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.
There.
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.
I started listening to the Universe a little better at that point but I had other deadlines. I moved “pain” up a few slots on my to do list.
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
In case you missed it:
Sara says
I liked Tanya’s story!
ann says
I studied psychology and parkinson’s disease was always something that I was interested in. David’s DBS shows just how far technology has come and I’m inspired by his upbeat personality.
Emily Benzing says
I believe that Bhim Mahat’s story really inspired me the most. The quote that really tugged on my heartstrings was “ALL CULTURES CAN UNDERSTAND THE LANGUAGE OF LOVE” .. that is true. After his surgery, he immediately starting helping others with their heart problems. He spoke in such a classy fashion – all cultures can come together and help each other. That’s what he means by all cultures can understand the language of love. Love overpowers everything. As a world, not just a country, we can come together and create beautiful things. It really inspires me to make a difference.. just show a little love and compassion towards others, no matter who they are.
Elizabeth J. says
I am inspired by all the honorees so it’s hard to pick just one. I am impressed with David’s story that while living with Parkinson’s Disease himself, he devotes his time and energy to helping other Parkinson’s patients. They all seem very strong and brave with all they have had to endure.
jeannine d says
Twinkle VanFleet inspires me the most. My sister has a disease that leaves in her pain and her body more likely to catch a germ bug.
donna says
Drawn to Twinkle’s story because of her name. Very unique and beautiful along with a beautiful story.
Rosie says
My mom was crippled with arthritis from a very young age, for years she could not walk, but eventually with a varied approach she could walk some, so I can’t imagine how hard for a child to endure that pain. My dad used to have to carry her, we were very poor. She had to take 16 aspirin a day! I like Lisa Visser because what happened to her was so unexpected and changing her life in a blink. She has managed to turn it into a positive experience and help the most vulnerable.
Aisha says
Lisa Visser inspires me because I enjoy volunteering to homeless feeding center and she has the same heart! I like that she is a survivor and offer to help others.
julie says
Andrea’s story was my favorite to read. My best friend has a congenital heart condition and she reminds me so much of Andrea. They’re both fighters and have used their conditions to inspire others.
heather says
I am so inspired by Lisa Visser’s story, she is amazing and I love that she gives back to the homeless. I give back to the community by donating to local charity organizations and also to local animal shelters.
julie says
All of the stories were so inspiring. Kerry and Qi’s stories were particularly impactful because a close family member of mine as well as a friend was affected by diabetes. It was really hard seeing the disease slowly affect various parts of their bodies and lives.
marie says
Tanya Hall. She created something beautiful out of a not so beautiful situation.
Dawn Monroe says
I’m inspired by David Simmonds who lives with Parkinson’s Disease and uses humor to deal with daily obstacles. I would use the Visa for our residents in need program through our school.
Heather Ellis says
I found Twinkle’s story inspiring. I have a friend who lives with chronic pain and it can be difficult for those who do not to understand.
linda says
I’m a nurse so I’m constantly inspired by all of the fighters that I see every day. I wanted to become a nurse for as long as I can remember. My brother was in the hospital quite a bit and we always had nurses that went above and beyond. I knew that that was what I wanted to do when I was older. I loved reading all of the stories but was immediately drawn to Twinkle’s story and her quote “”WHEN YOU THINK YOU CAN’T, MAYBE YOU ALREADY HAVE.” I think it’s so true, that everyone has those moments of doubt but before you know it, you find yourself crossing over that finishing line.
Elle says
Dr. Thomas Okello’s story inspires me the most.. I like that he became a doctor himself to help others and fight against the disease that so greatly affected him.
I do not currently live with medical technology.
Kelly D says
David Simmonds inspires me. I like that he works to help other Parkinson’s patients.
Kristen says
I’m so glad she’s feeling better!
Jessie C. says
I do not live with medical technology. Twinkle VanFleet is an inspiration to me. She turns her experiences of fighting disease into opportunities of helping and supporting needed people.
Lisa Brown says
Tanya Hall is inspirational. It is scary to be born and deal with having a hole in your heart and all the side effects and health issues that arise from it. She stayed positive; she started a site to help others like her to get answers. I do not live with medical technology but my husband was saved from cancer through medical technology. Thanks for the chance. jslbrown2009 at aol dot com
Julie Wood says
I think that ANDREA VOLFOVA is so inspiring about how she lives with a congenital heart condition. My brother also has a congenital heart condition and he lives with a new heart valve. Medical technology is really helping him live a normal life!
Harmony b says
Dr. Thomas Okello is inspiring. The fact that he became a Dr to help others that suffer the same heart problems he did is amazing
Amy Orvin says
I am most inspired by Sheila Vasconcellos’s story. She has a tough illness but continues to give back. I am very happy to say that I don’t use medical technology.
Joyce @ It's Your Life says
It interesting that medication is given to mask pain, but the real issue is never addressed. Pain from arthritis is caused from two things, poor good gut bacteria and inflammation. I want to encourage you to visit the current issue of our magazine and learn how one man rid himself of all symptoms of rheumatoid arthritis.
Echo says
I think Tanya’s story resonates with my the most. My daughter was born with a small hole and murmur in her heart. Luckily, it has gotten smaller as she has aged, so no surgery has been needed, but you can imagine how having your child’s heart monitored feels. It’s wonderful though, that they have the technology to do it!
Echo recently posted…5 Ways to Use Vaseline for Your Toddler
Sandy Sandmeyer says
Pain has gotten a bad rap & placed on the back burner because of the pain pill abuse in recent years. This makes it difficult for those with real pain issues. Thanks for sharing your journey with those who don’t know where to begin.
Sandy Sandmeyer recently posted…Life Reimagined or Reimaging Your Life
Sandy Sandmeyer says
Thomas Okello’s story inspires me because of his young age and his heart to give back to others so they don’t suffer in the way that he has. That he became a cardiologist is even more inspiring. A situation that could have caused him permanent harm, he turned into a blessing.
Sandy Sandmeyer recently posted…Life Reimagined or Reimaging Your Life
Shelah says
I am so glad that the universe spoke to you. You are in a position to help so many people. Thank you for your caring and compassion.