I gave myself 3 liters of fluids yesterday up until about 3/4am.
I’m giving myself one right now.
I’m dehydrating very, very quickly these days.
AND I started the fluticasone on Monday.
I’m trying not to panic. My nurses say they have patients that get 3-4 bags per day so I know you can live like that.
But what the FUUUUUUCCCCKKKKK is happening to me? Why are so many things worsening? How can I stop them from worsening better? Is it even possible to improve hydration and gut issues? Am I dreaming?
Or, do I rely on my old belief system that the body WANTS to heal, and given the right conditions and interventions, it WILL heal.
If only they hadn’t gutted me so badly. Geography and scar tissue are different beasts than inflammation or auto-immune problems. Nerve damage…
Ok, I’m not going down that road today!!
Can you feel how frenetic I was in my post yesterday? That’s partly the medication. Like I need to be jacked up at ALL. I’ve always been drawn to depressants, never stimulants. Caffeine and cocaine have never had any appeal to me.
Mellow me out, man!
(Can you tell I started my weekend already?)
OMG this week was SO bananas! I can’t BELIEVE how fast this kid is working. Megan found this painter who is amazing.
It all happened so fast, I didn’t even think through what kind of whites we needed.
I mean, literally, I was having a nervous breakdown around 10 days ago. Of course, I’m so scared about my dad. I don’t know why I can handle my own stuff better. But when he isn’t doing well, I really start to lose it. I’m used to him being strong, and we’ve both had so many hits the last few years that if he goes down, what does it mean for me?
People point out that he has a few years on me - they had us super young so not a ton of years - and I get that. I also have a lot of disadvantages though, even though I have some benefit from being younger.
He is a really strong dude. His dad was full Greek guy - first generation - who was chopping wood at 86 years old shortly before his death. My Papu was volunteering to help people younger than him at the old folk’s home! Legit story! Those Greek genes are no joke.
We need them to counter my Bubby’s Latvian pale / more sickly/ European genes.
My dad has done three Ironman competitions! He’s been running, biking and doing Crossfit now for seven years WITH NO STOMACH.
It pisses me off so much that it was a doctor’s ERROR that landed him in his current situation. He and I both work so damn hard at maintaining strong bodies to counter this genetic disorder. And I just don’t feel like the medical establishment - the majority, I mean, some individual docs are awesome - appreciates how much work it takes to make up for something they did wrong.
Anyway, I am worried about my dad. One way I handle my anxiety is starting a project. Even if I’m not feeling awesome, even if I’m having to get used to a new diet with less eggs which means I rarely feel full these days - it’s a horrible feeling, never feeling full - and even if I have no idea how much of a future I have, I have to launch new projects.
If I start a new project, then I can’t die! See? See how that works? When people support my projects, they are essentially saying they believe I’m going to stay alive too.
Megan knows this, she knows I will wither away if I have no real “work” space or project or feeling like I am still part of the “regular world.” But yet, I’m trapped at home so much of the time. I’ll definitely be stuck at home a lot this summer. I feel terrible in this weather.
If I start a new project, then I have a future - maybe even some GOOD in my future? Maybe? I won’t be just miserably running to doctor appointments, sleeping and only getting a handful of hours to rest / relax.
If I start a new project, then maybe I won’t feel like a loser living in my parent’s basement.
I have to reframe so many things so much of the time.
If I’m creating, then I’m not dying.
There are a lot things a person must do to comprehend the kind of reality I live in.
It is very difficult that so many able-bodied don’t understand that I don’t experience the reality that they live in. I live in a very scary, stressful world where people are dismissive, and even cruel to people who are sick and poor.
It’s been very depressing to discover that a LOT more people have unconscious bias around poor and sick people than many would like to admit to themselves. A lot.
Nobody thinks they “hate” the poor.
A lot of people certainly ACT like they hate the poor. They can tell themselves whatever narrative they want about themselves.
The proof is in the treatment of actual poor, sick people.
It’s there right in front me whether I want to see it or not.
The point is: I need to find a fucking way to make a living and I am done with people in much more privileged positions not realizing how dire it is for me to figure this out.
I’m trying to figure out how in the HELL, I can make a living from my bed, from the toilet, from my house.
If my dad doesn’t make it in the next year…or even two…I’ve got to have something in place. I hate being dependent. HATE IT HATE IT HATE IT.
I like making my own way in the world. I’ve been working since I was 10 years old - I had three jobs! Kind of haven’t stopped since. Just don’t get paid for a lot of the work I’ve done and still do.
I feel very, very lucky that Megan understands me so well and knew that a paint job was literally the best gift ever. To give me space where I can CREATE and do BUSINESS is to give me LIFE and SOUND MENTAL HEALTH.
I can’t believe it happened so fast! We talked about it last week and they are finishing up now. I didn’t realize we’d end up painting the second room, so I’m thinking about doing filming in there. A studio! This house is where my three siblings and I grew up (partly, my brother and I were nearly out of the house when we moved here) because my dad stubbornly refused to move all these years. Might as well do something with it.
The treadmill room can now be a meeting place. I know I’m SO so lucky to have any home, let alone a lovely place in this beautiful area. I just…miss having my own place. And I haven’t felt comfortable inviting people over with this space the way it is. Plus, there is an opportunity here with Seattle rents skyrocketing. So, I feel lucky to have square footage to work with.
This way, if I’m trapped at home, maybe I can be creating cool content, holding support groups! artist salons! classes for teens! empowering workshops for women!
I can’t just lay in bed. I will lose the will to live if I do that.
It’s already hard to hold onto as it is.
It would be a dream to live in a world where the majority of able-bodied were careful and mindful of the mental health of people who are struggling so much with pain and illness and fear of death and the horrible medical system.
What a world that would be.
I’d like to stick around and see if humanity can pull this out of their ass.
C’mon Humanity. I’m betting on you.
Let’s do this.