This is a pretty inspirational video on a young Australian woman diagnosed with Rheumatoid Arthritis. Not only does it prove that arthritis doesn’t discriminate as she was young, fit and active when her symptoms began, but it also shows how a positive outlook and quick action can help make this chronic disease more tolerable.
Classic! Inspired by all of the “Sh!t people say” videos going around these days.
Right on LymeeLiz. Thanks for the creativity.
As some of you know, I’ve sat on the Arthritis Foundation Leadership Council Board here in Chicago for a few years now. In that time, I’ve met a lot of really wonderful people who share a common passion… To spread awareness of and eventually find a cure for Arthritis; in all of its nasty forms. Speaking of which, there are currently more than 100 different forms of Arthritis recognized by Rheumatologists throughout the world.
Among some of the inspirational people I’ve met along the way is Courtney Smith, the producer of the award winning documentary Beauty Does Lie: The Untold Stories of Autoimmune Diseases. Courtney was diagnosed with Myasthenia Gravis (MG) at the tender young age of 22. MG is a neuromuscular disease that produces antibodies which block muscle cells from receiving messages from Courtney’s nerves. At times, she is physically paralysed and her body is unable to move or respond because of this blocked communication between the muscles and nerves. Fatigue and muscle weakness are an everyday reality of Courtney’s life. But even after a series of life threatening trials and tribulations, all who know Courtney, know that she remains to live an incredibly happy, upbeat life.
I have recently had the pleasure of being asked to team up with Courtney to co-author her memoirs. I have to say I am beyond smitten with the opportunity. We plan on weaving Courtney’s tragic story into one that will make readers laugh, cry and ultimately be inspired by her incredible, almost unbelievable life story. I will keep you posted as I dive into this exciting project with Courtney. Wish us both luck and send some extra spoons our way. I have a feeling we’re going to need them.
I just learned about a really cool community for people like us with autoimmune diseases along with other chronic illnesses like psoriatic arthritis, ADHD, CMT, Crohn’s, Fibro, etc. It’s called Ben’s Friends. You can check out Ben’s story in the video below and visit the site to get connected with others in the same boat.
If I randomly said the word “arthritis” to someone, they would most likely conjure up an image of a grandparent complaining about achy joints. I for one used to always think of grandma Petrillo from the Golden Girls and that awful, menthol, medicinal scent of joint creams like icy hot.
Most people don’t hear the word “arthritis” and think of a twenty something person like myself. Or worse yet, a small child. Did you know that there are approximately 300,000 kids in the US who have been diagnosed with some form of arthritis? In fact, there are lots of these kids who spend most of their childhood in and out of hospitals. Many of them occupy their summers healing from joint replacement surgery and spend what would be there after school playtime getting medical infusions at their doctor’s office.
There is no cure for arthritis just as there is no sound theory as to why people get the many forms of arthritis. Some evidence indicates that getting arthritis may be linked to hereditary causes while some research points to environmental factors.
Wonderful organizations like the Arthritis National Research Foundation are working towards completely eliminating arthritis someday. The Arthritis National Research Foundation (ANRF) actually funds scientists to cure arthritis by discovering the causes of arthritis and its related diseases including osteoarthritis, juvenile arthritis, rheumatoid arthritis, lupus and other autoimmune diseases. In addition to funding scientific programs, this organization also runs community focused programs that help generate awareness for all of the different forms of arthritis like the ones that affect kids.
View the video below to meet a little girl named Bailey who is the ANRF’s hero. Children like Bailey give me the inspiration to keep writing and sharing the stories of everyone affected by arthritis.
God bless children like Bailey. Words cannot describe how much my heart goes out to this little girl and her family.
I don’t know about you all, but as hard as I try to stay positive, I have my negative, lonely RA days too. When you wake up in sweltering pain knowing that it’s going to be a difficult day before you even get out of bed in the morning, it’s easy to feel down. On day’s like this, I personally find myself asking myself a million questions. Like, “why was I targeted with this painful chronic disease called Rheumatoid Arthritis? Why do my joints constantly ache? Why can’t I jump out of bed and cease the day like most 29 year olds?” When this happens, I have to remind myself that I’m not fighting this battle alone. Plus, it could be much worse… I could be dying.
With the numerous advances in RA treatment, life can be very close to normal for the 1.3 million Americans living with Rheumatoid Arthritis. But that doesn’t mean we can just sit back and wait for other people to create solutions for this crippling disease. Members of the arthritis community have to stick together and talk about our issues if we ever want to help solve them.
In this next section, I’d like to highlight the journey of a fellow Rheumie from Chicago, named Maureen Niswonger. She represents one of the many positive faces of Rheumatoid Arthritis.
Maureen grew up in a healthy, happy home. Like many kids from Chicago, she began loving baseball before she could really even understand what a home run was. When Maureen was young, her mother was diagnosed with severe Osteoarthritis. Maureen now believes that her mother may have been misdiagnosed all along. She may have actually been a Rheumie too.
In early 1998, Maureen was in her late 40’s when the downward spiral began. Maureen fell and injured her wrist. Next thing she knew, she was admitted into surgery and soon after that, started receiving regular physical therapy treatments. She was constantly in pain. Her hand began swelling. She started getting cortisone injections.
Maureen lived in this state of constant pain over the course of the next two years before she was finally diagnosed with Rheumatoid Arthritis. She found herself missing work and rescheduling meetings until she was treated by one of the head Rheumatologists at Northwestern University.
Maureen tried Methotrexate and when that wasn’t working, her doctor recommended Infliximab infusions, otherwise known as the drug Remicade. Remicade is one of three major TNF (Tumor necrosis factor) inhibitor medications. This drug has been successful in treating Maureen’s Rheumatoid Arthritis for many years. As most Rheumies can relate, we typically find ourselves turning toward several treatment options before finding one that helps get the symptoms under control. In my case, I’ve probably been through 20 different combinations of drugs.
Shortly after finding the treatment plan that best fit her needs, Maureen could again focus on her career along with regular social and physical activities. She contributes her treatment success to healthy eating, regular exercise and the right medication. She now bikes, plays golf, skis and even hiked in Antarctica! How’s that for success and motivation?
I firmly believe that our community of Rheumies have to unite and fight this battle as one. The more we fundraise, generate awareness by sharing our stories and learn about this disease together, the more powerful and effective we can become in making our own lives better. So, if you take anything away from reading my blog, please just know that YOU ARE NOT ALONE. Let’s stand together and make a difference!!
If you haven’t found relief yet, please know that there is something out there that can and will help alleviate your RA symptoms. It may come in the form of a medication, a special diet, a yoga routine, a hug or a prayer. I just hope you find the treatment plan that works for you sooner rather than later so you can enjoy most of your days, if not all of them.
What is your RA story? What methods of treatment do you find most successful?