Writers! This is an amazing opportunity from a world famous publisher. Check it out...
‘17 Myths About Ehlers-Danlos Syndrome That Make It Even Harder to Live With’
RP The Mighty
Registration and login information is up for EDS Wellness’ webinar tonight at 8:30pm with Rachel of Emerging Lotus Coaching, LLC. Please see event page below.
Tonight’s webinar kicks off EDS Wellness’ 2018 video webinar series, ‘Integrative Strategies for Managing Hypermobility Disorders & Related Conditions, Restoring Function & Living Well.’ I’m hopeful that our newly reorganized site and e-learning platform will be finally launching with us by tonight as well.
Our video ...webinar series will be held using Zoom. All participants will have their videos turned off - but you can chat actively and engage in the interactive Q&A session after. If we are able to stream live via Facebook & YouTube as well, those viewing on either platform will only be able to watch and listen vs. participate or ask questions. You can leave comments or questions below the video feed and Rachel or I will answer them afterwards.
Please let us know if you have any questions and we look forward to “seeing” everyone tonight!
***Reminder - this broadcast and all webinars in our 2018 video webinar series will be held through Zoom. They will not be held on our classes/event updates FB group, live on our FB page (unless we opt to), or another platform. Please make sure to download the app or familiar yourself with the site. The link to register and login, including call in information from a phone or out of be country is listed on event page.***
Great to see some increased press coverage about autonomic disorders thanks to Solange, who spoke up about her diagnosis last month.
"Most people only experience a day like this when they’re ill. Not every day."
MAKE YOUR DONATION BEFORE THE BALL DROPS! There's still time to give back in 2017 & help make a difference in 2018!
EDS Wellness Class and Event Reminders for Week of November 13th, 2017
RP EDS Wellness
What are some of your top wishes for the holiday season (ie. gifts, useful devices, gift card for ______)?
Yes, a cure or a miracle pill, supplement or therapy... would be amazing and better than any material gift; however, the question above is referring to things that would help you manage pain, regain function, make life a bit easier or help you live well. These are often things we cannot afford, really need, or would never purchase for ourselves.
What are your thoughts or ideas for top gift ideas for those living with EDS & other hypermobility related disorders? Please put your comments or suggestions below! And thank you!
Here are a few of my personal wishes
- just as examples. Most are wishes and are too expensive in general, but it’s a wish list - right?:
1. Lounge wear/PJs/Underwear from Sandra Maiden Sleepwear
on Etsy - sandmaidensleepwear's shop on Etsy http://etsy.me/1ajzftP
Everything is handmade to order and she only uses raw natural fabrics with no chemicals in them. Her loungewear/PJ sets and even undergarments are the only thing I can wear when sleeping - especially when going through a flare. Her clothes do not hurt my skin or cause the “burning from the inside out” sensation (what I often get with MCAS & CRPS flares) to get worse.
2. BioMat - Far Infrared Mat - Natural Amethyst + Tourmaline - Negative Ion - FDA Registered Man... https://www.amazon.com/…/ref=cm_sw_r_sms_c_api_u-llAbGTS74T0
3. New mattress - the tempurpedic we have makes me feel like I’m on fire each night. It doesn’t breath. Plus, it’s made with a ton of chemicals.
4. Consistent donations or a partner/sponsor who believes in EDS Wellness and wants to invest in/donate to helping us continue to do the work we are doing. Either one would make my Christmas and life a lot more manageable - especially if donations or a sponsor (maybe both) helped cover the $500+ a month it costs just to run EDS Wellness as at 501(c)(3) nonprofit (including costs got proper insurance policies, etc.), have an update and user friendly website, and ensure that the resources we’ve already put together (ie. Brochure, Videos, classes, the private physicians forum, the e-learning platform, Conference materials, etc.) remains available online.
5. Go to another yoga retreat near the ocean somewhere or to go to another retreat focused solely on healing - and isn’t one that I’m running.
6. Some type of stylish rolling work/computer bag. Walking while carrying a computer bag does nothing but cause pain and issues with misalignment.
7. Ballroom dancing lessons - always wanted to take them and having something active to do outside of what I have to do to keep my body together and what I do for the EDS/Hypermobility world - is important and would be really nice.
8. Tens Unit - FDA cleared Healthmate Forever YK15AB TENS unit Electronic Pulse Massager Tennis Elbo... https://www.amazon.com/…/ref=cm_sw_r_sms_c_api_tqmlAb437K69P
9. Warm, but thin gloves
10. Massage Seat Cushion or a whole anti-gravity/massage chair - Shiatsu Massage Seat Cushion with Heat Function, Deep Kneading ... https://www.amazon.com/…/ref=cm_sw_r_sms_c_api_VumlAbT7A0XQ7
11. New interchangeable hand-weights - so I can save space and get rid of my old, flaking 20 years old metal weights, and continue to workout or do PT at home, if needed. - BowFlex Adjustable Dumbbells (Pair) https://www.amazon.com/…/ref=cm_sw_r_sms_c_api_jCmlAbAG3K8YC
12. Resistance Bands Set Sportneer Exercise Band, Stackable Up To 105lbs for Home Gym Wo... https://www.amazon.com/…/ref=cm_sw_r_sms_c_api_7ymlAbRTN03BS
After a fall, 9-year-old Danica was left with metal rods, which had been implanted years before to stabilize her spine and had broken in the accident, floating ...dangerously close to her brain stem. Danica and her family traveled from Ohio to Johns Hopkins to receive life-altering, complex reconstruction surgery and is now able to ride a bike for the first time ever.
Happy Sunday! I just wanted to share a little about my pride & joy, Chronic Connection! Yesterday, we had our 2nd annual Virtual Halloween Party with participan...ts from two continents. We have the most amazing group of young people who happen to live with chronic illness. For those that might not be able to get out for an on-site party, being able to go to a Halloween Costume Party online and from the comfort of home (or even bed) is huge.
We have a lot of exciting things coming up that I'll be sharing soon! Until then, this is just one way we're working to build connections across the globe. #becausechronicdoesntmeancant #iamnotmyillness #spooniefriends #spooniesociety
Yoga for Chronic Pain Held Each Thursday & Our "Just 5 Minutes" Classes Begin Again Soon!