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#EDSFitTip – Practicing Yoga Safely with Joint Hypermobility (Clip 3)

‘Practicing Yoga Safely with Joint Hypermobility’ (Clip 3) with Kendra Neilsen Myles, C.H.E.S., RYT 200 – Video Clip is Part of the #EDSFitTip Movement Series. This video was recorded as part of the Yoga for Chronic Pain class held each Thursday from 1:15pm-2:15 pm at The Mindfulness Center in Bethesda, MD.

Kendra’s weekly Yoga for Chronic Pain class, related educational materials, and video recordings are a part of the Mind-Body Strategies for Hypermobility with Chronic Pain program developed and implemented last year by Kendra Neilsen Myles, Founder & Executive Director of EDS Wellness, and in collaboration with Deborah Norris, Ph.D., founder of The Mindfulness Center, and Dr. Clair Francomano.

Program materials and resources for program implementation of Mind-Body Strategies for Hypermobility with Chronic Pain,  including the initial 4 workshops held between November – December 2016 at The Mindfulness Center, can be found here.

Class video recordings and other related videos can be found on the Strength/Flexibility/Health/EDS YouTube Channel.

‘Practicing Yoga Safely with Joint Hypermobility’ November 15th (Today!) at 02:30 PM EST via ZubiaLive!

Please join us November 15th (Today!) at 02:30 PM EST via ZubiaLive!

This live broadcast, ‘Practicing Yoga Safely with Joint Hypermobility’ can be viewed on ZubiaLive using your desktop by going to www.zubialive.com.To register for this live seminar, go to – http://web.zubialive.com/signup or through the easy iPhone App (not currently available on Android devices). Link to App on iTunes – https://12vn.app.link/BC3MUyyRzH. iPhone users can also interact with the host in real-time. Live broadcasts via Zubia can be public or private — options I was looking for.

Today’s broadcast is an impromptu test to try the Zubia Platform. The plan is to keep things simple, see how a live broadcasting via Zubia works for our needs and share a few helpful tips. This will be a simple and short broadcast, discussing tips for practicing yoga safely with hypermobility and some general medical info on hypermobility related disorders, such as EDS & HSD. During the broadcast, you will be able to post questions if using the iPhone App, but not if viewing via computer. That options will be fixed next week. Also, if you are using the App, please make sure that you have downloaded the latest app update.

Description of workshop broadcast:

“Practicing Yoga Safely for Hypermobility will discuss proper positioning to help protect the joints and connective tissues from preventable damage, such as microtears in the tendons & ligaments, as a result of unknowingly hyperextending and overstretching. We will demonstrate some of the most common yoga poses that are prone to hyperextension, and go through proper positioning and alignment for yogis with “loose joints.” We will also discuss the importance of shifting from the traditional yoga practice mindset and “intentions” often shared by non-hypermobile yogis, and honing a practice philosophy that may initially feel quite opposite from the guidance and instruction provided by the mainstream yoga culture. This intuitive, yet unconventional approach to practicing (or teaching) yoga, helps prevent hyperextension and overstretching, facilitates strength & stability of the joints, and allows for an overall safer, injury-avoiding way to practice.”

 

6th Annual Wego Health Awards – Lifetime Achievement & The Best Kept Secret Award Nominee

Not sure who, but a few very nice people nominated me for the 6th Annual WEGO Health Awards. I was nominated for both the Lifetime Achievement Award and The Best Kept Secret Award – Thank you!

A great email to read when you first get up on the morning — even better when you receive a 2nd email with another nomination a few days later.

Submissions for additional Health Activist Award nominees ends tomorrow (Friday, July 7th, 2017). After Friday, people will be encouraged to cast votes/support for the finalists once the nomination period ends. There’s still time to submit additional nominations for all categories and for anyone you feel is deserving of a nomination! Maybe a few people!

Go to www.awards.wegohealth.com.

Winners are decided on by the panel of judges based on a variety of factors, including how many supportive votes a nominee has in a specific category.

Link to view my Wego Health profile – https://awards.wegohealth.com/nominees/12868

It’s the little things that keep you going …. 

It’s the little things that keep you going — especially after being up all night working trying to fix one of your websites (You know, the one that has the most traffic per day? Yep, that one. Fun times.) which totally crashed because of a plug-in update and you can’t get into the back-end either.

No.Idea.What.To.Do.

And ….. you had a product review due, actually, it’s overdue, and it was about to be posted before the devil plug-in corrupted everything.

And finally, you were trying to work on editing speaker presentation videos from two very important conferences you held recently for your still newly launching nonprofit, when you put one of the big memory cards (“big,” meaning it can store a lot of content, especially video content on it) into your computer to make sure that all of its videos had already been downloaded. Thinking that all videos had more than likely already been downloaded, you opt to still triple check. Then, you realize that the memory card is empty when your computer reads it. And now you understand what you read posted recently by other photographers about Lexar going under, or something similar (https://www.theverge.com/circuitbreaker/2017/6/27/15881902/lexar-memory-card-flash-storage-sd-shut-down-micron). Apparently, this issue is per usual for Lexar memory cards and it’s so awesome! So, you start to pray that you really do have whatever videos that were once stored on the Lexar memory card downloaded somewhere on your computer, the external hard drive or already in iMovie for editing. Because it makes you sick to your stomach to even think about what videos could have been on that memory card (not that staying up all night working is helping this situation in the slightest), you decide to work on a few other things to feel like you’ve been at least a tiny bit productive for the number of hours you’ve put in working.

One of other tasks/things was to put an updated Great Nonprofits widget on the EDS Wellness website, as part of the big website reorg you’ve been working on. And then you see and read the latest review — from one of the providers who you’ve worked with and who is an integral component in the proper diagnosis and care of the patients in the community that your organization serves.

Blessed. Grateful. Humbled. Honored.

And much more because staying up all night also makes you super emotional as well. But, you can’t get emotional because you are literally allergic to your emotions (dare you to cry, or your face blows up like a stuck pig and you have a hard time breathing). Thankfully, he’s one of the providers who “gets it” and knows full-well that this craziness really does happen to countless patients — you really can be “allergic” to your emotions and to crying, but the little things like an unexpected review keeps you moving through the big things and provides perspective of what’s important and why you fight to do what you do.

 

pchopra, Professional with expertise in this field

04/30/2017

FEATURED COMMUNITY STORY Rating: 5     

“This is an amazing organization to help patients with chronic pain. They look at the person as a whole. The organization, under the guidance of Kendra, has a philosophy of not letting the medical condition define the person. The Wellaplooza (now in its third year) is truly wonderful experience for anyone, not just patients. The 3 days were about treating the mind and body all together. The speakers and hands on demonstrations were excellent. EDS Wellness brings a wonderful mix of medical science and holistic approach to treating not just the medical aspects of chronic pain but the body as a whole.”

Link to full review on Great Nonprofits – https://greatnonprofits.org/org/eds-wellness-inc

If you love EDS Wellness’ work then tell the world! Stories about EDS Wellness from people like you will help make an even bigger impact in our community. GreatNonprofits – the #1 source of nonprofit stories and feedback – is honoring highly regarded nonprofits with their 2017 Top-

Rated List. Please help raise visibility for EDS Wellness’ work by posting a brief story of your experience with them. All content will be visible to potential donors and volunteers. It’s easy and only takes 3 minutes! Go here to get started! https://greatnonprofits.org/reviews/write/eds-wellness-inc

Reviews that will be counted towards the tally of the Top Nonprofits for the 2017 calendar year-end October 31st, 2017. Please submit your review prior to October 31st, by visiting https://greatnonprofits.org/org/eds-wellness-inc.

 

Gentle Hatha Yoga for Hypermobility and Chronic Pain with KNMyles Class 2 – 40mins

Gentle Hatha Flow Yoga for Hypermobility and Chronic Pain with KNMyles, C.H.E.S., RYT 200 of EDS Wellness. 40-minute class recorded at The Mindfulness Center as part of EDS Wellness’ ‘Mind-Body Strategies for Hypermobility with Chronic Pain’ movement and support group program on Thursday, June 29th, 2017.

Please remember – Participate at your own risk. EDS Wellness, Strength/Flexibility/Health/EDS, their affiliates and this YouTube channel, are not liable for injury or issues that may occur as a result of viewing or participating in this recorded video, or other videos freely available on the Strength/Flexibility/Health/EDS YouTube channel. Always ask your physician, physical therapist, or another healthcare provider before trying a new exercise, movement, or another program. When in doubt, just watch. These classes are not suitable for everyone. They are also not to be misconstrued as a directive for everyone living with a type of Ehlers-Danlos syndrome, Hypermobility Spectrum Disorder, or their related conditions or as healthcare advice. Participation in this recorded class or any of our other videos means that you understand and accept EDS Wellness and Strength/Flexibility/Health/EDS’ and its YouTube channel’s statement of participation and potential risk.

13 Years Ago Today ….

You can never be prepared for certain things to take your breath away, but memories like this sure do. They also leave you permanently attached to the people who were with you at the time – both family and new friends you had only recently met.

I wasn’t initially sure why this picture showed up on my FB memories – especially as a memory from 3 years ago, and because my mom passed away over 10 years ago.

And then I realized why – my mom passed away 13 years ago today – I had just found out 10 days earlier that I was pregnant with my first baby, Johann, who we named after his Bedste.

Gentle Hatha Flow Yoga for Hypermobility and Chronic Pain with Kendra Neilsen Myles, C.H.E.S., RYT 200

Gentle Hatha Flow Yoga for Hypermobility and Chronic Pain with Kendra Neilsen Myles, C.H.E.S., RYT 200 of EDS Wellness. Full 55-minute class recorded at The Mindfulness Center as part of EDS Wellness’ Mind-Body Strategies for Hypermobility with Chronic Pain movement and support group program.

 

Please remember – Participate at your own risk. EDS Wellness, Strength/Flexibility/Health/EDS, their affiliates and this YouTube channel, are not liable for injury or issues that may occur as a result of viewing or participating in this recorded video, or other videos freely available on the Strength/Flexibility/Health/EDS YouTube channel. Always ask your physician, physical therapist, or another healthcare provider before trying a new exercise, movement, or another program. When in doubt, just watch. These classes are not suitable for everyone. They are also not to be misconstrued as a directive for everyone living with a type of Ehlers-Danlos syndrome, Hypermobility Spectrum Disorder, or their related conditions or as healthcare advice. Participation in this recorded class or any of our other videos means that you understand and accept EDS Wellness and Strength/Flexibility/Health/EDS’ and its YouTube channel’s statement of participation and potential risk.

“Exercise Should be the 4th Meal of the Day” – Dr. Pradeep Chopra

At Wellapalooza 2017, Dr. Chopra said that movement and exercise should be our 4th meal of the day (the link to his presentation slides is below). He also suggested that everyone should get a paddle board (jokingly). Glad my husband took him seriously though!

My husband surprised me with a belated Mother’s Day present — a Tamarindo Paddle Board. Tamarindo paddle boards is a company based out of Virginia Beach, which is a good thing because I’ve already signed up for paddle board yoga and paddleboard barre classes.


Link to Tamarindo Paddle Board’s website – https://www.tamarindoboards.com/product-page/hermosa-11

SUP Barre classes in Va Beach. Classes held at sunrise or sunset – https://www.tripadvisor.com/Attraction_Review-g58277-d10050185-Reviews-SUP_Barre-Virginia_Beach_Virginia.html?m=19904

Link to Dr. Pradeep Chopra’s Presentation Slides from Wellapalooza 2017 – http://www.wellapalooza.com/dr-pradeep-chopras-presentation-slides-management-chronic-pain-eds-wellapalooza-2017/

#Just5Minutes – Week 4 of making the decision to take my life and body back is 1/2 way over

The sunrise on the way to barre class this morning – beautiful. It makes getting up super early just a bit easier. 

– I’ve worked out 1-2x a day, every day.

– I’m focusing on doing yoga 2x a week – not just when teaching it. My next goal is to do it daily for a 30-day challenge.

– I’m still going to PT an average of 1x a week

– I’ve made sure that I’m walking as much as I have been – especially when taking the kids to school or picking them up.

– I’ve gone to bed at a reasonable time each night, but I’m still working on getting enough sleep and rest. Pacing has never been my strength.

– I’m making sure that I’m taking my supplements each day, and working on improving my nutrition even more (although I’m super hungry all of the time, which isn’t usual for me).

– I’ve been trying to make sure I make time for acupuncture, massage and other alternative therapies that I know help, but I often don’t have the time for or the money to spend on regularly.

– Because of constant medication reactions, I’ve had to adapt to life without pharmaceutical help, which isn’t easy – and especially not when planning another conference.

– My head is clearer. I can actually write emails and send them – a task that would usually take me forever to just do and finish, or just didn’t get done in a timely manner.

– The POTS episodes have decreased (as long as I get adequate sleep), and I’m not feeling like I’m going to fall over most of the day (or that I have to sleep constantly).

– The pain in my hips and legs and the constant “hot spots” on my thighs is getting better. It’s not perfect, but I’m realizing just how deconditioned I was – not just physically, but biochemically and internally. I still have a long way to go, but every day gets better.

– I resumed teaching the weekly “Just 5 Minutes” classes on the EDS Wellness FB page. That was a big goal for me.

– Still waiting for the water/fluid retention to subside though.

– And I’m still getting all work associated with my businesses, life, parenting, house, etc. done. Slowly, but I’m getting it done.

– I still struggle with the debilitating cognitive issues associated with fatigue, pain, Dysautonomia, MCAS and all else. It can be incredibly frustrating because it just happens like a light switch turning off and on – and with no warning. There’s nothing that helps either other than complete rest or sleep. Some medications help, but that changes daily and isn’t guaranteed.

Climbing out if the “EDS Spiral” isn’t new for me, nor is dealing with medication reactions and the physical and biochemical adjustment that happens when you suddenly have to stop something that was helping you but was also making something else worse.

Medication issues are something I go through nearly every month or so.

Getting through the first 2-3 weeks is always the hardest, and then I suddenly start to feel like my myself again. Once I get through the initial few weeks, I also don’t have the extreme swings up and down – feeling completely normal with no pain, etc., to feeling like I can’t move an arm. It often feels like a bad joke when something helps you so much and you feel so “normal,” yet it makes other “related conditions” worse.

It can make you feel trapped and isolated as if you have nowhere to go and nothing that can help you — or no one who can help you.

Accepting the less volatile peaks and valleys that come with not trying from find “the cure” or the one med (or supplement) that fixes everything, is often much easier to “ride the roller coaster” of EDS with, then the incredibly taxing, debilitating and deconditioning cons of going through the mainstream healthcare Russian Roulette.

This the reality of living with EDS and it’s related conditions. Humbling, shocking and scary.
I’m not anti-med at all and still have to take them, but realizing how they affect me overall, has been eye-opening. This is something I’ve had to test (often not purposely) off and on for the last 2-3 years because of increasing symptoms, yet even more adverse reactions. What’s amazing is that when I give myself time to get through those initial 2-4 weeks and keep doing what I need to do in other areas of my life, it’s amazing how much better I feel. Don’t get me wrong, I often tank when I push myself too much and then need medications to function.

It’s just often such a hard, fine and consistent balance – one that is different for each of us. And it constantly changes. I’m thankful that I’ve learned to be well aware of how each food, medication, hormones, supplement, sleep, stress, and all else affects me. I’ve also reconfirmed over and over what does work for me – no matter how hard, tough or unfair it seems versus other people.

We do have to work harder. It just is what it is. Doing so gives us the best chance of living well.

And realizing that, accepting it, and just doing it, feels like freedom.