I did not have a productive day today. I mean to get things done!
This is the most irritating thing for ME in this new life - and I have a lot of annoying things! I really like to be efficient and project oriented. When I can’t get shit done, it makes me feel like a slug.
I’m the kind of person that will literally never retire. I may not make a ton of money! (This bewilders so many people in my world but as long as I have the basics, I’m good.) But i will always be doing something. Maybe that confuses people too.
That I can be so sick and also doing things like this blog and my podcast.
I mean, I’d podcast the day I’m dying! Wouldn’t that be so interesting?? I know, so morbid. I can’t help it. I think like that all of the time now.
People keep asking me for an Amazon list so they can give me stuff. I feel so weird trying to explain that I’m not much of a “stuff” person and also, it just stresses me out thinking about what to do with it. I like having a small wardrobe now. I like having less clutter - wait, let me rephrase that - I ASPIRE to have less clutter. Mostly I have piles of paper with either my medical information or writing/podcast/video/activist/medical ideas - those are my categories I created for a filing system. Before my health worsened, I was typing them into a Google doc and organizing ideas for each medium - podcast, writing, etc.
Ever since the disaster of a trip to California, productivity has been minimal.
I hate it! I hate when I’m too tired to get shit done. I am so jealous of able-bodied for two reasons. Eating and being productive.
I’m trying not to worry right now. I hear something with my dad upstairs (ends up, he is fine, just had a coughing thing). I hate when he is sick. He is the strong one! The one that keeps me hopeful that our genetic syndrome won’t take me OUT. When I see him doing well, I think I can do that.
When he isn’t doing well, I get really scared, less confident. His immune system and GI system are SO much better than mine. But he’s got a few years on me! That’ll even the playing field.
I can’t do a long post today. This week will be busy trying to get my medical case on my website and then sharing a Doctor Referral google form and the hunt for a GI expert is ON. I’m glad I found some good doctors locally that can cover other areas, because it makes the wider hunt request easier to understand.
NEED GI EXPERTS PLEASE
Damn I can probably buy a PERSON on the dark web.
But find a GI doc that can help me with my particular issues?
Nope! Thanks greedy medical system.
Thanks for not giving a shit about the sick peeps.
No rant today! I’m determined to start sharing more of my life stories and just storytelling in general. I love doing it and I have SO many stories. And photos! Such fun photos from my weird ass life. I’ve been so lucky. I’m so lucky I’ve made it this long and had all the experiences I have.
I really have been lucky.
This next adventure - that may require traveling to hospitals around the country (just THINKING about it makes me tired) is going to BE an adventure. I have to look at it that way or I’ll just break down sobbing.
This. Will. Be. An. Adventure.
That’s what I tell myself. I’m turning this into a fun, online campaign! I’ll meet really great people! I may be able to help others with my knowledge!
I’m terrible at convincing myself of anything these days.
Somehow I keep going. I never know how I do it. I really don’t.
It’s that song? Not in my blood. That feisty bitch always wins.
Thank goodness for that.