CRPS and NASCAR Racers - Raising Awareness!
Martinsville, VA
October, 2014
Chevrolet. NASCAR. CRPS. Awareness. Pain. Dedication. Love. Commitment. Treatment. Noise. Diagnosis. Ethics. Teamwork. Marriage. Cure. Vibration. Sadness. Exhilaration.
These are all just words, random letters put together. They have no real meaning unless the people involved put meaning into them. For better or worse, that's what the Preacher said. Many of us can remember those words and for some of us they meant more than they did for our partners we found out later when the "or worse" came about.
But a few of us out in the CRPS Community, more and more every year, are blessed with amazing partners and spouses. For some, your marriage was tested and you survived. For others, our marriage didn't survive the test but we were able to pick up the pieces and move on and we discovered someone amazing down the road apiece. Men and women who stand beside us and fight the war, a CRPS diagnosis, every single day. Make no mistake about it folks it is a battle, a war even, a series of skirmishes that will last many of us a lifetime.
Having someone beside you who not only understands what it is you are fighting but also says "It's my enemy too and I am here beside you to do whatever you need me to do for as long as you need me to do it", well, that makes all the difference in the world. It's better than the best pain medication to know someone has your back let me tell you because there are some dark days with this disease. But it also helps you to turn the corner mentally, helps you to see that life moves forward and to understand that your life is not over.
I have been blessed with such a gift and I thank God every day for her. Not only is she there for me, in spite of her own battle with MS, but she is also there for all of you because she along with Smith myself and my mother Lynne (who battles her own chronic illnesses), run American RSDHope.
Brett Grosshans, whose story you will read below, has been blessed as well except Brett isn't the one with CRPS, his wife has it! But I guarantee you if you ask him if he feels lucky to have married Chris. When you read their story you will understand why, they are an amazing couple. When you are dealt the CRPS hand in life you have two choices. Well, you have many, many choices obviously but I will speak about two main choices.
1) You can spend most of your life complaining about the fact that life just isn't fair, why should you be in pain all the time and other people aren't; especially with all the horrible, mean, and nasty people out there (and there are a whole lot of them if you think about it).
Or why don't the people on America's Funniest Home Video's end up with CRPS when they do the dumbest, stupidest, craziest things in the world and end up banging their heads, arms, legs, butts, you name it, ten times harder than you ever hit anything? THAT is a question I ask myself sometimes but then I see a cat like Maru with his head stuck in a box and I laugh like everyone else.
2) You can, hopefully with the love, comfort, support, and nurturing of your spouse/partner/family/friends, accept that you have this horrible disease called CRPS, learn all you can about it, figure out a way to live with it, and move on with your life. To tell the disease to sit down, shut up, go to the back of the class and figure out a way to live your life in spite of this new obstacle.
If you are like most patients you start out like number one and move on to number two. Some get stuck at number one for a couple of years and some never get beyond it at all. It takes work, it takes help, and it takes time but you can make the move from number one to number two. Talk to people like myself and my wife, people who have been around a long time, there are a lot of us out there. Talk to people like Brett and his wife. Talk to other patients you might know who have had the disease for a long time, are married or have a partner, and are moving forward with their lives and ask them how they did it.
Read Brett and Chris's story below to see how their CRPS Awareness efforts is reaping huge rewards for our community and in the years to come will help bring a lot of publicity to our cause. Drop Brett a line and thank them for their work. They are a wonderful couple and I feel blessed to have met them
October, 2014
Chevrolet. NASCAR. CRPS. Awareness. Pain. Dedication. Love. Commitment. Treatment. Noise. Diagnosis. Ethics. Teamwork. Marriage. Cure. Vibration. Sadness. Exhilaration.
These are all just words, random letters put together. They have no real meaning unless the people involved put meaning into them. For better or worse, that's what the Preacher said. Many of us can remember those words and for some of us they meant more than they did for our partners we found out later when the "or worse" came about.
But a few of us out in the CRPS Community, more and more every year, are blessed with amazing partners and spouses. For some, your marriage was tested and you survived. For others, our marriage didn't survive the test but we were able to pick up the pieces and move on and we discovered someone amazing down the road apiece. Men and women who stand beside us and fight the war, a CRPS diagnosis, every single day. Make no mistake about it folks it is a battle, a war even, a series of skirmishes that will last many of us a lifetime.
Having someone beside you who not only understands what it is you are fighting but also says "It's my enemy too and I am here beside you to do whatever you need me to do for as long as you need me to do it", well, that makes all the difference in the world. It's better than the best pain medication to know someone has your back let me tell you because there are some dark days with this disease. But it also helps you to turn the corner mentally, helps you to see that life moves forward and to understand that your life is not over.
I have been blessed with such a gift and I thank God every day for her. Not only is she there for me, in spite of her own battle with MS, but she is also there for all of you because she along with Smith myself and my mother Lynne (who battles her own chronic illnesses), run American RSDHope.
Brett Grosshans, whose story you will read below, has been blessed as well except Brett isn't the one with CRPS, his wife has it! But I guarantee you if you ask him if he feels lucky to have married Chris. When you read their story you will understand why, they are an amazing couple. When you are dealt the CRPS hand in life you have two choices. Well, you have many, many choices obviously but I will speak about two main choices.
1) You can spend most of your life complaining about the fact that life just isn't fair, why should you be in pain all the time and other people aren't; especially with all the horrible, mean, and nasty people out there (and there are a whole lot of them if you think about it).
Or why don't the people on America's Funniest Home Video's end up with CRPS when they do the dumbest, stupidest, craziest things in the world and end up banging their heads, arms, legs, butts, you name it, ten times harder than you ever hit anything? THAT is a question I ask myself sometimes but then I see a cat like Maru with his head stuck in a box and I laugh like everyone else.
2) You can, hopefully with the love, comfort, support, and nurturing of your spouse/partner/family/friends, accept that you have this horrible disease called CRPS, learn all you can about it, figure out a way to live with it, and move on with your life. To tell the disease to sit down, shut up, go to the back of the class and figure out a way to live your life in spite of this new obstacle.
If you are like most patients you start out like number one and move on to number two. Some get stuck at number one for a couple of years and some never get beyond it at all. It takes work, it takes help, and it takes time but you can make the move from number one to number two. Talk to people like myself and my wife, people who have been around a long time, there are a lot of us out there. Talk to people like Brett and his wife. Talk to other patients you might know who have had the disease for a long time, are married or have a partner, and are moving forward with their lives and ask them how they did it.
Read Brett and Chris's story below to see how their CRPS Awareness efforts is reaping huge rewards for our community and in the years to come will help bring a lot of publicity to our cause. Drop Brett a line and thank them for their work. They are a wonderful couple and I feel blessed to have met them
CRPS and the NASCAR CRPS Chevy Race Team - How It All Began
RACING FOR AWARENESS - Our Story
By Brett Grosshans
We have teamed up with Ricky Johnson Racing (RJR), with myself, Brett Grosshans, initially as a member of the crew and Chris as the Team's Photographer. In 2008, CG Photography, started to sponsor RJR, while continuing to provide photography services for the local track and several Divisions and other teams. Chris' health started to go through some major turns from a variety of problems, starting with a knee surgery in which a Deep Vein Thrombosis formed. This small problem seemed to be the tip of the iceberg. Her health issues became part of the reason why I became a photographer. It was almost by default. We knew we had become part of something special with RJR and the relationship grew.
In fact one of the last weddings Chris shot was Christopher and Allison Johnson's in November 2009. Chris (shown in her wheelchair below) had not been correctly diagnosed at this point. Photography was her passion and she took it to the next level: certification. She studied, processed her photos, took classes, prepared, took the written test, and had to have her images evaluated by a panel of judges. She indeed passed this portion of the process and became a Certified Professional Photographer through the Professional Photographer’s Association (PPA).
It was during that process that her symptoms were affecting her even more. At first it was just pain in her right hip and leg. She would get severe sweats with the pain and it literally would wear her out. She then started to experience pain in her left shoulder blade which then traveled all the way into the hand.
She was seeing a Pain Management Doctor who referred her to a Physical Therapist who worked diligently to relieve the pain and release the contractions in her left arm and right hip. He was actually able to get the pain in the right hip into remission. The Therapist was the first one who started to think that there was something unusual going on and started to do some research. He thought she could have CRPS. We did not know anything about this nor had she been officially diagnosed at this point. She finally got in to see her Neurologist and was officially diagnosed with CRPS. Finally, two years later, we were getting a name for all of this, something to research.
All of this time, I was still assisting RJR taking photos of the Team at various tracks around Virginia and North Carolina for both drivers. Chris would do the processing of the photos on the computer and I would post them to the websites. At the end of the year, Chris would go through the year's shots and create a photo book for all of the Team Members. She continued to do all she could for the team even though she was not able to be at the track to take the shots, hold a camera or cheer the drivers.
The CRPS/RSD was contained in her left shoulder blade and arm until about a year ago. Our dog stepped on her right foot, which caused a hematoma over the next few days. She went to her Primary Care Physician who referred her to a Podiatrist to see if there was anything that could be done. That visit was a big mistake. This doctor decided he needed to aspirate her foot. She told him she has been diagnosed with CRPS, but he said he was familiar with it.
He proceeded to shove the needle numerous times into the top of her foot, in an effort to make things better. However, he did nothing more than create yet another site for the disorder to attack. Ever since then she has had problems with walking. In April of this year, she woke up one morning and her right arm was shaking severely, up and down. Her Specialists here were able to get her a referral to a Neurologist at the University of Virginia.
Fast forward: that doctor spent 45 minutes listening to Chris as she outlined what had happened thus far and reviewed all of the data Chris brought with her. She told Chris the shaking was due to the CRPS/RSD. At least this doctor knew what it was but sadly, also knew there was not a lot that could be done about it.
It was soon after the severe shaking began that I came across RSDHope.org , the website for the American RSDHope organization, and decided to pursue a decal version of the National CRPS Awareness Ribbon so our race team could put decals on all of RJR's race cars.
CG Photography has been such a big part of the team over the past 6 years, so it was natural to recognize Chris while trying to raise awareness across the local racing community. It was not an easy decal to create but we finally got it done. We now have decals on all three of the RJR cars: our Modified and both Late Model cars. We recently participated in the 6th Annual Hampton Heat at Langley Speedway, in Hampton, Virginia. During the meet-and-greet pre-race festivities, Team members (who are shown wearing CRPS/RSDS T-shirts in the pictures included here), spent time talking to fans not only about our race team but also about CRPS and RSDHope.org.
We will endeavor to spread the word at every racing event. We have added a link to both driver websites and have included the meet-and-greet photos.
- Brett Grosshans
Eddie Johnson Racing
Christopher Johnson Racing
