WTH?

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?

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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 http://www.billygoattavern.com/ yes we all had double Cheezborger, Cheezborger, Cheezborger.

For dinner we asked the locals who all pointed us to https://www.loumalnatis.com/

IMG_20170420_204554

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.

OMG!

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.

beauty

i just read a post on facebook about a woman who is very beautiful, and yet when she looks in the mirror she thinks my teeth should be whiter or or or.

this reminded me that when i was a pre-teen i tried to copy what my friend Tom was drawing. He drew dragons. I LOVED it. i tried to copy it, he looked and said thats really good, i said no, looks nothing like yours, and i tore it up. this happened many times. finally i gave up. in my teens my buddy was painting scenes from a Yes album onto jeans and jackets, i would look at the album, look at the jacket and say move this line to here, i was right. he said you draw? i said no. in my 20s (24-27) in that era, i was bored one day and i was copying Darkwing Duck. My wife , at the time, walked in said what are you doing? I said drawing DW Duck. She said “trying to draw?” this irked me. i was so mad it took 4 hours but i did it, all those years i thought i could not draw, when in fact it was me holding me back, i was too critical too perfect. What i learned was that If you step back for a moment you an look past the little things, the minor flaws, and see the real beauty within.

I made it!!!!

So after he could breakfast some training at a nice healthy lunch we went to Capitol Hill to bang on some doors unfortunately because of the weather not many people were available actually we found none we did however drop off some packets and some handwritten notes asking for representatives to take a look and support our request asking for some money for the CDC.


After couple hours of that we decided it was time to take a little break so we went to the Smithsonian and checked out some aircraft.

Afterwards we settled down an had a good dinner. Next it’s bedtime as we have an even earlier start tomorrow. 

Alexandria, VA

So I got here to the hotel at about 540 last night. Since I had been travelling since noon  u I decided to eat in. Yep room service gotta love it. What do you get here? That’s right baby Chesapeake Bay crabcakes. Yum!

They even gave me an extra unsweetened tea free, good thing because 4 dollars for that little glass is highway robbery! Lol!

 It started to flurry a little the stopped. Now at 6am it looks like maybe 3 inches? But it sounds like sleet or hail out there.

I was told last night they’re expecting maybe 6 inches but they aren’t prepared for it. We shall see. Hopefully little to no travel today.