Monthly Archives: December 2015

End of the year news

Happy Holidays to everyone! We had a wonderful last meeting of the year yesterday, thank you everyone for coming! Here is the information for the next two meetings we have booked. We may meet in February as well but do not have a room booked at this time.

January 23rd RI EDS Awareness and Support Group Meeting 2pm-4pm Warwick Public Library SMALL Meeting Room 600 Sandy Lane Warwick, RI 02886. This will be a workshop style meeting; we will be talking about the plans for the year ahead. We will be asking our members what speakers they would like to have in the 2016 year. We will also talk about the different conferences happening in 2016, and awareness events and advocacy opportunities that are available!

March 26th RI EDS Awareness and Support Group Meeting 2pm-4pm Warwick Public Library LARGE Meeting Room 600 Sandy Lane Warwick, RI 02886. Speaker TBA

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MEETING TOMORROW 12/12/15

Meeting Reminder: Our December meeting is this Saturday December 12th from 2pm to 4pm at the Warwick Public Library in the LARGE room on Sandy Lane in Warwick RI 

We will not be having a speaker this month. Instead we are going to talk about how to prepare for a new doctor appointment, hospital stay or ER visit. We will also be talking about tips and tricks that we each have discovered along the way. We will also talk about upcoming events and the year ahead. This will be a social workshop style meeting, I hope we have lots of participation! If you can’t make the meeting but would still like to share some tips and tricks you have learned along the way, email them to me at krista@rieds.org  The meeting will end right at 4 this weekend, but you are welcome to remain at the library or meet up at the Dunkin Donuts nearby to continue chatting with each other! 

I’d also like to thank everyone who came out to the party last weekend! It was a great time and there are lots of pictures up on the event page for anyone who wants to check them out!

At PT Trish gave me homework – to rest. I don’t do that well so she added on that I should work on a song I sing sometimes while she is treating me, so please thank Trish for this:

 For my fellow Zebra’s – EDS Days of Christmas

On the first day of Christmas Ehlers Danlos Syndrome gave to me, A Tethered Spinal Cord and a Chiari (KeeRREEE)

On the second day of Christmas Trish Meegan (my physical therapist) fixed for me, two slipping knees, a tethered spinal cord and a Chiari

On the third day of Christmas the hospital gave to me, 3 IV bags of fluids, two slipping knees, a tethered spinal cord and a Chiari

On the fourth day of Christmas EDS gave to me, four doctor appointments, three bags of fluid, two slipping knees, a tethered cord and a Chiari

On the fifth day of Christmas Eric Palmer(Orthotics) gave to me, five helpful braces, four doctor appointments, three bags of fluid, two slipping knees, a tethered spinal cord and a Chiari

On the sixth day of Christmas urgent care gave to me, six kinds of crutches, 5 helpful braces, four doctor appointments, three bags of fluids, two slipping knees, a tethered spinal cord and a Chiari

On the seventh day of Christmas EDS gave to me, seven dislocations, six kinds of crutches, five helpful braces, four doctor appointments, three bags of fluid, two slipping knees, a tethered spinal cord and a Chiari

On the eight day of Christmas my EDS friends gave to me eight Zebras Dancing, seven dislocations, six kinds of crutches, five helpful braces, four doctor appointments, three bags of fluid, two slipping knees, a tethered spinal cord and a Chiari

On the ninth day of Christmas Ehlers Danlos Syndrome gave to me, nine complicated surgeries, eight zebras dancing, seven dislocations, six kinds of crutches, five helpful braces, four doctor appointments, three bags of fluid, two slipping knees, a tethered cord and a Chiari

On the tenth day of Christmas Dr. Chopra (My pain doctor) gave to me, ten trigger point injections, nine complicated surgeries, eight zebras dancing, seven dislocations, six kinds of crutches, five helpful braces, four doctor appointments, three bags of fluid, two slipping knees, a tethered cord and a Chiari.

On the eleventh day of Christmas Mike Healy (my Physical Therapist) fixed for me, Eleven slipping ribs,  ten trigger point injections, nine complicated surgeries, eight zebras dancing, seven dislocations, six kinds of crutches, five helpful braces, four doctor appointments, three bags of fluid, two slipping knees, a tethered cord and a Chiari.

On the twelfth day of Christmas EDS gave to me, 12 separate specialists, Eleven slipping ribs, ten trigger point injections, nine complicated surgeries, eight zebras dancing, seven dislocations, six kinds of crutches, five helpful braces, four doctor appointments, three bags of fluid, two slipping knees, a tethered cord and a Chiari

Written by: Krista Brack of www.rieds.org with the help of Patricia Meegan at Healy PT 12/9/15

 Please feel free to correct my grammar, and to customize the song for yourself! Happy Holidays everyone, and if I don’t see you before – HAPPY NEW YEAR

 Our January meeting will be at the same place in the small room, Saturday, January 23 2016 2pm-4:30

 

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