The universe is a funny thing. Lately, I’ve been getting little nudges to write about chronic pain in children.
It’s been a while since I’ve written about Pea’s Juvenile Idiopathic Arthritis. I’ve been reluctant to write much about it because…I think she is finally in remission.
I said it.
I’ve been afraid to say it because I did not want the Universe to hear–and smack me down. There is a 50% chance that she can remain in remission for the rest of her life.
But after ignoring the Universe’s little nudges, she decided to shove me into the street so I think she’s okay with my admission that Pea is off medication and not experiencing much joint pain.
First there were the search terms that kept popping up in my site analytics. Terms like, “How to cope with having a child with chronic pain.” I have written about how to help a child cope with their chronic pain but not about how to help the mothers cope.
So I put it on my list of topics for another day and went on my merry way.
Then the pain related search terms popped up more frequently.
It came to a head a couple of days ago.
I saw more search terms. Then Facebook decided to fill my feed with news from the Juvenile Arthritis groups I am in. (I hadn’t even noticed that they weren’t showing up in my feed anymore.)
Later that day, while at the grocery store, I ran into a mom whose kids went to the same daycare as mine when they were infants.
I started my blog when the kids were in preschool. I could barely function when my little “Irish twins” were infants and toddlers, let alone write. I am in awe of those of you who can do it. This mom, who I haven’t interacted with in years, mentioned to me that she isn’t getting any sleep because her oldest is waking up every night because of leg pain.
She had no idea that Pea has been struggling with leg pain for the past five and a half years.
So I told her how I handle my son’s growing pains and Pea’s knee pain. While explaining how I time and rotate a heating pad with a cold pack, use arnica gel, and essential oils, another mom walking by stopped to listen because her child has growing pains.
So she gave me a gigantic push in the form of an opportunity from Medtronic’s Bakken Invitation program—so here I am, sitting here and writing about pain.
Medtronic Philanthropy’s Bakken Invitation program celebrates people who, “with the help of medical technology,” face and overcome their health challenges and now use their “extra life” to give back to their communities.
Of the twelve honorees, I was drawn to the story of Twinkle VanFleet (Universe…Twinkle. Tell me that wasn’t a huge hint!) Twinkle suffers from Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy Syndrome. She is now the advocacy director and executive board member for the Power of Pain Foundation.
She works on policy efforts, patient awareness, and other aspects of chronic pain.
[clickToTweet tweet=”One of the Power of Pain Foundation’s sayings “With motivation for a cure, we’re turning pain to power.”” quote=”Ms. VanFleet shares that one of the foundation’s sayings is “With motivation for a cure, we’re turning pain to power.””]
How amazing is that?! I have used my blog and my social media platforms to raise awareness about Juvenile Arthritis in the past. I am ashamed to say that as life as taken other turns, so has my focus. Luckily, the Universe has my back. I will continue to shed light on chronic pain in children and how we can help support them and their families.
I invite you to meet this year’s honorees and be reminded yourself that there are good people in this world that are giving back to their communities, despite the health challenges they face themselves.
I hope one of them inspires you, as Ms. VanFleet has inspired me.
As a special thank you from Medtronic, they are giving one of YOU a prepaid $100 Visa gift card!!!
All you have to do to be entered into the giveaway is visit the honoree page and read about these amazing people and then return here to comment on this blog post by March 18, 2016 and share which of these honorees inspires you. If you live with medical technology yourself, I would love it if you also shared your story in the comments.
Hey Universe, I won’t forget to use my voice to raise awareness about the 300,000 children in this country that suffer from joint pain due to an autoimmune disease like Juvenile Arthritis again.
To read more about our Juvenile Arthritis journey: Life with Juvenile Arthritis
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