A New Year, A New Beginning

January 4, 2018

It's hard to imagine a more busy, amazing, crazy fun year than 2017.  To paraphrase my New Year's Facebook post, "in 2017, it was pretty awesome to be me"!  Who knew being disabled would be so time consuming???  I got pretty deep into being n NPF One to One Mentor this year, and have found it to be incredibly rewarding, and where I have met some really awesome new friends; I held my first ever fundraiser, and it was a success!!! (My next fundraiser is next month, so I will be more obsessed by the day about that!!) I traveled to Washington DC as part of the NPF's Congressional Fly-In, where we visited the offices of our members of Congress to speak about living with psoriatic disease, as well as the horrors of step therapy.  I made some incredible friends those few days, learned a lot, spent what I think was the coldest 10 minutes of my life and found out how to tell the difference between a DC cab and a Virginia cab (LOL--that was definitely a "you had to be there moment!)". 

 

 

I learned that I had been named a finalist for the NPF Outstanding Volunteer Award, and made my first psoriatic disease video. How awesome is that?  During this time, I also managed to fail 2 biologics, but who is counting???  Being stuck in Florida during one spectacular biologic failure, I found that aloe doesn't work for me, either, adding to the long, long LONG list of things that don't work for me.

 

My husband and I renewed our wedding vows this year, surrounded by and officiated by some of our very favorite people on the planet.  It was an awesome week, and a great lead up to the NPF National Volunteer Conference.  Now THAT was an amazing experience!!!  Met up with some of my new fellow Psoriatics from the FDA and DC, and finally met so many  people that I had been talking to forever, but had never met in person.  There is something indescribably incredible about sitting and talking to people who "get" you, who don't care if you scratch and who laugh when they tell you to "put some lotion on it".  I met researchers, medical professionals, scientists, film makers, medicine men, my pso bro's and psoul psisters, and most of all, people.  My people.  People who are my version of "normal".  Just like everybody else, except our immune systems beat the stuffing out of us.  Nobody was a stranger, only a friend whose name we hadn't exchanged yet.  And it was fabulous.  My stomach hurt for days from laughing so much.  My husband was astounded at how much fun he had, and how much fun it can be to hang with a bunch of flakey people left to their own devices in a hotel for a weekend! We even got to hang out in the private lounge at the lobby bar, hopefully because they liked us a lot, and not because we were partying like it was 1999!  I made lifelong friends that weekend.  We have a lot of inside jokes, a lot in common, just an amazing bond, really.  I can't even begin to list people, so I'm just going to say that my Pfellow Psoriatic's rock my socks!  :)  I won an award for my fundraiser, which was awesome.  A very, very worthy and amazing volunteer won the Outstanding Volunteer Award, and she is, indeed outstanding.  She and I got the chance to spend some time together in the fall at a patient engagement event.  Where I met even MORE amazing people, and made even more amazing memories!  I'm not convinced this past year can be topped!  And to top it off, I joined Clara Health's Breakthrough Crew, PsoPstrong, met Crack Up Charlie, started a Facebook Group and a website, and...well, here we are!  And a fine, fabulous and fun ride 2017 has been!

 

So, yeah, I failed a biologic or 2 (well, 3), bringing my grand total to 6, endured countless injections, epidurals and steroid injections and even spent 3 nights in the hospital due to the ear infection from hell caused by an oral medication I had been on for over a year. Yes, I spent as much time in bed as I did out of it.  Of course I had my bad, terrible, frustrating and downright miserable days.  But when I look back on the last year, that is not what springs to mind.  What I think of is the people I met, the fun we had, the memories we made and the differences we made, for ourselves and for others. And it makes me feel damned proud of us all!  We are all pretty awesome, pretty amazing and, of course-pretty flakey!

 

 

 

 

 

 

 

 

 

 

 

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