One day at a time 3.23.19

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I reread some of these blog posts and I’m a little horrified. By several things. First, my writing is subpar. I’m leaving out words, my grammar is awful and I keep repeating myself in multiple posts (I’m blaming social media for my terrible grammar). And I feel whiney and complain-y throughout a lot of the posts.

Then again, my life is Hell so….not going to be too hard on myself about any of it. Whatever gets me through this chapter. This is one of the healthier outlets I could choose, so be it.

If I make an ass out of myself on here, who the fuck cares.

Best part about possibly being dead within the year? DON’T GIVE A SHIT ANYMORE.

Who the hell cares what anyone thinks. Or how many followers are reading or any of that business. So tired of a culture that worships such fake and superficial things. I don’t matter more or less than any other human on the planet. The worshipping of money and looks in this country…such a warped sickness.

And people act like I’M the weirdo for not caring about these things. And for wanting to spend my time helping people. Yeah I’m a real whack job for giving a shit about my fellow neighbors.

It’s like it’s all become so warped, nobody even realizes how abnormal it is.

I tried watching The Dirt about Motley Crue. I read Nikki Sixx’s autobiography awhile ago - back when I could read books from beginning to end without forgetting what happened in the earlier chapter. There is something liberating about living life on the edge.

Then I think of the people I’ve known who lived life on the edge and didn’t make it.

Where is the happy medium? Not totally succumbing to society’s pressures but also not living so hard that death is a likely outcome?

As a side note, I do find it interesting how much the 80s hair bands subverted toxic masculinity by wearing make-up, long hair and tight clothes. They took these normally feminine things and turned them into “rock and roll.” Their intense masculine behaviors like sleeping with so many women while also giving a fuck you to the “rules” of being a man is so fascinating. I’d love to take a gender studies class this year. I’m looking into auditing a class at University of Washington where I went to undergrad.

It’s so so beautiful on campus at this time of year. I think this is the week that the cherry blossoms blossom.I love the idea of being on campus, learning and being around young people who are open-minded. But I doubt it will happen. I can barely make it to my doctor appointments these days. I’ve got several events coming up that I really hope to make it to.

This depresses me the most. There is so much I want to do in the world! So much to learn! So much to see!

Here I am at 4:44 - ha! - laying in bed writing on my computer with my eyes half shut.

I feel like I’ve been on a merry-go-round for five years. The first year, it was moving pretty quick but I held on like it was a bucking bronco. See I got this! As everyone cheered me on. Fast forward to year six and the merry-go-round is going so fast that I feel like I blink and an entire month goes by. I remember I haven’t done a bunch of things that are supposed to get done. It took me 3 weeks to call a doctor back because I marked it off as “done” on my to-do list. When I searched for the appointment, I couldn’t find it in my calendar.

When I finally called the scheduler back, I had the entire message wrong. I did NOT get to see the new doctor. She was calling to make an appointment with my other doctor.

It’s so frustrating to be dealing with brain issues on top of everything else going on. I wonder how I can make it through this. If I can’t think straight, how can I possibly survive?

So many people are struggling with their own lives, trying to manage work, and kid problems and life problems and the outer world collapsing like scenes in the movie, Inception.

That merry-go-found is going by at such high speeds, I wonder if I’ll ever make it off. And if I do? Then what?

I guess that’s where I’m at right now. Even if I make it through this chapter, what’s next? A life living on liquids and powders? Do I do the TPN if I finally meet with people who will prescribe it? Is it too risky?

So many hard decisions. I feel like I’ve slowly been backed into a corner. Terrified that I’m going to lose my mind. That the people who have stuck by me will eventually leave.

That I will deteriorate to the point that I won’t recognize myself.

Maybe that’s why I like writing here. I feel like it allows me to not only process all this crazy shit happening - and try to make some sense of it. But it also allows me to stay attached to MYSELF. It’s such a strange feeling, becoming a different person at this point in life. It’s one reason I love staying in touch with so many people from my past. They help me feel anchored to my core self. They remind me of the person I was - the strong version that doesn’t take any shit. When I’m feeling so weak and scared, it helps me feel that other me.

Like there are invisible ropes attached from them to me, and I can tug on it and they reflect back a part of me that I’m starting to forget. That other person is fading for sure.

I’m currently texting Megan who is asking what I want to do. And I said anything. I just need to keep TRYING to get out of bed and do something normal like get tea or go for a walk. I haven’t done hardly any “normal” activity in too long now.

What if this is my life now? I think of the many people who lose function of significant parts of their bodies. Or limbs. Or get ALS. There are so many ways for the human body to change in a lifetime.

Somehow those people have been able to evolve to make a new life for themselves. I need to meet more of them. I think that being stuck so much in the able-bodied world isn’t good for me.

I’m getting to the point where if someone doesn’t know how to be considerate of my situation, I will just have to cut loose. I just can’t anymore. I have so much empathy for people of color and other marginalized people. People say so many odd things. My goodness, this world is tough if you don’t fit in! Fucking so bad.

Did I say completely clueless things to people before? Probably. Did I not spend enough time trying to understand someone else’s way of experiencing the world? Definitely.

Megan is going to pick me up. I don’t know how I’m going to get up in the next half hour, but I refuse to waste away in this bed.

I think of that scene in Orange is the New Black when the bank robber is dying from cancer. She was a serious adrenalin junkie in her heyday. So one of the other prisoner lets her drive her van off into a rocky cliff instead of dying slowly in jail from cancer.

I think about that a lot. I’m feeling less and less inclined to subscribe to society’s stupid fucking rules. I realize that to a lot of people, it looks like I’ve already done that. I do! But I care. I do care. I will admit it. I do think about what other people are thinking.

Slowly, that habit is dying. I simply do not have the mental bandwidth to think or CARE what anyone fucking thinks. They can get as close to death as I’ve been and see how well they handle shit.

I dream of so many things. I dream of making it to DC and doing something outlandish on the Senate floor. I dream of climbing Machu Picchu - damn it I wish I did that shit when I was so healthy in my 30s. I dream of going on an RV trip still! Across the country of course. Meet all kinds of characters. Write fiction stories for the first time in my life based on the people I’ve met and the interesting things that happen.

I feel like a fucking hamster most nights. Walking on that stupid treadmill, trying to get this GI moving. I miss engaging with the world.

Spring in Seattle. So beautiful outside. I’m dragging my ass out even if it sounds impossible.

I really hope this latest issue with fatigue abates soon. I was so spoiled for so long. My energy was like my brain - something I took for granted.

Hopefully, we can get a handle on the nutrient intake which could help. I hope so.

If only I hadn’t been such a ninny this entire time and pushed my story out further earlier, I’d have more of a chance of reaching some other experts. I didn’t want to do it. I still don’t.

One of the most maddening things about the last couple of years is able-bodied women being “competitive” with me. I’m like ok that makes no sense to be like that with a very sick woman living with her parents, but ok. There are quite a few that could help get my story out into the world.

Some of them have ignored my previous emails asking for help.

How many times can you beg privileged people to help you when you’re sick and scared?

The fact that ME, prideful Julie Negrin is crying and begging for help on the Internet doesn’t clue them in that something is truly terrible? That if they even just responded to my email, I’d feel less alone and scared?

Who does that. Who ignores a dying woman’s pleas for help. Who ignores a dying woman period.

We’ll see how the next few months go. I’m still so upset about the California trip. I feel like I fucked that up. And didn’t have enough people helping me make decisions about making sure I was being smart about it. I’m so good at pretending like I’m ok! I’m too good at it. We’re all such good actors under the Patriarchy, aren’t we? That’s why it’s so “shocking” when stories like those celebrities scamming colleges is not really shocking.

So much fake. So much pretending.

I can’t pretend to feel ok anymore. I guess that’s why it’s taken me so long to write honestly here about my actual day-to-day. It makes me feel both so naked but also SEEN. If people are scared off by what I write in here or anything I share anywhere, then it’s for the best. I can’t pretend anymore. It takes too much energy.

I see why old people just say it how it is! Who has the time to pretend to like someone? Or go to events that make us miserable or all the things we are “expected” to do as grown ass adults?

Sometimes I think it’s a blessing that my energy is low during these times. I worry I’ll blurt something out or do something totally bananas while at the doctor’s office.

You should have seen the look on the practitioners face at the ER when I finally showed my irritation. I held it back because obviously, I needed her help. And you have to be SO careful when you’re disabled and fragile person in the medical system. I mean, shit, they could cart me off in a straight jacket for real.

When she said the tenth thing that was so ridiculous, I lost it. I was MAYBE a New York Bitch 1.5 - I’m pretty low energy so I can’t get too riled up. Very low key in the grand scheme of things - but her eyes widened and she got all flustered. I’m like c’mon. My bet is they are paying her like $40k and she’s the only one who will do the job for such shit pay. The only reason I can imagine someone with such subpar triage skills would be working in an ER. Then they give the “stomach pain” patients to her.

Fucking system. READ THE PAPERS YOU’RE GIVING TO PATIENTS FFS. Takes 10 seconds. I wonder this when I see so much stupid shit on the Internet. I’m like how long does it take to Google something? Check on a fact? Read a few papers you just printed out while walking down the hallway (they gave me a patient education sheet that called me a child complaining about stomach pain - it’s absurd).

A part of me wants to take on those assholes in DC. The other part of me wants to leave humanity behind and live off the grid. Not deal with any more selfish ridiculous Patriarchal bullshit. Build a cool house in the woods, create a lab in a house so I can get my medical needs met. Grow food. Figure out a way to be independent of this whacked medical system.

Ha. I can’t even get to the drug store.

Sigh.

Ok I should conserve my strength for my outing.

If you’re reading this, thanks. Thanks for bearing witness to my fucked up life.

Much love,

Jules