Category: arthritis foundation

Conference Catch-up

Posted on by Grayson
There is so much from the last few months to catch up on!
After visiting Toronto earlier this year, I made my way to Phoenix, Arizona, for the Juvenile Arthritis Conference (West).
Being able to be around some of my favorite advocates is something that I truly love about attending these conferences… but to present? That was a whole new level of awesome.
I was so blessed to be able to present with my pals Mariah Leach and Jeremy Forsyth as well. Their dedication to helping others, being informative, and being silly matched me so well. Jeremy, for example, thought we could loosen everyone up by screaming sex in ridiculous ways before our session started.
It worked and that laughter was so contagious.
We definitely tried to copy that at the east JA Conference in Philly in August, where Keegan Stephen was our male expert.
These two groups of college-aged peeps with various types of arthritis were so engaged, so interested, and so in tune with wanting to learn everything they could about what we were saying. So many thoughtful questions came out of both the west and the east conferences. Over at Chronic Sex, Mariah and I will be going through the question cards and providing some answers within the next few months.
All of this gives me so much hope for what Chronic Sex can and will be able to accomplish. I am SO excited.
In September, I traveled back to California to present Chronic Sex at Stanford Medicine X.
I got to spend time with some of my favorite people like Dawn Gibson and Heather Corini Aspell. I also got to room with my pal Danielle Edges who FINALLY got to meet my sister.
I’M NOT CRYING YOU’RE CRYING. Seriously, this picture alone was worth my travels. My sister and Danielle have become close friends and we’re almost like triplets with time in between our births. It’s just too awesome.
Dawn spent a few days near where my sister lives with me and got to spend time playing auntie. I spent a couple of extra days and then headed down to Los Angeles for the Women in Pain conference… BUT not before meeting one of my favorite people in the world, Kate McCombs!
We had dinner the night before the conference and then spent basically the whole next day together, from the conference to just hanging out.
There are so many people in my life that mean so much to me, but meeting Kate in person is something that I cannot even put into words. We are so similar and so in-tune with each other, bringing out the most compassionate parts of ourselves to deal not only with our own illnesses but helping others as well.
I stayed an extra night to spend time on the Queen Mary because I have a ghost hunting problem… though I was so tired, I didn’t try this time!
In October, I was lucky enough to attend the Joint Decisions Empowerment Summit in Philadelphia.
One of my favorite parts of the whole experience was spending time doing the Bioexperience tour at Janssen! That alone needs its own blog post because it was absolutely fascinating to see how much pharmaceutical companies care about us – how we’re going to administer treatments, costs, protective measures, and more.
Well, and then I got to spend time with some of my absolute favorite people in the world from Janssen, Tonic, and us Joint Decisions/Creaky Joints peeps!
I got a new nickname from Kenzie, too: whimsical unicorn warrior.
It’s my absolute favorite thing ever.
I already have written about my experience at the summit with the What I Be project, so make sure to check that out, too.
And then it was back to New York, this time for a project with Healthline. A pharma company wanted to hear more about the patient (and patient advocate/activist) experience. I was lucky to hang out with some amazing people like Emily Lemiska and MarlaJan Wexler:
I had been jokingly looking at Hamilton ticket prices because I am obsessed with the play as we all know.
Turns out that it was just slightly less than my stipend to go see it alone while I was in New York so guess what I did?
I FUCKING SAW HAMILTON ON BROADWAY BITCHES.
It was so amazing. I cannot even fully put the experience into words. It was well worth the post-show in-flight migraine.
I had a big week last week, conference-wise and seeing Hamilton and more!
When I got back, I was able to do some podcasting, work on homework, and, you know, just casually meet my favorite person in the world – Joe Biden.
This picture was a big fucking deal y’all. YES.
Later this week, I’m headed back to New York – this time for a family vacation with T’s mom and stepdad to visit his sister and her dude who live in Queens. I am so excited to go travel where I’m not necessarily tweeting and such but able to be silly.
More conferences are on the way, though thankfully not until 2017. I’m ready to expand the work that I do and help others as much as I can.
Disclaimer time: the Arthritis Foundation, Stanford Medicine X, and Women in Pain all paid for my travels to and/or from their conferences. Janssen Pharmaceuticals paid for my travels to the Joint Decisions Empowerment Summit and provided perks while traveling. Healthline paid for my travel as well as providing me a stipend for my time in New York. All opinions here, though, are mine and mine alone.

 

A Recap of My Time as the Dane County Walk to Cure Arthritis Adult Honoree

Posted on by Grayson
I had SO much fun back on the 7th at the Dane County Walk to Cure Arthritis! Our team Puck Arthritis raised over $1100 to help other patients like me living with arthritis.
I had such a great time being the adult honoree and working with Hana Johnson at the Arthritis Foundation.
She hung out with me at WORT on the 2nd despite having been in a car accident earlier in the day to help talk about how arthritis affects people here in Wisconsin. You can take a listen to our hour-long segment here:
Hana is pretty much the best.
By Saturday, I was more than ready to dress up all hockey-like, so…
T and I dressed up in hockey jerseys and made this amazing sign:
Neither of us has drawing skills, so we are really proud of that! T drew and I colored in.
I especially love his goalie:
It’s beautiful.
I had to give a speech and I did not write one beforehand… but it actually went pretty dang well!
Gia, the youth honoree, and her mom are to my right.
I got a snazzy sign to put up in my office.
My team had a blast.
My stick had names of people with arthritis and I will have to take closer photos to share later on.
My friend Jill and her husband Gary even drove down from Minnesota to come walk with us!
Our friend Janice brought along her son Jesse along with his wife Sharon and their baby boy.
Sharon, by the way, was the captain of the 2006 Wisconsin Badger’s Women’s Hockey NCAA Championship team… So, basically, it was like the best day ever.
Once we got home, I finally SLEPT! My fatigue from the previous two weeks finally resulted in a three-hour nap.
I so needed it.
Thank you to those of you who came out, donated, or helped spread the word. You rock!

 

No Foolin’ – you can join me to kick arthritis right in the teeth

Posted on by Grayson
I have been chosen as the Adult Honoree for the Walk to Cure Arthritis – Dane County.
Thanks, NY Mag!
Being diagnosed as a child with arthritis is difficult. There are a lot of parts of life that are hard to fit in when you’re ill from school to religious institutions (if you’re so inclined) to work. One of the biggest things that has gotten me through all the ick has been sharing it all with you.
And doing cool thing because of it.
My arthritis and chronic pain have led to some pretty badass things, like heading to DC, Stanford, and NYC, so I won’t actively spend time hating it…
It still sucks, though.
As the Adult Honoree for this event, I am asking for your support. How can you help?

 

Not sure if you should? Lemme lend you a hand.
Arthritis is America’s #1 cause of disability
  • Arthritis impacts more than 50 million Americans (1 in 5 adults) and 300,000 children (1 in every 250).
    • In Wisconsin, the disease affects over 1 million residents, including 6,000 children.
  • Two-thirds of people with arthritis are under the age of 65.
  • Arthritis in children can cause eye inflammation and growth problems; it can also cause bones and joints to grow unevenly.
  • Each year, arthritis costs the U.S. economy more than $156 billion.

 

Arthritis is a serious health problem
  • There are more than 100 different forms of arthritis.
  • Arthritis limits physical activity more frequently than heart disease, cancer or diabetes.
  • Some forms of arthritis are autoimmune with inflammatory conditions that can affect the joints, muscles, eyes and internal organs.
  • Each year, arthritis results in nearly 10,000 deaths.
Thanks, SCV Arthritis & Autoimmune!

 

About the Walk to Cure Arthritis
  • The Arthritis Foundation’s Walk to Cure Arthritis is an annual, nationwide event that supports our mission of finding a cure and championing the fight against arthritis with life-changing information, advocacy, science, and community.
  • Funds raised through events nationwide support our work to speed up the timeline to a cure while also fighting for everyday victories.  Every dollar raised helps pave the way to a lifetime of better.
  • On Saturday, May 7th at Vilas Park in Madison, residents will participate in the Walk to Cure Arthritis and experience the power of standing together to fight arthritis and giving back to the community.
  • To learn more about the Walk to Cure Arthritis or to register, visit arthritiswalk.org.

 

 

Fight Arthur Hockey Style!

Posted on by Grayson
Do you ever feel like you want to just punch Arthur in the face? Give him a black eye and knock out his teeth, hockey style?
GUESS WHAT?!?
You can! Well, kinda, if you join or donate to my team ‘Puck Arthritis‘ for the upcoming Dane County Walk to Cure Arthritis happening May 7th!
Who knows – you might even end up on TV!
Okay, mostly, this is just a blog post to brag that we watched the amazing Wisconsin Women’s Hockey team beat the Minnesota Gophers in the WCHA tournament this weekend.
It was freaking awesome.

 

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.

 

A recap of Arthritis Introspective G8

Posted on by Grayson
These amazing women made my Memorial Day weekend fantastic. I can’t say enough about them, or the many men and women I met at G8. Like, I’m seriously having a really hard time writing this post.

In reality, we all have very real and frustrating fears. At the same time, we’ve been through so much that some of those seem to be worries more than fears. Either way, AI is a group that’s here to support us during those hard times and celebrate good times with us. That’s not something that I’ve

Friday night, I got to spend some time with amazing people including meeting Kevin, the founder and current president of AI. I spent a good amount of the entire weekend with my dear friend Melissa from 710.9. We also got to meet Joe Coe from Creaky Joints in person and he was even cooler than I thought.

Me, Joe, and Melissa Hicks

Saturday morning started off with a keynote from Angela Durazo on her illness journey, but not before Kevin discussed his journey creating AI and Britt led us in a mini meditation. She did this ALL weekend and I loved it.

Next, we attended Fit Aimee‘s talk entitled “Holistic Experience: One Woman’s Journey.”

 

She discussed her journey with adverse side effects from medications once she get treatment and how, through a more holistic lifestyle, she’s been much more fit and healthy. She did say, though, that she needs to seek out a new rheumatologist for returning and worsening pains. With what’s gone on with me lately, I know how hard that is.

Inspired by her talk and the comments made by others during it, I’m working on eating a bit healthier, trying to really avoid bad foods, and adding a few more vitamins and such into my daily pills.

Melissa and I got to have lunch with Joe Coe, Britt Johnson, and several others who are affiliated with Creaky Joints, which was just a blast.

We took an amazing group picture before the next session.

Because of Aimee, everyone was hitting the water hard. With my crip hands, I couldn’t get cups separated!

My new goal is to make crip hands a thing. Seriously.

Next up was a talk by Lucky from The Tool Shed, a feminist and sex positive store in the Milwaukee area, on Sex and Arthritis.

Lucky has lupus, and so she really spoke from the heart on a lot of these things. I appreciated that she was up front, frank, and threw in some jokes to ease us. It’s not an easy topic to discuss, especially if you’re struggling with sex.

The evening’s reception was at Who’s on Third, which was amazing! Before we headed out there, Melissa and I definitely needed a drink!

 

— 710.9 – Melissa (@710dot9) May 25, 2015

 

Time to relax at the #aisupport G8 conference. @ArthritisIntro pic.twitter.com/JHyEXdxzr4

— FitAimee (@fitaimee_ra) May 23, 2015

And, of course, duck face!

I’m doing a duck billed playpus a la Julia Roberts

Trip to the sex shop!

The guinea pigs were a little bummed that I kept leaving early and coming back later in the evening than normal, especially with daddy piggie (T) gone all weekend. They were not pleased with this picture more, though, because I did not have treats in my phone.

Jaq (brown) chittered at me as if to say ‘Mom, you’re an asshole.’

So they got treats.

I gave them snuggles too and headed out to Milwaukee, noticing as I was driving how crummy and achy I was. I figured it was just fibro pain because I *did* sneak a few very glutenous fried cheese curds at the reception…

I honestly spent most of the day sitting on the floor because of how crummy I felt. It was sad times.

Sunday morning began with a keynote from Mark Guimond from AF on Arthritis Advocacy. It was an interesting session, but not necessarily as compelling for those of us who are already involved with the AF’s eAdvocate or Ambassador programs.

After the talk, I  got to spend a few minutes with a very flarey Kenzie. We clearly needed to take a selfie to commemorate our awesomeness before she headed home.

I wound up SO involved with the next session that I didn’t even tweet. It was called ‘Loved ones – taking care of you first’ and was led by Jen Ziegler who is the program director at the Pacific Region AF and another amazing person I was so glad to meet. We focused a lot on self-care ideas, which is something I’ve been posting a lot about mostly because I’m finally working on that for myself.
Lunch was SO good. We had a nice salad, a tasty entree including mashed potatoes, and the gluten free dessert was this flourless cake/fudge deal. It looked (and I hope tasted) even better than the regular cake everyone got.

We had a raffle afterwards and I made out like a bandit – mostly because too many people at my table couldn’t fit or didn’t want to deal with taking their winnings on their plane rides home. I snagged a nice bracelet, a funky cool fabric necklace, and a pack of Partylite candles.

After lunch, it was totally time for the session I was most excited about – Social media: finding your tribe from the Hurt Blogger herself!

The cool thing about Britt’s session was how interactive it was and how helpful everyone was. I was really the only Reddit user in the room so I discussed how helpful it’s been for me, more for dealing with my childhood/family issues than illness issues, and the things you really have to watch out for there and on many other social networks.

I felt SO smart.

After Britt was done, a bunch of us had to take some awesome ‘good-bye, see you soon hopefully’ selfies! DUH!

Photobombs = awesome

Britt had to head out shortly into our carrot cake-filled send off, which was too bad. But it was great to talk with Kevin a little bit about how amazing the weekend was and how excited I was for next year.

I got to go to dinner with Melissa, her dude, and Joe from Creaky Joints, which was a hoot. I really had SO much fun. We talked about organizations, advocacy ideas, and random silly things. I dropped them back off at the hotel and started to head home.

I called my sister to check in with her. That’s a long drive to do by yourself so many days in a row you know? Plus I hadn’t had a chance to really talk with her most of the weekend and I was excited to hear how my niblings and her were doing.

And that brings me to Sunday night collapsing in my apartment.

And, also, the enjoyable experience of using the Liberator wedge I bought not for sexy times for but propping my knees up all day Monday.

I have a World’s Dumbest addiction…
Thankfully, T was back from hanging out with his dad by the time I got home Sunday and was able to help me shower Monday and such. I used to really dread asking for that help, but I think having this flare after AI has really helped to change that feeling. Here were strangers offering to introduce me to others or open up their rooms so I could nap if I needed to or share Biofreeze. They were so happy to lend a hand and be there for me – why should I feel guilty of asking the same of my loved ones?
Also also, watching Tom Hardy in Mad Mex really REALLY helped. I mean, who could feel bad looking at this face?
Bad example?
I stayed home from work on Wednesday. The upside of that was making it to therapy AND Spoonie Chat in one night! Thursday at work, I looked hella fly.

Friday it was too hot to think in my office, so ick. I had ice packs and braces going. It was great.

The interesting this is that this a flare that was worth it, and I don’t think I’ve had a lot of those. I had such an amazing time at AI whether that was with people like Britt or Melissa, who are established bloggers, or people really involved or others who are just at the beginning of their illness journey. The coming together of so many non-judgmental people was amazing. I’ve never experienced that and I want so much more of it.

This makes me even more excited for the Juvenile Arthritis Conference and Medicine X later this year because I know I will get to see some of these amazing faces there as well.

If you’re interested in reading more from the conference, you can follow the hashtag #aisupport (or just click that link!) or check out Melissa’s Storify! You can also visit the AI site here.

 

New rheumatologist = amazing

Posted on by Grayson
I’m feeling a bit like this handsome guy today. This morning was my appointment with my new rheumatologist. I’m happy to say that it went really well.
First of all, they actually had comfortable seating. I thought that was important to me before, but oh man the torn labrum makes it a necessity even more. They also had a wall full of pamphlets from the Arthritis Foundation on just about every autoimmune arthritis type.
The exam room was gorgeous. Two whole walls of windows and beautiful furnishings. The exam bed was an older one, but a really good one.
I spent a good bit of time in the exam room before my new doc came in, but I was okay with that since it gave me time to study up on my bones…
And them muscle butts.
Doc came in. She and I talked a bit about what was going on with me currently first – bad joints, rashes, Raynaud’s, etc. We went over what is hard for me to do – and what I really like to do but have a hard time with like cook or play with our piggies. I mentioned my situation growing up – didn’t mention abuse per se but mentioned neglect.
She asked how my anxiety and depression were doing, which was good but also caught me off guard. I hadn’t really thought about it. My anxiety is definitely getting better. The depression is still there in reality but far lesser than before. Mentally I feel like I’m in a good place.
Thank you serotonin!
We talked a bit about my frustrations with my current rheumy situation. I mentioned how frustrating it is to have a doc use step/fail first therapy and treating me for general JA instead of going right for the meds to help SJIA. She agreed and was frustrated for me. I went over a history of my meds.
We talked about how her office operates. It’s her, her nurse (whom she gives more duties than normal RNs), and her assistant – that’s it! No talking to 20 people to get an answer. No chances of my paperwork being lost – especially because she sits down and does it right away! Her medical philosophy is all about being a partner in care and getting you to YOUR goals. She’s very into engaged patients, which makes me so excited.
We discussed remission as the goal. It may not be possible – I’ll be real there – but I’m excited to try. She also brought up new ideas on when a drug is failing a patient (her words even!!). I went over drugs I would consider trying again like methotrexate and those I do not want to do again (ARAVA YOU JERK).
She gave me a nice and thorough physical exam, though she stayed away from checking ROM on my hips thank goodness.
Then her nurse came in and met with me as doc was filling out my FMLA paperwork. We talked about labs and resources they have like their amazing occupational therapy department.
I have labs at the end of next week and we can look at how to proceed. One of her goals is to get me off any meds I don’t need – part of the remission goal is testing that when things are better. I’ve already basically stopped taking my muscle relaxer each night. It helps but makes me so groggy that I have a hard time getting up. Instead I’ll only take them when my back or other muscular issues are acting up.
One of the reasons I like this doc, too, is that she is active with our local Arthritis Foundation chapter. I happened to meet with a couple of AF people today, too, to get an update on federal and state goals for the year. It was interesting and eye opening. I’m ready to do more with them on a local level, so having them touch base was nice.
They also told me that the Arthritis Introspective Conference this year is in Milwaukee, just a short drive away! I’m going to look at what I can do to be more involved there this year as well. So hey, come hang out!
You can’t see super well but all three piggies are in here!
Right now I’m ready for a night filled with delicious pizza and cute guinea pigs!

 

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.

Want to see more pics? Click here!

January So Far: 5k progress update, snowshoeing, activism, and Washington, DC

Posted on by Grayson

January has been crazy so far! We in the midwest started out the month with temps in some places even lower than -50 degrees Fahrenheit. Sometimes, it’s enough to make me wonder why I even live in Wisconsin! But then, I remember I have some of the best docs out there and that winter isn’t all bad.

picture of Kirsten in a Racing for the Cure sleeveless jersey

 

I started off the new year getting my racing jersey for the Arthritis National Research Foundation. In case you haven’t heard, I’ll be running a 5k on May 3rd in order to help raise money for this wonderful organization! Feeling generous? Donate here!

I was a little worried about how this whole 5k training would go, so I snagged the Zombies! 5k app for like $2. It’s amazing and I’m considering downloading their other running app once I’m through the 8 weeks of 5k training so I can keep it going. The app helps a ton, to the point where I went over 2.5 miles in just over 40 minutes non-stop on the elliptical at the gym. I seriously couldn’t believe it, so I had to document it (DUH).

picture of an elliptical machine with stats on activity

My goal is to do these workouts 3 days a week, but we want to be more active as a couple, so T and I bought snowshoes today! They’re super fun and a great workout.

picture of Kirsten's big feet in a pair of snowshoes

On the advocacy front, I have a lot of exciting things coming up. I was nominated for a couple of Wego Health Activism awards (thank you, you sneaky people – I love you!), and am excited to see how that will pan out. It really is an honor just to be nominated – and to be judging one of the categories as well! It should be a fantastic time 🙂

I recently joined Seth’s 50 State Network from the Global Healthy Living Foundation and Creaky Joints. Seth is actually the dude in charge over at CJ, in case you’re wondering. Advocacy Joe, who recently began regularly blogging for CJ, is really doing a great job of getting people involved in trying to affect legislation and really raise awareness about arthritic diseases. I’m incredibly excited for the things we have coming up this year, and for the push this network I know will give me to get my story and those of others out there. Joe recently wrote a piece I just love – and that fact that I’m part of it might have something to do with it, but I’ll just let you judge for yourself.

I’m very excited for the youth panel I’m doing with my local chapter of the Arthritis Foundation at the end of February on the transition to adulthood. My reading is going… Well, I have like 5 books to read still. I should probably get cracking on that…

I also got some AMAZING news earlier this week – I’m headed to DC in March to be a part of the Arthritis Foundation’s Advocacy Summit! I’ll be staying a few blocks away from the White House (AHHH!) and will have some downtime while I’m there on my lonesome. If you’d like to meet up, or have something fun and touristy you think I just HAVE to do, let me know!

What are some things you would like to see happen on the activism front?