Author: NPFjim


So… I went to the National Psoriasis Foundations Volunteer Conference in Chicago in early August. I had a great time met some new people, some that i had read/followed them online and renewed old friendships, i swear its amazing what happens when a team of volunteers gets together. We give each other ideas, and tons of incentive to keep going for the gold.

I had 2 classes one for the One to One mentor program which i have been a member of since 2009. The other was for the Psocial Ambassador program which was introduced only a couple years ago. Its getting better as the program matures, im sure that in 2 more years it should be polished nicely.

The meet and greet friday night is always fun as you walk through check the different vender booths and run into folks you met in the past or know them from online sources.

Then Saturday morning starts bright and early with breakfast then classes, which would you like to learn? Well what type of advocacy would you like? Are you political? Maybe you want to meet Patrick Stone and learn how to goto your state Capital, and try to get the laws changed in favor of the people instead of favoring insurance companies, or things like that. Its a great class, and Patrick is an awesome guy. Maybe you want to learn how to run a bingo night to bring in some money for the foundation. Well we have that too. They will teach you the fundamentals so you may get some ideas. Another awesome class i attended. Maybe the Citizen Pscientist in you wants some more information on the Microbiome. Yes i went there too. Maybe you want to hear Dr Lebwohl talk, yes he was there too. Maybe you were walking through the hallway and happened to catch Dr Nehal Mehta as he strolls through the hallway. Dr Mehta is a game changer as he discovered the inflammation in the body in Psoriasis patients. Then its off to dinner, because we had to be downstairs at 630am for the Chicago walk.

Unfortunately this is where i took a turn for the worse. Saturday night my feet swelled up like balloons. (Im on blood pressure medicine , plus being Psoriatic  i knew this was a possibility at anytime) It hurt to put my shoes on. I went home sunday, started coughing lightly, i thought this was the BP meds as sometimes it seems like a sinus drip from the meds, but it turned out to be an upper respiratory infection. It was bad i didnt sleep the next few days finally saw the doc and got treated. We also changed the BP meds and threw in a water pill. Well that flushed the system and now i have massive muscle spasms. They are so bad they are debilitating. If i get one i cant move very well just kinda fall down. This is really bad when driving. I called they doc who thought the water pill flushed out the potassium so lets try taking a pill and boom the cramp went away with 1 pill.

Fast forward one week, im getting some cramps back not sure what to do yet, as the doc did some extra tests and we are waiting for the results now.

So thats why its taken me 3 weeks to write about the conference etc, yes i have been to hell and back with this and still surviving. 🙂

Did you want to see pictures? Well just ask and ill post some.

This weekend ill be posting again this time becuase i saw a doctor last thursday and i would like to share the news with you all. All i am going to say is the comorbidities of Psoriasis Psuck. Have a beautiful night. I love you all.


dog days….

so i figured i needed to take some time off of work and relax, maybe re-arrange the furniture or cabinets or something. i picked the WRONG week to do it. It was 92 today and to top it off the central air is broke. my landlord had a guy come out look and steal some parts and his money and ran. so now he has another guy looking. well at least its cool outside under the tree on the deck with a nice iced tea in my hands. Or cold brew coffee. Its weird i never liked cold coffee i always threw it out, but this stuff is amazing. I started drinking it in the morning instead of hot coffee for the summer. Nice thing is the carafe is nicely priced @ amazon here . Im thinking of buying another as i started drinking more coffee. LOL

Last night i slept with Alice……

I have been told, by my ex, that i have sleep apnea. Yes she witnessed me stop breathing. She even heard a noise downstairs, tried to wake me up. Nothing. She punched me in the arm, nothing i was in fact dead to the world. This scared her. Here it is a couple years later and my blood pressure is climbing, i had a stress test, all is well. So now i will have the apnea test once im getting treatment for that maybe the pressure will lower etc. So… i bring Alice home. Alice is for people who have been seen at night to stop breathing, its just so the doctor can see for himself and properly diagnose.

So i return the device in the morning and i will get to see the doctor for a followup with the results. However i got a call today. Bad news she says. Alice only recorded for 7.5 minutes, i will have to take the device home and try again, damn!

In other news the epidural i got in february , because of my 2 herniated discs, has worn off, big time. this week i have been in serious pain, i have had some times where its been quite painful to just stand up. I took some tramadol, but its not helping. I left a message for the doctor hopefully he will respond tomorrow or i need to bother another doctor. A friend pointed me to a pain center, i may see if i can get in this weekend. If not i am off next week starting tuesday, another opinion cant hurt.

what do you think?


somedays you have yo ask WTH?
today is one of them days, yesterday was beautiful all was well today went nicely then…come home from the office, make dinner, try to do dishes ok back is hurting leg feels like its in the freezer? ok this is a new pain, nicer than the burning rod feeling of days past. i decide to stop dishes sit on the deck and have a nice cold tonic water, HA! you thought i was gonna say scotch didnt ya?
so i sit, maybe 20 minutes back is killing me. ok, inside sit on couch, ok pain starts to subside go get a scotch! ha! there ! i cant twist the top it feels like someones squeezing my fingers with pliers, forget this ok tramadol time. i havent had that pain in my fingers for 3, maybe 4 years now? maybe time to switch the NSAIDS? on current nsaids for about 2+ years thoughts? opinions?

Happy summer!!

As the summer comes in i start to feel so much better, much less joint pain, ahhhh AHHHHH!! OOOOWWWW!!! Damn let me start again out with the cold pain in the joint season, and in with the if its too hot im gonna have massive muscle spasms season. What the hell did i sign a pact with the devil or something? This is crazy. I remember a friend of mine who had an issue in the summer, he has MS. If it was too warm he couldn’t transfer from his chair to his seat in the car. If the a/c was on and it was cool enough inside he was fine otherwise boom. Me? If i overheat i get massive spasms. Last night was in my chest just at the bottom of the rib-cage. I sat on the bed laid down, and within seconds i was screaming rolling around in pain. I guess my next doctors appointment ill ask to see an orthopedic. For the past few years we thought this was from the cholesterol meds, maybe it is maybe its not. Since it comes and goes we cant be too sure.

On a brighter note i do feel better in other areas and my medicine is keeping my skin clear and my rheumy sees 0 inflammation. Im eating better, working out more and meditating a little more. I bought myself a hammock for fathers day and plan on using it ALOT for the 4th of July weekend/holiday.


why me?!

this is probably the first question we have all asked. its the 1st thing that comes to mind when one is diagnosed with a chronic illness. and then another, and sometimes another. why?

This came up in part @ Healthevoices17 , in the form of Why do i advocate? In short i advocate because i was lucky enough to have a life changing illness. yep we all agree on that. but we didnt chose the illness it chose us. i guess being the chosen ones we are strong enough to not only fight the disease but get up everyday and advocate for it. without us many people simply wouldnt have the information they do now. they would be buying snake oils, and herbs, going on special diets, all while pouring thier earnings into a huge hole in the internet that gives way to these people.

i am proud for what i do and for the special family of advocates that i have become part of.

i maybe in pain today or tomorrow but i dont let that stop me from writing, doing videos, replying on twitter, or sharing my feelings in person.



disclaimer :  Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.

Ive gone crazy….

Its been a couple weeks since HealtheVoices17. A few of us met up a day early and walked around Chicago, as its got to be the most beautiful city I have ever been in, and this was my 3rd time there number 4 is coming up in August, and i cant wait!.

We had lunch at the infamous yes we all had double Cheezborger, Cheezborger, Cheezborger.

For dinner we asked the locals who all pointed us to


i must say thank you, i loved this pie, sausage, cheese, tomato on a buttercrust, OMG!.

At the event we solidified our personal group “IknowPsO” had some teachings from Chicago Storylands own Scott Whitehair. Awesome class, made us think quite a bit. We are all storytellers and i think this class helped us grow in that respect.

The next couple days were extremely emotional, many hugs were given, more friendships were born and others matured. Its such an empowering event everyone spilling their hearts shedding their tears as to why we advocate. Everyone has a story to tell even the people who put the event together. They may not advocate, but EVERYONE has a story to tell. Everyone has someone in their family who has been stricken by a illness, many incurable, and thats why we advocate.

Personally when i was diagnosed with Psoriasis i was devastated. Why me? Well Healthevoices has told me why this disease chose me. Im big enough to stand up to it, and speak out against it so others wont feel so lonely and afraid as i did back in 2007. I didn’t chose to be an advocate it chose me. Psoriasis has tested my limits, with not sleeping for days on end and then when the Psoriatic Arthritis came into play the fatigue and pain that kept me in bed for so long.

Life has handed me many curveballs, and i keep on, keeping on. I promise not to give up.



disclaimer :  Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.


Its saturday already, tomorrow is easter so im going to see my grandson, that means driving for 4 hours. ouch. by the time i get there  i will be stiff as hell my hands, legs ankles , well you got the idea, im an arthritic guy. usually i need a day or so to recover but ill be back to work monday and tuesday then its off to Chicago! OMG! i cant wait for HealtheVoices17!! this is a truly awesome event, i had a great time last year and plan to have a better time this year. 🙂  i plan on learning a ton of stuff, and i want to get some more ideas. Are you going? do you know what this is?

Happy Saturday!

Lately i find myself relaxing and doing almost entirely nothing on Saturday, its quite fulfilling. You see, i work all week and im quite frazzled by the end of the week, Saturday morning il get up at 530-630, i normally get up at 530 anyway. ill watch some YouTube and catch up on my fav you-tubers , maybe ill putter around the kitchen put away clean dishes and stuff, have breakfast and now (about 10am)  ill sit on the couch, start to watch some educational videos, ill then wake up like 1 o’clock, shower make lunch and yes again sit on the couch. What a great way to recharge, collect my thoughts, come up with thoughts and ideas. On Sunday i put everything into motion again, get up vacuum, wash laundry, mop the floors clean, well you get the idea.

Most of the time this works for me, there are some days that i get up and dont feel like doing anything, thats the sad part about my disease you never know when the fatigue will knock you down.