North Central Chapter
Personal Stories
Mike Binkowski
My six-year old son Erik has been living with Juvenile Rheumatoid Arthritis (JRA) since he was 2 years old. Since his initial diagnosis, Erik has had to endure more than any six-year old (or 60-year old for that matter) should have to; including countless visits to the doctors, specialists, hospitals and clinics. He has been on many combinations of medication in an attempt to find the right one that will help keep his arthritis under control and allow him to remain active. When his arthritis is active, mornings are particularly painful for him as his joints stiffen overnight, making it difficult to get going in the morning. For the first few years, Erik would literally become hysterical when needing blood drawn or injections, but has recently overcome this fear to the point where he now cheerfully endures us giving him weekly injections in his arm or leg to control his arthritis.
As if the challenges of living with Arthritis weren't enough, shortly after Erik was diagnosed with JRA, we learned he also had Celiac Disease. Celiac Disease is an intestinal disease that does not allow his body to digest a protein (gluten) found in wheat, rye, barley and oats. If he ingests these foods, his growth will be impacted and a host of serious medical problems could result. The Celiac Disease is now under control, but Erik must maintain a strict gluten-free diet. Currently, Erik has been doing well and his weekly injections seem to be keeping the JRA under control. In spite of all this, Erik manages to take it all in stride and thanks to his medication, is able to do all of the things that any other 6-year old would do: riding his bike, playing soccer, basketball, baseball, ice skating and even downhill skiing.
So, after seeing Erik overcome so much at such an early age, I asked myself what else could I do to make a difference and to show Erik how proud I am of him?
This is when I learned about the "Joints In Motion" program and I made the commitment to complete the Dublin Marathon in Dublin, Ireland on October 28, 2002. I will run in honor of my son, Erik, who has gone through so much because of this disease.
Shanon Murphy
State Capital 5K participant
This is my first year being involved with Joints in Motion. I heard about it through the Arthritis Foundation, which has been a cause near and dear to my heart since my 3-year-old daughter, Shelby, was diagnosed with Juvenile Rheumatoid Arthritis two years ago. Shelby has been through so much and is such a tough little girl. She has been through periods of time where she was unable to walk or play with her little sister. Some of the medications she has been on have caused her stomachaches and weight loss, while others caused facial scarring. She's had multiple steroid injections into her knees, which have caused leg length discrepancies and atrophy to her leg muscles. Her arthritis also causes an eye disease called iritis, which comes and goes, and without effective treatment can threaten her vision. Shelby's most recent struggles are with her leg growing crooked due to the affects of her arthritis. But, despite all this, Shelby stays positive and is an inspiration to our family to fight for a cure for this disease. That is why she is my honoree and inspiration for running as a member of Joints in Motion.
It was a quest for myself and my family to raise funds for the Arthritis Foundation, not only because I am a member of the Joints in Motion team but also because I am a mother of a child with arthritis. I could have never anticipated how giving and generous our friends, family, co-workers and even strangers would be. For example, Applebee's in Cottage Grove, MN where I am a server, held a fundraiser where all the servers volunteered their tips that evening to donate to the Arthritis Foundation to help benefit Shelby and others like her. In addition, they had a silent auction and all together raised more than $3,000. My husband, our kids and I ran around the restaurant all night that evening meeting strangers and answering many questions about her disease. Raising funds for this cause has been one of the most rewarding things I have done. Sharing my daughter's story with others has spread the awareness of this disease to many who would have otherwise never heard of it, and has allowed us to meet other moms with children just like Shelby.
It seems devastating that a child should have to bear this disease. But, then again if it weren't for Shelby having this disease, like so many others, we may have never heard of it and not have been part of this wonderful organization that's helped us to inspire so many. So, maybe it's blessing after all.
Tim
I am going to run the Honolulu Marathon on December 14th, 2003 with Trish as my honoree. I could pepper you with tons of stats on Arthritis and its impact on people around the world, but I plan on telling you a story, our story, our journey to date in dealing with Rheumatoid Arthritis (RA), what this effort is all about and how you can help.
How Did We Get Here
Late Feb. 1998 � Trish decided to sign up for her first marathon even though she had no idea how long a marathon was (26.2 miles), she figured it was a great way to meet nice people (boy she was right on that concept)! During this first fateful call, we chatted about the program and it sounded like we would run about the same pace so we agreed to run together the next day. I tell Trish she fell in love with me during that run - six weeks later we had our first date, eight months later we were engaged, and then we were married on September 18, 1999. Twists and Turns of Life
Together Trish and I have done 4 marathons, each time we have gotten through the pain and challenges of a marathon together, each time holding hands across the finish line. Due to the twists and turns of life, today I am doing this marathon on my own.
Last spring we found out Trish has rheumatoid arthritis. For a few weeks Trish would wake up with swelling and pain in joints, first her left elbow, then her left index finger and finally her right knee. There was no explanation for any of it, no bump, no bruise, no twist, just unexplained pain. After working with the doctors and undergoing tests she was diagnosed with RA.
What is RA?
We had no idea what RA was when we found out she had it. As many people do, we immediately thought she was too young to have arthritis, we learned RA is not age specific. RA is actually an autoimmune disease where your autoimmune system attacks the synovial membrane (lining around each of your joints), causing swelling, tightness and pain. What else is RA? RA is unpredictable. RA can be nasty. RA is scary. RA is frustrating. RA can be a devastating disease where joints can end up extremely damaged. RA can, in extremely rare cases, attack internal organs. The toughest part of RA is it is a new day every day. Some days Trish feels decent, some days she does not � we never know until that day.
How is Trish's RA today
We just had our first baby, Tucker, and lots of people asked if pregnancy would be tougher, actually while pregnant the RA basically went into remission, which the doctors told us would most likely be the case � we may have a lot of kids! Unfortunately, post-pregnancy RA has made its presence known again and that has been a bummer, but we take it one day at a time.
Fight BACK
For those of you don't know, Trish has a big independent streak in her and I had to do some convincing to have this opportunity to run this marathon and to fundraise in her honor. I will explain to you the same way I explained to her my motivation.
RA is unpredictable and not something I can control. I can help by doing the heavy lifting, saving her trips up the stairs, but we are at the mercy of specific path RA decides to take each and every day. At its worst, I have had to button Trish's shirt in the morning because the pain in her elbow brought tears to her eyes. It is so tough seeing a person you love with all your heart have tears of pain. Having the opportunity to fundraise for her and run this marathon for her is something tangible I can do and feel like I am fighting back.
Brittany Martynow
My name is Brittany. I am 16 years old and a junior in high school. I have had Juvenile Rheumatoid Arthritis (JRA) since I was 2 years old. My doctors said I'd be fine and that the JRA would go away at puberty. Instead, it went into remission and came back stronger. I've tried staying active and with many medications, I am doing all right.
One day I went online and looked at what the Arthritis Foundation does for people. I signed up for an Arthritis Walk. I felt so good about raising money for people and knowing that it could help me and others with arthritis. I thought it was so cool knowing that the money I raise was going to help find a cure.
I went on the web site again and noticed Joints in Motion. I think that the destinations were what made my final decision to sign up. In 2005, I chose to do a 12 mile hike in Ireland. It was amazing!! My overall experience was great. Before the hike, I didn't think I would be able to make it. Afterwards, I felt better than I have ever felt before. Now I am plannng on doing a hike in Colorado in October 2006.
