What we're about
GREETINGS TO ALL ZEBRA'S,
A Zebra is one who struggles with an uncommon or rare disorder like Ehlers Danlos Syndrome, Chiari, and/or other related illnesses like POTS, TMJ, Chronic Migraines, Chronic Pain, GI issues, vision problems, unknown causes, and miss or undiagnosed symptoms.
"When one who hears hoof prints might envision a horse because they are not conditioned through education to think it could be a different uncommon health issue like a Zebra's stripes are not all the same making each one unique thus rare".
WELCOME: This meet up is an all inclusive open forum support meet up in a private caring compassionate relaxed family style setting. No matter if you have been diagnosed yet or not we welcome all related illnesses.
All ages are welcome. We do encourage parents to supply children with quiet activities so we can hear conversations that might be important to someone's health. We try our best to keep it family friendly.
ALL INCLUSIVE: Although we utalize a Facebook site no one person or group is in charge of, founder of or owner of leading the meet ups. From the conception of this group there is no director with an agenda and no specific leader of conversation unless a planned theme is agreed upon by the meet up attendees ahead of time because we felt this the best way to better serve each other's needs.
We encourage our members to invite those who may be searching for answers or have already been diagnosed with any related illness. If you would like a copy of a flyer to repost in a Facebook group or any other networking site please contact me.
OPEN FORUM: There are no set times for discussions or coordination of who speaks unless pre planned activities are scheduled. The meeting and conversation starts as soon as the first person arrives when we greet with updates of our health journey. If you feel like discussing a subject or would like more information or just want to share a subject you may at any time during the meet up feel free to do so with anyone you choose to.
However, we all tend to have something of interest to share with the group and listen to each one with concern and respect. We may ask about your journey and life in general so we know how to better support you because we compassionately desire to help in any way we can.
No matter how it is stated in conversation WE NEVER GIVE ADVICE. We only give suggestions that you must decide for yourself if you want to utilize. We recommend AT ALL TIMES you consult a professional medical adviser before implementing any information given by us or anyone.
UP FOR DISCUSSIONS OR INTEREST: Topics of interest and direction of conversations is determined by who attends a meet up. We share information of health care providers, new health information and our experiences with them. You might benefit by bringing a note pad and pen. We tend to discuss life experiences or just sit quietly and enjoy the community of relational conversations. Everything is up for discussion as well as fun and laughter.
We may have pre-planed topics of health concerns for certain individuals or problems faced by our community and/or members open for discussion. Our goal is to create awareness and get as much information to those who need it to help our fellow Zebra's cope with the journey of health life.
COORDINATOR: I Sandy am the coordinator of event scheduling and/or venue and themes but do not act as director. We are all leaders and all are followers. I have many health issues including Chiari, EDS, TMJ, DDD, Bulging Discs, Arthritis, Chronic Migraines, Fibromyalgia, GI Issues, Vision Problems, Thyroid Problems, Myoclonic Seizers, Chronic Fatigue and Pain, maybe POTS and who knows what else.
If you wish to participate or just sit quietly it's your choice. No demands of performance or conformity will be placed on you at any meeting. You are free to speak and act openly without judgement only within respectful guidelines to property and safety of visitors.
SCHEDULE: You may come and go at any time during the designated time period. However, you may want to join us at the beginning time so that you don't miss out on important information. I will be at the venue as long as one person informs me one day ahead of time that they will be attending. I will wait till the end of the scheduled time at the venue. We understand all of us have health issues and when we are not all present at the meet ups we miss you with heart felt caring thoughts.
Most meet ups are scheduled on Sunday afternoons usually once or every other month between the hours of 1:00pm to 4:00pm. However, if need be we can go over that end time. I will do my best to post a message of intended meet up date and times in advance in an email to all meetup.com F.W.EDS, Chiari & R. I. members as agreed upon by majority and venue availability. I will also be posting a flyer about the meet ups in a related Facebook informative support group we will inform you about at the meet ups. In case I am not able to be there because of sickness I try to remember to inform you by email.
PLEASE all SIGN UP with RSVP at meetup.com F.W.EDS, Chiari & R. I. for meet ups. If you find that you are unable to make it please let me know ASAP in case you are the only one who may attend. It would be respectful and assist me in not having to set up for the meet up if you let me know the night before. Meet up cancelations will also be posted in the same manner.
SPECIAL EVENTS: There may be special events or meet up themes voted on by as many who attend the meet ups as possible. A notice will be posted in emails to those members of meetup.com F.W. EDS, Chiari & R.I. As a meet up attendee, if you have any practical themed ideas you would like to present to the group, you may bring this up for discussion at any time at any meet up. You may also discuss on meetup.com discussion board making sure it is do able and the direction we as a group have agreement upon with as many as possible of other F.W.EDS,Chiari & R. I. meet up members.
RELAX, CHAT AND SNACK: You may bring drinks and snacks. Please be aware this is a non smoking and non alcoholic campus venue. We tend to bring things to share with each other. However, we realize many of us have special diets and limited income so please don't feel obligated. I try to make sure there is bottled water available along with tea fixings for those who so desire to partake. Make yourself at home bringing your comforters like a blanket or special pillow. Take off your shoes if you like and get as comfortable as possible. We want you to feel cared about.
F.W.EDS,Chiari & R.I. founded Jan. 10,2016
Updated March 22, 2017