Shine your light…

My cousin died this week at the age of 36 from a pulmonary embolism.  It was a shock.  It is painful. She was a ray of light and a good human being.  I did not know her well as a kid.  She was 10 years younger me and on the side of my family that I didn’t see often.  Erin “Fluff” and I reconnected on Facebook in 2009.  She was funny, opinionated, a huge Philadelphia sports fan.  I liked her a lot.  In 2010, my 34 year old cousin died of leukemia/lymphoma.  Erin reached out to share stories of Chris (they were not cousins and I didn’t know they knew each other).  She was a support I didn’t expect, but one I grew to rely on.  After that, I interacted with Erin in person or via Facebook,  just about every day until she died last week.

I laughed at her posts, encouraged her when she was down, and commiserated our love of Philadelphia teams that just suck.  She did the same for me.  Erin was a force of nature, a personality as bright as the sun, and a heart that was bigger than life.  Her life ending is a loss for many.  She had over 2,000 Facebook friends and I think just about everyone showed up at her wake.  An appropriate tribute to a great woman.

I live with multiple autoimmune diseases and it causes me be cranky from the pain and fatigue.  I often kick myself for letting life pass me by at times.  Honestly, I feel better than I have in years on my current medication cocktail.  I’m just stuck in my ways.  It’s time to shake things up.  It’s time to live life to the fullest.  You never know how much time you will be granted on Earth.  You might as well make the most of it.

This weekend was one of Erin’s favorite times of year. St. Patrick’s Day.  So this weekend, “Shine your light while you got one”.  Make a toast to “Fluff” and live life thoughtfully.  Rest in Peace Fluff.  I will miss your light.  Until we meet again my friend.  #TeamFluff

An Irish Blessing:

An Old Irish Blessing
May the road rise up to meet you.
May the wind always be at your back.
May the sun shine warm upon your face,
and rains fall soft upon your fields.
And until we meet again,
May God hold you in the palm of His hand.

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

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