I went to the ballet! 4.19.19

I went to the ballet! 4.19.19

OMG I had the best night!

Awhile back, I posted on Facebook that I was looking for ballet classes for adults. I can’t do jack shit musically but I can dance and I love it. LOVE it. In fact, I get so bored with my “Movement Routine” that I do in order to digest a few eggs that I’ve added more than just modern dance to it. (Imagine having to do several hours of movement JUST to digest one meal, that’s my life.) I like twirling around like a ballerina to mix things up.

Am I any good? Meh. I wouldn’t make a complete embarrassment out of myself but I’m certainly not gifted at it. There are so few opportunities for me to ENJOY this body, that even if I make an ass out of myself dancing around the house (sorry neighbors), I do not CARE. I’ve never been this limber in my life which makes it fun.

ANYWAY, back to my fun night. An old friend saw my post about looking for ballet classes - which are probably a pipe dream at this point, I can’t get through my improv class without

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I got labs at home 4.5.19

I got labs at home 4.5.19

Have I mentioned yet how much my family appreciates nurses?

They are the unsung heroes of the medical world, FOR SURE. I’ve been having home nurses come to my house for almost two years now. They changed the bandage on whatever needle is in me - well, when I had a port in my chest, they had to put in a NEW needle. This is one of the reasons I prefer the PICC line - I don’t have to get poke every week. It sucks because I don’t get that ONE night where I get to sink into the bath and I never get to go swimming.

But really, these days, that feels like a small loss. And I LOVE swimming and taking lovely baths!

In the grand scheme of things, I can’t worry about that now. It’s interesting how something that sounds SO hard to lose happens, and over time, I get used to it.

I got my labs drawn by my home nurse this morning WHILE I WAS IN BED. Do you know how incredibly dreamy this is? The stress of trying to GET to my healthcare is a large portion of my stress. Driving, parking, navigating new buildings, getting lost, feeling stressed, paying for parking, forgetting where I’m driving…. So much of it makes my life hard.

That’s why having drivers lately has been absolutely fucking amazing.

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Something is not right 4.2.19

Something is not right 4.2.19

The pain was bad last night. I hate when the pain is bad throughout the night. I wake up a lot and don’t sleep well. I tried eating four eggs yesterday and it did NOT go well. That’s the first time I’ve tried to eat four eggs at in one day since before Feb 15 or thereabouts. That’s when I left for San Diego.

I thought since because I had an extra visceral massage on Sunday that maybe I could get away with it. Also, I was hungry! I was super hungry yesterday which is always a good sign. Today, no appetite. Don’t want to put anything in my stomach. I should have done two bags of IV fluids yesterday - that would have helped - but I ran out of tubing and had only one left. I wanted to save it for TODAY’S visceral massage with Caroline. We discovered that if I give myself a bag while she works on my belly then she’s able to move my tissue more easily and open things up.

Visceral massage, if you’re wondering, is when specially trained massage therapists move the intestines around by massaging the belly and the back. It can be very subtle work - they are trained to know how to “pull apart” the intestines that are sticking together most often due

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Can I do it? 3.10.19

Can I do it? 3.10.19

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

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I am hungry 2.27.19

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2/27/19 Tired and hungry

Today I had a doctor appointment at 2pm. When I have a doctor appointment, I rarely eat beforehand. Which seems like a bad idea, looking from the outside in. But if I eat at the wrong time, then I’m stuck in the bathroom, or running back and forth, for a couple of hours. Unless I am traveling, I will rarely get out of bed the requisite two to three hours ahead of departure time in order to eat broth and eggs. Plus, I have so little I can eat, if I eat too early in the day, then I will want more later in the day. I’ve never been super hungry the first half of the day - my brain, appetite and body have always been on a night owl schedule - but now, it’s worse than ever.

After my disastrous appointment today where the doctor lied to my face so badly - I’ve never seen a grown man literally squirming in his seat like this guy. I keep being told that they won’t order labs - I cried for awhile in my car. Then called Megan. Then got a couple of doughnuts so I could eat the frosting off. This used to be a once in awhile thing. But lately…it’s not good how often I do this instead of real food. What am I supposed to do? I’m starving so much of the time and there is only so many juices and broths that cut the edge. This horribly sugary “snack” can’t be good for cancer prevention. But I’m so tired. So on edge. Overwhelmed. Tired. Did I say tired? Yeah, my estrogen is so low and I’ve eaten so little for 2 weeks that my brain isn’t thinking so sharp today.

I’m kind of forcing myself to write here. If I don’t do something like this - keep something like this tethering me to the real world and do a tangible task that I can successfully complete - I think I’m going to really lose my mind.

Yesterday when I got home from another appointment my mom reminded me that I had called her and cried earlier that day. I had no memory of it. Well, it was a fuzzy memory. Kind of like a drunken night from a few weeks ago that someone reminds you about. But I had no tangible feelings about the phone call. No idea what I said to her but do remember that I was crying while talking to her.

That’s not some unusual thing, of course, so my brain pulled up a memory of it. Who knows if it was the actual memory of yesterday’s call.

I know it’s scary to read this sort of thing. To watch some deteriorate before your eyes. Watch the system drag them under water, gasp as the person doesn’t come up for air for far too long, only to watch them burst through the surface, terror in their eyes, realizing that their chances of survival keep dropping.

I’m going to get some IV nutrients from ND which is quite expensive but luckily, I have far away donor willing to do it. We’ve never met in person! How amazing is that?

I will try to go get some real food in my stomach. It’s just so lovely to not be in pain, that I dread eating now. I know it’s so much work to get it out and a lot of pain in between, it’s gotten to the point where I connect eggs to pain now. I really, really can’t lose eggs. That will be very, very bad if I do.

Much love,

Jules