In the face of pain, heartbreak, and crisis, most of us don’t know how to react or respond. We want to be an encouragement, we want to comfort, we want to relate in some way…
On the morning of November 6th, in a suburb just north of Atlanta, GA, the students and teachers of Woodstock Elementary School arrived wearing orange in support of individuals living with Complex Regional Pain Syndrome/RSD. “It was a sea of orange today,” said Principal Kim Montalbano, who organized the awareness event.
Each November for CRPS/RSD Awareness month, people around the world participate in Color the World Orange, and this year, for the first time, the students and faculty of Woodstock Elementary School joined the cause!
My mother, a long-time teacher at W.E.S. was overwhelmed by the support shown to people living with severe daily pain and families affected by the debilitating neurological disorder, RSD/CRPS. When she arrived to work that morning, my mother was excited that the children in her own classroom would be sporting orange; instead however, she saw orange everywhere she looked! “It was a very emotional moment when I realized the entire school was supporting you today,” she told me that evening with tears in her eyes.
Many of my mother’s colleagues know that I have grown more disabled over the years, however she was encouraged to share my story in more detail on the 6th along with information on the condition that started it all:
I sprained my ankle when I was a healthy, active and focused 22-year-old; Complex Regional Pain Syndrome/RSD began immediately following the injury. The constant pain has spread to other parts of my body over the last 11 years and I now have several other disabling chronic illnesses. They say that RSD/CRPS is the most painful condition- more painful than childbirth or amputation, but people like myself don’t get a break from the pain. I have traveled to see specialists, I have stayed in hospitals like Emory and Mayo among others, I have utilized western medicine, alternative, and holistic type treatments and therapies. Because of the enhanced awareness in recent years, new treatments for RSD/CRPS are being developed so there is always hope for remission! Anyone can contract RSD/CRPS from a minor injury, but research shows taking vitamin C after sprain, fracture or surgery will reduce your chances by helping your nerves heal. It is an extremely difficult condition to manage, but a loving family, faith, online support groups, and doctors who truly care make a world of difference for people like myself.
A few of my mother’s co-workers shared that they struggle with their own chronic pain conditions and felt that no one understood what they lived with on a daily basis. A mother of one of the students wrote a note to my mom saying that she has had CRPS/RSD for years and has always felt very alone in her pain. She was so overwhelmed with the support of the entire school and was extremely grateful it was being recognized so near her home. She thanked my mother specifically for educating her child’s class on RSD and extended a special thank you to Principal Montalbano for organizing such a meaningful awareness event.
Several of the students tried to understand why wearing orange would make a difference. Some were disturbed by the idea of living every day in pain. One student asked my mother, “Can’t your daughter just take medicine to feel better?” Another asked his teacher how his orange t-shirt would help people in pain recover. His teacher explained that it wouldn’t, but for people like my mother and myself, his support would be “a very big deal.” He then felt compelled to run down to my mother’s classroom to show her his orange shirt, and to say, “I hope your daughter feels better soon.”
Because of this incredible awareness event at W.E.S., classes upon classes of children know what RSD is. Their parents, who read the memo and found them something orange to wear that day, are now familiar with the term “RSD”. Faculty who helped explain the illness all day will recognize it whenever they hear the term again. The next time a person they care for is diagnosed, it won’t seem like the most foreign illness on the planet and they will know treatment must be sought out immediately.
When I shared pictures of the children wearing orange to my Facebook timeline, my friends were so touched and inspired by this amazing gift of support. We all feel incredibly uplifted and deeply moved by the entire school of Woodstock Elementary. On behalf of myself, my family, and my extended family of survivors living with indescribable pain, thank you W.E.S. for your support, your kindness, and for raising awareness for Complex Regional Pain Syndrome/RSD.
A couple months back, an old friend posted a message on Facebook asking which 5 friends of his would participate in a Pay it Forward Initiative for 2014. “I WILL!!!” I said (probably adding a smiley face- ok, more like 3 smiley faces). I agreed to send some type of small gift or mail to surprise 5 different people during the remainder of the year (besides birthdays or holidays). This post is not to brag about doing something nice. So many other people participated in this effort throughout the year…it’s not about me. But I want to share my part and what I learned from the Pay it Forward Initiative to hopefully inspire others to do something similar.
A while back, Charity Elise, the artist of the first featured piece above sent me her most popular image after we conversed online. I had fallen in love with her art posters long ago and was excited to finally find her shop! In my mind, she sort of kicked off PI.F. for me by doing something so kind and generous. I imagine you have seen her work before on social media or Pinterest. This particular image and quote is extremely popular, especially in the chronic illness community. It’s not surprising people who are not feeling well are so drawn to such a vibrant image with an encouraging quote to match. Her beautiful Voltaire quote piece is hanging on my wall beside my bed and I am inspired by both her artwork and her kindness daily.
When I signed up for P.I.F. a few months later, my Voltaire print from Charity Elise called out to me (Send me! Send me!). When a fresh print arrived to my new acquaintance, she was being hospitalized after an emergency health scare. She said the artwork from a new friend helped to brighten up a dark time. When people have chronic illness, we are sick every day and might be in the hospital frequently. We don’t get flowers or cards that say “get well soon.” So getting something from a friend now and then that says, “I still care you are sick“ can mean the world.
These adorable spoon earrings went to my “Spoonie” friend who collects jewelry. Aren’t they soooooper cute?! Something else lovely happened with this purchase I just HAVE to share. Heidi, the creator of the Hammered Spoons shop was so inspired by the Pay it Forward Initiative, she refunded my payment and sent them herself! Amazing, right?! Heidi is a chronic illness survivor as well, and supports awareness causes through her hammered spoon sales. Like one giant hug of goodness going on!
My good friend and I were talking a while back about how her favorite face cream had been discontinued after using it for 30+ years. She hasn’t found anything else she isn’t sensitive to in the years since having to stop using it. I did a little digging and learned that her favorite product is actually still being sold; so, I was very excited to surprise her with a tube of her long-time face product! Reunited and it feels so good!
I read Still Me by Christopher Reeve about 10 years ago when I was first diagnosed. I remember listening to it on audio in my car with tears streaming down my face, but his amazing story empowered me to persevere. I still think about that book often and how much Reeve’s story has impacted me and so many others. A family member has recently been diagnosed with Arthritis, so I sent her this book. I pray she finds the same comfort and encouragement that I have found in his powerful words.
Lastly, I made something special for my Facebook friend who is going back to school. I covered a notebook with a magazine clippings collage. While I was doing this craft, the past month has been increasingly difficult for my friend. I wish I lived closer so I could give her a big hug, but this little creation will be my hug to her. I hope every day she is at school, she will keep it with her and know how proud I am that she is pursuing her degree despite all of the challenges in her life.
Pay it Forward is not like a chain letter. I’m not supposed to be GETTING 5 gifts in return. However, since signing up for P.I.F., I’ve been receiving sweet little things in the mail from different friends of mine. One was a beautiful, unexpected painting my friends created. It’s so bright and colorful- I love that it reminds me of our long-time friendship. Another friend sent wonderful handmade stationary she put so much effort into making.
I have received more in my spirit through the giving process than I can put into words here. The biggest surprise with P.I.F. was that each of the people I sent something to truly needed a pick-me-up and each felt the timing of the gift was perfect. Sending something out of the blue to a friend or acquaintance… just a post card or a little unexpected “I’m thinking of you” snail mail can interrupt someone’s day with kindness and light like you wouldn’t believe.
Hey you…Yes YOU!!! I would like to challenge YOU reading this to Pay it Forward to 5 people in 2015. I would love to hear how you sprinkled kindness over your world in the coming year. I hope you see blessings in abundance rain down on YOUR own life in 2015. Peace.
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Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!
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