Robert Smith, age 32, was first diagnosed with psoriatic arthritis at age 22. For the last ten years he has been battling his disease in an effort to continue his passion, magic. He celebrates his life through his performances and with his new project, Find Your Win. In this arthritis showcase you will get to know him better and his notion of finding a win in every day.
What is the status of your disease? Active, remission, etc.? According to my rheumatologist I’m currently in remission. Tell that to the arthritis when it flares up, right? Actually despite those occasional nagging days, I’m in about as good a remission as anyone could hope for.
What treatment protocol have you undergone and what has been most effective for you? When I first began experiencing pain in my senior year at Eastern New Mexico University, I was taking as much as 1600mg of ibuprofen a day. Yes, daily. And that lasted for a solid 18 months including and past graduation. That was my decision mind you. No doctor would recommend taking that high a dose, for that long, without very close supervision.
After graduation, my mom, who has RA, convinced me I had to see a rheumatologist. He initially started me on methotrexate. I spent a year or so varying the dose under his direction to get what I would call poor to fair results. On a 1-10 scale, 10 being amazing results, the methotrexate was a 3, maybe a 4 on an exceptional day.
After a year or so my doctor suggested Enbrel. I was totally against it because like many I hate needles. So of course I put it off. That was a huge mistake on my part. All I did was allow the disease more time to progress when I likely could have stopped it early.
In February of 2007, I finally gave in and started Enbrel. I would be doing the 50mg prefilled syringes. So of course, I had to have a nurse inject the first one to show me how to do it correctly. I will never in my life forget that moment. Here I am. I hate needles and this very nice lady jabs me in the thigh. It hurt so bad I thought my leg was going to explode.
Three days later, I was running on a treadmill for the first time in 7 years. Three months after that, I’d dropped 29lbs. Is Enbrel a miracle drug? I don’t know. I can only say it gave me my life back. But I want to be clear to anyone starting a new therapy like Enbrel. It really can take months to achieve real results. Me being virtually pain free within a week I think is atypical. So if you’re just starting and feel like you’re struggling, stay with it.
What has psoriatic arthritis meant to your life?
Initially I thought it was some horrible life sentence. My mom has rheumatoid arthritis and I’ve seen how hard she has struggled. There are varying levels of this disease. Even though I caught it fairly early on, I still faced monumental challenges.
I had just gotten married in 2005 and that’s about the time the disease was beating the hell out of me. Joints on my right ring finger were so inflamed I couldn’t bend the finger. It wasn’t fused but the swelling and inflammation was so bad that it just would not bend.
You know how sometimes when you’re falling asleep your body suddenly jerks you awake. That would happen to me and my right hand would clench. The pain of that involuntary muscle spasm forcing my right ring finger to bend felt like being smashed with a hammer. I would literally roll out of bed grasping my finger, screaming out in pain.
Can you imagine? Here I am, a newlywed, and my wife is getting startled awake with me screaming in pain.
At that point in the disease progression, I hurt so badly I would be lucky if I made it out of bed by noon or 1 o’clock in the afternoon. This went on for some time until I finally started the Enbrel.
Since then, even though I have little pain, I have to deal with the long term damage to my joints. I have several joints now permanently fused. That alone causes a considerable challenge for me as a magician. There are techniques and sleight-of-hand work that I am not able to do any longer. So certainly I’ve been forced to adapt to find magic that I can do.
What are some of the challenges you face in dealing with psoriatic arthritis?
You know I think some folks hear arthritis and think of seniors. They don’t realize that this disease can attack any age group and can have a chilling effect on the person’s life. It can effect everything from grasping a fork, to getting dressed, to even just sitting still. Yes. Sitting still can in fact be painful.
For me personally, as I alluded to before, I face a challenge everyday of performing my magic with joints that don’t necessarily work they way they’re supposed to. But, as anyone with this disease knows, you have to adapt to find a way to make things work.
Mind you, the biggest challenge I face everyday now is how to keep up with a 17-month-old little boy. I swear the cure for arthritis lies in finding a way to bottle the energy of a child and then inject that instead of a drug.
As a magician how does psoriatic arthritis changed the way you do magic? Do you have to perform differently because of your arthritis?
Yes. You see these guys on TV that manipulate things with their hands. They make cards appear out of thin air. They do these really cool looking things with coins and what not. I can’t do that. My fingers, while they can bend now, just no longer have the dexterity to do those things.
In a way it’s been a blessing for me because it’s forced me to focus less on the tricks I do and more on entertaining the audience. I know. Quite the concept.
We love magic? Do you ever do magic shows for charity?
I do… Our only child, Nathan, was born in December 2010. He was happy, healthy. Ten fingers. Ten toes. Everything was where it was meant to be.
Sara and I felt so lucky and we wanted to find a way to give back. We didn’t have a lot of money to make things happen, but we did have a lot of time and of course, I had my ability to entertain. So we decided that every city I performed in, if there was a children’s hospital nearby, I’d go do a show for the kids.
In April of 2011 we debuted the program which went on to be called, “Nathan’s Gift.” It took place in the Walt Disney Pavilion of the Florida Hospital for Children in Orlando, Florida. The program was presented on behalf of the Lake County Fair in nearby Eustis, FL.
After the show there were several kids who weren’t well enough to come up to the community room for the show. So I went to visit each of them in their rooms.
I have to say I went into the hospital that day thinking I’d be the one giving these kids a gift. I was so wrong. I was the one who received the gift that day. To be in the presence of those little warriors, each battling for their own survival was so humbling. They laughed. They smiled and for about 30 minutes, they could just be kids.
At the Arthritis National Research Foundation we feel research is the key to finding new treatments and a cure. This is why we focus our efforts strictly on funding cutting-edge research. How do you feel about the research underway and what would you like to see happen?
You know there’s so much research that has been brought to fruition just in my lifetime. I mean, when my mom was young and first diagnosed in the 1960s, they gave her Tylenol. That’s it! So certainly when you consider the biologics alone, we are changing the battle against this disease.
My concern with the research, long term, is that it will be focused more on maintenance of the disease and not a cure. It’s probably not popular to say, but pharmaceutical companies won’t make billions of dollars if they cure arthritis, or any other disease that currently requires maintenance medications.
At the same time, the drive for profitability is a double edged sword. We hear people talking negatively about, “big pharma,” and “corporate profits,” etc. However, the fact is that the drive for profitability created a drug that changed many people’s lives, including my own.
I’d like to believe one day they’ll be a cure. I’m optimistic like that.
You started a website, FindYourWin.com? Tell us a little about Find Your Win and what it means, both for your life and for others?
Find Your Win started as sort of a rallying call. There are so many broken people out there. Whether from painful joint diseases, or poverty or despair, folks are hurting. So the idea of finding a win is about looking the most challenging day square in the face and being able to find one positive thing about it.
On Twitter (@justrobertsmith) I’ll occasionally see people using the hashtag #findyourwin and then sharing some great thing they accomplished that day.
For some people living with chronic pain, that may just be getting out of bed that day. But if that’s their win, it’s a big deal. When you live with pain the way we do, sometimes building on one small success at a time can get momentum going your way.
Is Find Your Win going to change the lives of millions of people? Who knows? If we make a difference for just one person then it’s all worth it.
Do you have a message you’d like to convey to others suffering with your disease or other arthritic diseases?
This disease isn’t going to quit so you can’t quit either. You absolutely must be proactive and take control of your pain management. That alone can be difficult. During your journey, find a win every single day. You can beat this into remission. The fact of the matter is that with a disease like this, tomorrow could be the day someone goes into remission. Or someone like me, goes active. It’s a daily battle that we all have to resolve to win.
Keep up with Robert on twitter @JustRobertSmith or visit him at www.FindYourWin.com