Gratitude Journal, Living with EDS
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Life by Design – Gratitude for doing what I love 

img_2061I started my first business 10+ years ago after I had baby #1 after I was diagnosed with EDS. This business was also started after being on long-term disability from my “career” job, one that I loved, and after facing the decision to accept or decline permanent social security disability at age 27yo. I declined it.

My choice — being disabled at 27yo didn’t feel right for me, and working, doing something, helps me manage my health and well-being. I also needed to help support my family, be available for my son (only one baby at the time), and have flexibility around my husband’s job. I figured I could find something that I could do on my own, and I did.

Five years ago, I started a 2nd business to serve the community that I was now a part of — both as a patient and volunteer. I wanted to use my degree to help disseminate education and work with people on how they could best help themselves, if they didn’t have a physician or PT that understands EDS and its complexities (most do not).

I worked part-time with this second business — devoting most of my time to volunteer work with another organization. I did a few things here and there to see if my niche would work; however, I still had to work my primary business and me also two more babies. With three small kids, another business, and volunteer work, my EDS business took a back seat.

d54f92c9-df89-49bf-a239-adc2f289f33c-fullOver the last 5 years, I’ve taken on more and more projects for the community, published books (Our Stories of Strength – Living with Ehlers-Danlos syndrome & Never Bet Against Occam: Mast Cell Activation Disease), started a small publishing company (yes, a third LLC – Sisters Media), held seminars and conferences (Wellapalooza), held fundraisers (EDS Ride for a Cause), embarked on other initiatives and projects (Just 5 Minutes, Mast Cell Research, Invisible Strength – Stronger 2 Gether, & Moving Naturally with Hypermobility) — all with the same goal in mind — to serve the EDS and broader chronic illness community in whatever way that was best.

1bf7c52b-99ca-4582-8f2b-b0a754adf4d1-fullI’ve worked on more projects, revamped my main website into a digital wellness magazine for those living with Hypermobility syndromes, such as Ehlers-Danlos syndrome (Strength/Flexibility/Health/EDS), continued to work in close collaboration with the specialists who have devoted their lives to diagnosing and caring for us, and enrolled in additional training (The Hypermobile Yogi) — other certifications that will hopefully enhance my degree and help the work I do.

None of this has been easy, and it has not come without significant sacrifice on my part, and that of my family. It’s also taken a huge toll on my own health (i.e., the EDS Spiral I always talk about), and I’m currently working on climbing out of the latest self-induced spiral. However, if I didn’t do what I do, I wouldn’t have days like I had today. And none of this would be possible if I didn’t work for myself.

So, for today … despite all that is hard, challenging, traumatic, incredibly stressful and tremendously devastating in my life at the moment, I’m going to focus on gratitude. Appreciation for a day that went like this — see below.

Got up & had quiet coffee time (somewhat quiet – my family tends to sense when I get up earlier than them)

Did some work

Got kids ready for school & husband took kids to school for me

Had first scheduled EDS Wellness Helpline call

Took an excellent new Candlelight Yoga Class

Quickly got ready to head to Baltimore, and decided to take my oldest with me, because when he’s been sick since last week. He stayed home again today, and I didn’t want him to be home alone for too long. Since I worked for myself and didn’t have to be in the OR like I usually do for my Medical Sales company, I was able to bring him with me. img_3884

Drove to GBMC to meet an EDS friend at Dr. F’s office, who finally had her first appointment.

Danced, sang and laughed with my going-on-twelve-year-old while driving and Carpool Karaoke in the car

Had great call with advertising company who usually specializes in pharma and med sales companies, but is interested in working with non-profits and is involved in the EDS community

Had lunch with my Bub

Delivered my friend small presents & was able to hang out with her and husband for the first time in personimg_3883

Drove home & had dinner with my little family

Snuggled all three babies and rubbed all 6 legs before putting them to bed

Days like today are important because they trump other days like one I had this summer. While on vacation in August, a family member turned to me while I was watching my kids play on the playground and said, “Your job is your priority, not your children.”

Stunned and not wanting to say anything to defend myself or my family, per usual, I decided that I needed to say something even though it’s nearly impossible to defend yourself to someone who has no idea what your priorities are, you have not seen in two years, nor does this person hav a real clue why you work, and if you have to (which I do). Thankfully, I love what I do, but I created it — purposely. So, I decided to respond; however, when I did I was quickly interrupted with a 2nd point black, “Kendra, your job is your priority, not your children.” 

At that point, I decided that it was best for me to walk away. And cry. I think any working mom would be sensitive to someone saying such a thing, but when it’s family, while on vacation, and it’s so far from the truth (and you haven’t spoken to the person in 2 years) — it’s a low blow. It’s also uncalled for, not to mention disrespectful.

Thankfully, I’m blessed to do what I love – it’s what I would want to do anyway. I’m available for my kids, the people I love, the community and myself.

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Grateful. Because moments like these are priceless….

 

 

 

 

If you are interested in reading about my friend Ashley’s journey (who I met at GMBC), you can go to www.conqueringeds.com.

I also shared a post on her journey on the EDS Wellness site –http://edswellness.org/index.php/2016/06/08/just5minutes-time-story-invisible-strength-living-ehlers-danlos-syndrome/

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