I got labs at home 4.5.19

I had to get a baby present for my nurse. I’m too practical to buy the outfits that are over-the-top adorable, but this is still pretty cute! I often will buy gender-neutral clothing and have for years, though this has the flowers on it. I’ve done a lot of stealthy feminist shit like that over the years because I felt like I had to be a closet feminist. Fortunately, my friends think it’s awesome.

I had to get a baby present for my nurse. I’m too practical to buy the outfits that are over-the-top adorable, but this is still pretty cute! I often will buy gender-neutral clothing and have for years, though this has the flowers on it. I’ve done a lot of stealthy feminist shit like that over the years because I felt like I had to be a closet feminist. Fortunately, my friends think it’s awesome.

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 poked 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.

So to have my home nurse (who is so awesome that it feels like a visit from a friend) take my blood while I’m still in bed - it needs to be early for the thyroid lab to be as accurate as possible - IS AMAZING. I dream of living somewhere that has people coming to me.

It doesn’t exist in America.

Thankfully, we DO have nurses. Who are fucking rockstars.

It was a nurse that saved my dad’s life when he had a benign thymoma removed from his chest in 2007 (?). He was in the ICU and had too much “output” in his drainage tubes. The nurse pulled me aside and told me something isn’t right. It was a weekend - which is the WORST time to be in the hospital after a surgery (FYI). The resident was an idiot who didn’t know what he was doing.

She’d worked in a burn unit with I think military vets so she’d seen a lot of really sick people. I was so scared. This was the beginning of all of our horrible medical problems - my dad hadn’t had any cancer yet. I asked what to do. She said: I’ll keep him alive, you come back early in the morning so you’re here when the attending doctors make rounds, be here no later than 6:45am. Her shift ended then so she could give me an update and I could then plead my case with the doctor.

Oh, I should add in here: a lot of times - not always! - doctors don’t listen to the nurses so she knew it would be up to me. She was new there so she knew I’d have a better chance than her.

Anyone that knows me knows I’m NOT a morning person. Never been. Never will. But I got my ass up and my mom, brother and I drove to the hospital. When we got there, he looked even more yellow and devoid of any pink color.

He was bleeding to death.

The attending doctor came in and this was the first of many times I dug my teeth into a doctor and wouldn’t let go until they listened.

Fortunately, he did. He was probably 40ish and super fit. So when I explained that we were worried his output was too much, his blood pressure was too low, and his hematocrit was also low (hematocrit is the proportion of, by volume, of the blood that is red blood cells), repeating what the nurse had told me.

He replied skeptically: his blood pressure should be low, he’s in his 60s. I said: no, the guy did three Ironmans- which got his attention - he is a runner and biker.

He looked at more data and said: ok something isn’t right, we’ll get him into surgery.

When he came back down, I saw a look that I’ve never seen on a surgeon’s face before or after. He looked…hang-dog.

There was a blood clot the size of a football in my dad’s chest pressing on his heart. At some point, there was a bleed in there but he said he couldn’t find it - that it must have closed up.

This was before they had the robotics down so they’d had to crack open his chest a second time to find the bleed and clean up the mess.

If my dad hadn’t been such a strong athlete, that blood clot would have definitely pushed on his heart until it gave out. The surgeon said, his heart was so strong, it just kept on pumping even with that huge clot pushing on it.

I’d already been a huge fan of nurses, but after that?

I always listen to them. Always.

My home nurses are in large part why I haven’t gone totally bananas from this medical care. The entire staff is amazing from the people who answer the phones to the people who visit me at home.

When things were worsening in 2017, they’d even sit and let me cry. One of them, a dude, would take extra time to just listen and offer support. They see a lot of sick patients who are stuck at home so they are in a unique position to offer insight and empathy.

They know what we are going through is so fucking hard.

I’ve even met a friend through one of them! When - not if - I feel up for it, her and I are discussing starting an online group together.

My most recent one is so awesome and has had such great advice. She worked at a hospital for many years so she knows a LOT. We talked about how you can only learn so much in books. There are so many things you simply have to learn on the job. A lot of the hospitals now have a more rookie staff because the veteran ones are doing jobs like home infusion. The hours are better and it’s way more low-key.

It’s just another sign that our medical system is weakening.

Her and her wife started fostering a baby girl recently. For so many reasons, my conversations with her remind me how much good there is in the world!

So…I’m done with the baby thing. Like way done. I raised babies for many years. And I didn’t even have one! I’ll hold them! No interest in anything else. I’ve changed WAY too many diapers for someone who isn’t a parent. BUT I love, LOVE buying baby clothes. C’mon. I love my boys. I think that’s clear. But buying them clothes? It’s gotten better over the years. I prefer buying “traditionally” female clothing - sorry I know it’s not super feminist but some of them are just too adorable.

Anyway, the baby’s birthday is next week and I had to get something.

My nurses. Oh! One figured out that my port was infected after three - yes that’s right - three nurses at a CHEMO center told me it was fine. He diagnosed it over the phone!

So when I say my nurses are saving my life?

I mean: they are saving my life.

In so many ways. I wish I could do more than buy a little baby present!

One day. Maybe. One day, we can make sure nurses are treated for what they are: angels.

Ok, back to sleep. I’m forcing myself to share content, no matter what. It keeps me tethered to this world.

Forces me to stay engaged in it. It would be so easy to just keep sleeping…I’ll be honest about that.

I know it’s scary and hard for people to hear. But it’s the truth. I promised the truth.

The hunger. The pain.

They take their toll.

But the words do come easier, I’ll say that much.

Weird how it works.

Back to Our Planet on Netflix and ok, a little napping - I like listening to the nature sounds and his voice is soothing. I like to think that my subconscious is still listening.

Everyone should watch this show. Amazing narrator from the UK. Check it out. (The dancing bird in the second episode is the best thing I’ve seen in a long time.)

Much love,

Jules