Month: September 2019

Terrible Tuesday…..

Tuesday was absolutely horrible. Psoriatic Arthritis sucks.

Lets start at monday. I went to the office my fingers hurt a little. I put some pain cream on them and they felt a little better. Then came tuesday. they hurt. Pain cream. More cream. Pain pill. Then i put on my Arthritis glove just on the right hand. My middle and ring fingers were throbbing. All day long. I pushed my way through the day, trying to focus away from my hand but hey, i work on computers so yes that is my dominant hand stroking the mouse, click click, swipe swipe. It didn’t stop all day, i emailed my rheumy, he said next stop is the hand surgeon, i can get some cortisone shots, fair warning, it hurts like hell, i told him to sign me up, i now have an appointment on October 1st. Hurts like hell. Hmmm that sounds good, so it wont hurt as bad as it does now im thinking.

Well its friday now and the pain has gone down. Ill still see the surgeon, and possibly a hand therapist, as i found ring splints. https://www.arthritis.org/living-with-arthritis/pain-management/joint-protection/ring-splint.php

I’ll let you all know how i make out.

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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!