RA Blog week 2018: #3 Mindfulness…

RAblog_week_RABADGE2018(2)I’m honored to be a part of the 4th annual RA blog week.  Today’s prompt is: Mindfulness What does mindfulness mean to you and how can it help as we live with our autoimmune condition?

About 10 years ago, I learned about a Mindfulness course offered through the Myrna Brind Center at Thomas Jefferson Hospital in Philadelphia.  It was really expensive (in my humble opinion) but I was desperate for pain relief.  I asked my friend Helene to join me.  She lived with rheumatoid arthritis and scleroderma. Helene was an amazing lady. She lived in excruciating pain 24/7. She was probably more desperate than I was for pain relief.  We had date each week for dinner and mindfulness.  Neither of us knew what to expect but both of us were so very hopeful.

Each week, we learned how to meditate.  Each week, we learned how to stay in the moment. Each week, we practiced breathing.  Each week, we shared our pain with strangers.  Each week, we failed and succeeded in learning how to remain in the moment and breathe. At the end of our 8 week course, we had a toolbox.  Helene never achieved pain relief through mindfulness, but she found that the breathing helped her calm her mind enough to get some rest. I had a slightly better result. I learned how to separate pain from my brain. Now I admit, I can’t always do it, but when I can, I literally can push the pain to the side. Almost like it is on the edge of my shoulder. I know it’s there and if I move it will flood back, but I can hold it at bay for a bit and that helps.

Unfortunately, I haven’t been able to generalize that mindfulness throughout my everyday life.  I’m more likely to zone out with the TV or a book rather than attempting to calm my mind. Maybe it’s because I fear being alone with my thoughts or maybe it’s because it’s not easy and after trying to navigate life with chronic illness….I just want easy. It may be time to explore mindfulness for more than just pain management.  I’ve been letting pain, work, and life overwhelm me. I have tools and I need to begin using them again. I need to put mindfulness back into practice.

Sadly, my friend Helene passed away about a year after our class.  She was diagnosed with cancer and with her RA and scleroderma she was inoperable.  When she passed, her students were asked to write something about her for her daughters. Almost every card written by those elementary students stated that they would always remember her big smile.  She would sit in the front office of our school and cheerfully greet people coming in to school every morning.  She didn’t do this to be nice, rather, the walk from her car to the office was too hard on her and she needed a break before she could walk the rest of the distance to her classroom.  Yet she smiled and joked with everyone who walked past her. I would find her practicing her breathing during the day in her classroom. Trying to find a brief moment of comfort during her day. Helene lived in excruciating pain 24/7, yet she will always be remembered for her smile.  A smile that was never fake and always mindful. When I think about mindfulness, I think of Helene and I smile.


2018 RABlog Week Banner

Check out more blogs on mindfulness here:  http://radiabetes.com/blog-week18/day3.html

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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.

6 thoughts on “RA Blog week 2018: #3 Mindfulness…

  1. Wonderful post. I have seen people like your friend at many a school. Cancer, loss of a limb, loss of a spouse. People who smile when anyone else would be grimacing. Or maybe, they see the difficulties the students face and think the same?

    Liked by 1 person

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