I clearly had remnants of Wanderlust 108 on my yoga mat as well.
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#Just5Minutes – Zengo with My Husband
I’m glad that I went at 5pm to Shannon’s class at Zengo Cycle, because I probably wouldn’t have worked out otherwise. I was tired and have more than enough studying to do, not to mention work to get done. However, we had a sitter for the kids, so my husband dragged me because he knew that I wanted to go. Afterwards, we were able to grab something to eat as well.
Thank goodness for Chromolyn Sodium – my stomach is much happier now.
And I tried the new Kyani Nitro Extreme powder – impressed.
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
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
Wanderlust 108
5k + 1 hr 20 mins Yoga + 1 hr Meditation = Wanderlust 108
A ton of good food and even more classes to take – barre, aerial and acro yoga, some type of really hard on a tightrope yoga, hula hooping and more. Such a fun event!
My friend Ashira met me there and thankfully took me home — I crashed hard as soon as I walked in the door.
I signed up for Acro Yoga but didn’t have anyone to do acro with, and I’m not uber comfortable with touching strangers or strangers touching me. I never realized how uncomfortable I am with that until today during yoga. Totally creeped out by the guy next to me. I stopped after MC Yogi because I’m so not the group touching type person and I didn’t have anyone around me that I knew. I always hated workout classes where you have to get a partner and do things. I like to workout to be in my head and not have to interact — unless of course, I’ve chosen to do so.
The Floor is the Best Desk
Only when you are hypermobile, does the floor become your desk.
It’s way more comfortable than sitting in a chair at a desk, or sitting at all. At least, I can move around and also perform PT exercises while I work.
Notice the scapula support by Braceability – I finally gave into wearing something to help rounded, hypermobile shoulders while I’m working on the computer.
Neck position is key though. You want to keep your neck long and aligned, and eyes cast down, versus your neck tilted/hyperextended to allow your eyes to look up at the computer screen.
#Just5Minutes – Sculpt Pilates Class
Sculpt Studio focuses on the Lagree Method using the Megaformer machine. However, today I took a regular Pilates class at Sculpt and it was great.
I’m still working on regaining my strength from my most recent EDS spiral and Pilates has been a recent type of exercise for me to incorporate in my workout routine.
I fell in love with Pilates over a year ago when visiting my friend’s studio on the Eastern Shore. I quickly realized that classic Pilates had a lot to offer me — different from my usual workouts, such as yoga, the Pilates-like workouts on the Megaformer, indoor cycling, and most other mainstream workouts.
Consequently, I started incorporating classic Pilates into my routine and noticed incredible differences in many of my weaker areas. In fact, Pilates is the main reason why I have hope and shown progress in helping correct the kyphosis and scoliosis in my back, as well as the winging of my scapulae.
Over the summer, I was not able practice Pilates as I previously was able to, but it felt great to be back in a class today. As expected, I was weak in the very areas that I attend class to help strengthen – the instructor even commented on how I need to keep my scapulae down.
I laughed and told her that “it’s my life’s goal to be able to keep my scapulae from winging.”
It’s deffinately easier said that done when you are hypermobile.
#Just5Minutes – Sculpt Barre Class
A new class offered by Sculpt Studio and taught by Damon. Great class!
#Just5Minutes – When You Miss Your Zengo Cycling Class
I had to cancel two classes today earlier today, and then I didn’t make it in time to my Zengo Cycling class. What went from a rockstar workout day, took a serious nose dive, but was saved by my oldest. He saw me in my yoga/workout room on the spinning bike — after I came home early from the cyling class I had just missed. I wasn’t happy to say the least, but made myself get on the spinning bike and start peddling my legs.
My oldest opened the door to the workout room and when I asked him what he was doing, he responded “You’re in a workout class — see you later!”
He then smiled, shut the door, and walked away. And made sure his little sister didn’t interrupt me.
Now that’s love.
Small Vein Rupture and Colder Weather = Blue Hands
When it gets colder, and your hands go from red and swollen to blue and shriveled (AKA – aged appearance of the hands more commonly associated with Vascular Ehlers-Danlos, but can also be a seen with other types of EDS/Hypermobility Syndromes).
Oh and you also notice a small vein rupture that apparently happened either last night or sometime this morning.
The featured picture is of my left hand, but small vein rupture is on my right hand.
SYLK PERSONAL LUBRICANT AND OFTEN A MIRACLE FOR “PAIN DOWN THERE”
“THIS IS A SPONSORED POST. I HAVE BEEN COMPENSATED THROUGH THE CHRONIC ILLNESS BLOGGERS NETWORK. ALL OPINIONS REMAIN MY OWN, AND I WAS IN NO WAY INFLUENCED BY THE COMPANY.”
Last week, I posted on Strength/Flexibility/Health/EDS about how you can be allergic to semen and how it relates to Mast Cell Activation Syndrome (MCAS) and Ehlers-Danlos syndrome (EDS); however, in this post I also discussed other chronic pelvic pain conditions that seem to “travel in packs” for those of us living with a chronic illness (or several). While the point of the article was to explain how this type of allergy is often overlooked, the symptoms it often presents with, and how it may be tied to an underlying route condition, the same “pack” of conditions and symptoms, often causes vaginal dryness as well.
Vaginal dryness or any issues “down there” are less than fun to discuss or bring up, and most suffer in silence. Something as simple as using a personal lubricant can help not only make sex more comfortable and enjoyable, it can also ease daily symptoms as well. SYLK is the best all-natural product in the personal lubricant product category. The all-natural ingredients in SYLK can help reduce this dryness (whether or not sex is part of the equation).
For those sensitive to chemicals and other additives commonly found in various foods and skin care products, SYLK is fragrance-free, has no chemical additives or preservatives, and is paraben-free.
What causes vaginal dryness?
“During menopause, estrogen production slows and then stops. When that happens, a number of changes — many of them unwelcome — happen in a woman’s body. Periods become irregular and then stop. You may have hot flashes, mood swings, a deeper voice, and an increase in facial hair.
Vaginal dryness is another common symptom of menopause — and close to one out of every three women experiences it while going through “the change.” And it becomes even more common after menopause. Vaginal dryness also can occur at any age from a number different of causes. It may seem like a minor irritation. But the lack of vaginal moisture can have a huge impact on your sex life. Fortunately, several treatments are available to relieve vaginal dryness.
Normally, the walls of the vagina stay lubricated with a thin layer of clear fluid. The hormone estrogen helps maintain that fluid and keeps the lining of the vagina healthy, thick, and elastic. During menopause, the drop in estrogen levels reduces the amount of moisture available. It also makes the vagina thinner and less elastic. This is called vaginal atrophy.
In addition to menopause, estrogen levels can drop from:
- Childbirth and breastfeeding
- Radiation or chemotherapy treatment for cancer
- Surgical removal of the ovaries
- Anti-estrogen medications used to treat uterine fibroids or endometriosis
- Other causes of vaginal dryness include:
- Sjögren’s syndrome (an autoimmune disorder that attacks cells in the body that produce moisture)
- Allergy and cold medications and certain antidepressants
- Douching
- Lack of enough foreplay before sexual intercourse
- No matter what the cause, vaginal dryness can be extremely uncomfortable. It can lead to itching, burning, and painful intercourse.”
Read more by going to http://www.webmd.com/women/guide/vaginal-dryness-causes-moisturizing-treatments#1
SYLK is the only lubricant made from New Zealand Kiwifruit Vine extract. This proprietary ingredient is filled with polysaccharides, which give the product its natural, film-like texture. SYLK is also a trusted product, sold for over 30 years internationally, and is now available in the United States as an FDA cleared product, because of its long-standing record of safety and effectiveness. SYLK has improved people’s lives from all walks of life.
For those with hypermobility or a type of Ehlers-Danlos syndrome, vaginal dryness and the discomfort that is associated with it, is often exacerbated by any damage to the fragile tissues in the vagina and external vaginal area. One of the best ways to help prevent tissue damage and enjoy sex safely is to use a personal lubricant. In fact, it’s nearly a requirement.
“EDS-associated gynecologic disorders Irregular menses, metrorrhagias, severe dysmenorrhea, dyspareunia, vulvodynia and vaginal dryness are frequent in EDS women [12,17-19]. Chronic pains represent the most common neurologic complaints [20]. They are commonly associated with joint hyperlaxity and dislocation. Involvement of the S2-S4 joints is responsible for the Alcock canal syndrome with pelvic pain worsened by sitting [21].”
To read more, go to http://www.hoajonline.com/gynecology/2052-6210/2/1
To learn more, go to SylkUSA. You can also visit SYLK’s facebook page – https://www.facebook.com/sylkusa, or find them on Twitter: @sylkusa, and Instagram: @usa.sylk.
SYLK can be purchased through several online retailers such as Amazon.com – http://amzn.to/2cyuTHR.
SYLK’s website – https://sylkusa.com/landing-learn-more/
Additional Resources:
EDS Info File on Ehlers-Danlos syndrome (EDS)
‘Obstetric and gynecologic dysfunction in the Ehlers-Danlos syndrome’ (1994)
‘5 Things that Cause Vaginal Dryness’
Mayo Clinic’s article on Vaginal Dryness
WebMed’s article on Vaginal Dryness, Causes & Treatment Options
Article originally posted on Strength/Flexibility/Health/EDS.com and reposted with permission.