Can I do it? 3.10.19

I already gave myself a liter today of IV saline and my hands are still dry. And it’s winter. I’m getting very nervous for another hot summer….

I already gave myself a liter today of IV saline and my hands are still dry. And it’s winter. I’m getting very nervous for another hot summer….

I have some sort of bug. It’s turning into a hacking cough. I hate being like this. I hate being a sick person. I Hate not feeling strong. I hate not working. I hate begging for help. I hate that my family is in so much denial.

Am I also in denial? I launch these projects and make goals - is it totally futile? With this cough / bug, I can’t do my evening routine which means no eggs. How many weeks can I do this? Should I go to the ER and get admitted so I can get TPN (nutrition through my IV line)? I hate having to make all these serious decisions - back and forth back and forth in my mind. How sick are the doctors going to let me get before they will step in to help?

My nurses say that they often wait until people are near death before covering things like TPN! Oh, and I’d need to fail a feeding tube as well! I can’t IMAGINE the Nestle shit they put in the tube feeding - and I’d still need to get that out of my intestines! The TPN bypasses the gut. But there is not good data for long-term use of TPN and my gut could just shut down altogether if I give it too long of a break.

If this sounds maddening from the outside, I can promise you it’s a thousand times worse to be living it. I don’t know what to do. I have my volunteer crew now THANK GOODNESS. But am I being stubborn when not going to the ER now? I fucking hate the hospital! HATE. IT. Last resort, always.

I’ve definitely been feeling more scared about my health than I have in awhile. The trip to CA was such a hit on my physical and mental health. The thing is: I don’t even have time to process half the shit I go through. I still haven’t processed not being able to go on that ACA road trip in the RV! I’m nervous for the hot weather during the summer. I’m nervous I’m going to be like the boy in the bubble, and I’m really not going to be able to be outside for months. Trapped. In a house that I don’t even….want to be living in.

I’m just so fucking tired of all of this. I have days like this. Where I’m shaking my head, wondering how the heck I can make it for another five years. How the fuck?

I get a cough like this and I get nervous. I don’t feel the way I did even a year ago: I’ll get over it. I think of that activist Carrie Ann Lucas. She didn’t get her asthma inhaler covered and it was all downhill from there.

My folks are upstairs and have not offered so much a cup of tea or some broth.

I’ve got to figure out a way….

Too tired to write anymore.

Much love,

Jules