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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I want a new job 4.1.19

I want a new job 4.1.19

It’s been rough times around here so I gave myself a week off from the Internet. Sharing content is both rewarding and draining. When people act superior because they aren’t on social media, I inwardly cringe now.

How lucky for you that you don’t depend on social media for support and company while being home-bound!

How lucky for you that you don’t depend on social media for life-saving advice and doctor referrals!

How lucky for you that you’re able to work in the real world and not desperately finding ways to generate income from your bedroom and bathroom!

The longer this continues, the further away the able-bodied world feels. And on top of that, I’m living in the bubble of all bubbles and then another bubble again.

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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