (Member # 5829) on :
10-4 Robin...
Mushroom.. beautiful mushroom.
THANKS for offering.
The push right now is doing the state fact sheets.
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