A million dreams 3.1.19

I just took this photo on my bathroom counter. i licked the frosting off the rolls. and I’m giving myself IV bag. those are all my notes to myself.

I just took this photo on my bathroom counter. i licked the frosting off the rolls. and I’m giving myself IV bag. those are all my notes to myself.

I’ve been asleep for hours today which means I don’t get to eat. My intestines are so sluggish that if I’m laying still and flat on the bed, I can’t have much in my gut. Otherwise, it just rolls around, rumbles, and there is pain from all the traffic jams throughout my intestines. Even one egg can do this. I get a little hungry, of course. When I realized I had some still-frosted cinnamon rolls in my stash, I started licking them frantically. This is one of many reasons why I feel like a freak. Even though, I know this is a very logical reaction to food deprivation.

This is what I’ve turned into. A woman that gets deliriously happy to see a little frosting left on some gross white sugar/white flour baked goods that I’ve never really liked. I do like cream cheese frosting. Buttercream is not my jam. Kale salad and fish tacos are my jam. I haven’t talked much about what it’s like to miss real food publicly. Mostly because it’s an incredibly painful aspect of my life. I’ve been processing the grief for awhile now. I guess I’m ready to share it now.

The Pink song, “A Million Dreams” is playing now. I listen to her quite a bit but I’ve never heard this one. It’s about creating a new world of her own design. Sigh…I hope we can do that. I dream of a new world every single day. A world where sick people get the help they need. And so many other things.

Not sure how long this post will be since every other sentence or so, my eyes close and I rest for a bit before opening them and writing again.

Now that I’m “coming out” about the darkest and hardest part of my disability and my life on here, I feel more relief than I thought I would. Always the case with change, isn’t it? The terror during anticipation is always much harder than actually making the change itself. We are so silly, us humans. We put off what needs to be done until the last possible minute and THEN realize, oh this isn’t nearly as scary as I thought it would be.

I like the idea of storing all my content here. It’s been such a source of confusion for me: what do I do with all my content? How do I organize it? Now I’m too tired to ask that question. I’m putting it here for now. I have so many fucking ideas running through my head so much of the time. You can see in the photo, I have a pile of writing ideas, and now ways to get help me stay alive since my brain is so tired and I don’t have a ton of great hours per week. Fuck. I hope I can improve that. There are so many things going on all of the time with my health, I often don’t have time to process what’s happening to me.

After this 10 day trip to California which was a test to determine if I can survive out of my cocoon for more than a few days. If I can’t make it in San Diego for that long, there’s no chance in hell I can get to Europe. I knew deep down it wasn’t going to happen. I’ve been wanting to go to DC for so long now.

I see the other disabled activists kicking ass there and I want to go so badly. Look Mitch McConnell in the eye.

Dreams. A million dreams. I’m changing the title from I wish I was crying wolf to a million dreams. So many things I still want to do - but my world keeps shrinking like my body. That’s been my fear all along. That I’d keep shrinking, my diet, my world, my body until there is nothing left. Before I’ve said everything I need to say. Before I made the biggest possible mark on the world. Before I became my full potential, the best version of Me.

This motivates me to write here. I want to record as much as possible with the energy I have. Say what I need to say and stop being afraid to say it.

This is good for me. I would have kept sleeping and that scares me. If I fall into the dozing world and struggle to stay connected to the regular world...it will become too easy to let go of this body. I’ll admit it. But a commitment like this works for a workaholic like me: I have to write every single day. Even if I have only three readers, I will feel an obligation to share what’s going on. This may sound like too much for me, but it’s good. I have to do something that requires me to wake up, think, put words together. The gut is a stubborn little fucker. We are in a battle of wills now. Today, it’s winning. No food for it. I gotta go now. I’m too tired to keep my eyes open.

Much love,

Jules