note: TAKE 6TH/duff west ................................
AMES, IOWA
Discussion will be led by me, Bettyg, afterwards.
This is a free event. *********************
IOWANS COMING,
please reply below with your 1st name and how many will be attending please.. --------------------------------------
so handouts can be printed and enough be present; thank you!
BettyG
will print rest of info when I can talk to head person at library. **********************
hi all,
last night i finally was able to get some action from our Ames, Iowa public library to have UOS dvd to air there on Sunday AFTERNOON, Nov. 2, 2008.
time to be announced ASAP
more details to come; she had to leave for weeklong library conference so we couldn't make more details when she called.
my request sent over 2 months ago got lost in the transition of new duties being reassigned!
i've worked over 2 months also with our hospital; again, new people coming on board and my request was lost in tracks! sounds just like lyme doesn't it?
so for those living in AMES, IOWA area, please mark your calendars to attend this FREE event! thanks.
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Betty,
I spoke with a young anesthesiologist from Iowa on Tuesday. He said he hasn't seen many patients in Alabama with Lyme disease, but said it's very common in Iowa.
At least one Iowa doctor understands it's not rare.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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bettyg
Unregistered
posted
hi mom, your MAILBOX IS FULL...
how did you happen to talk to this dr? on your kids?
interested if you'd share briefly with me!
thanks for replying to my post!!
hope your daughter is better! xox ******************************
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi Betty,
Awesome of you to want to do this. As one who has hosted a filming myself, and assisted in a small way with two others, I am well aware of the planning involved,so congrats to you in advance!
I would suggest that you not have a big group discussion afterwards, but instead supply some refreshments (if it's okay with the library), and have a few people (perhaps wearing green ribbons) around who can talk to those with questions.
Why?
1.) The film is pretty long (105 min.), and some people may want to leave, but feel it would be impolite to cut out on a formal discussion.
2.) Some of our patient population may need to leave right away, due to health issues.
3.) Cognitively-impaired Lyme patients sometimes have trouble communicating, including being unable to summarize. Long discourses on people's individual symptoms will only tend to take away from the power of the movie.
4.) You may be able to give better support and referrals one-on-one than as a big group. Many people don't open up in a big group, but might to one or two people.
As they say in the theatre, better to leave them wanting more....
-- Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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bettyg
Unregistered
posted
shaz,
thank you for the wonderful, personal experiences and recommendations!
library doesn't allow refreshments.
i hope those locally in the area will contact me letting me know they are coming, and i liked your suggestion of wearing a green ribbon so folks could ask 1 on 1 questions privately vs. large group setting.
again, thanks shaz for taking the time to give 1st hand experiences!!
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
You're welcome. The reaction to the movie I hosted was more than worth the effort. I was truly moved by the audience's response. This film does make a difference, and I am grateful to Andy Wilson and Open Eye Pictures for having the guts and dedication to take this on.
Incidentally, your library has "Nature Noir" by Jordan Fisher Smith, who is featured in the movie. If the library is doing a display on their Lyme collection (which has grown since I last looked -- Betty, did you have a hand in that?) they might want to add that.
-- Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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bettyg
Unregistered
posted
shaz,
again, thanks for your recommendations! is the book you mentioned about LYME too? i'm unfamiliar with that one!
yes, i'm responsible for their adding to their library contents on lyme.
i'm planning on having them print up a list of ALL LYME books, fm, chronic fatigue, and irritable bowel/bladder books STOCKED in their library ... and hand out that day.
that reminds me; need to look to see how many igenex blue western blot igm/igg brochures i still have and current price list!
shaz, you rock! you keep me on my tippy toes!
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Nature Noir is by Jordan Fisher Smith, who is the ranger featured in the movie. (He's the guy who dumps a pile of meds on the kitchen floor; and in the last scene, he is hiking on a mountain with his kids.)
The book is about his life as a ranger. In one of the final chapters in the book, he describes how he had to give up being a ranger because of Lyme.
Another one in that category is The Opposite of Fate, by Amy Tan, which your library also has. Amy appears in a brief cameo in the movie, saying she had had hallucinations from Lyme. Her Lyme story is in the last chapter of her book.
-- Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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bettyg
Unregistered
posted
shaz,
you are a wealth of info!! wonderful, and thanks for telling me what that was about since i was gone most of afternoon! big thanks!
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posted
I am sure that most Iowans involved and receiving the LDA of IA newsletter know about the free Under Our Skin screenings organized by official LDA of IA happening in Davenport, Council Bluffs, and Sioux City Iowa as well.
If you are from a surrounding state in close proximity to those areas, you may want to consider attending those screenings instead if it is shorter than driving to Betty's. Just wanted to make sure everyone knows about all the options available to them for convenience sake.
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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bettyg
Unregistered
posted
robin,
BETTYG DAY
i enjoyed my day and showing off our pride and joy in educating the public!
i had the PLEASURE OF MEETING IMANURSE personally today at iowa's 1st showing of UOS! we had a nice visit afterwards.
to clear up the misunderstanding, when she said official, it was the concept that this was a lyme ORGANIZATION showing this vs. being in someone's home on a "personal" showing.
so we cleared up that misunderstanding and a couple of other things. **********
it was 70 outside so we had a small attendance of only 8 people!
5 had lyme 1 possibly 1 mother of lyme patient 1 library asst. director
no kids or babies there so we could hear this very serious film. many tears were shared today.
had a nice Q/A afterwards for those who wanted to share. our only man had just completed his rocephin.
i gave them the latest of iowa politics who had signed on co-sponsoring our lyme disease bill and also that obama had as well.
we had some 1 on 1 and i appreciate shaz's help in things of being organized for this event.
all wanted to see this or something like this again in the future; all POSITIVE FEEDBACK COMMENTS!!
ALL were impressed by the magnitude of what was discussed, shown, and editing job involved in this huge project!!!
Way to go ANDY WILSON/OPEN EYE PRODUCTION STAFF!! ******************************************
our librarian was saying their library will NOT let dvds be lent out on INTER-DEPARTMENTAL loan. i didn't know this until now.
hope all your showings go well and you have a FULL HOUSE; all took their handouts i had available for them.
we were small, but had plenty of quality time where all would NOT have been able to talk afterwards before library closed.
she/i were walking out the door at closing time!
thank you all for indulging me in the 10 days until the screening since it was all last minute arranged since my request kept falling in their "CRACKS"!
i'll support upping yours coming up within days of VIEWING... teamwork in getting out the word!
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Glad to hear you had a productive and enjoyable time, Betty!
It is not unusual that libraries not let their DVDs out on interlibrary loan. Some libraries are worried that their best stuff will always be out to libraries with no budget to get good stuff, and some libraries charge a fee for lending, which would be impossible to keep up with through interlibrary loan.
Now, get some rest -- you earned it.
-- Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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bettyg
Unregistered
posted
shaz, thanks for your comments and HELPFUL suggestions!
i agree; that took a lot out of me that i even forgot to go on sat. morning to a yearly diabetes conference which had lunch too!!
it wasn't written on calendar, so i completely spaced it off making sure i had everything for sunday afternoon and getting much needed rest!
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bettyg
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posted
adding this for others who happen to see my post and can use suggestions for THEIR CITIES SHOWING!!
i typed this up and had printed and given to EACH ATTENDEE letting them know about dr. jones legal fund and pleaing for them to donate for his cause since his monthly bill runs $90,000 to $100,000 !!
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! 149 pages of good info !! @ http://tinyurl.com/58eyou IGENEX ``Lyme diagnostic'' lab, Calif., 1.800.832.3200; www.igenex.com and ALL 15 protein bands are shown on lab results!! CALL THEM FOR CURRENT $$.
If you would like to send a letter of SUPPORT or thank you to Dr. Jones, please send to: Dr. Charles Ray Jones 111 Park St., 1st floor New Haven, CT 06511 HOW TO DONATE TO KIDS LLMD DR. JONES LEGAL DEFENSE FUND:
Make Donations payable to: " Pullman & Comley Trust Account-for Dr. Charles Jones" Mail to: Elliott Pollack c/o Pullman & Comley, LLC 90 State House Square Hartford, CT 06103-3702
posted
one of our members asked me how i contacted our local library, and that i put my notes on my posts; so this is why it's being added now!
Nancy,
Here's what I did, and I'm capitalizing to put it on my posts about UOS.
1st, if you have a HOME copy, it can NOT be shown at library; only their COMMUNITY copy can that you pay $101.00 total for dvd/postage/handling.
Below is what I sent to our public library and also to our hospital's CEO: Below you will find details galore I wish to share with you.
I'd like AMES PUBLIC LIBRARY to buy 1 copy of UNDER OUR SKIN, 104 minute DVD, and then have one "FREE" viewing.
So a total time of 2.5 hours would be needed for Aud.
This documentary has all the latest news of what is happening in the Lyme world that has been shoved under the rug by the majority of doctors.
I was bitten by a tick that came off my folks' LIVE Christmas tree 1969; I never saw it nor did I have a bulls-eye rash. I got quite sick and went to a local dr. in town who had an opening that day. He diagnosed me with mono/Epstein Barr virus and confined to bed for 2 weeks.
That was the beginning of my chronic Lyme being misdiagnosed for 34 years by 40-50 McFarland Clinic doctors out of 38.5 years I've had this!!
Since I've kept a journal since becoming a teenager, I used that to pinpoint when and where I was bitten since Iowa is sub-zero weather; I was not a gardener then, and my roommates did NOT have pets who could have had ticks on them!
This would be a wonderful "training" tool for the public since Lyme disease mimics 300 OTHER illnesses! I was very bitter at first until I began all the Lyme research I've done the last 4 years, and learned more.
Sincerely, BettyG
PS.. I ended up BUYING/donating this to our Ames library for showing and to be checked out! They currently did NOT have the funds and never pay $100 for any DVD! ****************
I'd like the hospital to buy 1 copy of UNDER OUR SKIN, 104 minute DVD, and then have TWO ``FREE'' viewings: one for public during a weekend afternoon and the other one: for hospital/CLINIC DOCTORS. ---------------------------
I also have in mind to ask the new infectious Dr. Kabbesch to be on a panel discussion AFTER the documentary ends with me and possibly one chronic Lyme literate MD, LLMD, if he is willing to do this.
So a total time of 2.5 hours would be needed for the Aud.
This documentary has all the latest news of what is happening in the Lyme world that has been shoved under the rug by the majority of doctors.
I was bitten by a tick that came off my folks' LIVE Christmas tree 1969; I never saw it nor did I have a bulls-eye rash. I got quite sick and went to a local dr. in town who had an opening that day. He diagnosed me with mono/Epstein Barr virus and confined to bed for 2 weeks.
That was the beginning of my chronic Lyme being misdiagnosed for 34 years by 40-50 McFarland Clinic doctors out of 38.5 years I've had this!!
Since I've kept a journal since becoming a teenager, I used that to pinpoint when and where I was bitten since Iowa is sub-zero weather; I was not a gardener then, and my roommates did NOT have pets who could have had ticks on them!
This would be a wonderful ``training'' tool for all doctors since Lyme disease mimics 300 OTHER illnesses!
I was very bitter at first until I began all the Lyme research I've done the last 4 years, and learned more.
Sincerely, BettyG ****************
ALSO, here is what SHAZDANCER wrote for me that was emailed to our library supporting the showing of the film!
``Under Our Skin'' was made by Open Eye Pictures, a professional documentary film production company with over 20 years' experience.
Back in the day, their work on AIDS helped raise awareness of the discrimination that patients were suffering in addition to their ills.
I personally contacted someone who was the subject of one of Open Eye Pictures' films (choreographer Anna Halprin) for information about the director's work before he even began the film on Lyme, and she gave him a ringing endorsement.
The film has been screened at several film festivals around the country, and has earned a ``Freddie'' award for its reporting on an infectious disease.
The film was underwritten in part by a grant from the Turn the Corner Foundation, a 501 ( c) (3) whose purpose is ``dedicated to the support of research, education, awareness and innovative treatments for Lyme disease and other tick-borne diseases'' (from their mission statement).
I had the opportunity to have the movie screened at our Public Library in Maine. Over 60 people attended, one of our larger audiences for a library event.
My director has noted it in her report to the City Council as one of the notable events of this year.
I recommend the film to you as quality (though controversial) information for your community. If you have any further questions about screening the film or about the contents of the movie, feel free to contact me.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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