My body hurts. I didn’t want to write here. Then I started thinking about how these are the days that people don’t hear about. The days where I crawl into bed after an appointment - I got some tryptophan in my IV bag which makes me sleepy - put on some music and doze off.
So much of my life resembles an elderly person. I don’t know how to convey that to the doctors, that I’m so tired of not being able to eat enough food, so tired of not being believed that things are worsening.
I can tell what’s going on with my body. I can feel how things are going. I’ve been paying close attention to it since I was a young woman and had the inflammatory bowel disease.
I know when it’s not good. I remember in August 2013, I thought to myself: do I have cancer? Why am I so tired? What’s going on with my energy levels and my skin?
I even went to a gyn appointment that summer to complain of painful periods.
Blew me off.
It was just a few months later, they found the cancerous colon polyps. That winter, they found the masses in my ovaries.
I really, truly believed I could go back to being a regular person. I think so much of my struggle all this time has been because I kept fighting to get back to a world that I can no longer ever enter.
I knocked and banged on the doors. I begged. I pleaded. I threatened. I sobbed.
But I never get to go back.
There are many days where my entire body hurts. Like today. It kind of feels like the beginning of the flu - when you’re not sure if you’re getting sick or not - I feel that A LOT of the time. I’m never quite sure what to say when people complain about having the flu to me. I’m always sympathetic, of course, because being sick SUCKS and I do feel bad. But I can’t help but think “at least you know it will end.” I’ve had the flu a few times since I got back to Seattle. I rarely tell anyone. One friend was surprised about that and asked why.
I told her, “why would I mention something that lasts maybe 10 days? When, as of now, I have to spend YEARS dealing with pain and other issues?” Ten days feels like a blink to me. Often, I don’t even realize I’m sick for a couple of days - because I already feel so shitty so much of the time.
The most I’ll take is Tylenol during the day.
I need every bit of cognitive focus to make sure I’m making the necessary appointments and remembering which labs need to go where, and whether or not I took all my supplements and pills, and to decide how much IV fluids I should give myself, and whether or not I can get away with eggs, and….and…and…..
It’s a surprise to a lot of people that I don’t take anything stronger. Pain meds slow down the gut! That’s the last thing I need.
I’m going to rest now before I interview someone for my podcast. As soon as that’s over, I’m definitely passing out. It’s not looking like I will end up eating any eggs today. That would require getting on the treadmill later and doing my stretches. I just don’t have the energy for that. Let’s hope the IV nutrients are soaking into my body and making up for the lost eggs.
Need to shut my eyes now.