I don’t feel like writing here today.
I can’t stop sleeping, which is exactly what I need. I took a full Xanax last night which I almost never do. But I’m so desperate for a long, heavy sleep, I did it. It makes me tired the whole next day which I opted for so that I’d keep myself “down” today.
I have such a hyper personality that it’s challenging for me to hold myself back. I want to do SO many things before I die! Which I think we can keep at bay for awhile longer, now that I have my calorie intake steady again and better IV nutrition on the way. And juicing! I think my system has slowly allowed me to incorporate that in.
I’m still aware that my time on Earth is likely going to be short. There’s so much I want to do! So many words that want to be said!
It’s important that I reign in my urge to get shit done while on the fluticasone drug that is a bit of an upper. It’s not in the same class of steroids as prednisone which REALLY jacks you up. I remember when my uncle was on prednisone when he was going through chemo many years ago. My aunt would find him working in the garage at all hours of the night. I don’t remember being super hyper when I was on it but I’m sure I was.
Another friend said she enjoyed the energy it gave her to clean!
Just like any stimulant, sometimes it needs to be countered with a depressant. This is why some culinary peeps (not all! My colleagues weren’t into this scene but it’s definitely a thing) end up partying so hard. After a long, hard shift, it’s hard to “come down” so might as well keep going! Then you need something to knock yourself out. It’s a weird phenomena. I was surprised that so many people were surprised that Anthony Bourdain struggled so much.
The culinary field doesn’t attract people who want a really, really steady regular work day - more so in the restaurant world which I didn’t work in, most of my friends are teachers, stylists, writers, etc. But still, the world of freelance is not for the faint of heart.
That’s why it’s especially irritating when dudes that have never started their own business and have been only “paycheck people” try to tell me how to run my business. Drives me nuts. They’ve never taken any real business risks but still assume they know more than me. If I want advice, I’ll ask for it, thank ya very much!
Now, I have to force myself out of bed. Then once I get going, I feel like I have to get as MUCH done as possible before something bad happens to me or my dad and we are sucked into hospital land or, my stomach twists again, or or or or…something I can’t anticipate happens.
It’s a real mind fuck.
None of this is easy when I already have that tenacity thing I got from my dad. He and I can push through extraordinary pain (he has no stomach and most of his colon gone, but rarely complains about pain - the dude did three Ironmen competitions! You can’t be whiney and do shit like that). We have a lot of stamina.
So if I’m not forced to stop, and I’m on a medication that adds some energy - how can I tell when I really need to stop and rest?
Often, I don’t know how truly fatigued I am until I get into bed and then I can’t leave for a few days which is what it’s looking like now. I really wanted to run a couple errands, maybe see friends today/tonight.
This weather is kicking my ass, on top of a hugely stressful week.
I took last night off from my “routine” so I really should eat some eggs tonight and stretch my back at some point today. If I’ve slept a lot, this is usually the time of day (afternoon) that I want to get UP and start moving.
But a friend just stopped by and the whole time, all I could think about was getting back into bed.
I may need to do a no-eggs-no-routine day again today to compensate for the crazy-ass week.
I’ve been able to keep my weight steady now for a few weeks so I feel like I can get away with that.
I’m sharing a photo of my mail because it was such a huge pile and illustrates the massive amount of work medically fragile have to deal with in this fucked up country. I switched my Medicare supplement plan from United Healthcare to Regence last month so that’s why I have two different companies mailing me shit.
A large stack of mail is not unusual for me. Thank goodness, my mom helps me with this piece.
I feel bad, though. My parents have their own shit. I am so worried about my dad. I know he is SO strong. But he is just getting so skinny. And they had to stop the immunotherapy for his lung cancer. Did I even share that here? I know I didn’t on FB. Needed time to process it.
Is he dying? Like for real this time?
I can’t wrap my head around it. I literally can’t process that possibility.
Not only would I be so incredibly sad to lose my dad. But I’d also be so fucked survival-wise.
Nope. Not going down that thread in my mind today.
I’m so glad I started blogging here when I did, even if it’s just for me to process everything happening to me.
It’s REALLY good for my mental health to get this OUT of me.
I’m realizing now, it really does give others an opportunity to witness all the little shit and big shit and random shit that a medically fragile person has to cope with while living in this fucked up country.
Dealing with massive amounts of paperwork, being overcharged for drugs at the pharmacy, having a doctor office fuck up my PICC line, dehydrating to the point that I need 3 liters of fluids in one day. Two long doctor appointments with integrative docs that thankfully believe me - BUT one of their medical assistants said something super inappropriate regarding my orientation during one appointment - my driver/friend was appalled. THAT ALL HAPPENED JUST THIS PAST WEEK.
Let’s add in recording two podcasts, getting space at home ready to do SOMETHING whether it’s a business thing (if my dad doesn’t make it…I’ve got to have something going - I keep throwing noodles at the wall, hoping SOMETHING takes off and allows me to generate income) or improving my mental health remains to be seen.
I realized this week that people have a hard time believing how sick I am due to how fucking productive I can be while unwell.
I can see how that would be baffling.
Would be nice if we lived in a culture that assumed I’m doing something special and keeping myself alive rather than assume that I’m making shit up.
That would be lovely.
Ok, I must shut my eyes. I really want to start writing more cohesive pieces here and elsewhere. But that’s for another day. For now, I sleep. Catch up on Jane the Virgin - I’d say it’s one of the most feminist shows on regular TV - but people will be dismissive - and when I say people I’m usually referring to men who often dismiss shows with female protagonists that aren’t cops or killing people. More on this later - I’m so ready now to start really waking people up. The more dense they are, the more it’s going to hurt. I take no pleasure in causing others pain. But it’s part of the waking up process, I’m just the messenger. Too many people are being hurt by others inaction and denial. They don’t get to stay curled up in their cashmere lined cot in the middle of a war zone while we all suffer and the human race and planet are destroyed.
If anyone is even reading this blog and they are male - I recommend starting to watch TV shows with female leads who are not cops or killing people, listening - actually listening - to the lyrics of the more feminist singers especially women of color, reading memoirs by women, paying attention to the things we say. It’s so irritating when people - men and women - say “what? I didn’t know it was that bad?!”
It’s because you’re not really listening. The information is in the computer we can hold in the palm of our hand!!
We can all - and I’ll be calling out the white women at the top of the food chain who aren’t doing their part, don’t worry dudes - work at opening our minds by expanding what we are exposed to.
I’ve personally really enjoy stand up on Netflix that’s not white dudes - it’s both entertaining and helps wake up the mind. I also love the show Dear White People. The writing, acting and filming style are stellar. Even the format rocks. Each episode is filmed from the perspective of a different character. Oh, and the fashion!!! Each person has such a unique look, love it.
I love how this art is waking people up in a way that’s informative, but also super entertaining. That’s what I want to do! Wake people in a more subtle, hopefully entertaining way, and then give resources and ways to get involved.
Damn the world is falling apart fast.
The infection that burrowed underneath our national wounds is leaking all over the place.
The medically fragile and children - because they are essentially fragile since they are small and not done growing so if they drink contaminated water or get locked in an ice cold cage, they can be hurt badly.
This will only get worse as it ripples outward to the rest of the population. But these fragile groups can’t wait for the people at the outer levels - who are carrying on with their lives that are NOT in a war zone - to wake up on their own.
They need to be slapped awake now.
I’m done being shy or scared to do this when people are literally dying while so many others….
I need to stop. It’s not good for my mental health to go down this line of thinking. I start to spiral when I think of being surrounded by people that have SO MUCH.
The south. Omg. We already have a population growth problem in the Northwest. It’s not going to get better as people flee the red states.
Abortion bans only hurt poor and now middle class people.
Rich women can find what they need and afford it.
Abortion bans are a class issue.
I am so infuriated about that but I’m so weak right now, I can’t afford to let myself even feel the anger.
I don’t know what’s worse.
Getting this pile of mail.
Or the inevitable day when they just stop covering me like they did Matt Cortland (a medically fragile activist on Twitter who found out from his pharmacist that he was dropped from his healthcare plan this past week - it’s reinstated now but wtf? So. Much. Stress.). And the mail stops coming.
I’ve got to get so many things in place before that day arrives. Which, of course, Ables pat me on the head and tell me: that won’t happen. And then go back to doing nothing to actually help! When my activist friends reassure me, it feels…well, reassuring.
When people who don’t do jack shit patronize me…well, it’s a good thing I’m often too fatigued for my temper to flare. I think being fatigued makes me a better human being. I have to choose how I react more carefully.
Ok I really need to stop writing and shut my eyes.
My podcast seems to be doing well. I’m nervous to check the analytics on that. I’ll do it with Sarah. I think my episode on self-actualizing with Paula got a lot of hits! She is really good at social media and marketing so it was really wonderful that she supported my project. I’m also proud of my last episode called Therapy Works where I talk about how therapy helps me.
It’s really lovely when ables “get” that I’m trying to survive here - and not take away their piece of whatever pie they’re worried I’ll be taking.
I DON’T WANT ANYONE ELSE’S PIE.
I can invent new pies at any time. Don’t need someone else’s pie.
Ok signing off. I may even take a nap after sleeping for 12 hours….
Old lady day for sure.