Tag: Psoriasis

Working From Home

Unless you’ve been living under a rock, you pretty much know that americas workforce is working from home minus the essential people. Medical staff, grocery stores, truckers, police, fire, i hope im not missing anyone if i am please forgive me, the rest of the people are being laid off or simply being paid to sit at home to try to stop the spread of Covid-19.

While i know this will help a bit i know it wont completely stop it as there are too many idiots who think they wont get it, its a cold or a conspiracy thing.

I know this isnt typically what i write about but hey its on my mind why not.. Ok enough of the intro and onto the show.

Monday: I setup my laptop at the kitchen table and had a beautiful view of the street and the farm across the street. The sun was shining in and felt, oh so good. Then the sun was shining on the table and i had to put a towel there as it was blinding. Next close the blinds. Not sure when it happened but i started getting a headache maybe from the sun… Later as the sun was overhead i could open everything back up. This setup didn’t work as my kitchen chair is wooden and uncomfortable to sit on for 8 hours. I threw a pillow on it, that helped a little but now enough.

Tuesday: I decided to use my mobile computer cart. I disconnected the desktop and connected my work laptop. I sat on my comfortable Ikea poang. This was much better but i had to sit forward or reach for the keyboard and mouse. Also im using a 32″ TV as a monitor and it was seriously bothering my eyes.

Wednesday: I setup the cart in front of the couch. Much much better. I noted that i may have to visit the office and pickup a monitor this is still bothering my eyes. I am comfortable on the couch, i put the heating pad on my lower back and yes this is better. BOOM! My computer crashed and rebooted. Whats this? The screen looks better? AH! Dummy i said, i need to start the laptop while connected so it picks up the proper resolution. Gotchya wont do that again. 🙂

Thursday: Feeling a little lazy and tired today. Im not going to closeup the couchbed ill just sit at the edge and work. At lunch i fixed it because my back started really hurting trying to sit up that long. Damn. Everything else is good and my headache is finally starting to subside.

Friday: Oh yes. I think i figured this all out everything is working well. Its been a very long week though. My migraine is gone, im comfy on the couch, and to add to it work has quieted down a little.

Friday evening I had some groceries ordered from an online service i use and they cancelled. I was really looking forward to the fresh fruit and veggies i get, so i looked and my local grocery store had a spot open up for pickup. I placed my order quickly. Why was i waiting for pickup/delivery spots? Because I am #immunocompromised and my life counts. #HighRiskCovid19 so I dare not take chances.

So ive actually been trying to order groceries online. they dont have any open slots for pickup or delivery. so since i use https://misfitsmarket.com heres a code if you want COOKWME-SY4GZN and https://imperfectfoods.com code: http://imprfct.us/v/jim_316 the 1st save you 25$ (i think) and the 2nd 10$ the 2nd has more options. These links will save us both money. Please if you are going to check them out do us both a favor.

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!