Category: conference

New York debrief

Posted on by Grayson
New York was SO COOL you guys.
I went for the ePharma Summit 2016 which was interesting. From what I’ve seen, we still need a lot of work on both sides to truly get patients and pharma talking.
One of my favorite things, though, was that my sister-in-law B moved to the area last fall. This gave us some time to hang out, watch Spice World, and drink boozy hot chocolate.
And go to the Disney store!
We went out for tasty pizza at Alba’s which I highly recommend, and then had brunch the next day at Igloo Cafe – again, highly recommend.
So much good food.
B’s boyfriend and I got nerdy over Hamilton which led to me buying Ron Chernow’s biography of Hamilton and another one of his on Washington.
You know you have hit the pinnacle of nerdiness when you geek out at brunch over Revolutionary and Civil War history with a grad student studying the same. I love it though.
We walked past the Rodgers Theatre and I had to take this picture. Hamilton tickets are sold out into next year already and those on StubHub were too outrageous for me to justify.
I tried to justify it in my head. I really did.
We did hit up Broadway, though, and saw On Your Feet!: The Story of Emilio and Gloria Estefan. I met the main star, Ana Villafañe last summer at the Juvenile Arthritis Conference where she discussed her Systemic JA battle.
NBD, definitely not freaking out
She has an amazing voice and a beautiful personality. I think she’s slightly younger than me but has definitely turned into an inspiration. She’s definitely a part of why I finally bought heels again.
B got freaked out when Elmo and company ran up on me. My heart took over and I had to snag a picture.
The fact that Elmo is Kelsey’s favorite and all that Marissa talks about are Elsa and minions totally had a lot to do with it, too.
I ate copious amounts of banana splits at my hotel, the Cambria Times Square. Awesome hotel, by the way, AND I got to enjoy this amazing view.
So pretty.

 

I was super glad to have won a mini-shopping spree at Torrid and was able to pick up some more fun, flirty, and professional clothes before I headed to New York.
I was also pretty excited to snag my first press pass and hang out with the fabulous Kristin Coppens during the summit.
Day one of the summit saw entrepreneurs sharing their applications and ideas for change. You can read about my favorites – Cohero Health, Curatio, and Self Care Catalysts – here.
I got hella comments as I walked to the summit hotel on day two, which was actually pretty fun.
Day three saw a bunch of us patients hanging out at the end which was definitely needed.
On Thursday, I had a major brain fart. I put this up on the door while I was packing up and getting ready after I started the coffee maker… only to turn around and notice that I had not put a cup under said coffee maker.
Genius indeed!
Of course, some of that could have been nerves because I got to hang out with the one and only Duff!
I reviewed her book Model Patient: My Life as an Incurable Wise-Ass back in 2013 and still love it.
I’m honestly still a little shell-shocked that she was willing to meet up and hang out with me for a while. Here’s an excerpt from my review:

I grew up thinking Duff (Karen’s nickname) was the coolest. She was the epitome of early 90s style, with her short hair and signature 90s outfits. She really was all over, from her movie roles to MTV to Revlon ads. She is one of the first models I remember, and she even admits that many people liked her as a model because she was beautiful, yes, but an achievable beautiful – normal girl beautiful instead of Cindy Crawford drop dead gorgeous. To find out that she deals, on a daily basis, with similar feelings and pains as I do was shocking to me.

I gotta tell you – my admiration for this woman just keeps growing. She is involved with a lot just for the joy of helping others but at the same time still feels punky and 90s. She’s focused on being real but also being grateful and kind.
Her hair is still amazing which also reminds me that I need to book a haircut.
I want to be like her even more now than I did when I was younger.
And then she told me I was her hero.
No, I’m definitely not crying right now writing this. It’s totally fine.
Seriously though, how many people get to meet someone they felt embodies the spirit of the decade they grew up in? And how many people get to really connect on a level that only us sick chicks can reach?
I’m obviously still fangirling. Anyway…
I met up with my SIL after that and we hit up some Times Square area shops before heading back to her place for a while. Then I made my way to the airport.
I was so tired by the time I got there that I decided I needed the damn wheelchair. The wheelchair attendant was the nicest guy ever.
We talked how Batman should be considerably darker in personality than he has been portrayed recently and how beautiful NYC is.
He also got me through security super fast and came back to move me when my flight gate had been changed.
The freaking sweetest guy ever. Attention Delta at La Guardia: pay this man more because he deserves it!
The morning after getting home, we headed to Minneapolis to watch the Wisconsin Badgers Women’s Hockey team kick Minnesota Gopher butt in the WCHA tournament. They lost in the second game of the Frozen Four yesterday, but damn it was a great season.
Two of my favorite players AND Bucky!
It was a busy, busy week. It was both frustrating and rewarding beyond belief.
The biggest thing that I learned was how much I love adventuring and how well I can manage myself. I grew up being told things like I would never be able to protect myself in a big city… which honestly made me scared of those cities.
I have realized through my travels, though, that I have navigated Washington, DC, San Francisco, and New York City on my own.
I have accomplished more in trips to those places than I was led to believe I was capable of.
And that’s pretty badass.
If you want to check out more of the posts I wrote for ePharma, you can do so below:

 

 

Healthevoices 2016

Posted on by Grayson
Healthevoices 2016 is happening in a month-ish!
I am incredibly excited to be able to attend this year along with several other AMAZING health activists and bloggers.
Look for fun information coming from my Twitter from April 15-17.
And if you’re in Chicago, give me a holler!
PS Janssen is paying for my travel expenses for the summit. All thoughts and opinions expressed here on my super-excitement are my own!

 

New York Bound!

Posted on by Grayson
This weekend, I’m hopping on a plane and making my way to New York City for the ePharma Summit!
By the way, check out the pieces I’ve written for them so far:

 

I’m excited for SO many reasons.
This is the first time I’m visiting NYC. My sister-in-law and her boy toy moved to NYC towards the end of 2015 and I miss her face.
PLUS we’re going to see SJIA fighter Ana Villafañe kick ass on BROADWAY.
ALSO fellow rheumatic disease person and all around hottie Chef Seamus Mullen has a restaurant in the area.
Courtesy of http://tertulianyc.com/
It’s fine if I swoon right?
Plus I get to meet and hang out with some of y’all! If you’re in the New York/Newark area and want to hang out, let me know! I’d love to meet you!
Ironically enough, finals are right after I get back from NYC… so if you don’t hear a lot from me in the next couple days over here, go over to the ePharma page!

 

What is #MedX doing in Wisconsin?

Posted on by Grayson

Don’t worry – I promise MedX will stay in sunny and amazing Northern Cali!

Since I’ve returned from MedX, I have presented information on and from the conference to people in quality, patient experience, and the docs I work with here at the University of Wisconsin.

The first presentation didn’t go as well as I had hoped just because I wasn’t prepared for some of the questions. On the other hand, I know I’ve made an ally in one person involved in patient experience due to her personal life living with a chronically ill partner. We commiserated on unkind doctors, lack of emotional support, and more. I even brought up #ChronicSex which she was pretty stoked about.

Side note: they’re hiring for her boss so if you’re interested, hit me up.

I’ve been asked to write something up for the healthcare wide internal communication here, which is pretty badass.

Perhaps the most rewarding thing was to speak to the docs I work with about all this. Very few of them knew previously how active I’ve been in health activism and, I think, it was refreshing for them to know they have patients on their side.

I discussed handing out resources for patients and brought up tags on social media that are well known and not always illness specific like #ChronicLife. I brought up connecting new patients with local chapters of national disease orgs like the Arthritis Foundation – something that seemed pretty well received by my local AF peeps and our docs. I even brought up this idea that came from my group in the Designing for Behavior Change workshop on some way to certify patients in their illness as well as mentoring/leadership so you always have a local patient that might be able to help others.

I’ve never seen a room so awestruck before over me as these docs I work with every day.

It was awesome.

The organization-wide stuff will take a while to get going, to push through, and it’ll take more allies. It seems, though, that my docs and the clinic managers really are embracing some of these ideas.

I can’t wait to see what the future brings.

The 2015 Juvenile Arthritis Conference

Posted on by Grayson

It seems like every conference or gathering I go to brings me new ideas and thoughts to raise more awareness of arthritis. The JA conference was no different.

Check in at the hotel was just a little bit busy, but that’s bound to happen when you have 1700+ people! 1100 of us were first-timers which is a big part of why they have the conference set up this way for next year…

How exciting is that?!

My first order of business was to run down and snag my swag bag before heading over to the young adult opening session.

The opening night dinner was the next event, and the last that I went to for the night even though there was a young adult networking session.

The opening dinner was great with plenty of gluten free foods. We heard from AF CEO Ann Palmer, JA conference chair for the year and SJIA mom Rochelle Lentini, and others. Probably my most favorite part of the night was when Ana Villafañe talked and performed for us.

One of the things that I loved about the whole conference was how much more of a focus on SJIA there seemed to be compared to past events. SJIA is rare, so I get that many may not feel it as prudent to discuss, but it was great. I say this because Ana has SJIA. Despite her illness issues, she’s debuting on BROADWAY in November in On Your Feet, a musical about Gloria Estefan and her family.

Instead of hitting the YA networking session, T and I hit the pool – something that surprisingly we hadn’t done all trip yet! It was a wonderful way to rest.

The next day started at nine with a panel of amazing people – Ana, Todd Peck (NASCAR driver), and juvenile/adult rheumatologist Dr. Sandra Pagnussat.

All three of these amazing people have fought hard to become who they are today. They each went through difficult periods in their lives and how they made it through.

One of the nice things about being in the YA category is that I could attend the sessions meant for parents and caregivers… even though they couldn’t attend our sessions. For the next few sessions of the day, I was able to pop out and enjoy some SJIA and very science-driven sessions.

The first session I attended was on diseases like SJIA that are autoinflammatory in nature instead of autoimmune. Perhaps the biggest thing I learned in this session was that adolescent boys are more likely to have one SJIA flare and be done with it. If you have five years or more of active disease, it’s likely you will deal with it the rest of your life. The good thing, though, is that less than 50% of cases have severe or life-threatening complications… how sad is that what slightly less than half is good news?

Dr. Elder also talked a bit about Macrophage Activation Syndrome, or MAS, and how it often isn’t recognized right away due to the many diseases it mimics like hepatitis. It’s estimated that about 10% of SJIA patients will have overt MAS but that 30-40% will have symptoms of MAS without it being full blown. She explained the difference between autoinflammatory and autoimmune, which I hope to cover in a later post.

Interleukin (IL) 1 Beta, which Ilaris and Kineret treat, is responsible for many of the systemic features including rash. It’s also the major cytokine responsible for septic shock, which is what Kineret was first developed to treat but it failed to do so. IL-6 is responsible for maintaining many of the arthritic features including later osteoporosis and growth retardation. IL-18 is responsible for MAS and can possibly be used as a biomarker for SJIA in the future.

Something interesting that I found was that, in theory, you’re not supposed to consider a diagnosis of SJIA if the patient or his/her immediate family members have psoriasis. This is supposed to be consider Psoriatic Arthritis. I was a little shocked honestly, as I have psoriasis and SJIA, but Dr. Elder explained that there are outliers and both can exist in one patient. It’s just more rare because of the autoinflammatory and autoimmune differences. You don’t often see a person who has issues in both their innate and adaptive immune systems.

Novartis, the company that makes Ilaris, was kind enough to host a SJIA lunch Friday. I ended up at a table with the Sloan family and the Burgos family… whose little guy kept flirting with me throughout the rest of the conference.

I’ve developed baby fever Rafael!

I also was able to meet Leah Bush and Amanda Hendrix, two SJIA moms that I just LOVE. Honestly they’re a big part of why I blog and it was so nice to be able to give them some hugs and say hey.

The lunch itself was great. They displayed some amazing pictures from the Picture Your Best Day with SJIA project and talked about the new Know SJIA website as a joint venture between Novartis and the Arthritis Foundation. The website has some great resources including this handy SJIA symptom tracker.

The next parental session I crashed was Genetics 101 with Dr. Troy Torgerson from Seattle. It was more focused on the autoimmune side than the autoinflammatory side, but was very interesting. One of my favorite quotes from this presentation was “we’re all mutants.” There was something so comforting in knowing all of our DNA is messed up in different ways, and to have a pediatric rheumatologist who is also an immunologist kind of say that this doesn’t make us that different.

With me being a big of a science nerd, I LOVED this presentation. It was nice that I knew about some of it beforehand because it helped me to grasp some of the other issues he discussed.

The next session was led by Shelly Baer, Robert Hernandez, and Kevin Purcell (founder of Arthritis Introspective) on self-esteem and body image – “I’m sexy and YOU know it!” It, like many of the other YA sessions, was really a forum to bring up issues we had. It was interesting sitting in there and really realizing how far I have come in the last two years on self love and self care. I had multiple things I liked about myself and others were struggling to find just one.

It both made me proud of myself and show compassion towards others. It’s so hard to live with this disease as a young person, dealing with societal ideals of beauty when we can’t meet them.

That night the young adults hung out by the pool and took some selfies!

And I actually wore my two piece in front of other people! AND GOT COMPLIMENTED!

It’s been a while.

The next morning started off with an awards session, followed by a conversation on the new partnership between the AF and CARRA (the childhood arthritis and rheumatology research alliance).

I was starting to feel a little beat so I had to take up a lot of room.

The cool thing about CARRA is that it started out as a group of pediatric rheumatologists and researchers coming together to see what they could do to help these sick kiddos. We have all these great drugs, but more are coming down the pipeline. The registry that CARRA has developed can help to track information better and utilize patient information, deidentified of course, to bring more change for the better.

It’s an amazing way to promote patient engagement in research, which is something we all should be interested in.

The most moving part of the morning opener was when Vincent Del Gaizo got up to speak about his involvement with CARRA as a parent of a SJIA patient. He discussed his son’s difficult case and the changes in how well he’s doing now.

The next awesome presentation was about relationships. We heard from Dr. P (from the opening YA panel), Jeremy and Renee Forsyth, and George and Joy Ross. We heard about their stories and then it, again, turned into a very open panel. We discussed topics like disclosure, where I brought up telling T on my first date and how he’s always seen it as a part of me, communication, and recommitting to each other daily.

During our lunch break, I stopped by the Novartis table to ask about Ilaris and the different patient assistance programs available. Apparently they will even help you fight to get the drug put on your insurance company’s formulary! How cool is that?

T and I enjoyed some food truck goodies and I headed off to the next session on transition.

I was a little disappointed in that I heard there were supposed to be several people on this panel, but at the end we only had two – Catherine Miney and Janet Hess, PhD, MPHS, CHES. Janet helped to standardize the transition to adulthood across the state of Florida, which I’m sure wasn’t easy to do!

It was a very open discussion, and I wound up contributing to a lot of the answers with new ideas on how to handle what some of these amazing people were dealing with.

After sharing information on some of the apps I enjoy like Arthritis Power, I headed up to my room. There was another session to go but I was just wiped out and I needed to rest. Theron and I took a short nap and then went out for some late night barbecue before working on packing up.

In the morning we stopped by the walk & jungle bell run expo, where we ran into some of my favorite people like Tory who runs Mariah’s Movers. Then I ran into AF CEO Ann Palmer…

I bugged her for a minute to thank her for the change she’s brought to the organization because, honestly, this was a lot better than I thought it would be. Apparently she’s heard of me? Yikes!

We headed over to the hope tree next where we saw some of the cutest hopes, and I put up my own that no one else would have to lose a loved one to JA.

The YA program did their wrap up.

And then we heard from Joy Ross at the general closing.

They announced my friend Colleen Ryan as the next conference host and that we’d have TWO to look forward to!

The conference itself was so amazing. There were so many different sessions to chose from. The hotel was perfect, though sometimes the signage could’ve been better. The food was great and gluten-free friendly. The people I met were amazing and the changes on the way will make the AF into what I’ve felt I wanted it to be, at least for the young adults – a way to shape us into advocacy leaders, a way to get us more involved, and a way to shine despite our illnesses.

My time in Florida was already amazing, from meeting my friend Emily to finally going to Harry Potter world to enjoyed feeding giraffes at Busch Gardens to sitting on the beach and relaxing. I didn’t have time to hit up Disney, but that just means I’ll be back Florida. You better be ready for me!

There are SO many more recaps out there, including the official AF ones. You can also snag presentations and materials from the conference here.

Wanna see me live-tweet at a conference? You can! Join me on my MedX journey Sept 24-27! I’ll be live tweeting the whole time so hit me up@kirstie_schultz, catch the live streams at the Medicine X website, and join in the conversations using the tag #MedX.

 

T minus 37 days and counting to #MedX

Posted on by Grayson
(I’ve been watching a lot of From the Earth to the Moon. Since the tagline for MedX in the past has been about igniting change, I figured a countdown-themed post would be awesome, so put on your helmet and strap in for a ride!)

 

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In 2013, I vaguely remember hearing that Britt ‘Hurt Blogger‘ Johnson had gotten involved in this weird thing called MedX.

I didn’t really know what it was, but as time went by, I learned more and more about it, including that there were some awesome people attending with great ideas towards changing the future of healthcare.

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In 2014, I wound up with a flare the weekend MedX happened, allowing me to basically fully participate in the online portions of the conference. I had already taken a MOOC via Stanford on patient engagement and was excited to catch any part of the conference I could. Thanks to my flare, I was able to watch some of my favorite people and friends give amazing talks about their experiences with illness and issues that need to be resolved.

8

As I watched the live stream and participated in the twitter feed, I was able to really see the goal of MedX firsthand – to bring all stakeholders in healthcare together to make changes for the better. I was able to see the passion that everyone had for these changes, and it helped to reignite my spark which had been lost in the day-to-day health issues.

See, in 2012, my close friend Laura of Still’s Life passed away due to our shared disease. I also had recently had to change jobs and stop graduate school due to my illnesses. I had become engaged and so I threw everything positive I had into wedding planning to ignore my depression.

It wasn’t the best idea but my wedding in August of 2014 turned out awesome, so all’s well that ends well!

With the wedding out of the way and all this extra time on my hands, watching the live stream was exactly what I needed. It threw me head first back into the advocacy world with more excitement and ambitions for the future than before.

7

I decided to apply to attend MedX in person – and I got selected! I got the news over Thanksgiving weekend – and on the same day I heard about my new job – all while spending my first holiday with my father’s family.

It was intense.

6

This point in a NASA countdown explains my life right now:

Just prior to this moment, if everything is functioning as it should, the command will be given to start the space shuttle’s main engines. Beginning at the T-minus 6 second mark, each of the three main engines will be ignited and roar to life.

When I was selected to go, I ramped up everything I was doing in my life to focus on one goal – changing the future of healthcare. I attended other conferences this year, started a new administration job in pediatrics, and will start school shortly to work towards my MS in health care administration with a goal of being a patient advocate due to my focus on advocacy and navigation in the health care system.

And I have my new CreakyJoints blog on sex and relationships.

I’m really getting around, pun intended.

5

I was a little nervous about going to MedX. I’ve worked really hard in the last seven years on advocacy and awareness, but am I ready for this? I mean, getting to meet a ton of people I look up to all at once could be a little overwhelming. Luckily, I was able to meeting Britt and Kenzie at the Arthritis Introspective National Gathering in May. And then I was able to head to the JA conference in July. I didn’t meet any MedXers there, but I learned a little more about myself as far as why I keep fighting.

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I physically have everything I need for MedX now – a better carry-on bag, all sorts of braces and wraps, and some nicer clothes so I look professional. My flight is booked, with some time set aside to spend with my sister. I’m ready for some comfy weather and that Cali sun.

Mentally I’m still not sure I’m prepared.

3

At five weeks out, I’ve started to look at my schedule which is tricky. What in the world am I going to do about all these amazing sessions?

I have a time turner on my keys, but I’m sadly unsure that it’ll work.

2

A while back I was questioning the validity of having me attend this conference. How in the world am I possibly qualified? Am I enough of a patient? Am I well enough to attend?

Seeing all the steps I’ve taken in the last two years to improve not only my life but the lives of others, I think that feeling has dissipated… especially since my new biologic has killed my brain fog. I feel like I have my life together, and that’s awesome.

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What am I most looking forward to at MedX? It’s hard to put into words.

I’m ready to bring back information for the doctors I work with, just as the head of our department is excited to hear about it. They could use some of the information for sure.

I’m excited to bring back information to my new rheumatologist, who is beyond stoked that I’m going. She’s super into patient engagement and shared-decision making, and I love her.

I’m happy I can reconnect with people I’ve met in person like Britt and Kenzie, and to meet others I’ve interacted with before but not yet met.

I’m ready to sit and learn and share information non-stop for days. If I could do this type of thing all day every day, I would.

I think that most of all, though, I’m ready to be with my people, my tribe. As a rare disease patient who didn’t receive medical care growing up despite several illnesses, I have a unique perspective on things. My combination of physical and mental issues don’t always make things easy. I think, though, that MedX will provide me another ‘home’ – just like the one I’ve found with AI. To me, they’re almost two sides of the same coin. AI focuses on living the best life we can right now and MedX focuses on changing things to make that easier and better.

I’m ready to sit in a room with other patients and be treated like my opinion matters, like I am an expert on a part of health care. The acknowledgment that patients matter to health care and that our input matters? It’s an amazing thing.

I’m excited to go be a part of it.

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The solid rocket boosters will be ignited, and the bolts that have secured the shuttle to the ground in the last six seconds of the countdown are explosively released, allowing the orbiter to rocket into the sky. Once this happens, we have liftoff!

Well, in late September at least 🙂

I hope that you’ll join me on my MedX journey! I’ll be live tweeting the whole time so hit me up @kirstie_schultz, catch the live streams, and join in the conversations using the tag #MedX.

 

Best.weekend.ever

Posted on by Grayson

Wait, we need some reading music.

Side note: you so need to check out Saints of Valory even if you don’t listen to this playlist. I’ve had the pleasure of seeing them in person, and definitely need to again.

This weekend was a long time coming. It was everything I could’ve asked for and more.

The peace I feel now as I come back to work and back to the things I love to do is incredible. I’m finally seeing myself doing things I’ve always dreamed about – and along with them come new opportunities. I think a big part of it has been my change to looking at the positive more often. Don’t get me wrong – I’m still a realist. However, I’m not using that or anything else in my life as an excuse to be sad or grumpy or angry with the world anymore.

I’m done letting other people or fears or pain run my life, and it feels amazing.

I also got to eat some of the most delicious turkey I’ve ever had in my life. Next year, smoke your turkey and pair it with a nice cabernet sauvignon.

Friday, I was offered a new job – one that allows me to assist the director of the pediatrics division in bringing technology into the division in addition to helping keep things patient centered. I’m waiting on a few things to be finalized there, but I’ll hopefully get started before the end of the year.

In the midst of playing Cards Against Humanity with my family, I also got the email that I’ve been selected as one of Medicine X‘s 2015 ePatients! That means come September of next year, I get to spend a weekend out at Stanford telling y’all about all the amazing things being brought to the table at this coming together of designers, patients, and health care providers. I couldn’t be more excited to attend in person this year and to meet some of the amazing people who have been so influential in me finding my voice, getting care, and making changes for the better.

This year has been fantastic, but I know this next year will be even better.

 

2014 Arthritis Advocacy Summit Recap

Posted on by Grayson

I’ve really fallen quite behind again in posting things, but the craziness has (kinda?) died down a little bit. Count on some more regular postings soon 🙂

For weeks, I had been on edge. I had neither traveled on my own before nor been to DC. As someone living with a type of autoimmune arthritis, this frightened me to no end. I knew that I would be around others advocating for the same causes, but would I be able to do all this running around? Would I be able to complete my tasks for each day, and still have enough spoons to participate in dinner or other activities? I was concerned, and questioning my ability to go and do these things. In the end, I ended up going – and I can’t even express how glad I am that I was able to go.

When I arrived on Monday, my first order of business after checking in was to attend a lecture on arthritis research given by Dr. John O’Shea of NIAMS. He discussed a lot, but focused on the advances in technology and how they make all the difference. He also spoke about the JAK inhibitors, like Xeljanz, that he has helped to develop through his research. It was an amazing way to start out the summit. I would be lying if I said I didn’t get teary-eyed during his lecture or the Q&A portion towards the end. These new treatments mean that we can help to treat those for whom other drugs didn’t work. It means that we have new avenues to explore, new weapons to launch and to research in the future. It also means that, hopefully, the number of people I know of every year who die from complications related to their arthritis will go down.

Later in the evening, we had our orientation meetings. As a first-timer, I sat in on the beginner’s section, where Laurie Markle and Michelle Guadalupe walked us through the issues, how to talk to politicians, and more. As an Arthritis Ambassador, it was great to get to learn more about these integral staff members of the foundation and to get to meet them, as I often hear their voices on calls or receive emails from them. It was also a little bittersweet, as Laurie moved to Zambia Thursday after the summit wrapped up. She has done a lot to help push a number of bills through through her work both with the summit and the ambassador program.

I was able to meet up with another person dealing with Still’s for dinner. It was great to be able to really connect after spending much time discussing the issues we face together. It added another layer to the idea of this summit – that I’m not alone, and I’m not the only one who will fight with everything I have to get us to a cure.

There was also a teen meet and greet that I was pretty tempted to crash to be honest. Growing up with this disease is isolating and it’s fantastic when you can be around younger people who share your pains as well as your zeal for advocacy. I figured in the end, though, that this 20-something should probably get some rest.

Tuesday was a very long day for us, jam packed schedule-wise. We hit breakfast bright and early with our state coordinators and others before moving into another room to hear from our new CEO and president Ann M. Palmer. It was refreshing to hear from her, and to see her interact with others during some of the downtime. Dan McGowan, chair of the Board of Directors, introduced her and started off the summit right by stating that the advocates were the “special forces of the arthritis population.” We heard from Congressman David B. McKinley (R-WV), who was given the 2013 Congressional Advocacy Leadership Award for his dedication to our causes. It was inspiring to listen to his views on helping others, especially as he talked about his personal struggles with hearing issues and how he wasn’t here to make a career in politics but to institute change. At one point, he stated “Many of you out there can’t vote for me, but I can vote for you.” It was enough to leave this gal teary-eyed.

 

We also were able to hear a lot from Christopher Kush, who is the MPP of Soapbox Consulting, on how to better get our messages more clearly to our representatives. He brought in several people to represent the asks we were going to discuss, including Beth – a young girl living with the same disease I face and also dealing with access to treatment issues.

 

Since my state had a small delegation, we separated for lunch and met up to catch our bus up to the senate meetings later in the day. We met with legislative assistants for Wisconsin’s senators, then headed back to the hotel. At this point in the day, my body was tired, so having a few moments to slather my joints in BioFreeze and take a bath was great.

At dinner, we celebrated several activists working hard for change as well as the most involved in the Arthritis Ambassador program. We then heard from Brian Teacher, 1980 Australian Open Singles Champion. After some networking, I went upstairs to get packed and rest up for Wednesday.

We met early for a boxed breakfast before our first meeting over at the House offices at 9:30 and did our drop offs – where we ran into this amazing setting for a picture.

 

Our next appointment was at 1 and some of the members of my delegation had to leave due to travel schedules. In between my meetings, I explored the surrounding area, taking in the Supreme Court and the grounds of the Capitol. I was hoping I might get to snag a picture of my Joey B, but alas all I saw in the immediate area were guys and gals with big big guns.

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For my meeting at 1, I met with the representative for my district, Mark Pocan. We met in September to discuss HR 1827, and he became a cosponsor of that, and HR 460, shortly thereafter. I’m incredibly grateful for the support that he and his predecessor (now-Senator Tammy Baldwin) continue to give the Arthritis Foundation.

 

I took some time to visit the Folger Shakespeare Library, which was fantastic. Coming back, I had an awfully hard time catching a cab, so I walked from the Capitol Building to the Washington Monument – a whopping 16 blocks!! I was definitely sore! I caught the metro (which I love btw) to a friend’s house, and it was really great spending time with her.

All in all, during the three days I was at the summit I walked about 30 miles – 12 alone on Wednesday. I met with two representatives and the legislative assistants to our two senators. I met up with and ran into friends and others I admire, and met new people with whom I hope to keep in touch. I learned more about innovative research and more about how each state is affected by this umbrella of diseases. I laughed and cried listening to these stories, to stories that are similar to mine. I’ve known for some time that I am not alone in what I live with, but to truly interact with people on this level really hammered it home for me. I learned more about myself through these interactions, traveling alone, and visiting awe-inspiring sites. Perhaps most importantly, this trip cemented what I’ve known all my life. It also gave me a sense of self – I know now that I can be self-sufficient in a way that I’ve not really experienced on a big scale before. Honestly, and this might make me sound full of myself, I walked away being proud that I was able to do so much.

I grew up with dreams of working at the UN and solving the world peace issue, only to have those unfortunately crushed due to my worsening condition forcing me to drop out of graduate school. For a long time, I was depressed. My whole life I focused on this career that was now out of reach. When I joined the Arthritis Ambassador program, I thought that it would help heal some of that pain by giving me a little piece of that dream. This summit allowed me to both experience even more of that dream, and really lit a fire in my soul to step up and truly be an ambassador. It has given me more contacts, more stories to share, more people to lean on and ask for help.

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