Tag: @NPF

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! 

Advertisements

New medicine 4 me…. MediJuana

Having PsA is not easy. Being in constant pain really sucks. Having to ask my 13 year old daughter to open a can because i couldnt turn the opener at age 47 was something i couldnt do. I just could not do it. I mean here i am a grown man once strong as a horse now falling apart. It hurt. It hurt inside where no-one can see. It brought me to my knees.

To top this off i have 2 herniated discs in my lower back. This has caused my right thigh to go numb. Now and then it feels like someone just held ice cubes to my leg at other times i get a burning sensation, almost like someone held a lit cigar to my leg. I have actually jumped because of the pain.

Now…. add a ton of nights where i fall asleep only to wake in a couple hours and lie there the rest of the night (about 4 or 5 hours) then have to goto work. I am truly falling apart. Well this has got to stop……

I found out last year my neurologist now prescribes medical marijuana. My daughter and her partner both use it for their ailments with great success. I would like to try. So i got certified, and went to the dispensary. After speaking with the pharmacist i decided on 2 items to try.  I am pleased to say the sleeping is no longer an issue. Every night at bedtime, 2 or 3 hits on the vape and sleep comes quick. If i do wake up at 1am like before, i will try to get back to sleep, but if like before i cant get comfortable, or my back hurts that bad,  2 more puffs will do the trick. I have a spray for daytime use that doesnt give you the high so i may concentrate at the office. OMG… This is life changing. Next i need to bring my medicine list into my next appointment. Lets see if we can know a few pills off by replacing them with a little weed. Did you know its anti-inflammatory, kills pain, can be used for muscle spasms. Yes its got a LOT of uses, ill keep exploring , reading and let you know. Have questions? Please dont be afraid to ask. 🙂

Sweet dreams all…