Category: death

Goodbye Mighty Casey

Posted on by Grayson

Have you ever met someone who completely changes your life in the best ways? Who shows you that you can be yourself and change the world for the better, even if you’re not always offered a seat at the table?

Mighty Casey Quinlan smiles at the camera

Casey Quinlan was that person for me. We met on social media and had followed each other for a while. It wasn’t until the ePharma 2016 summit in NYC that we got to meet in person. While she was speaking, a pharma person at my table was grateful she was wrapping up because “she’s scary.” She was challenging the status quo.

I dm’d Casey about this, and she immediately came over to the table and flipped this guy the bird behind his back while dancing and sticking out her tongue. It was the most amazing thing to see.

a group of patients in a photo together

I worried for years about challenging the status quo. In spaces I’d done that before, I was kicked out or not invited back. Casey showed me that it didn’t matter if I was invited back. I had to speak truth to power whenever possible.

Casey and I stayed in touch, chatting regularly. The next time we got to hang out, it was in DC. She took me to her favorite place, the Old Ebbitt Grill. I don’t even remember what kind of cocktail she recommended that I get, but it was good. For the better part of the day between Ebbitt and the hotel bar, we talked about our lives, changing healthcare, and the lack of support for trans folks.

In the years between NYC and DC, I’d come out as trans and begun the process of transitioning. I’d lost several friends, some due to their full on transphobia and others who refused to see they were causing harm. Casey was the one person who I knew worked on getting it right and helping others do so.

a photo of a painted jacket - there is a contract in the background with a hand flipping the bird in the foreground and text "This aggression will not stand, man"

She knew it was important to highlight inequity. On her podcast, she did this regularly, whether that involved speaking truth into the void or inviting folks on to talk about everything that was happening in the world.

I didn’t grow up with a supportive family. I haven’t talked to my mother in almost a decade and never truly felt at home there anyway. But, I did feel at home wherever Casey went.

Back on the 10th, my partner and I drove out to visit Casey in hospice. The two of them hadn’t met and, while hospice wasn’t the best meeting place, they got along well. I told Casey what she meant to me, who she was for me. I will never forget how she turned that around to remind me that I helped her and others, too.

Ever the snarky human, she told me that she loved me to death as we squeezed each other’s hands and I kissed her forehead.

I hate that you’ve gone where I cannot follow, my friend. But I know that you’ll make sure that place gets its shit together before those of us following in your footsteps to change the world get there.

I love you to death, Mighty Casey.

Casey with a QR code on her chest

On The Passing of John McCain

Posted on by Grayson

black background with yellow textbox and black text: On The Passing of John McCain Not Standing Still's Disease

Senator and former POW John McCain died yesterday.

Scroling through social media, I’m dismayed. I keep seeing statements from people who have forgotten McCain was not a man of the people. And, me being me, I’m upset by that. McCain was not a good person, at least politically, and we need to remember that. He did a lot of harm to communities – that’s his legacy.

I don’t have to be sad that a person who spent his life harming communities I’m a part of or I support died. This man is not some amazing person to put up on a high pedestal… unless you want to praise the systematic oppression of anyone who isn’t white, cishet, rich, conservative, American-born, and the right kind of Christian.

It’s okay to speak that truth. In fact, I would say we have a duty to do so because the GOP sure as hell isn’t going to take a break from attacking marginalized communities. They’re still scheming while tweeting out their sympathies.

McCain was horribly racist. He used racial slurs and continued doing so, though less publicly. He played a major part in selling sacred indigenous land to mining companies and golf courses. He also voted against MLK day, later saying he wished he hadn’t. Of course, McCain also elevated Sarah Palin which essentially co-founded the birther and tea party movements. That led to the administration we see today, especially with prominent birther Trump in charge.

Don’t forget that this man thought the ACA repeal effort – the one disabled people put lives on the line to stop last year – didn’t go far enough. He fought like hell to stop the ACA from being put in place. Instead of working to fix it, he campaigned on repealing it after it became law. It floors me that someone who helped with the ADA and tried to pass a patient bill of rights could also be so cruel.

On a more personal note, I didn’t have insurance coverage as a child because my mother sucks. Because SJIA is a pre-existing condition, I couldn’t get insurance on my own covering my SJIA until the ACA passed. It took a few years for me to get a job with an insurance option. I can’t imagine having had to wait until then to get care.

I could have easily died if McCain got his way, either by defeating the ACA initially or repealing it. MANY people would have. I don’t have to applaud him for making it through unspeakable things when he would’ve forced many of us into not dissimilar situations.

He could have saved disabled people. We could have stayed on home instead of being arrested. We could’ve taken care of ourselves instead of spending energy on basic human rights. All he had to do was say he would vote against it. Instead he wanted to pull a publicity stunt at the last second, telling reporters to ‘wait for the show.’

While I cried in bed, wondering what the fuck me and my disabled siblings were going to do without the ACA, McCain sat grinning on the inside like a son of a bitch. He did not care that his cavalier attitude was harming people. We were confronted with losing lifelines and he treated it like a game.

I stopped seeking diagnoses for things going on. I was afraid that whatever is going on neurologically or with my heart would get diagnosed. Without protections from the ACA, I could easily lose the ability to get any current diagnoses treated. McCain literally played a part in my poor health last year.

I won’t do about McCain’s legacy. I also won’t pretend that being a POW means he was a good person. What he chose to do when he got home and involved in politics is important. He chose to harm. He was a good republican.

I won’t speak well of someone who took pride in being a selfish asshole. If you choose to do that, you should re-examine why whitewashing history is a hobby of yours.

My Anti-bucket List

Posted on by Grayson
A lot of times we talk about our lives in things we want to do or wish to accomplish. Sometimes, I find it easier to think of the things I wish never to repeat or endure at all. Some of these are things very few of us have to worry about and others are silly, but they’re all a part of my list.

Talk to or see my mother or my other abusers again.
I don’t need that shit in my life, y’all.

Be in a plane crash.
My grandpa died in one with his Cessna. I just imagine it would be the scariest.
Shoot an animal.
Just nope.
Be responsible for the death of another, even indirectly.
I hate if I hurt a mosquito biting me to try to feed her babies. I hate when I run over a frog I couldn’t see. I don’t like to hurt anything because I value all lives, all souls.

Hurt or abandon those I love.
It’s a running thing in my Family of Origin. I aim not to do it.

Go to Burning Man.
There are way too many people there.

Run a marathon.
LOLOLOLOLOLOL
Do a cleanse.
Those things honestly are really bad for our bodies
Get back with an ex, even as friends.
I’ve dated some pretty awful people.

Give people too many chances to hurt me.
Been there, done that.
I will always fight for others while pointing out how race, poverty, ableism, patriarchal society, societal standards, etc, harm us all
Stop caring about my fellow patients, no matter their illness.
See above. It’s not fair for movements like #PatientsNotAddicts to keep demonizing our fellow patients.

Apologizing for being me.
I’m a rebel. It’s how I’m meant to be. In most aspects of my life, that tends to be a good thing. I refuse to hide it or cover it up just to help others feel more comfortable. Not everyone likes a rebel, especially one who tells it like it is. I’m not here for everyone to like me.
 
What are some of your anti-bucket list items?

 

RIP Oreo

Posted on by Grayson
If you follow me on social media at all, you’ll notice that I’ve gotten hella sad and depressed.
Oreo, our oldest guinea pig, passed away Monday night after needing emergency surgery.
He died in my arms. I tried to bring him back. He was just too far gone.
It’s so sad.
In January of 2015, T found a photo of Oreo and wanted to go see him even though we already had our Jaq and Gus Gus. The shelter he was located in was not really used to guinea pigs and didn’t have the right things to take care of him, from food to the cage setup. They also had him right outside of the dog area and Oreo was very scared.
I don’t often talk about things, but I have some emotional… sensitivities or gifts. Empathy with animals is the big one – I think because I had to tone down the human empathy due to my upbringing. I still sense things with many people but have blocked a lot.
Anyway, feeling his fear and worry, I couldn’t stand to see Oreo like that. So I fought to bring him home.
Here’s the Facebook post from January 26, 2015, the day after we saw him:
So I may have just been hella assertive.
 
This little guy’s name is Oreo and he has been at the Jefferson County Humane Society since the end of September 🙁 He’s close to the dogs, and gets very scared when they all start barking. He’s also in a chilly area that could potentially cause more URIs. We went and saw him Saturday, and fell in love.
 
I found out today that our apartment complex has a two pet restriction after getting a sad call from JCHS that we couldn’t take Oreo due to that. I think honestly it is because they allow cats. I can understand how too many cats in an apartment would cause a lot of extra clean up once the owners move out… but a caged animal like a guinea pig?
 
I brought up fish, which are also caged animals, and was like do you allow only two fish?
 
I felt pretty good about it.
 
Needless to say, I won the battle and Oreo gets to come to his furr-ever home tomorrow night
Within a week, he had settled in with T and I – though he was very nervous.
We quickly found that he did NOT get along with Gus Gus, but fell in love with Jaq.
Oreo’s owners prior to being at the shelter had allergies. He was always by himself and wasn’t handled much. As a result, he didn’t know how to act like a true guinea pig. That changed as he and Jaq got to be best friends.
He quickly also learned how funny it was to pee on me.
He even followed in T’s footsteps and started learning about baseball.
He would help me try to wake T up from weekend naps…
And then give up.
And then enjoy snuggles with the biggest smile.
He and Jaq and Gus tried to get along, but Gus doesn’t play well. Still, it made for some cute pictures.
Jaq and Oreo would groom each other…
And snuggle together…

And explore together.

 

Oreo was the first piggie to brave the kitchen, too!
He always took it upon himself to protect Jaq.
They were inseparable.

 

Oreo was incredibly photogenic.

 

 

 

 

T got me the sweetest Christmas present – a drawing of me and all three of our babies.

On his home-a-versary, we fed Oreo a ton of his favorite – red peppers.
He was involved in politics…
And patriotic…
And always promoted healthy body image…
He was grateful…
And he was an amazing snuggler.
When Oreo had his first bladder stone surgery in April, it was hard on Jaq. He visited often until Oreo was well enough to go back home.
He and I watched Ghost Adventures and more together.
We had to feed him baby food.
He also enjoyed eating piggie wipes.
He was so happy when his incision had healed enough to have big snuggles.
And enjoyed sleeping in the sun.
He started behaving in a way that showed the pain relief from this bladder stone, running between T and I looking for scritches and snacks.
He would even skip us and wait by the fridge or in the kitchen for noms.
On Saturday, he was still full of loves and snuggles and popcorns.
On Monday, we took him to the vet because he thought he was impacted with the poos. It turned out that he was trying to pass huge bladder stones lodged in parts of his body.
I will always hate that our last real picture with him was at the vet.
When we brought him home, he had a really hard time coming out from the drug-induced sleep. Around 10 pm he started to breathe funny. I started to pet him and talk to him.
Then he just stretched out and stopped.
I tried to wake him up, to bring him back. I did CPR and mouth-to-mouth. I woke T up and we both tried while crying.
Neither of us really slept. We held each other and cried all night. And in the morning, we did it again.
I somehow knew this was coming. I had pain in places he hurt. I kept having nightmares. I kept thinking what would happen if one of them passed and it was always Oreo in my thoughts.
The nightmares are gone, but I’d keep them if it would bring him back.
On Wednesday, we brought him home for the last time.

 

I love you so much, sweet Oreo. You brought so much love and laughter into this home. You grew from a scared and worried boy into one of the most trusting and approachable pets I’ve seen. You were so amazingly sweet and kind. Even while you were in pain, you were focused on your buddy, on being happy-go-lucky, and on love.
I will miss you every single day until you welcome me over the rainbow bridge.

 

“Who lives, who dies, who tells your story.”

Posted on by Grayson

A line from the play Hamilton asks: “Who lives, who dies, who tells your story.” What do you want your legacy to be?

Let me tell you what I wish I’d known
When I was young and dreamed of glory
You have no control
Who lives, who dies, who tells your story
With Aunt Brenda passing and having the ability to spend time with my fellow health activists, this was already on my mind.
It’s a part of why I’ve picked up my meditation practice again and why, although I’m busy, I have more free time.
Thanks, Quirk Books!
I want to change the world for the better for everyone BUT I also know that it isn’t fair to potentially neglect my loved ones in order to do so, actually thanks to Hamilton.
Thanks, Giphy!
I’m certainly not talking less, but I am smiling more.
Thanks, Giphy!
I’m still getting the job done, but I’m taking into account some of the things that Hamilton should have listened to.
Thanks, Tumblr!
I’m doing things in a more focused way, too, which leads to more dancing.
Thanks, Giphy!
Thanks, Odyssey!
Thanks, Odyssey!
Thanks, Odyssey!
Anyhow, back to the telling the story bit.
Thanks, Giphy!
I am not naive. I know that I haven’t necessarily made friends of a million people. I’m pretty inflexible where my values are concerned (especially regarding ableism, racism, sexism, classism, etc).
I’m proud of that.
Thanks, Odyssey!
I’m proud of standing up for others.
I’m proud of helping patients navigate and letting them know what physicians end up dealing with.
I’m proud of being cloyingly sweet until I’m not.
I want these things to be my legacy. I want people to recognize how important it is to stand next to your values, to advance your cause without stepping on the causes of others, to help without doing harm.
I know that I’m a hippie, but hear me out:
We as patient activists and advocates have a unique shot at being able to help both sides understand the current state of healthcare and provide motivation for change. We have the ability to erase the barriers and silos, not only in healthcare as a whole but also in our online communities.
I have a shot to make the world better, not only for patients with my illnesses but for others.
Thanks, Odyssey!

 

Breast Cancer Sucks

Posted on by Grayson
Often in the chronic illness world, we get upset at the things that cancer patients may get a pass on that those of us with other invisible illnesses don’t.
I have had the ability to know strong women fighting cancer in my life from my cousin Sara to friends. The only difference is that they have all survived.
Aunt Brenda did not.
Brenda and her Tim at our wedding
She spent the better part of my time in the Schultz family battling breast cancer. She kicked it to the curb once, only to have it come back.
She had periods of time where her fingernails were falling off and she even had a stroke.
The thing about Brenda, though, is that she always bounced back cracking jokes. She was, up until the last day I saw her, always the life of the party.
It might be easy to assume that the party has ended with her passing, but I know she’d be pissed if we said that.
This afternoon, friends and family will get together and drink in her honor. I’ll definitely throw one back for her.
In the guinea pig parenting world, we talk about our loved piggies crossing the rainbow bridge to fields of hay and snacks. If that heaven exists, I’m sure Brenda is trying to construct piggie bathrooms and explaining why that’s better than going everywhere.

 

Death

Posted on by Grayson

Death is a difficult subject to approach for many. I think a lot of it has to do with beliefs or fears about what happens to us and the loved ones left behind when we pass.

Last October I was lucky enough to visit a medium. It was an interesting experience. I’m unsure how much some of the changes the medium asked me to make have really improved my life, but the visit gave me a new outlook on things – and helped me feel more comforted by the loved ones I’ve lost, namely my great-grandma Katie Mae and Laura. They didn’t have much to say via the medium because, as it turns out, they communicate directly with me a lot. Laura shows up in random butterflies when there shouldn’t be any, and grandma gives me random hugs and smells we loved.
If you’re thinking about seeing a medium, make sure to prepare.
A mortician recently wrote a piece on why it’s important to start thinking about death early on – and why death isn’t something to be feared… though some things associated with spreading a loved one’s ashes somewhere could be.
When I die, I want my funeral or wake to be a party. I want people to enjoy each other’s company and love each other. I love the idea of incorporating an ice cream truck or my favorite cocktails into that supposedly somber day. The last thing my loved ones need is more mourning and grief displayed publicly.
And if I die before Theron, he’s gonna need love, hugs, dad jokes, and support.

RA Superbitch

Posted on by Grayson

I found out about RA Superbitch’s passing a few days ago. I did not know her all that well and we only had contact a few times, but she was so inspirational. She stood for strength and the ability of someone to handle some of the most difficult problems one can be handled in life.

I think that it’s hard to deal with anyone’s passing, especially someone that you looked up to. I was shook by news of her death. I knew she had not been well, even for a spoonie, for a while but I don’t think anyone in the blogging world expected her death. Or the two recent suicides from others suffering from RA in one of the support groups I’m a part of – RA Chicks.

Death cannot always be looked on as horrible though. I think the reason we see that is we are selfish. We are angry that we no longer have that person’s presence in our lives – and sometimes jealous that we aren’t the ones relieved from pain. At least, I found myself thinking that, and I don’t think I’m the only one.

This Isn’t Helping

Posted on by Grayson

So just about every morning, I hop on the computer and do a news search for rheumatoid arthritis. I like to keep up to date on medicines being developed and new discoveries… Part of me secretly thinks that there will be a cure and I’ll find it via Google instead of the news for some reason.

I used to see obits with one or two really old people who had RA, with little mention of how the disease affected their last years. Lately, though, I’ve been seeing a lot more stories on younger people dying due to RA-related complications…

Like Jim Amos for instance:

… lost his 27-month battle with an ugly strain of rheumatoid arthritis. The autoimmune disease crippled his lungs, left him a prisoner to the oxygen tanks that kept him breathing and finally took his life.

So this man was pretty young, considering, and died because of lung problems? And he only had the disease for 27 months?

What the heck???

I wrote a post a few months back on the worst things that could happen – I did investigating and found serious issues like lung problems, but not death. Yet, it seems as though more people are dying from complications of their RA. Why? Is it just a misdiagnosis?

I’ve been having more lung problems lately, which I’m sure is making me freak out a little more about this particular story. I do have asthma as well, so it’s hard to say which issue these problems are related to. I’ve had this disease for basically my entire life, and was never told that this could happen. I find it alarming that this is a possibility for those with RA – to die?

Cue panic attack on dying and what happens after death – not only to me but to everyone I love – in 5, 4, 3…