Speaking with a hospice nurse on the phone: Nurse-what did you say your birth year was? Me-1992 Nurse- oh! (Beat) You’re so young. Me- yeah Nurse- I’m so sorry Me- yeah. Me too #DyingSucks #YoungPeopleDieToo

Really struggling with the fact that all hospice literature is written for elderly people. It sucks but young people die too and being terminally ill in your 30s is already isolating enough.

Julian Patatas would like to teach everyone how to handle ICE

I’ve been quite sick the past few days. Now all the friends in my D&D are snowed in and want to do an impromptu session. I said of course but may have to keep it short as I’m unwell. I was told to roll a medicine check. A nat 3. Yeah that feels about right.

He’s so happy.

Good morning from Julian Patatas

I forgot to lock my walker before laying down for a nap and my cat pushed it to the other side of the room. Now he’s just laying here next to me all sweet and purring like he did nothing wrong.

Does everyone’s cat wake them up at 2 am because they want to play in the sink and go for a walk outside or is that just my boy’s special brand of weirdness? I consented to turning the faucet on for him. But a 2am pleasure stroll is where I draw the line.

I cannot thank @dimension20.bsky.social and @brennanleemulligan.bsky.social enough for inspiring to get my old D&D group together and create a character that resembles me. Also, today was Juju’s first D&D experience and he really wanted to help roll my stat block

Good morning and Merry Christmas from Julian Patatas and his new best friend, Pup (my dad’s dog)

Good morning from Julian Patatas

Hello from this handsome boy

I’ve been rewatching @dimension20.bsky.social Unsleeping City and for some reason desperately craving baked spaghetti (iykyk) I think it turned out pretty well considering I’m allergic to tomatoes and can only cook with a microwave and air fryer.

Good morning from Julian Patatas

Little monster got to play the big monster tonight! He’s loving how many cat toys this @taskmaster.tv advent calendar is producing. Thank you @alexhorne.bsky.social and team for helping to make our first Christmas together so magical. #JulianPatatas #TMDay18

I put my spoon down for 2 seconds to check my phone. I should know better by now.

We went to see the Christmas lights down town last night! Everyone wanted to pet Juju. Who can blame them?

Good morning from Julian Patatas

Things I did not expect to have to say to my cat… No, sir, you may not play with broken glass! Please ignore the shelf and lamp shade on floor. He is Julian destroyer of anything hanging on walls. I have just given up at this point.

I’m coping with the fact that I’m very sad and sick by binging a massive quantity of @dimension20.bsky.social But, also, this clip is a very accurate representation of how quickly I get pneumonia and will be my default response the next time someone asks to hang out even though they have a cold

As a wheelchair user this might be one of the most relatable clips of @dimension20.bsky.social ever. Genuinely, feels like that is a lot of walking to me.

I normally only get my flu shot when I’m fully stable, but cases are rising rapidly in my area. So I went ahead and got it today even though my respiratory function was only 75% back to baseline. I know it was the right decision, but I’ve plummeted back down to like 30% and I feel like I’m drowning

Things have been rough. So I spent the day doing some art. This quote from @dimension20.bsky.social Neverafter has been on my mind a lot recently. Dying sucks and it often feels like I’m barely keeping my head above water, but I am grateful for every day and all the memories I’m able to make.

Starstruck (@dimension20.bsky.social ) is SciFi, but this line is all too real. “You rent your ability to live” Although, @brennanleemulligan.bsky.social charges much less than the US. My ventilator alone is over $5,000/month. I don’t want to think what my DME would charge for a full cyborg body

On today’s episode of you may chronically ill if: the new x-ray tech is surprised you’re so good at getting chest X-rays. Also, I definitely have pneumonia again, but my lung didn’t collapse this time. So that’s good? If you need me, I’ll be in bed pretending I have a functioning immune system.

Not sure if I’m actually getting sick, still reeling from smoke inhalation (from catching my microwave on fire), or if my ventilator malfunctioning last night triggered a respiratory crisis. Either way breaking out the sick tea tonight and heading in for a chest x-ray and cultures in the morning.

Never a dull moment

Just starting @dimension20.bsky.social adventuring party now that I’ve watched up through Crown of Candy. I’m not sure if Lou accurately described the Hydra lifestyle, but he nailed Kacie and I’s sleep habits. The number of random quotes I’ve compiled from this show is wild.

This whole video is great, but 4:18-7:12 was genuinely cathartic. Leaving academia because of my terminal illness was hard. But at least I’m not Franklin. Dying sucks, but joking about it helps! Thank you @brennanleemulligan.bsky.social for not being afraid of dark humor youtu.be/1sp_I-XUxtU?...

3 weeks ago I was told Kacie had 2-3 weeks. She’s still stable and regaining skills everyday! Yesterday she got her favorite bone out of the toy box all by herself and started chewing on it.

Stroke perks! Today I learned that I’ve lost enough sensation on my right side that I can feel them put in an IV! All shot and blood draws will be on the right side from now on.

Kacie did her little happy hops again this morning for the first time since she collapsed nearly 3 weeks ago. The vets didn’t think she’d still be here but she’s still improving everyday 💕

My new aide insists on calling me Ms. Fox and it makes me feel so old. The nursing agency and med transport also refer to my apartment building as a facility. Am I the only resident under 55? Quite possibly. The joys of being 33 and actively dying are endless.

Being the human parent of 2 medically complex animals, I’ve learned to take photos and videos when one starts doing something odd. This morning Beany baby started coughing/gagging. Kacie went to check on him and this is the footage I actually got. I love that they love each other so much.

My little ginger babies 💕 Photos of my sweet Kacie Kay and spicy little Julian Patatas being cute and sleepy.

Setting up my nativity tonight and I can’t help but think that cow looks precisely packed to eat baby Jesus. This nativity is older than me. This has never been a problem before. #MangerDanger @thehornesection.bsky.social

Okay. But fur real what’s up with my animals? Julian Patatas has been an absolute menace all morning. Put on @thehornesection.bsky.social Christmas album to help Kacie settle for a nap and Juju comes running over and starts making biscuits on my lap. A few songs in and they are both mesmerized.

Kacie had a quite good day yesterday all things considered but has been restless overnight. I turned on @thehornesection.bsky.social and let their music work its magic on her. Now the only problem is she’s managing to take up the whole bed and I don’t have the heart to move her. 🐶💕💔

I don’t think I’ve introduced him here yet. This is my little foster failure. Julian Patatas. Named for my book series, Ender’s Game, and, of course, my favorite TV program, @taskmaster.tv We started fostering him when he was just a few days old. He’s a literal nightmare but I love him so much

Last Tuesday my sweet Kacie Kay fell out bed and became disoriented and unable to walk. Thursday she was diagnosed with an aggressive terminal cancer. She’s still eating (though she can’t chew) & drinking well. There’s no treatment but we have found a medication cocktail that’s keeping comfortable

Heyo Bluesky, my stroke addled brain genuinely forgot this app existed for a few months. What’d I miss? Who’s still here?

Things I didn’t expect to have to tell my dog: “Excuse me! I need my wheelchair back. “

After listening about 20 times, Kacie decided to show off her dance moves

10 years ago, I had to say goodbye to my mom and my best friend. It felt. Like life couldn’t go on without her, and I’m still not sure how it has. I hope she’d be proud of the person I’ve become. @thehornesection.bsky.social “grief” is my anthem for today. music.amazon.com/podcasts/7b1...

Found a secret accesible playground downtown this morning. Now time for a nap with Kacie before more shenanigans this evening.

Someone’s feeling much better after wasp sting and Benadryl hangover.

Woke from a nap to Kacie hunting a fly in our room. After an hour, I finally woke up enough to help. It wasn’t a fly. Managed to trap the wasp, but IDK how to kill it without getting stung. So we listened to “If I Were” as @thehornesection.bsky.social angry bee song seemed appropriate

She has my whole heart

Between the high pressures on my vent & my GI issues, sometimes I wake up in the middle of the night having swallowed so much air that stomach is painfully distended. Kacie has learned that if I burp at night it means this is happening, comes and gives the most gentle cuddles. I don’t deserve her.

Happy Horne Section ednesday everyone! Kacie and I are on the Nick Farrow ep of @thehornesection.bsky.social pod. Which is one of my favorites. And Kacie’s being such a good pillow. She always insists on staying by my head for a few days after a stroke-like episode.