Category: things to make you smile

The LGBTQ+ Community & Rheumatology

Posted on by Grayson

One of the things I’ve shared a decent amount in talks or research work I’ve done is the need for the medical community to learn about the LGBTQ+ community. I know great providers who openly support the community or are a part of it themselves. I also know providers who know nothing about the community.

Why is this a problem? Because they’re missing opportunities to understand & work with our lives and to make connections that we know will positively impact patient engagement.

I won’t lie — it’s been frustrating to see rheumatologists and the field in general not wade into speaking against anti-trans and anti-queer laws. It’s likely due to not knowing enough or not being tuned into what’s going on… but that fuels my question about how providers are then supporting their patients through this — or, at the very least, understanding that the increased stress level can and will lead to flares, etc.

That’s why I was so excited to see a new editorial piece published in The Journal of Rheumatology today by Jeffrey B. Driban, Bill M. Jesdale and Timothy E. McAlindon. Embracing Diversity: The Imperative to Represent the LGBTQIA+ Community in Rheumatology Research delves into this issue. From discussing outdated clinical forms to needing to recognize and embrace the community, the authors highlight some incredibly important points.

Please go check out the full article at the link below.

Citation: Driban JB, Jesdale BM, McAlindon TE. Embracing Diversity: The Imperative to Represent the LGBTQIA+ Community in Rheumatology Research. The Journal of Rheumatology. Published online November 1, 2023:jrheum.2023-0830. https://doi.org/10.3899/jrheum.2023-0830

Interested in more about the LGBTQIA+ community & chronic pain? The Pride Study recently published (4/2024) research on just that! Learn more.

Reflections on A Wild Year

Posted on by Grayson

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

Fun Links

Posted on by Grayson

If you haven’t taken a look at my team’s page for the 2011 Run/Walk to Irish Fest coming up in August, please head on over and take a look. The money goes to help our cause. Even if you’re not in the area, we’re always looking for donations!

Did you know that there is a rap song about RA? Well, there is! Head on over and take a listen. MOEtivation samples a Nina Simone song, which I think just makes it that much better.

Opportunity, one of the rovers up on Mars right now, apparently has an arthritic shoulder problem. Who knew machines could get arthritis too?

The Dutch are currently working on an implant to be put in the neck that could help control inflammation for RA.  Right now they’re moving into a possible trial phase. I think this could be an interesting device, but it is hard to work to cure a disease when you don’t know the cause.

Did you ever wonder where jacuzzis come from? Rheumatoid arthritis and wine. Mmmmmm.

Sometimes it feels like you need a little luck to get through bad days. These jerks have hogged all your luck. Nah, but seriously, that is a pretty neat story.

Running Through the Rain

Posted on by Grayson

Sometimes you just need to run through a rainstorm.

I am a firm believer in the fact that everyone needs to have some spontaneous fun sometimes. And what could be better than running through a rainstorm?

Yesterday was my third Humira shot. I was running short on time so I couldn’t tape it. Hopefully next time though. I think it is helping after all. This morning my fingers were the thinnest and longest looking I’ve ever seen them. It was amazing. I wish it lasted a little better though. But still, to have loose skin on my fingers is awesome 🙂

I’m getting excited about moving. Just two more weeks! Today, I spent my pre-work hours packing up my DVDs, CDs, and books. So now I just have my knick-knack things to go through and my clothes to finish. I gotta decide what all I’m going to use in the next two weeks. Maybe I’ll just wait to do that last.

I can’t wait to get everything moved over and set up in our own place. Wake me up on the 23rd so I can finish packing!

Under Pressure

Posted on by Grayson

This post is inspired by this post.

It is really hard to be sick all the time – physically, mentally, emotionally. It just plain sucks. I wish there were better words to describe it.

But one of the worst things to deal with is the pressure to feel better, to get better and stay better. Having a support system can be one of the best – and hardest – things to deal with. It’s wonderful to have those special people to lean on when you need to. And let’s face it, I need to often. But it can also be very hard to handle.

My support system is made up of family, ‘adopted’ or blood. It is so hard to feel sick all of the time, not just for me but for them. I want to go and do and be a part of the world so much and sometimes I just can’t… and often that means the people around me don’t either. It can lead to feelings of guilt or even wondering how long the relationship can last/stay good as you stay sick/get sicker.

It’s comforting to know that these are all normal feelings for those of us often sick. I was struck in particular by this comment on the post mentioned above, specifically this:

I think it’s important for us to remember that even though we didn’t have the choice to be sick, they have the choice to be here.

And somehow that makes fighting all these obstacles worth it.

The Thankful Post

Posted on by Grayson

Okay, so I should’ve done this back when Thanksgiving happened, but if you remember, I had kind of a lot going on. Bah.

Random things I’m thankful for this year:

  • Having a job – not just that, but one that I really like and where I really like management and the other workers. I could see myself staying here until I’m done with my PhD even… which takes forever mind you 🙂
  • That school’s out for almost a month.
  • Now that classes are over, I feel like I have a few friends, which makes being in Madison a little more bearable.
  • Lotion, because my fingers keep cracking open 🙁  (also, band-aids)
  • Netflix, because it’s one of the most awesome things invented.
  • Being able to be on medicine, because I don’t even want to think about how hard the last 6 months would’ve been without it.
  • My family, who is always supportive of me.
  • Pain medicine haha
  • On a related note, alcohol
  • My sister, who is pretty hilarious and pretty much awesome
  • Egg Nog, and my annual nog binge (which was this morning btw)
  • Random guests who give me dessert! (Also, I think I’m in love with flan now)
  • My boyfriend, who is probably the nicest and sweetest and funniest person I know. Also, he knows when to kick my butt into gear, which is awesome.
  • Getting to establish a small sort of relationship with my real dad. It’s not much now, but there’s a lot of time to work on that.
  • Anti-fatigue mats
  • Christmas music will be over soon and I get my oldies station back (yeah, shut up, I like oldies)
  • I’ve learned how to buy things a little healthier now, and feel better than I have for a while, comparatively speaking.
  • Humor! Otherwise, I don’t think I’d make it.
  • And you! Whoever you are reading this- whether you’re a friend, from my family, or just some random person – you mean something to me.
  • Also, cheese.

My grades were supposed to be up today I thought, and they’re not. I think I’m grateful for that too.

I hope everyone has a safe and happy holiday season!

Nice Things

Posted on by Grayson
Warning: I’m going to be super cheesy. Deal with it 🙂
I’m all about nice things – heck, I pretty much exude niceness (or try to, at least). The newest edition of PFAM is centered around niceness too – what is the nicest thing (or things) someone has done for you since you became ill?
Now, being someone who has been sick for over 80% of my life, I have several options.
I could talk about how grateful I am that my mom figured out my real diagnosis instead of believing the doctors and sending me off for chemo. That’s kind of a huge thing right? I think about every once in a while what would’ve happened had she not been such an advocate for me in the beginning… What would the chemo have done to an already frail and sickly six-year-old girl’s body?
I could talk about how grateful I am to my entire family, for putting up with how grumpy and frustrated I get – and for everything they do to help me, from rubbing my legs to tucking me in (more recently than you’d think) to babying me (especially my equally sick baby sister – go figure).
But I think that, to a certain degree, those kinds of things are expected from a family, especially if they also suffer from the same condition. They are supposed to be there and do whatever it takes to help you out. So maybe I should think about a newer addition to my life.
I often talk about my boyfriend on here – things we go and do together, conversations we have, etc. During the past (almost) three years, he’s done far too many nice things for me to keep track of. I think there are definitely a few that stand out though.
He’s always been someone that I can go to and rant about whatever is irking me – whether it’s inside or outside of my body.
He is very understanding and tries to make sure I’m okay, no matter what we’re out and about doing… which is important since I’m stubborn and often seem to refuse to believe that I am any different than anyone else.
He doesn’t let my RA limit him. If I’m too tired or hurting too much to go do something that he wanted us to do together, he’ll do it anyways… which might sound weird… until you realize that it limits the possibilities for him to feel limited by my condition and resent both it and myself in the future… which, I’ll be honest, is something that I worry about for anyone in my life, but especially a significant other.
Above everything else though, the nicest thing he’s ever done is to suggest that I start this blog. He wanted to know more about my RA, and I wanted to tell him more, but there was a level of awkwardness surrounding things. Now, the blog gives me a way to show him – and others – how this disease does and can affect me. It’s also helped me to learn more about my disease, my body, and myself in general. I’ve grown as a person and have become more of an activist for people with disabilities (more on that coming soon). I’ve also gotten to speak to a few people who have been helped in some way by my blog. It’s an amazing feeling to know that I’ve helped to contribute to their lives.
Basically, the boyfriend is one of the best things that has ever happened to me. I understand myself more and am more able to understand others – and help them understand RA. He also has renewed my faith in other people to understand my condition, and that it isn’t something that I should be shy about discussing with others. He’s there to support me, but also there to help me realize when I need to take it easy.
So then, Mr. Schultz, thank you for everything that you do for me. Even if I don’t say it often, I hope you know that I very much appreciate having you in my life and that I’m lucky to be a part of yours.
🙂

Arthur and Body Image

Posted on by Grayson

I wanted to talk a little bit more about being in the Dells last week. We basically spent all day in the water – between a few slides, the lazy River of Troy, the two wave pools, and our jacuzzi tub.

Last year, when we went to Noah’s Ark, I wore my bikini with some swim shorts, because I wasn’t really that happy about my appearance. I ended up ditching the shorts as we were leaving because they got pretty uncomfortable.
This year, despite the fact that I’m more out of shape than I was last year, I decided to ditch the shorts and just wear the damn bikini. I’ll be honest, I used to judge people who were a little bit heavier and yet still chose to wear the skinnier girl stuff – I used to conform to societal standards of beauty. But as my RA has gotten worse, I’ve realized that it isn’t my place to judge anyone, just like it isn’t their place to judge me. I don’t know their lives, what they’re facing, or the things they’ve been through. They likewise don’t know the problems I face just getting out of bed sometimes.
At first, I will admit, I was a little self-conscious – partially because of the weight, but also because of my VERY pale skin. The RA also makes it so parts of me don’t necessarily look as good. For a while growing up, I hated wearing shorts because of the way my knees look. After a while of walking around though, I noticed a few other brave souls who didn’t give a crap about what anyone else thought about them. It helped give me more confidence. I suddenly stopped caring what other people thought of me and started focusing on really having fun.
It was the most fun I’ve had while flaring… Well, probably ever. Being in the water, there was less pressure on my joints. Even being out of the water, the sun helped to loosen them up a little. And on top of that, I felt amazing and happy. On top of that, it was a great way to celebrate the boyfriend’s birthday.

Baseball and JRA

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They’re not normally things you would associate with one another. Almost unequivocally, those with JRA do not have the ability to participate in such physical activities. We get really tired really easily, and nothing seems to help. Nonetheless, one of my favorite things to do is watch baseball and, when I can, play catch. I actually write for a baseball blog that follows the Milwaukee Brewers, and get to do fun stuff like interview draft picks. [Shameless plug – my interview with the Brewers number one draft pick will be up on Brew Crew Ball today at 1pm CT]

I’m not going to lie, I totally cried when I saw this. When I was finally diagnosed with JRA, there were maybe five websites talking about it. Now there are hundreds, and more people are becoming aware of the problems that kids face with this disease.
Justin Morneau is the first baseman for the Minnesota Twins. His niece, Madelyn, was diagnosed with JRA a few years ago. Sunday night, the Twins hosted their second annual ‘Justin Morneau’s Casino Night’ to raise money for JRA research and more. For the full story, head over to the Twins’ news page. Pictures from the event are here.
If more major athletes or celebrities were to make arthritis their ’cause’ and be very open and public about it, more people would hear about the pain and be willing to help. The more help the researchers get, the faster they can develop better medicines and, who knows, maybe one day a cure.

Are You Hungry?

Posted on by Grayson
I’ve been going through one of those periods of time lately where I’m not really all that hungry. It’s really frustrating, especially being hypoglycemic. I have to eat every so often, or I get grumpy. I also tend to get worried about the struggle I have with the eating disorder that mostly developed in my first year of high school. It really makes me worry whether or not my lack of appetite is due to my RA, which has been known to happen.

Rash: after my post yesterday, I noticed that my knees had some pretty bad rash

Pain: jaw again, stupid wisdom teeth coming in
Inflammation: a little in my jaw
Meds: I took three ibuprofen last night before bed, but they’ve definitely worn off by now, haha
Stress level: right now it’s not bad-ish
Other notes: I’m getting super excited for my trip!!
Things to make you smile: Umm, you need to watch this show because it’s hilarious