World Psoriasis Day – October 29th

Today, Oct 29, 2014 is !

Join the National Psoriasis Foundation to help raise awareness of psoriasis in the U.S. w/the Challenge!  health.

Thanks to Ride with GPS and the National Psoriasis Foundation for creating the Team NPF Cycle Challenge, and for raising awareness of this chronic and unfortunately growing autoimmune disease.

As someone who has battled psoriasis for the past 30 plus years since I was 18 and the more debilitating condition of psoriatic arthritis for the last 12 years, I am grateful that there is more awareness being brought to the public regarding this chronic and painful disease. Having psoriasis and the accompanying arthritis has been a real challenge for me on the bike. Not only does this disease cost me the chronic  pain of aching joints, but it also brings fatigue, no matter how much rest or sleep I am able to get. It’s just another of the many side-effects of psoriasis.

Hopefully more research and development will be implemented in the coming years to fight and maybe even conquer this condition.

In the last 12 years since I have been diagnosed with psoriatic arthritis, the condition has accelerated and worsened during the past 3 years. Some days the pain is constant, a deep throbbing ache in my left shoulder, both hands, lower back, right hip and both knees. Though on very warm and hot days, the pain is almost unnoticeable. But those days are few and far between

Seasonal changes really affect me in negative way as well. Consequently, the areas of my affected skin are very sensitive to temperature changes. From Spring to Summer, it varies, some days it worse than others. Thought from Fall to Winter and the cold Winter months are the absolute worst. Both with the skin condition and my arthritis.

While there are various biologic drugs to treat the symptoms, Enbrel, Humira Infliximab and soon to be marketed Secukinumab they all come with severe side effects and that keeps me from using them, oh that and they cost thousands per injection. So my pain management consists of mainly topical lotion for my skin, Naproxen, Dicolofenac cream, heating pads and basically gritting it out for the arthritis. At best, these methods and substances only slightly relieve the pain, like most people who suffer from arthritis and chronic pain, you just learn to deal with it.

Funny thing is most people don’t seem to understand the very debilitating and degenerative affects of arthritis, both Rheumatoid and Psoriatic versions. literally only four people who are close to me understand the skin condition and the subsequent chronic pain. In fact most of the people I know, don’t take my condition seriously and that sometimes really annoys me. Especially when they say things like, oh you look good, you do all that biking, you must be in good shape. Then when I tell them I am in nearly constant pain, I get funny looks or they think I’m just complaining about nothing.

You’d think I was a healthy 49 year old male, but it’s complicated. Yeah, my heart is probably in decent shape, my BP is in a normal range and my resting  BPM is about 70. But my joints are deteriorating, which truthfully scares me. As arthritis is a degenerative disease and the damage done is NOT reversible. There is no doubt that at some point, my ability to ride will be extremely compromised. But I try not to focus too much on that and instead just enjoy the now, the time I do get to ride.

Though I often wonder what my cycling performances would be like without the arthritis, but eh, it is what it is! You know what is said about ifs and buts…lol. My motto is “Keep movin’ and hopefully forward”