October 12th is World Arthritis Day!!!!
It is also the day eight years ago we first heard the words, Mackenzie has Juvenile Poly-Arthritis and we were referred to a Pediatric Rheumatologist where a month later we received her full diagnosis. Our lives have been forever impacted since that day eight years ago. We have celebrated some very amazing ups and cried, screamed, and loved through some very big downs but through it all Mackenzie has proved that she is 100% Warrior!
Today on this World Arthritis Day, please take a few minutes to learn more about arthritis. It's not just an old persons disease (300,000 kids in the US have been diagnosed with arthritis) and it's not just about achy joints. There are so many types of arthritis and each one is different than the other and so is the treatment.
Please take some time to do something kind for someone today as you never know what silent battles they are fighting and if you are able, please join our 2020 Jingle Bell Run team and Jingle with us this December where you are for a Cure!!!! You can join our team or make a donation by following this link: https://events.arthritis.org/team/23113
Wow!!! We are just $448 from our Team goal for this year's Arthritis Foundation Jingle Bell Run!!!
We'd LOVE to have you "join us" this year and help us Jingle for a Cure!!! Due to the pandemic this year's JBR will be virtual so you can participate where ever you are!!! Your $35 registration fee goes directly to our team to support the Arthritis Foundation in their mission of awareness, education, advocacy, and research for a cure!
Join our team between now and October 15th and you will not only receive the exclusive 2020 Jingle Bell Run t-shirt featuring this guy pictured here, Jingles the official 2020 JBR mascot, along with a unique race medal and sticker you will also be entered to win a pair of JBR LuLaRoe leggings!!!
To join our team simply follow this link: https://events.arthrits.org/participant/212468 and then click on Join Our Team
Let's All Jingle For A Cure
Today is one of those really hard days. Today Mackenzie has another check up with her Rheumatologist and things aren’t going well for her. To top it off, thanks to this stupid pandemic only one parent is allowed to accompany her. Last time we had to do the one parent visit it was for our final visit with our team at U of M and mom got to be the one to go. Our first visit with our new Dr and team at Levine’s both parents were able to go because it was a first visit. Now today we are back to the restricted visit and it’s dads turn.
Our last visit was just six weeks ago (not our normal three months) and at that time we were just two weeks into her higher dosage of Orencia and he was hoping that by today she would be showing some improvement. Unfortunately that is not the case. Over the past six weeks she has continued to deteriorate with extended periods of stiffness and pain upon waking in the morning to full out swelling and debilitating pain throughout the day. She has been back relying on her crutches and wheelchair and is slowly beginning to withdraw from activity.
In so many ways this feels just like it did eight years ago when she was first diagnosed. Watching her battle this disease and the pain is heartbreaking. Listening to her fears of what might be next steps in treatment is heartbreaking. The inability to fix or take away her pain, the fear of the unknown, witnessing the battle she (and all JA Warriors) face makes us angry! No child should have to live in pain (for any reason)!
Today we pray for a new plan that will begin to provide her some relief from the pain and for strength for all of us as we get through this visit both in person (Mackenzie and dad) and virtually (mom).
“They whispered to her ~ you can’t with stand the storm 💙 She whispered back ~ I am the storm”
We are excited to be registered for this year's Jingle Bell Run!!!! Although it iwll be a virtual event the ultimate goal will be the same...to bring about awareness, advocate, and fundraise for a cure!!! Please consider joining our team whereever you may be or if you would like to make a donation to show your support you click this link https://events.arthritis.org/tea/23113. And as always we truly appreciate your love and support!!!!
Who doesn't love a sale!!!! We would love to finish August off strong with our mask sale fundrasing so we are offering a special coupon to use in our store. If you are still in need of a mask or two, please hop on over to our Etsy store and when checking out be sure to use coupon code: WEBAUGPROMO to get 20% of your order! As a reminder, $1.30 from every mask purchased is donated to the Arthritis Foundation to help further their mission of advocacy, support and finding a cure for arthritis!