Category: Laura

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

Three years on: Life without Laura

Posted on by Grayson
You, I miss

I can’t believe that it’s been three years since Laura passed away.

Three years?

The hurt is lessening.

I almost wish it wasn’t.

It makes me wonder at what point I’ll forget to make a cake for you birthday or think thoughts of you today.

It seems like it has been much longer than three years. It’s amazing how many things have happened in the interim.

Your death pushed me into advocacy in a way I couldn’t have been involved before.

In losing you, though, I became so lost, so angry.

It’s not fair that you were taken. It’s not fair that a mistake from a hospital cost you your life.

I know that you’re around me much more than I think at times, but I also feel that subsiding. Maybe it’s that I don’t need to rely on you as much, or maybe it’s that others need you more.

Whatever the case, I miss you. So much more than words can express.

 

Happy birthday Laura ♥

Posted on by Grayson

I miss you much lovely.

For those of you who don’t know – in December of 2012, I lost one of my dearest friends to Still’s. We’ve both been sick since childhood and she was running out of medication options when an infection wasn’t treated correctly for her suppressed immune system and it turned into sepsis… which was also treated incorrectly. This event across the Atlantic uprooted my entire life, not only from losing one of my biggest sources of love and support but from being forced to face my own mortality. She did so much to help me grow, in life and in death, and I miss her every single day.

Today is her birthday, fitting for July being juvenile arthritis awareness month. Sadly she is not the only person that I’ve known who has passed away from this disease, and many others I know of were children.

Sometimes you meet someone who completely changes your life for the better. Laura was that kind of person.

Laura Jayne, I freaking miss you. I can’t thank you enough for everything that you have done for me. You still push me to keep fighting, to keep working on being a better person and a better activist. The passion you’ve given me has led to me starting to kind of be a big deal in the arthritis and chronic illness communities, but it’s also reminded me to live with a zest for life and take chances. You’ve given me friendships in the wake of your death that will last forever. You’ve also given me a reason to eat a ton of cupcakes this week – and to bake the most adorable cupcakes I’ve ever made.

You taught me the beginnings of self-care when I didn’t feel worthy of it. You were my mentor, my first sick friend with Still’s. I still remember the first time you responded to me on twitter and I lost it because you were such a big deal for me. I miss our fun conversations during odd times because of the time differences between England and here – and our painsomnia. I miss talking wedding things… and the thought of having been involved in each other’s weddings. I miss your silly sayings, sharing resources, and the intimate conversations that you can only have with someone who is practically your twin.

I know that you’re still here for me. I know that you’re still around, and that at least makes it easier. I also know you popped in for my bachelorette party, my wedding AND me honeymoon, you sneaky goose. Every time I see a butterfly, I know it’s you… mostly because you’re pretty obvious about it by landing on me or sitting by me for a long while.

Happy 33rd babe.

Has it really been two years?

Posted on by Grayson
Yup, it has 🙁

As I write this right now, the physical copy of this picture that I took along with me to the medium is sitting here just staring at me. I wouldn’t have it any other way.

Part of me doesn’t understand how it’s only been two years since Laura passed away, and another part of me wonders how it hasn’t been longer. I’m sure a large portion of that has to do with the changes that one goes through over the course of two years – especially the two years that I’ve lived through.

I have a completely different job and, barring anything crazy, will have another one. I’ve planned my wedding and taken that plunge. I’ve dived into pet parenthood. My sister is pregnant again – and I have a whole new (to me at least) sister and brother to get to know. I’ve let go of one set of family for another set while beginning to explore my spirituality. I’ve participated in panels, met with politicians, and traveled on my own to Washington, DC. My hair has been a couple of different colors.

Laura’s death was hard in so many ways, but two most notably.

Losing one of your closest friends is always hard, but Laura was also the first person who really understood how I was feeling. She knew what I was talking about without any explanation needed. She accepted me for who I was and tried to help me through whatever I was going through, whether that was illness related or not.

Her passing was also a huge wake up call that this illness can take a turn for the worse at any moment. That should’ve forced me into a mindset of 100% compliance and going to PT every week, etc. Instead, I freaked out at the realization of my own mortality and kind of dropped everything. A bit of survivor’s guilt in there you say? Perhaps.

At the same time, her death has done some things that have really benefited me. That seems wrong to say, but hear me out.

I met and got close to a number of people, namely Emily at Chronic Curve along with Laura’s mother in law (almost). The two of them have helped see me through a lot and I can’t imagine my life without either of them.

I became aggressive in my activism, to the point that I was able to go and speak with politicians several times about the dangerous diseases in the arthritis umbrella and how we MUST fund research for a cure. Now I’m balancing the aggressiveness out with optimism and love, which were both much needed.

I miss her like you wouldn’t believe, especially knowing that she would soon be getting married. The fact that she didn’t give to have her perfect day is incredibly hard to know now that I’ve been through it. She deserved that day – so did Matt. I also know that she helped with my day and the people involved in it, too though, and for that I’m forever grateful.

Maybe someday I’ll stop marking these next two days more with sadness and reverence, swapping those out for celebratory wake-like days. I know one thing this year – I’m glad to be in a place where I can practice self-love and compassion… and have tissues!

A long, long update

Posted on by Grayson

So, let’s see, when was the last time we really talked?

Oh. Oh my.

Well, I started a new job at the end of July. That’s been going well, though I will say it is stressful compared to my last job as I actually do things and have responsibilities now. I’m working in the office of a department at a local university. I love it – and, more specifically, I like being able to pay all my bills and cut down on some of my debt!

In August, we got our engagement pictures done and holy crap you guys I have just under 8 months to plan this shizzzzzzzzz. There has been some drama (i.e., we picked a florist and then she bailed) but we have plenty of time to recover I hope. I have no idea how to pull together some of this stuff and stuff our ideas into the melting pot of love… which sounded less perverted in my head haha.

September saw me feeling the best I’ve ever felt in my entire life. I was running – sometimes up to a mile! – throughout a chunk of time at the gym. We went hiking several times and it was tons of fun… My inflammation levels were all low, and my pain was controlled! Everything looked great…

But then, thanks to my new job, I got new insurance and that required a prior auth on my lyrica – which we had to go through 2 months in a row because they don’t freaking know how to do paperwork over there. Pain levels were high, and the stress that brought (and other crap) didn’t help things. December saw me with high inflammation levels and the enbrel wasn’t doing a thing to help with it.

The last few months have seen us facing a number of high stress and scary incidents too – my mother was in a terrible car accident that she miraculously escaped with bruises and a concussion, but has her a little road-weary. My step-dad had to have further surgery for his diabetes and things aren’t looking great on that front. T’s aunt saw her breast cancer return, with a stage 4 status, and then this past Sunday suffered a minor stroke. T’s had some of his own health issues, and it has been hard to watch him deal with those. On top of all of that, we have the wedding planning and more. I just have been feeling so emotionally overwhelmed but everyone says crap like ‘be strong’ and so I don’t show it or share it.

The last few weeks have been enormously hard emotionally as well, dealing with the year anniversary of Laura’s death. I had thought it would be easier when we got to a year – that things would sink in. It would still be sad, but maybe we could all really start to heal. Now that I’m a few weeks removed from that day, I am emotionally feeling better, but still very raw.

I had a terrible dream on the anniversary of her death. T and I were on a cruise and there was some emergency that we of course were sure was just precautionary. He runs to go take a look and calls out my name in the most unnerving tone of voice, and I turn from what I’m doing to see that the boat is sinking. Unsurprisingly, my heart sinks and I have that ‘holy shit I’m going to die’ realization. When I woke up from the combination of the nightmare and my sky-high pain levels, I never had that comforting ‘oh oh good, it was all just a horrible dream’ feeling. I’m constantly on edge and, if the topic of death or the meaning of life or any of that existential crisis crap should happen to pop up, I’m incredibly sensitive to it – like in the freeze up, panic attack type way. This is the first time I’m really talking about it with anyone, but it’s also gotten better as of late for the most part. I sometimes have existential crises, but they’re often short in nature (i.e., not even a whole day) so this has been hard to deal with. I’m thankful my nighttime meds are back in force, and I can really sleep throughout the night.

The Friday after, between work and everything else, I had a breakdown the likes of which T has never seen before. I’m sure I cried for like an hour and I felt better afterwards, but damn. It was hard to be that vulnerable and I’d like to avoid it whenever possible… though I didn’t mind the nice things he said to cheer me up. I’m lucky I have him for sure.

My pain levels are getting back under control, but my inflammation is not. I’ll be switching to Orencia in January/February depending on how long it takes them to prior auth that. I just got all the info in the mail from the company that makes it. I’m nervous, but ready to just move on to something that works and hopefully doesn’t make me feel like crap when I take it like the enbrel has been doing lately.

Are you ready for the good news? Me too!

I’ve been asked to be a part of a panel on juvenile arthritis for our local Arthritis Foundation chapter in February, so I’ve been doing a lot of research on the transition from childhood care to adulthood and all that fun stuff. Oddly enough, it is fun for me to read all this info. I’ll be doing more with that here as well.

As a part of that, I spoke with a pediatrician in Ohio who deals specifically with SJIA/Still’s (and MAS). It was a refreshing conversation, and he agreed that there needs to be a focus on how to be a healthy adult for these kids transitioning. He also passed along some medical research to share with my rheumy, and has graciously opened up his brain for me to pick. I’m really quite pleased that he agreed to speak with me.

And I’m a little afraid of what I’ve just signed on to do, but I have made it a goal to run a 5k in May raising money for the Arthritis National Research Foundation, who donates 91 cents on the dollar to research. They’ve made some important breakthroughs lately, so I’m excited to help be a part of that (I think? I’m tired haha)! If you’d like to donate to the cause (or join us!), come check it out!

I feel like this totally turned into one of those super annoying Christmas letters, save that I didn’t tell you about anyone’s goiters or corns or enemas… for now.

The Longest Year: Laura Remembered

Posted on by Grayson

I don’t even know what to say or where to start. How do you celebrate the life of a woman who completely changed yours when she’s no longer here, and how do you try to put any of that into words?

I found Laura after I had started blogging about my own experiences. One day I reached out to her to let her know how helpful her blog was and, to my surprise, she responded. We began to talk about our experiences and, while there are some differences, our stories are extremely similar. Those similarities just grew with our friendship. We always kind of just knew how the other was doing, even without talking, because we did the same things when we felt awful. We even got engaged the same year to the most amazing and supportive men I’ve ever known. I’m biased when it comes to Theron, but not when it comes to Laura’s Matt. The two of them are exactly what partners should be, and I hope they both know how much of a difference they’ve made in the lives of two chronically sick chicks. We were so looking forward to planning our weddings together. I found my wedding dress a few months after she passed and, on a day where you’re supposed to cry happy tears, I cried because I knew I couldn’t share that , or any aspect of the happiest day of my life, with her.

One of my favorite things we had in common was our sense of humor. Many people get grumpy due to pain, especially when it is chronic and/or severe. Laura was one of the first people I really met who, like me, tried to cheer herself up with humor and never wanted to treat others poorly. She would ask how you were doing, even if she was in the hospital and clearly doing worse. The week before she died, she and I were discussing some pain I was having and she was trying to help me figure out what it was while she was in the hospital with organs failing. Even if she was expressing frustrations with pain, she never seemed to complain. That was part of what alarmed me the weekend before she died – she was talking about how much pain she was in and how nothing was helping. She and Emily from Chronic Curve were discussing the pain and possible ways to deal with it. I knew something was wrong, but I didn’t know just how bad it was.

That was Sunday night, and she passed away on Monday. I found out on Tuesday through one of her friends, but in reality I think I already knew – we all did. There are very few deaths that can bring the rheum and spoonie community to their knees, and Laura’s was one of them.

As hard as it is to say, there are some good things that have come out of Laura’s passing. Out of the ending of her story, so many people have been brought closer together. Emily and I have forged a friendship along with others that include Matt’s mum, Many who knew her have taken up activism in her name, and those of us who were already activists have a renewed passion for fighting these diseases in any way we can.
There is nothing I could say that could cover everything she was and continues to be for me. She has been a sister, a confidant, a best friend, therapist, personal motivator, and doctor all in one. She continues to be many of those, despite her physical absence.

I will be forever grateful for the things she gave me, both in life and in death, but especially for her catchphrase that gets me through every day: “Living with Still’s is still living.”

May 10th: Wear Blue & Gather in Memory of Laura

Posted on by Grayson

Here’s what you should do:

First off, you should wear blue in honor of May being Arthritis Awareness Month. Paint your nails or dye your hair or whatever you want to do with it.

Second, what are you doing at 4pm UK time? That’s 11am ET in case you’re confused.

On May 10th, a bunch of us who knew Laura of Still’s Life are getting together on a page dedicated to continuing Laura’s mission of raising awareness that her fiance’s mother runs called For the Love of Laura. We’re getting together for 10 minutes in memory of Laura being gone five months. If you were touched by Laura in any way, please stop by even if it isn’t during that 10 minute time frame.

It seems like every day is both harder and easier to deal with the grief of losing Laura. How does that even work?

Day 25: Enjoy some knowledge #HAWMC

Posted on by Grayson

Today’s post is short and sweet, about something I learned from another health activist. It comes from Laura – who else?

“Life with Still’s can still be life.”

It is so simple but I catch myself forgetting it often. We can get so wrapped up in our hurts and our trauma/depression/anxiety and all the other issues that come along with a syndrome like this that we forget we are living life right now and that there is no pause button while we get better.

No matter your health issues, you are still alive. As much as life can suck sometimes, it truly is beautiful and we should all embrace it.

Day 21: Adversity #HAWMC

Posted on by Grayson

“The flower that blooms in adversity is the rarest and most beautiful of all.” -Mulan

I’m not sure what to make of this quote to be honest. Part of me agrees and part of me doesn’t.

People have told me that they are amazed at what I have done and continue to do in the face of adversity. I grew up sick, dealt with sexual abuse and assaults, felt helpless watching my sister being beaten by family, and continue to deal with depression and chronic pain issues. Despite all that, I have achieved a lot. I finished high school with honors and an International Baccalaureate diploma, in addition to being one of the valedictorians. I was the first woman in my immediate family line to go to and graduate from college. I started college with sophomore standing due to my IB and AP credits. I continue to work and to live my life as normal as possible, even though it hasn’t turned out really at all like I’ve planned.

I try to carry on being a realistic optimist. I know it sounds like an oxymoron and, to be honest, often feels like one. However, it is who I am.

I don’t think that makes me that rare or beautiful like this flower. I wouldn’t be the same without each thing I’ve gone through but that doesn’t necessarily make me better for it. Every person deals with a set of crap circumstances. These are the things of which life is made. My set of circumstances just happen to surround a very dysfunctional family, assholes interjecting their ways into my life, and Arthur the biggest asshole of all. But things could be worse. I could be my fiance’s aunt, fighting breast cancer a second time and not particularly winning the battle. I could have lost my legs in the Boston bombings. My sister could have died when she had a seizure a few years ago. My mom could have died in the hospital in October.

That doesn’t mean that there aren’t people who clearly have it better than me either, but we all have our crosses to bear. Laura taught me that my hurt could not ever equal the hurt someone else feels. We all handle things differently and we have to help each other through that. As much as she didn’t compare pains and experiences, I know that the things I’ve gone through with my illness will never even come close to what she had gone through. Even as she was becoming more and more ill, starting to die of infection, she tried to help me figure out what was going on with my back (clearly she didn’t know what was happening to her). She did not try to make others feel horrible because she was clearly worse off than them, but to encourage friendship, support, and community. Knowing her made my life infinitely better.

Laura is this rare and beautiful flower, now wilted never to bloom again. The rest of us are simply trying to catch up.

Day 7: Sensationalization of Illness #HAWMC

Posted on by Grayson

To be honest, there have been too many sensational cures going around in our lovely media lately that I don’t want to add to it or promote it. I will say that Dr Oz is one HUGE part of what I’m talking about, showing sensationalized “cures” for JIA without showing the medications individuals were on, or how it could be far more likely that an individual was misdiagnosed and that the treatment for one thing “cured” them of the incorrect illness.

I’m tired of being told to eat rum-soaked raisins. I’m tired of people telling me to avoid 8 different food groups. I’m tired of having all of these idiots think ‘arthritis’ is all aches and pains, and not see the chemotherapy, stem cell treatment, failed meds, and friends we lose because as a society we fail to see the value in researching new treatments and cures for autoimmune diseases.

Laura died because doctors – at a hospital she frequented – didn’t know how to handle someone with an autoimmune disease and practically non-existent immune system due to the treatments. Forgive me if I don’t want to lend credence to the idiots who don’t understand that these diseases are deadly.