EDS Wellness, Gratitude Journal
Leave a comment

Gratitude for My Extended EDS, Mast Cell and Chronic Illness Family

When you lived in the middle of chaos – personally, professionally and literally, for about 2 years straight, fighting and climbing to the pinnacle of some invisible hill, one that only you can see, there are moments that keep you going just when you want to give up.

For me, those moments have been the unwavering support and help from some of my very close EDS/MCAS/broader chronic illness world friends – not all are named here, but these women have been by my side, rolled up their sleeves and helped me with no questions asked. And they have really helped me. They have devoted their own time, resources, and what little energy they have to helping me with my far too many projects.

They’ve helped make my aspirations come true, they’ve listened and supported me through a ton of crazy BS I’ve endured to get to this point, and they’ve worked – hard. Really hard, because they believe in what I do and they also care just as much as I do, if not more.

They have been my graphic designers, my editors, my co-authors, my conference partners and speakers, my gift & jewelry makers, my shippers of everything I’ve never had time to ship, my shoulders to cry on, my legal team & donors, my ears I’ve screamed into, my travel agents, my workout partners, my social media helpers, my videographers and photographers, my carriers of all the crap I bring to events, my brain (because it needs a lot of help), my cheerleaders, my board members, my volunteers, my very close friends, and my family in so many ways – because your family often doesn’t understand what you do and why you do it either.

You can’t do this type of work without becoming as close as family to those that stay by your side — there’s no public glory, there’s no million dollars you will earn, and there’s no shiny plaque, or trip you’ve won that shows how well you’ve done your job. Not many people understand this type of work, nor do they relate to it. It can be sad, and it’s incredibly tiring. It’s working 12-20hrs per day and not getting paid for it. It’s praying for donations, and having faith that your business plan to bring in additional money through grants and tax-exempt services pays off. It’s pulling all nighters many nights because that’s the only time you can work in silence. It’s putting your body through its own self-induced spiral, just to get the job done. It’s also a great coping mechanism and distraction, because it’s your life and the life of your three children. And you do all of this while you still have another business(es) to run — ones that bring in money to support your family and helps to put food on the table.

What is there and what you do earn, is priceless — it means so much more that money, glory or another pinnacle club trip (although, that would be nice right now. I could use having coffee at sunrise overlooking the ocean right now).

So, thank you to my rocks Ashton Nesmith-Kochera, Justine Case, Kristi Posival, Maria Dastur, Sarah Wells, Shauna Stauffer Dallmer, Beth S Nesmith, Debbie Olin Norris, Brianna Greenspan, Christine Mohrhaus Hale, Jennifer Robin, Melody Channell Gough, Ashley, Deborah Josupait Roach, Claire, and a few others I can’t tag. And if Dr. F, Dr. P & Dr. A were on Facebook, I would tag them too. 😉

There are a few announcements, but the flyers speak for themselves.

More official announcements will be shared soon, including details for the 3-day integrative wellness retreat (for patients and providers) in April 2017 with Healing Histamine by Yasmina Ykelenstam and other great speakers!

Vote for favorite EDS Wellness bling

Thank you gift baskets put together by my friend Ashton and her mom

Coming soon! Mindfulness and Yoga for Hypermobility at The Mindfulness Center with EDS Wellness

physician-conference-final

Physicians Conference in June 2017!

Living with Ehlers-Danlos syndrome Take 2! Accepting submissions now – email: submissions@invisiblestrength.org

EDS Kids book coming soon!

Strength/Flexibility/Health/EDS.com is now a digital magazine for living well with hypermobility syndromes!

Invisible Strength website

Just 5 Minutes initiative – www.just5minuts.org

Leave a Reply

Your email address will not be published. Required fields are marked *