I don’t feel like writing today. But I also like forcing myself to be accountable to this blog. Keeps me tethered to something that feels like “work” which is important for my mental health.
I’m trying not to wig out. I’ve been through so much scary shit these past years and I keep thinking I can’t possibly be super terrified about a new thing, and then lo and behold, I can!
I took this photo last night. The mottling seems worse at night. I stopped putting heat on it the last 5 days - which is a bit tortuous for me. My hot water bottle castor oil packs provides a lot of relief. I don’t think I’m going to eat eggs today. Just stay in bed. My body is wrecked. I think I ate 11 eggs this week? Not bad. Though not obviously enough to keep an entire body going.
Something about that 5 year mark…it’s like my GI is like biiiiiiittttch, you pushed us FAAARRR now we need ALL the attention.
A part of me does feel like I gave too much to the country and saving others instead of myself. I mean, It’s not a feeling. I actually did do that. I still have so many people around me in denial. About so many things.
I get it. Waking up is super painful. Hard on the mental health. To realize we were unaware of how oppressed a certain group really is. To realize the country is in much more danger than we wanted to acknowledge.
To realize my health is sliding downward.
It’s very interesting how many people want to reassure me - when really it’s them reassuring themselves. It’s too painful to acknowledge to themselves how sick I am - so they say things like well, this or well, that.
It’s not for me. It’s for them.
I also get that. Who the fuck wants to acknowledge that I might not make it?
That I did so much work instead of focusing on my health.
In some ways, I’m almost too tired to be scared. That’s not good. I know that. I need the fight. The fight is what keeps me going. The desire to prove “terrible prognosis” wrong. The desire to get well enough to fight evil in DC. The desire to experience LIFE.
The fight feels very, very tiny inside me. Like a tiny pilot light. I’m worried it’s going to blow out and then there’s nothing left to do. Doesn’t matter the health of a person if that light goes out.
How can I keep at this? How can I keep barely being able to eat and look for doctors and manage all the data and feel THIS shitty. Gosh I keep hoping it’s still the flu but the longer it goes on….
I just feel cruddy so much of the time. How can I continue if I’m barely able to eat, have pain, so little energy and feel flu-like symptoms?
What is the point?
Then I think of how many things I still want to do. So many things I still want to say. I want to watch the kids grow up so badly. I barely see them now. People think they’re protecting their kids by removing them from sickness and death.
All that does is result in an entire culture who is afraid of sickness and death.
Guess how that works out?
Not so good when it’s YOU that gets sick or is dying, I can promise you that.
People get so weird about these two things that are natural parts of life. Kids don’t see farm animals being slaughtered or people dying at home like the old days.
Sickness and death are these horrifying things that must be hidden. Secrets.
I’m done with secrets. That’s partly why I feel like sharing SO MUCH on the Internet. Look how much has happened from the #metoo movement. The POWER of sharing STORY and TRAUMA in a post! The validation, sense of community, not feeling like these bad things are eating us alive.
The movement is coming for medical patients.
I feel bad for people following my story on Facebook because they get so so upset when I share just ONE thing that’s happened to me that week. I have dozens of sleights, dismissiveness, rudeness, cluelessness, over and over, I take the hits.
The hits used to make me feel strong. I took them and wadded them up inside me and converted them into fuel for the fight.
Now? I can barely think straight. Energetically, I depend on others so much - to think, to manage details, to drive. I’m limping along the marathon route, friends coming in to hold me up.
The scary part is I can’t see the finish line. All this time, I kept thinking I could turn some of this around. I really did. I’m arrogant! I will admit it. I figured: I can fix this. I can always find a way. Because I always have.
I didn’t anticipate them fucking up the geography of my belly so bad that the alternative stuff wouldn’t be very effective.
The intestines are a tricky slippery fucking organ system. Why is there so much funding and research for fucking cardiac issues (take a wild guess there - who are the ones who have the most cardiac issues….?).
When I was leaving San Diego, I heard about a HUGE wing for cardiac being built by a bunch of donors. When I had my bowel obstruction, I was in this shitty little room…ugh it was so gross.
I hate hospitals. Have I told you that yet? Sigh…
Now I’m wondering if I should utilize my high school friend’s contact at Johns Hopkins and somehow fly this body out there and have them run a battery of tests. Seattle just isn’t doing the job. I should have been admitted to a hospital this past week.
My home nurse who I love said she was surprised they didn’t do more for me. But then she said just last night her wife took her mother in law to the ER because her potassium was above 6 and her blood sugar was over 400 (both very bad). They gave her medicine and sent her home. My nurse worked in ICU at UW for 10 years - she is a VERY smart practitioner. I feel very lucky to have her on my case. A lot of the really good nurses prefer home care because it’s more flexible and less stressful than the hospital setting.
She is the one that texted me at 11pm last weekend saying I’m worried about the mottling. I would never have gone into the ER if she hadn’t said I should. ICU nurses don’t “get concerned” over small things. Maybe I forgot to share that part on FB? I can’t keep track of anything anymore.
Anyway, the reason I went in is because of her. She said that if her mother-in-law had been in the hospital and had those numbers, she would have been transferred to ICU.
They sent her home.
The system is seriously fucked. It will be us - the medically fragile that will be hit the hardest.
It likely doesn’t matter much if I did the activist work or not. Things were going to go downhill anyway. Nobody would have taken my case seriously last year when I looked healthier - that was always going to be the issue.
They wait until you’re nearly dead and then say oh well let’s try this, and move like molasses.
I’m going to sleep on the Johns Hopkins thing. But I’m thinking that might be the next major move. Oh Seattle….
Ok I just got text from volunteer to check my email. I have too many appointments next week and she is worried I won’t be able to do it all. But I don’t know what else to do.
We get chewed up and spit out in this system.
Eeeks, I just remembered a terrible dream. I don’t have a lot of bad dreams. I figured out how to lucid dream when I was really young. When I was about 8 years old (?) I dreamed I was on a swing that kept lifting higher and higher and a creepy lady was saying jump, jump and I was so scared and then I remember this even now so clearly. I said to her: wait, I’m asleep. Fuck you bitch and I jumped. Well I didn’t think fuck you. Well, come to think if it I may have. I started cursing really young. I do remember feeling empowered. I jumped and woke up. I sometimes have nightmares but usually I concentrate really hard and think THIS IS A DREAM WAKE UP WAKE UP. (That sounds familiar doesn’t it!!? WAKE UP AMERICA.)
Every once in awhile, though, I have a really scary nightmare. Mine are more like creepy than being chased. I’ll dream that I’m paralyzed in my own bed and hear whispering. I had a lot of those after I was robbed in that UWS apartment. That people were coming in my apartment whispering and I can’t move. I get more of that than the active nightmares like being chased. A lot of my friends have dreams where they are being chased.
Then there are the ones that are too creepy for me to make a decision within the dream. Even when I know it’s a dream.
This dream that just flooded my brain was CREEPY AF. From the past year. I was on top of a submarine and it started going underneath and water was coming over the edges. There were all these workers running around with hoses. I remember feeling really scared. I knew I was in a lot of danger. Suddenly, I got sucked through some long slide/tunnel thing and then it was black. I woke up (in the dream) in the submarine lower part - I was in this dark workshop and everywhere I look, everyone looked like Frankenstein. They had patched together pieces of their bodies and stitches everywhere. I looked down at my arms and saw stitches everywhere. I was too scared to look in the mirror so I didn’t.
Nobody was really talking. Each person was just working on their own lab project. Stitching skin together, looking through microscopes, working, not a big fuss going on but I was not thrilled about being there.
I knew I was stuck there. That I would never get to leave. I was stuck underground in this weird lab for the rest of my life. I sort of knew I was dreaming but kind of felt like this is very real. It was a super strange feeling -it’s why the dream stuck with me so strong. I do remember very clearly thinking: I’ll do my time here and then I’m out. Then I woke up.
Sometimes I will admit, I don’t know what’s worse. Dying or living in a broken body in a medical system that can’t or won’t help. It’s hell. It’s definitely hell.
Sigh, time for me to rest. One more email to volunteer and then I get to rest. So. Much. Work. Staying. Alive.
If you’ve read this far, thank you for listening. I don’t want to know if people are reading or not. I don’t look at analytics on podcast either. Doesn’t matter.
For the first time in my life, I’m just doing FOR ME. Feels good.