Reflections on A Wild Year

The past few years have been wild for all of us. The end of 2020 was difficult, hard, and frustrating. Because of that – and being so ridiculously busy at the time – I didn’t do my usual end-of-year post. With so much having changed for me this year, I wanted to make sure to do one this year.

reflections on a wild year

 

 

Wrapping Up 2020

November saw Arthur turn 27. I honestly don’t know that I would’ve ever thought I’d reach this point. The fact that I have is a testament to better education around SJIA and, of course, biologics. It’s interesting, though, as I know there is a whole new generation of aging juvenile arthritis patients. I think we’re going to see a whole new era of figuring out exactly what these conditions – and their treatments – do long-term.

At some point, I started to stream games on Twitch. I haven’t in a bit, but if you enjoy watching games, come follow! I hope to get back to it soon.

In December 2020, I had my lowest sed rate ever. After five and a half years on Kineret, I’m still surprised at how effective it is. Obviously, other things I do in life impact that number, too. I know that a lot of my lifestyle impact was less stress than I’d had in a while. It’s weird to say that when, a year later, we’re still in a pandemic… but it’s true. I had finished up a number of projects, but that’s not the only reasons for less stress.

Last September, I met someone on Taimi, a dating app specifically for LGBTQ+ folks. They lived in Ohio and I was in Wisconsin, so neither of us expected too much. As someone who hasn’t been great at long-distance relationships, though, I learned that having both people dedicated makes a huge difference. A month later, we were planning a weekend away together. After working in public health starting in April, I took multiple days off at the beginning of December to go meet my soulmate in the woods. We hiked and explored the city they’ve lived in for years. When it came time to come home, I hated every second of the 9-hour drive back.

 

2021

Towards the beginning of 2021, my friend Iris Zink released a book called Sex-Interrupted: Igniting Intimacy While Living With Illness or Disability. I wrote some of the appendices around LGBTQ+ folks. While I’m obviously biased, I adore this book so much.

January saw the CDC interviewing me and my colleagues around the work we were doing around type 2 diabetes prevention. On top of that, I got to join an amazing psychology collaborative focused on trans folks. I also got to give perhaps the most fun presentation ever for a Planned Parenthood conference.

Neurodiversity and sex for muggles - Grayson tapping a wand near a cup of soda; he is wearing a white button up shirt with a ravenclaw tie

Yes, I took a moment in the beginning to tell everyone JKR can kiss my trans ass.

Unfortunately, my partner’s father passed away shortly thereafter. I was able to take some time off work and go be with and meet the family during that time. While it was less than ideal, their mom really liked me. So did both of her dogs and my partner’s dogs.

Grayson is surrounded by four dogs on a bed and his hand can be seen petting one; his partner sits in a chair at a desk

In March, I got to edit one of Governor Evers’ proclamations. They didn’t keep all of my edits. That said, I pushed back on unnecessarily gendered language. Then, in June, Evers issued an Executive Order to require gender-neutral language.

I went to visit my partner for their birthday. We went to the Cincinnati Zoo, which meant I got to finally meet Fiona!

Grayson and Fiona the Hippo looking at each other

I also got my first COVID-19 vaccine.

In April, SheVibe turned me into a sex ed superhero. Like, you can literally get trading cards of me and a ton of my friends. Monica Lewinsky said I was super smart on Twitter. Oh! And I got my second Pfizer shot.

My birthday was actually the nicest one I’ve ever had. A ton of my friends hopped on a video call, meaning I got to introduce them all to each other. Some of us played virtual games, too. It was amazing.

May brought the 7th anniversary of the last day that I talked with my mother. Cutting contact with her was the scariest thing I’ve ever done… but it was also the most rewarding.

Also, I got probably the best haircut.

Gray sticks his tongue out; he has a fade and a short haircut with a small Prince-like swoop on one side

June brought me an official ADHD diagnosis and access to medication. It’s made managing my ADHD so much better. Fun fact: ADHD often gets worse for folks going through menopause and through puberty. When someone is transitioning and taking testosterone, they go through both at the same time.

It was an interesting year before the meds, but it made for good times in presenting on disability in the workspace for Thomas Jefferson University.

Picture of Gray, McGravin, and Hank and Dean with the doggos looking mostly at the camera

I also got to go with my partner, their mom, and their aunt up to upstate New York. I met the extended family, hiked up a mountain, and even kayaked for the first time!

Grayson sitting in a two-person kayak on the shore

Over the spring and summer, I began to play Dungeons and Dragons with friends as a part of an initiative from the Global Healthy Living Foundation. The Dungeons and Diagnoses podcast was a ridiculous amount of fun.

Also, despite never being someone who drew a lot, D&D helped me get a lot better at that. I tried to draw every time we played. Here’s a non-D&D drawing I did that wasn’t horrible:

drawing of a red panda

Earlier in the year, my partner adopted a red panda for me at the Columbus Zoo. We’d gone to see the pandas back in January, too, so it was extra special.

I went hiking a bunch in Madison over the summer, catching cool photos like this one.

Lone monarch butterfly on some purple ish flowers

In July, I had masculinizing top surgery. It almost killed me. Still, it was one of the best decisions I’ve ever made. Part of me knew I’d be okay in the end, because the date I was offered was Laura’s birthday.

Recovery sucked but I won a contest and got some goodies from one of my favorite Star Trek peeps.

By the time August rolled around, I had all of my things packed and moved to Ohio.

Hank lifting his face in front of Grav with Dean's face visible in the background

Needless to say, Hank and Dean were both ecstatic.

By the time Halloween rolled around, we were moving into our own house. I cannot believe this is my bathroom:

A claw foot tub by windows with sheer white curtains

In November, I got my COVID booster shot. I wrote up what it’s been like to be on testosterone for the last 21 months.

I also left my job in public health. As much as I loved it, there was a lot of stress involved due to issues outside of my team. I needed something that would give me more joy, fewer frazzled days, and lead to a little more calm in my life.

I recently started with a company called Included Health, where I work as a Care Coordinator for other LGBTQ+ folks.

 

Things I Did Throughout The Year

Pick Up Women’s Health This Month!

If you take a look at the latest copy of Women’s Health magazine, you’ll see a familiar face around page 156.

two photo collage on a black background; 1-cover of the May 2018 issue of Women's Health with Anna Farris; 2-photo of Kirsten leaning on Theron’s shoulder in the magazine

T and I are in the magazine talking about how we make love work with depression and other mental illness. Our blurb is small, but it means so much to me.

Sometimes we forget the impact we have on others just by sharing our own stories. This was a much-needed reminder to keep telling my truth.

I picked up a couple extra copies, so let me know if you want one and I’ll be happy to send it out.

Featured on Everyday Health

Everyday Health featured me in their pieceThe 10 Best Arthritis Blogs to Keep You (and Your Body) Moving:

If you’re looking for a blogger with some attitude, Kirsten is your woman. The self-proclaimed “chronic illness collector” (as a child she was diagnosed with systemic juvenile arthritis, or Still’s disease) and sex educator covers every health topic imaginable on Not Standing Still’s Disease, from mental health to medical terminology to her “Self-Care Sundays” series — posts themed around “our relationships with ourselves.” She is an advocate for the gender-fluid and trans community, which she discusses at length in her separate blog, Chronic Sex, along with (naturally) sexuality and sex with a chronic illness. While the topics she covers on both blogs aren’t light, she still aims to keep her posts humorous and positive. She even pokes fun at herself for having “collected” sixteen different health diagnoses, like scoliosis and asthma.

Go check it out!

Featured on Kids Get Arthritis, Too!

Hey hey hey, guess what? Yours truly was just featured on Kids Get Arthritis, Too!
PS I seriously cannot believe the company I am in. Check it out:
Jen Horonjeff is pretty much the bomb dot com and runs the Young Adult track at the conferences with Jenn Ziegler (additionally, also the bomb dot com). Ana? She’s on Broadway, starring as Gloria Estefan in On Your Feet. Todd is a badass racer. Elizabeth has done a lot to raise awareness of arthritis. Margo is a talented and amazing musician who also wants to be a doctor. Liz is a clinical social worker who works with those of us living with chronic illnesses.
It’s fine. I’m totally not crying right now at being included with this group of amazing people.

 

Bracelets!

I had been toying around for a while with the idea of creating bracelets in order to raise awareness and show off how strong us patients are.
The other day I felt really adventurous so guess what?
Bracelets!
They’re stretchy and made of rainbows! Okay, that’s what I tell myself, but the rainbow color is really nice. They say ‘Not Standing Still’s Disease’ on them.
If you take a look at the sidebar to the right of this post, there’s a spot to purchase them. They’re $5 each with a $1 charge for shipping in the US and a $5 charge for shipping around the world. The shipping costs do not go up if you order more than one.
Right now I only have 30 bracelets, but will get more if there is a lot of interest in them, so please keep me updated! And I’d love to hear if you have other items or products you think would be fun to have.

 

My Favorite Things About RA

Yeah, it doesn’t seem like a possibility, right? I hate this disease with everything I am, every fiber of my being. It’s ruined days, caused sleepless nights, and forced me to miss out on so much. It wasn’t until reading this post by RA Guy that I really started thinking about the positive sides of my RA.

Stubbornness
I really try to push through everything. I don’t like when things hold me back. Clearly, I’ve had enough experience with pain doing that. This could be seen as a downside, especially when it comes to resting and such…
Slowing down
l am really not good at this. I pretend like I am, but I’m not. Often, when we’re out and about, I don’t even think about sitting down or resting until my boyfriend suggests it – and then I’m really happy that he did.
My RA has also helped me to want to experience the most precious moments in life more. It’s important to me to be there for the people I love and care about. It’s important to spend time with them because you might not know when you won’t get to anymore. You can take that as morbidly as you like, but I mean more in the flare-ups-causing-problems sense.
Empathy and understanding
I really try very hard to understand the problems that other people face. I can empathize with people who can’t go out and do much, because I am that person sometimes. When I was eight, I was really worried that I would quickly end up in a wheelchair. A few of the places we’d done research about RA at suggested that most children end up in a wheelchair well before eight years. As a result, I always try to help people who are in wheelchairs when I see them.
Medical knowledge
At an early age, I had to learn big words and complicated terms. I may not be a doctor, but thanks to all the reading I’ve done on RA, I’ve been able to learn a lot of medical terminology and the symptoms of different ailments.
Alternative lifestyle
I’m not really a religious person. The one religion that I really just love, and do follow to a degree, is Buddhism. It’s more of a philosophy than a religion. Meditation and other techniques stemming from this and other Eastern religions have aided me in dealing with pain – and given me a career path. I recently graduated with my BA in religious studies, with a double minor in history and politics. I wouldn’t have changed to that major without taking a class on Asian religions to learn more about the meditation techniques practiced in Buddhism.
So as much as I don’t want to admit it, I’d be lost without my RA.
It could totally go away though, and I could just be grateful for all that it’s done for me up to this point. But that won’t happen. And I’ll continue to complain about my RA, but you and I can just remember this post and think about all the good that comes out of a bad thing.