Category: joint decisions

Matt Across America

Posted on by Grayson
photo of a road in the desert and Matt Iseman (with an exaggerated large head) stands wearing a suit in the left corner; the Joint Decisions logo is at top middle; a road sign has "October 4" on it with a stamp to its right featuring the FB Live symbol; at bottom is a green text box with white text and logos "Go to [FB Logo] @JointDecisionsRA" and below "[FB like symbol] to be notified when Matt goes live!"
If you’ve been paying attention to the Joint Decisions Facebook page this morning, you already know that there’s something exciting going on! If you missed it, though, head over and check out all the lives videos with Matt Iseman being posted today on Facebook and Instagram.
In case you missed it: Janssen Biotech, Inc. and Joint Decisions are launching Matt Across America – a photo contest to raise awareness and help people understand what infusion therapy for RA is like.
Over the next few months, cardboard versions of the amazing Matt Iseman will be traveling to infusion offices across America, and we’re encouraging people with RA to share photos of their infusion day (by taking a selfie with Matt’s cardboard likeness) to help patients connect with one another and see what getting an IV can really look like.
It can be scary. Before Matt started infusion therapy to treat his RA, he wasn’t sure what to expect – and he’s a doctor!
If you’re lucky enough to snag a cardboard cut-out, here’s what you do:
1. Post the selfie to Facebook and/or Instagram
2. Using #MattMeAndIV and #Contest
3. Tag @JointDecisionsRA to enter
At the end of the campaign, the lucky winner will get a meet-and-greet with Matt Iseman!
It’s days like these I actually am sad that I do a shot at home for my treatment.
Matt will be LIVE throughout the day today on Joint Decisions’ Facebook and Instagram pages, talking about his experience with RA. You can also learn more, print a “Matt” in case he’s not traveling to your infusion center, and see photos throughout his journey across America on the JD FB page.

 

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.

 

What I Be: Weird, Queer, Fat

Posted on by Grayson
I definitely need to write a post about the whole Joint Decisions Empowerment Summit. It will happen, I promise. First, though, I wanted to take some time and write about an amazing experience I had while there.
What I Be is a project by Steve Rosenfield that focuses on building security through insecurities. As Steve writes,

Subjects are putting their insecurities out in the open, and exposing a side of themselves that nobody has seen before. By stating “I am not my_____,” they are claiming that they do in fact struggle with these issues, but it does not define who they are as a person. They are not denying their insecurity, they are owning it. It is not aimed for people to say “You’re not fat,” or “You don’t have love handles.” It is to spread awareness on what people go through due to society’s paved roads. These are serious issues that some of us can live with, but most battle on a day to day basis.

Steve even has gotten some real life stars to participate, like one of my favorites Michael Franti. In fact, the project is actually named after one of Michael’s songs. The chorus is:

What I be, is what I be
What I be, is what I be
Well, well, well, movin on!
Well, well, well, movin on!
Do you love someone? Do you love somebody?
Love that one!

I tried to keep quiet in person about the Franti connection… But then, at one point, Steve jokingly offered to call Mike. I almost fainted!
It was empowering to simply hear about this project, but we were able to take part in it.
The title of my picture is “I am not my identity.”
I’ve always been mocked for my weight, something that is heavily connected to my illnesses. My weirdness is too, in combination with my neglectful/abuse-filled childhood.
The queer thing is new.
In early September, I started putting together thoughts I’ve had since my teenage years and realized that I am gender queer also known as gender fluid. What that means, in simple terms, is I don’t necessarily fall into the binary gender constructs of male or female. Some days, I feel more male and other days more female. Then there are days where I am simply just me, some gender that cannot be defined. I usually express these things in the way I dress.
I still use female pronouns like she/her/hers. There is no surgery associated with this. It is simply a way to describe how I feel as well as how I express myself via clothing, etc.
I have mentioned this a bit on Twitter, but this was kind of my ‘coming out’ moment. I’m proud to really be owning my identity and so grateful to the loved ones who have helped me figure out the things.
I’m proud of ‘what I be’ and to have participated in What I Be, too. You can see more of the Joint Decisions gang pics here.
 
PS: While Janssen paid for my travel to the Joint Decisions Empowerment Summit, all thoughts and opinions expressed here or on social media are my own… especially regarding how amazing people are.

 

#JointDecisions Chat Tuesday!

Posted on by Grayson
Don’t forget to join me and RheumaBlog Wren for the next Joint Decisions chat over on Twitter!
Twitter chats are among my favorite things. Not sure how to participate in one?
We generally list questions as Q# with # being replaced with the actual question number we’re putting up. To answer, the easiest thing is to start your tweet with A#, using the number associated with the question. You do also need to include To illustrate, an answer to “Q1: Please introduce yourself #jointdecisions” is “A1 I’m Kirsten and I have purple hair! #jointdecisions”.
Don’t say you’re me, though 🙂
The questions are brilliant and I wish I could share them with you now BUT you’ll just have to tune in on Tuesday, October 25 at 6 pm Eastern/5 pm Central/4 pm Mountain/3 pm Pacific.
You can click here to be taken to the live Twitter feed in order to participate.

 

I’m off to the 2016 Joint Decisions Empowerment Summit

Posted on by Grayson
I’m so excited to be heading to Philadelphia today for the Joint Decisions Empowerment Summit!
It’ll be my second time in Philly this year and I’m excited to share some of the brotherly-love-magic with my pals. I’m also incredibly excited about being able to meet up with some of my fellow patients and doing some really cool things.
Join us on Saturday, October 15th, for a LIVE Facebook chat with my pal Rhonda Waters.
While you’re at it, make sure you mark Tuesday, October 25th as a special day on your calendar, too! I will be co-hosting a Joint Decisions chat on Twitter about “Stretching Your Private Voice: Helping Yourself Cope with the Challenges of RA.” The chat runs from 6-7 PM Eastern.
You can always keep up with all Joint Decisions events here AND you can even subscribe to their mailing list!
 
PS: Janssen is paying for my travel expenses for the summit in addition to providing me compensation. All thoughts and opinions expressed here are my own!

 

Letting in a Caregiver on Your Chronic Illness Journey

Posted on by Grayson
I was a sophomore in college when I met my husband, T. I mentioned on our first date that I had “this arthritis thing” that made some days rough, but left it at that.
Us circa 2007
As time went on, T expressed more curiosity about my illness. I did not know much about it either, so I took to the Internet. First, I started blogging so that I could help T see what kinds of issues I was dealing with without talking directly to him. I didn’t have the best emotional support growing up so discussing a chronic illness was scary.
Describing my arthritis through writing removed some of the emotion from the situation. It also allowed T and me to develop ways to research medications and other issues on our own, but to then also come together to discuss once we both had an understanding of the issue at hand.
I refused to think of T as a caregiver for a long time. Even now, I hesitate. There can be such a negative connotation to that word. It implies some loss of dignity that doesn’t need to be there. Even if my husband occasionally has to help me walk to the bathroom or wash my hair, that doesn’t mean I am worth any less than him – and he’s not worth less than me. My husband has helped me understand diagnoses, find medications, take care of myself and accomplish my dreams. He takes on so much more at home when I cannot function as well. He pushes me to take care of myself and helps me get better care from my healthcare team.
If there is a better definition for a caregiver, I don’t know it.
 
Us at Crater Lake in 2010
 
Our relationship is unique in the fact that T has health issues of his own. We routinely find ourselves on a see-saw, switching from more balanced in health to ups and downs. The fact that we figured out how to talk about my health issues has helped us work on his as well.
It took a long time and a lot of work for both of us to get to the point where we started understanding my physical limits. For a long time, the biggest issue was that I wasn’t communicating my needs or pain to T. Without doing that, it made it hard to recall issues to bring up at medical appointments and more. I had to break the wall I had built initially so I wouldn’t scare him away, and it was the hardest thing I’ve ever had to do. There is a vulnerability inherent in sharing your intimate life with someone in such a way.
It’s easy to celebrate the successes with others, but harder to include them in the struggles.
The biggest turning point happened when I was still in college. We were driving somewhere and listening to 10,000 Maniacs. T searched for a song called Trouble Me and asked me to listen to it, saying that it reminded him of me:
Trouble, trouble me
Disturb me with all your cares and your worries
Trouble me
On the days when you feel spent
Why let your shoulders bend underneath this burden
When my back is sturdy and strong?
Trouble me 
I lost it and started crying. I was so used to having to cover up my illness issues to make other people feel comfortable.
Us at our wedding in August 2014
I know that I am incredibly fortunate to have such a supportive and helpful husband. T supports me wholly in managing my disease and treatments. He has a better memory than I do about my pain. We sit down before most rheumatologist appointments and discuss what has happened since my last communication with the clinic. We routinely look at medicine changes.
Heck, we do that with just about every healthcare provider I see. I always text him after appointments with the key points and then we discuss once we’re both at home. This helps me to remember the important things.
This post is especially timely as I’m wrapping up my last two weeks of working in my current position. I currently do not have another job lined up. I’m nervous, but also excited. See, leaving my job was T’s idea. I’ve been in a flare-up of my fibromyalgia and missing at least one day of work every two weeks if not every week. The strain of my illness activity along with immense stress at work has taken a toll on both my physical and mental health.
It was hurting me to keep pushing and it was hurting him to watch the cyclone of pain continuing to grow.
If I wasn’t sharing so much with him and allowing him to carry some of the weight of my illnesses, this would not have come up. By allowing him to share fully and wholly in my life, we’ve bettered ourselves as people and our relationship.
Another amazing wedding picture
We certainly laugh a lot more.
 
I have learned that it is okay to ask for help and be unable to do things instead of stubbornly trying and winding up in pain. 
I still choose how much information I share with him. Some days, it is because I know he is under stress or dealing with his own illness issues. Other days, it is because I don’t want to admit to myself how I am truly feeling. As long as we are both involved in what affects our quality of life as a couple, we do well.
This post is sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions.
 
Check out the Joint Decisions Facebook page to connect with others in the online RA community, and visit JointDecisions.com for RA resources and tools.