From December 2012 – August 2013 I definitely experienced some of the darkest days of my life. I had to spend the majority of my time in bed because I was so inflamed, my body was so angry at me, and I was in so much pain. I couldn’t put any weight on my left leg at all so it made doing ANYTHING beyond exhausting. Not to mention the ridiculous anxiety and depression I was battling. It was really hard on me because not many people in my life understood what I was going through. I had moved back into my parents house full time, was sleeping in a bed in our basement and rarely left said basement because steps were just way too difficult. (Don’t worry, we have a super nice basement and basically have everything I could ever need down there!) I was moody, angry, sad, restless, and pretty much hating every aspect of life. Want to read some older posts about this time? Here are a few: 2012 The Beginning of this Madness, A Couch Ridden Football Season, A Dead What??… just to name a FEW
My computer and iPad really became my window to the outside world. As all my friends and family kept moving forward with their lives, I was stuck in one place and I really felt Iike I was digressing in life. Learning about the whole #spoonie community on Twitter and social media, I started to become very motivated and inspired by my peers in similar situations. It was through research and talking to these amazing patients that I started to dig myself out of the hole I had retreated into.
I was on vacation in Clearwater, Florida that July and was working through Lissa Rankin’s Mind Over Medicine book. It was during this trip (the trip where the picture that is my blog’s header was taken) that I decided to start my own blog to help others just as the amazing patients before me had done. I wanted to get my story out there, I wanted to get the resources and courses of treatments that I tried out there for others, I wanted to help others just as the ones who were already blogging were doing for me.
When I worked in IT, I always would tell my coworkers how much I wished I had a job in social media. I would pursue the job postings, but ultimately never acted upon them because the going rate was less than half of my salary. Being forced out on disability and deciding to get my story out there for the world to read, really brought my two interests into one. I started my blog and as time went on I really began to find my voice and audience.
My blog has brought me opportunities that never in a million years would I have thought about. I’ve partnered with amazing foundations and companies to help get the patient voice out there and I feel so passionate and alive when I’m doing this work.
About a year ago, Noe Baker from the National Psoriasis Foundation reached out to me to let me know that she was starting a blogger program at the NPF and really liked what I was doing. Noe is an amazing individual and over the past year has given me AWESOME opportunities to help other patients of psoriatic disease. The best thing she’s done for me though is she’s brought some of the most amazing people into my life who I’m so blessed and honored to call friends now. Friends who work for the NPF and friends who are thriving with psoriatic disease.
If Noe would have never reached out to me, if I would have never started my blog, if I had never endured some of the hardest and most painful moments of my life, I wouldn’t be where I am today. As I sat at the NPF Volunteer Conference and heard about all the amazing research and the amazing advocacy that is going on in this space, I was awestruck. When we think about the world, it can seem so big. That there’s no way that little old me or you could make a difference, but you know what… We can. The volunteers at this conference are just one person, but are doing extraordinary things to help raise awareness and support for others. The researchers at this conference are just one person, but may be an integral part of finding a key to start unlocking the mysteries of psoriatic disease (and all autoimmune disease to be honest!)
I learned a lot at this conference, but one of the most important things I learned from the NPF NVC 2015 was that we all have a voice and we can use that voice for good, we can use that voice for bad or we can keep our voice silent. I’m so proud of the work that the NPF is doing and helping fund and I’m SO proud of the ridiculously inspiring work my volunteer friends are doing.
I’m sure you’ll hear a lot more about the NPF NVC in many up coming posts, but I urge you to check out some of my friends blog posts about the conference. I love seeing other people’s perspectives of how they viewed the conference. There was some great content, fascinating research and way more than ‘surface level’ networking done during those 3 days.
My #PsoFamily
How can the NPF help you or how can you get involved?
They have so many activities and programs. Seriously, I can’t list them all because this post would be super, duper long. But here are 3 things that I’m very active in.
I’m happy to say that I’m a mentor in this is program. Any psoriatic disease patient, newly diagnosed or not, can reach out to a list of amazing mentors to have someone to speak one on one with. There is a list of mentors and bios you can read through for you to decide who you’d like to talk with. The wonderful thing is we’re all unique and have had very different journeys – there’s someone for everyone! Check it out here 🙂
Also, check out their Talk Psoriasis boards! There’s so much discussion that goes on over there.
Advocacy
There are SO many ways that you can help advocate for patient care and psoriatic disease. In years past things were more narrowly focused, but lately there’s really a push to help ALL patients. The NPF has partnered with many other patient foundations and has the same stance on many of the initiatives. For instance, I help advocate for the Arthritis Foundation as well. Every time I’ve done an AF event or a NPF event we’ve advocated for similar, if not the same, bills, policies, etc.
Not sure how to get started in advocacy? There’s a whole toolkit for that!!! Check it out here.
Social Media
The NPF has some pretty awesome people working on their social media platforms to help current patients, to help future patients and to help spread awareness. Check out their Facebook, Twitter and blog.
Annnnddddd they do some pretty cool stuff….
I’ve made a little video for their next activity that’s coming up for the month of August. August is psoriatic disease month and the NPF is hosting a 31 day wellness challenge. Since I’m not only a holistic health coach, but also a psoriatic arthritis patient, I’m going to be helping the NPF during this fun challenge and blogging on their NPF blog! Check out this video for some more details 😉
So recap:
– YOU can make a difference, you really can.
– Check out my #PsoFamily’s blogs
– Follow NPF on social media, check out their programs and get involved! Facebook, Twitter and blog.
Wishing You A Pain Free Day!
