Category: creaky joints

Dungeons & Diagnoses

Posted on by Grayson
Have you ever wondered what Dungeons & Dragons would be like if it were a little more like real life where healing potions and quick fixes weren’t the norm?

 

Come check out Dungeons and Diagnoses, a 5th edition podcast with a twist from Global Healthy Living Foundation.

 

logo for dungeons and diagnoses

Our heroes explore the cast kingdom of Gaedia. A land filled with the same perils and monsters you may be familiar with as the traditional Dungeons and Dragons, but with Grumm, a Half-Orc Barbarian, Sailor, and Bard, who struggles with his half-bred heritage and its lingering effects on their body. Taakrand, an Aasimar Druid and Monk whose near-featureless form made their adoptive parents send them to train at a druidic monastery.

 

And then there’s me, Elrohir – a Wood Elf Ranger who transitioned into adulthood and was rejected by their Coven as a result. Think a trans version of Robin Williams’ Peter Pan in Hook and you’re pretty close to picturing El.

 

Will our heroes overcome the evil invasion of eldritch Nihil and its armies? Can they discover and cure what ails an elder Dragon before it’s too late? Tune in to find out and hear for yourself the mystical adventure of Dungeons and Diagnoses!

 

You can find the pod on the GHLF website or wherever you catch your pods!

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.

 

#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.

 

Have YOU joined Arthritis Power yet?

Posted on by Grayson

Arthritis Power is a great program from CreakyJoints, which you definitely need to join if you haven’t yet! Not only is my new sexytimes blog there, but it’s one of the largest arthritis communities out there.

What it may look like when you log in
AP allows you to track how you’re doing by asking you about pain interference, physical function, sleep disturbance, fatigue, and a general health assessment like you might complete in another tracking app or at your doctor’s office. This last part asks questions about dressing yourself, getting in and out of bed, washing and drying your body, and more. It also asks about anxiety or depression and emotional well being. It will then give you these handy reports that track over time how well you’re doing. You can see that, at the beginning of this month, I had a bump up in my pain.

All of these are minimized when you first get in there, though, and there is a nice color coding system to show where you’re doing okay and what might need attention.

That top one, my pain disturbance, needs attention. Hooray!

You can track your medications here as well which is nice. There’s even a great button to EMAIL the results, whether that’s to yourself, to your husband so he knows what’s up, or to your doctor. How great is that??

I did this a little backwards because I was so excited to share. You probably wouldn’t mind knowing who gets this data and how it’s used huh?

To steal a bit from Ol’ Abe, AP is “of the people, by the people, for the people.” What I mean by that is that this project involves patients in all aspects. There is a Patient Governor Group that helps identify research needs and prioritizes requests member of the program may have for what they’d like to see! This is also a part of the National Patient-Centered Outcomes Research Network and Patient-Centered Outcomes Research Institute that was created by the Affordable Care Act.

Data winds up being shared with researchers at various universities who are working on understanding musculoskeletal diseases like those associated with arthritis. It’s shared anonymously and is a way for us to be involved with research without the ability to be excluded due to medication use or other things like can happen with clinical trials and such.

What I love the most about this is that they’re soon releasing an app for iThings and Androids where you can track this on the go. This is great for me, because I don’t remember to log in as much as I used to…

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?