I Rode My Harley Across the U.S. to Talk About Psoriatic Arthritis
Tom "EZ" Goen, 49, had psoriatic arthritis, but didn’t get treatment because he lacked health insurance. After being hospitalized and filing for disability, he finally got back on his feet with the help of his state’s health insurance program. In an effort to get the word out about how people in pain can get assistance, Goen rode his motorcycle across 48 states talking about his psoriatic arthritis.
In a matter of weeks, I went from essentially spending three years on the couch to traveling 14,600 miles across the country on my Harley Ultra Classic, all because of my psoriatic arthritis.
I was diagnosed in 2005 after going to the doctor with soreness in my back and a spot of psoriasis on my foot. But it wasn't until early 2007 that my condition got really bad. I was living in Illinois and didn't have insurance so thought I couldn't get any help.
By the time I went to the hospital, I had to get six pints of blood because I was so anemic. I was there for five days in January with all kinds of doctors working on me, and I had to go back for five days in February. My feet were so bad that they had to soak them because the psoriasis was about an inch thick. When I left the hospital, I had to wear cast boots even in the winter in the snow.
When I finally left the hospital, I spent the next two and a half years filing for disability. I knew there was help down the road, but I didn't realize I could get care before the disability kicked in. I was living in Iowa by that time and they had IowaCare, a health insurance program that allowed me to see a doctor. When I got this, I was finally able to get back on my feet and get around a bit.
I assumed there were other people out there who were laid up as well with all kinds of health problems and didn't know they could get help. Some were probably too stubborn to get the help they needed or weren't educated about what was available. So I decided to go on a trip to spread the word.
A cross-country journey
I ordered a Harley and got it just before my trip. My bike has three extra wheels on the back—, two of them are like training wheels— because with my arthritis, I don't have the strength to hold the bike up. Most of my pain is in my lower body: my ankles, my feet, and hips. The motorcycle is easier for me to drive than a car because I can use my arms and wrists to drive it.
I decided to take off about two weeks after I got my bike. I knew the day I was leaving and the day I was coming home and the order of the states I would travel through. I was on the road for three months and traveled across 48 states. I never knew where I was going to stop, and I often stayed in small towns.
I talked with people and spread the word about chronic pain and how people can get help. I am working with a production company that is helping me by filming people who are suffering from pain. I call the cause PURPAL, People United Relieving Painful American Lives.
About halfway through my journey last year, I hit the Medicare "doughnut hole". I quit taking Humira and my pain got really bad this winter when I got back to the snow and the cold.
I began taking the medication again in January and could tell a difference immediately. I take a shot every week (my doctor recently upped my dosage) and they are about $900 each. I have taken six shots so far this year and hit the "doughnut hole" in early February already. But I got a present the other day. The HealthWell Foundation, a nonprofit that helps people pay their medical bills, told me they will cover $2,800 of my prescriptions. And with the new health-care reform, my Medicare Part D will cover 50%, too.
So, this year I will do a lot more. I'm planning on going out again too. I'd like to bike to the NPF [National Psoriasis Foundation] meeting in D.C. in June. Im hoping to find a sponsor this time around; I didn't have one last time. It was all me, to prove to others— (and, most importantly, to myself—) that it could be done.
As told to Tammy Worth