Tag: Psoriatic Arthritis

I was asked recently, Why do you volunteer?


This is a 2 part answer, and I would like to give a little background. First, in February 2007 I was then diagnosed with Psoriasis. I got a second opinion in 2009. It was around August or September. It was then that I googled Psoriasis and clicked on image search. Boy that scared the crap out of me, it was then that I read there is no cure, this is a lifetime thing, your life as been changed….

In that same search, I also saw ads for the National Psoriasis Foundation. Talk to a mentor, someone who has already been through what you are going through, and get a free book bag with a few items inside. Hmmm. A mentor I thought…. Yes, I would like that. I signed up, a mentor was assigned to me, and we talked, texted, emailed. I thought, wow this dude has had it for 20 years, he’s been covered with Psoriasis, has Psoriatic Arthritis. I’ve never been that bad, I felt better already. It also helped that he is in my state, is within a couple of years of my age! This is crazy.

About a year later they asked my mentor if he knew anyone who would be a good mentor, he gave my name. You see being in IT I know what to google, and I’m good at avoiding snake oils and separating fact from fiction, plus now I also have personal experience, almost 5 years of this uncomfortable disease. When the National Psoriasis Foundation called and asked I immediately said yes. I felt it was fair as I got a lot out of the program and felt I should give something back. Fair yes?

I then took the training and became a mentor. Some mentees were only there for the free book bag or whatever. I signed up and never replied to emails. Ok I understand, no problem, but then I got a couple of mentees thanking me for my help, telling me they felt better, this made me feel good. It is addictive actually. The feeling you get when someone says thanks, I feel better. Or thank you, you changed my life. Whoa. I can’t tell you how good that feels. The feeling never gets old. It feels awesome every time, and it doesn’t matter if you talk to someone for a minute or a month. You helped them, and that is what matters. 

This is now my life. If I’m not in the office I am wearing some kind of Psoriasis t-shirt and people will stop me and ask questions. I sometimes see doctors and tell them about the new medications coming out or other advances we have seen. Once while seeing my dermatologist I was joking, hurry doc I need my fix, give me that needle! He laughed and said he wished all patients were so willing to be on biologics. I asked for an explanation to which he said, people are afraid of the black box warnings (side effects, etc on the label). I handed him a couple of my business cards and said have them call me. 

Now if he feels that they need the biologic I can talk to them. Once again a month and a half after talking to someone I got a call, ‘DUDE! You changed my life! I went from 90% to almost clear!’ That totally made my day! 

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