-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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All you Jerseyites, it's important we support these showings - especially in a hospital. If we fill the place, the powers that be will take notice. It's all about getting the word out, making people aware of the real story!
Even if you have seen it, come and bring family and friends...best way for them to understand what it's all about.
I know there are plenty of people on lymenet in Central NJ.
Spread the word!
Posts: 39 | From NJ | Registered: Feb 2008
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posted
Great! I'll spread the word! I;'d love to meet some of my fellow lyme netters there that night... maybe we could arrange something..
Posts: 368 | From freehold, nj | Registered: May 2007
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bettyg
Unregistered
posted
for those organizing the UNDER OUR SKIN documentary filming, please consider this as we need to continue raising private money to go for dr. jones defense fund monthly!!!
please have a DR. JONES DEFENSE FUND JUG AT EVERY DOOR which people will use to get in/out of filming.
also, have a sheet of paper with dr. jones defense fund mailing address for donations with all the info
also his private address for letters of encouragement and thanks for the over 10,000 kids he has treated.
perhaps additional links also:
Dr. Burrascano's most recent "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @ http://www.ilads.org/burrascano_0905.html suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
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posted
I've already been to one screening and it was a very powerful experience. If I can make it I sure will be there.
I do have one question/suggestion,,,what are the organizers plans? It would be great to hand out name tags for us to put our screen names on.
The last one I went to you could see people looking around the room but too shy or nervous to introduce themselves.
It looked rather unconfortable for those who didn't already "belong" to the sponsoring group, almost too "clickish" with small groups gathered in the back. Will there be a 'meet and greet' organizer?
proudmom
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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posted
Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Great job!!! Thanks mtree!
I'll go mark my calendar.
I would think that a really good turn out could certainly make a statement. I think it is absolutely FANTASTIC to see this in a local hospital!!!!!
I hope and PRAY it will make a big impact in my area. There's a PA who saw me in the emergency room of that hospital that I think could benefit from being MADE to watch it.
Maybe then she'd think twice about doing what she did to me to another patient. (Not that I'm bitter about it )
Can we send out invitations to other area hospitals & doctors? Maybe they might attend if it's being held at a hospital. How AWESOME would THAT be?!!!!!!
I wonder if I could develop a mailing list. I used to know how to do that. I should check with the organizers & see what their plan is. Maybe I can help out with something.
Maybe we could just wear a little green ribbon or something to let others know we'd be interested in talking to fellow Lymies. That would be easier & less distracting than trying to organize name tags, but that's just my opinion (and I'm a Lymie so I'd want to take the easy way out ).
Perhaps we could have a "support group interested" list, for those of us that have been trying to figure out how to get something together.
People, who would be interested in joining a support group in the vicinity, could leave name & contact info. We could try to get everyone together from there via group e-mails.
I'm wondering whether the people who organized it would be able to turn it into a fundraiser because it IS in a hospital that's not affiliated with any of the LLMDs. I'd have to think they might have to be careful how they approach that, but what do I know?
If it's the organizers' place of business, I'm not too sure how well that would go over with any non-LL doctors that might be in any authoritative positions there. If they don't have any ties to the hospital, they probably wouldn't have to worry about making waves.
Though it would be great if they COULD have a place where those interested in contributing could do so.
Thanks again mtree! Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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quote:Maybe we could just wear a little green ribbon or something to let others know we'd be interested in talking to fellow Lymies. That would be easier & less distracting than trying to organize name tags, but that's just my opinion (and I'm a Lymie so I'd want to take the easy way out ).
Sounds like a great idea! I thought I saw somewhere Lyme pins, or are you thinking of making your own?
mtree Will there be any speakers? And also if I don't have the grandbabies in tow, I would love to help at the screening if you all need any.
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
proudmom,
I hadn't actually given that thought yet. I don't have any green ribbon on hand, so I'd have to go find something somewhere.
Has anyone seen mtree around lately? I haven't seen her. I hope she's OK.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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I will have to get back to you all in a bit...waiting for more info from Dh today about the screening....
I'll fill ya in...
so nice of everyone to chime in...
also in Activism someone replied to my post about the MS Center that is at the hospital...
the director will be personaly invited by Dh...
chat with ya's in a bit.. mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
Ps.... I have green ribbons about 20 or so....
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
Well I'm so happy everyone has suggestions and have offered to help.....what good lymies...good people...
Hhhmm...
First off......I have to give credit where credit is due....
My Dh has been pushing this screening along to be seen at the hospital's new Health Awareness Center.... he is the``organizer''...CentraState is hosting it...the auditorium holds up to 200 people...CentraSate is where he works...and he is well respected there......... DH!!... ...
So with that we (him and I) want to respect his place of employment...and what they would like and not like at the screening..(they have been very supportive).....and because it is hosted by a growing reputable hospital in NJ we want it to be successful... ......you know as well as I know that lymies have a reputation of being crazy... ....
I have spoken to a couple of people that were the organizer's of the last screening in NJ...a great turn out they had and they gave us great do's and don'ts..
My Dh and I have one main goal for that night and that is to promote the film......and to make people aware of the lives that have been effected by this disease...
It can't be a place/night for fund raising ..sorry...BUT if all goes well that night there might be one in the future....
We never had any plans to have a doctor panel discussion...we wanted the medical community that is unaware of the controversy to come and decide for themselves where they sit in all of this... .... maybe THEY will pass it along to other hospitals and medical establishments. ... ..
.................................
Ok.. Getting the word out.. Dh will be working with the hospital PR department with getting..the UOS posters...flyers...etc.
...Dh will personally be inviting .. The Chief Medical Officer, VP of nursing, all nurse managers, Director of the MS Center....hhhmmm who else did he say.....
He will have posters (UOS posters) with the screening date and time ... ......in the Physicians relations department.... hospital employee dinning area .... Flyers will be in the Physicians chart room, lounge and private dinning room....
On another note...I have a Kim...everyone should have a Kim.. ...she's my very best friend and works at the Monmouth County Library in Manalapan....she will be promoting the screening as well....sending out possibly 200 flyers at various libraries... (She already has it set up to have a screening in May at the library for Lyme Awareness month.. )
I think that's it for now..... Oh... .....we thought to have a ``guest'' book to sign if anyone would be interested in getting together for support...friendship...a cup of coffee....not-so-much an informational ``support group''....we all can get lots and lots of valuable information on LymeNet....
Anyone that wants to make aware that they are a lyme netter could where a green ribbon...I think that's better then name tags....because you can then keep your private member name...a green ribbon will just inform someone that you are a member of Lyme Net or have lyme... : ) ................................
Any thoughts on the planning/organizing so far?? Good ...bad..??...suggestions and thoughts are welcome...
...........I hope it is a success...it's an outstanding documentary...
There will be a cure someday...no doubt...but until then we lymies can help pave the way for new lymies and rid this ridiculous thinking that there is no such thing as chronic lyme... maybe tons of people will suffer less then us and get respect from the medical communities....
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
How about refreshments? Water and maybe tea? Cookies and such for the guests. Sorry folks just remembered diet. Oh well, something would be nice and makes for good socialiation at the table.
The last one I went to had us RSVP because of limited seating and when we got there they had our names on a list.
proudmom
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
(((((mtree)))))
YOU ARE AWESOME!!!!! DH is AWESOME!!!!! and Kim is awesome too! (sure wish I had one of those!)
THE DIRECTOR OF THE MS CENTER?
You stand to make such a HUGE difference in my life, through your efforts! THANK YOU!!!!
I'll have to remember to stop taking Zhang's Allicin at least three days before so I don't repel everyone like a skunk (talk about feeling awkward! )
If I forget, you'll likely see me standing in a corner by myself, so if you see me there, please someone put on some nose plugs & come say hello.
Did I say thank you?
THANK YOU! THANK YOU! THANK YOU!!!!!!!!
(((((GREAT BIG GIANT HUGS))))) Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
PS- You're awesome!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Proud mom...hhhmmm...I will check on refreshments... .not sure if we can do that....I'll talk to the guy that's in charge of the food at the hospital .. see what he can drum up...
Thanks for offering to help.... We do know about the RSVP that the other screening had...I think when you do call to reserve seats you give your name and how many seats you want....I will check on that...
....and I too dislike the ``clickish'' group type's that happen ...hard to prevent that though.. ...............................
Alig....
..maybe we can get the hospital to give us masks.. .. I'm sure your not the only lymie that's taking that.... .......sorry I just had to.. ... ...eat some parsley??.....I don't know if that would really work for what lymies are taking...but coming from an Italian family that loves yummy garlic ...you are supposed to eat parsley...????..ick!!...maybe its just my Italian family that thinks that though...
................................
Any thoughts on green ribbons for the lyme netters anyone?? How about the ``guest'' book....??
Thoughts and suggestions are welcomed...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
I like the green ribbon idea.
Posts: 368 | From freehold, nj | Registered: May 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I'm BEYOND parsley!!!! They couldn't possibly have masks that could save anybody from my wretched stench!
I've finally gotten around to picking up some chlorophyll capsules.
The only problem is that I couldn't smell it myself before, so I really don't know whether the chlorophyll is helping.
I'm going to stop the Allicin for a few days, just in case everyone around me has become immune too.
I like both ideas.
It's not like anyone would have to wear a ribbon or sign the book, if they didn't want to be known.
It would be nice for us to have a way to find others who might want to get together to and and possibly about things that we are dealing with.
I think most of us can find the scientific stuff online. It might actually be nice to have a break from it, since a lot of it can be really depressing.
I JUST had a thought!
You know what I think would be REALLY great?!!
It would be tremendous if, after viewing the film, some of the doctors there decided to get deeper into researching TBDs and start a hospital-sponsored support group with guest speakers & such.
Of course it IS entirely possible that there may already be LL/LFMDs working there and I just haven't heard of them. I certainly don't know everything there is to know, though I sure wish I did.
I haven't heard of any in ANY of my local hospitals except maybe one or two that are +/- an hour away from me and I think those only have one or two LL/LF doctors.
Can you imagine if the WHOLE hospital went LL, even the ER?!!!!! they'd probably be the first in the country! I do let my imagination get carried away sometimes. It's nice to be able to dream of a brighter future.
[ 14. September 2008, 12:57 AM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
..."It would be tremendous if, after viewing the film, some of the doctors there decided to get deeper into researching TBDs and start a hospital-sponsored support group with guest speakers & such."
I'm pretty sure we can have a support group meet there...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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I did notice that on the Under Our Skin web site that there is no dates for a screening anywhere in Vermont...not yet anyway.. ...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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if anyone would like for me to send them the flyer that was made for the screening you can PM me your email address and I can send it to you....then you can print it out if ya want...
colored posters were made as well...they look great..
hope you are spreading the word..
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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Wow it would be a shame if we don't get a good turn out for the screening...
very feww registered so far...
really this is a great oppurtuntiy to be heard at a Medical Center
we need the word out...and flyers out..
the hospital is taken care of...posters...flyers....personal emails...to top admiistraters...nurse managers..VP's...
we need to hit the general public too...schools..etc.
if anyone can help it would greatly be appreciated....
if there are not many people that go...what is that going to say to the Medical community...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Did you talk to the local papers? Maybe they could run an article about it.
There was one in the local paper when they did it at East Brunswick, I think.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Did you talk to the local papers? Maybe they could run an article about it.
There was one in the local paper when they did it at East Brunswick, I think.
I sent you a PM & cleared some room in my box.
I'd love to help do whatever I can!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
I missed seeing the info. on how to register. Where or who or how do I register?
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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on October 6th there will be a screening at this Medical Center....
do I need to see this film again???does my family need to see it again..? Dose my family that is traveling from out of state to come that night...that has already seen it need to come see it again....?
...the answer...nope...
BUT we all think it is really important to fill up those seats.... will we get a good turn out with the medical community..not sure yet...
but they will know about the turn out....they will hear if it was a success...they will be interested in....hhhmmm why so many people came to see this??
Are ya getting what I'm saying fellow Lymies...?
Even if you have seen this film come....come support us.... if you haven't seen it....why??
It is a voice for us...a good one.....no a great one!!!
please consider coming....lets fill up those seats...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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we gave resident doctor the DVD...she was very surprised at what she saw...
she will be coming on Monday night...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks to all who attended & those who spread the word!
We filled all the seats & they had to bring in extra chairs!!!
Thanks to mtree & hubby for making it happen!!!
I believe that you did a very good thing for our community by getting the doctor to watch that film.
In reflecting, I realized what I think she took away from it. I believe that she will no longer rely on the bulls-eye rash or test results to diagnose patients.
I also noted that she picked up on stabilization or resolution of symptoms, as being necessary before even getting to the point of "re-treatment" and then considering "chronic lyme".
If she tries to treat patients to resolution of symptoms, she will surely realize that "28 days" is not as effective as IDSA would have her believe.
CONGRATULATIONS!!!! I believe you will be able to take credit for "educating a duck"! I hope it's contagious!
I also hope it will generate some talk in the hospital.
mtree & hubby, I applaud you!
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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mtree
![[Wink]](wink.gif)
![[Big Grin]](biggrin.gif)
![[kiss]](graemlins/kissing.gif)
![[hi]](graemlins/hi.gif)
![[Smile]](smile.gif)
![[woohoo]](graemlins/woohoo.gif)
![[confused]](graemlins/confused.gif)
![[Razz]](tongue.gif)
![[dizzy]](graemlins/dizzy.gif)
....![[lol]](graemlins/lol.gif)
...she's my very best friend and works at the Monmouth County Library in Manalapan....she will be promoting the screening as well....sending out possibly 200 flyers at various libraries...![[bonk]](graemlins/bonk.gif)
.....we thought to have a ``guest'' book to sign if anyone would be interested in getting together for support...friendship...a cup of coffee....not-so-much an informational ``support group''....we all can get lots and lots of valuable information on LymeNet....![[lick]](graemlins/facelick.gif)
Sorry folks just remembered diet. Oh well, something would be nice and makes for good socialiation at the table.![[bow]](graemlins/bow.gif)
![[Roll Eyes]](rolleyes.gif)
(talk about feeling awkward! ![[loco]](graemlins/loco.gif)
Italian family that thinks that though...![[Eek!]](eek.gif)
They couldn't possibly have masks that could save anybody from my wretched stench! ![[rant]](graemlins/rant.gif)
about things that we are dealing with. ![[Frown]](frown.gif)
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