This was not a fun day 5.8.19

I had to hold the end of my PICC line for a long time while trying to figure out how the hell I’m supposed to fix the mistake the doctor made.

I had to hold the end of my PICC line for a long time while trying to figure out how the hell I’m supposed to fix the mistake the doctor made.

The reason I wasn’t able to write yesterday (I posted something there just now to cover that date) is because the day was absolutely bananas. When it didn’t need to be.

I drove myself to my IV vitamin appointment which is fine, but long and hard when I’m tired. It’s a half hour drive there and an hour home because of traffic - now if the medical system allowed for me to get these AT HOME, it would be a lot cheaper and a LOT easier than commuting for a 45 minute IV bag I could easily administer myself.

There is magnesium in the bag which makes me a bit sleepy. I do my best to rest while I’m there so I’ll have cognitive focus to do the drive home.

Lately, I’ve been bringing chicken broth, tea with honey and nut milk, and my protein drink. The Vitamin C can lower blood sugar, so I’ve had to be very careful about maintaining a constant flow of salty or sugary fluids. I never used to get low blood sugar before all of this. I could go without meals, no problem.

Not anymore!

So at the end of my appointment, one of the ND doctors flushes my PICC line. And without paying much attention, I wrapped it up in my sleeve, grabbed all my bottles and drove home.

It’s very warm here in Seattle this week and the car rides dehydrate me BIG time. As soon as I got home, I started preparing my saline IV bag (the one at the doctors is a very small bag with mostly nutrients so it doesn’t really hydrate much) and warming up some chicken broth for my one significant meal of the day.

I casually pull my line out of my sleeve and look down in horror.

I can’t figure out how to make this smaller. I’m so freaking tired today.

I can’t figure out how to make this smaller. I’m so freaking tired today.

There should be a little blue piece called a clave on the end of this line. If she hadn’t “clamped” down on the line further down, my entire line would have been exposed to the elements, possibly causing an infection. When I was trained by the nurses from home infusion, they said explicitly:

NEVER REMOVE THE CLAVE UNDER ANY CIRCUMSTANCES

I remember when I did what the doctor must have done. It was early on and I accidentally twisted it off with the syringe. It fell to the floor, and I started freaking out. I remember because I was about to leave for New York City. The nurses talked me through how to fix the whole thing but they still had to come out and re-do my entire dressing the next day.

That’s how serious it is to have the clave fall off. They send out a nurse to re-do ALL of it.

So I call the ND office and get the doctor on the line. I’m clearly panicked. I said: my clave is gone!

She says: ok, hold on. I’m in the infusion room and I’m not seeing it. Do you want me to call you if we find it.

By now, my eyes are bulging out of my head.

HOW DOES SHE NOT KNOW I CAN’T USE IT AGAIN AND IS REACTING LIKE THIS IS NO BIG DEAL! She just opened me up to the possibility of an infected line!

Then I remembered how this particular office is always try to put the green cap back on the end of the line when we are finishing up. And I’m like: NOOOOOO, it’s contaminated now!

It all becomes clear: there is no RN (registered nurse - they are the ones trained on things like PICC lines and ports and allowed to work on them).

I’m starting to think the staff there has not been properly trained in the care of a PICC line.

After I finish writing this, I will share it with the owner of the clinic who is super cool and will definitely want to hear about this. If for no other reason, to highlight the very real stress something like this causes someone like me.

Back to the story. I get a nurse on the line from my home infusion office. She says it will take her TWO hours to drive down from Arlington (that’s far north of Seattle) with all the traffic. Two hours? I’m like no way.

I ask her: can’t I fix it?

She asks if I can reach the top of the line with both hands. The answer is NO because that [#$&*} surgical doctor put my line so far up in my armpit, I can’t use both hands to unscrew that long tail off the end of my line called an “extension.”

I go through my supplies and find a red cap to put on until we can figure out what to do. That meant that for the first time in a half hour, I’m not walking holding the line up and not being sure how to keep it sanitary.

We decided to wait until my mom comes home so that she can help me change the extension. Because it has been a short time, it’s likely fine.

This is why I will likely never be able to live alone again. This makes me terribly sad. But the idea of living alone now sounds way more terrifying than being dependent if that makes any sense.

I had a lot of awesome years on my own. This is the deal now. I have to accept it.

My mom comes home, she is really good with medical crap THANK GOODNESS. (She would have become a doctor if she didn’t have kids, she tells us - she’s certainly smart enough. They called her “the brain” in school).

I get the table set up for a “clean” and ready with the medical supplies.

We get to work but we can’t get the little tail - the extension - off. This is not unusual. My nurses often have to use a little mini pair of plyers meant for medical use only. The key is not to damage that purple part I’m holding in the photo. That part is permanently part of me for now. If it gets damaged, I’ll likely have to have the whole thing taken out and get a new line put in (which frankly, would not make me sad at this point - I had the current placement). But still! I don’t have time for this crap!

I have to get to the paint store before it closes (around 90 minutes at this point). I’m hungry. Dehydrated. I need a bag of saline badly - thank GOODNESS I started that medication on Monday - I would have been way, way worse. I get super spacey and unbalanced when I’m dehydrated so that’s not a good way to handle medical issues!

I have so much going on these days, my head is literally spinning. I’m trying to juggle so many things, including making sure my dad is getting enough nutrition. He is getting too skinny so I’m emailing with his nutritionist (my former professor from grad school) to figure out how to increase his calories. I’m also really concerned about his mental health. I emailed a couple of women around my age that did Crossfit with him. I’m hoping they can find ways to take him out for a walk and cheer him up.

I’m worried. I worry a lot about him. Did I tell you I’m worried about my dad?

He doesn’t have a stomach so he can’t eat large meals. His nutritionist was so sweet, she drove over some meal replacement drinks that are super high quality. (She gave us both huge hugs and kisses, and I’m like oh yeah, she knows we could be dead sooner than later. I can’t decide which is harder, having people know and act like that or having people pretend like we’re totally fine and not at risk for death….)

Luckily, he tolerated her meal replacement ok! Each container is 500 calories and has a lot of good nutrition. It’s too high fiber for me but it’s good to know of it’s existence. I can’t wait to organize this shit and put it on this website so that others have this important information!

But first, I need to keep myself alive and make sure I stay sane!

The nurse is talking us through all of this through the speaker phone. She says: do you have pliers.

Without batting an eyelash, I run downstairs to my dad’s workshop.

The paint fumes hit me on the way down the stairs.

Oh shit! I think. The fucking workshop is full of the crap that we had to move from the rooms being painted.

CAN I EVEN GET TO THE PLIERS?

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This room is already a mess on a good day - but you can at least walk through the middle of it! My body now very limber from all my weird exercises, so I can carefully navigate the crap and crawl up on the work bench to get the pliers. He has a zillion of them, of course, because his dad grew up in the Bronx during the Depression and that hoarding gene is a strong one! Generational trauma from that plus being a Jew, it’s a wonder I’ve been able to get my folks to clean out the basement as much as I have (the other rooms will look great when we’re done - this room? Will be like the junk drawer of the house, I guess?)

I run back upstairs and my mom has a look on her face.

What? I say.

She says: there’s pliers in the kitchen but you ran off so fast….

Oh lord.

We to put the pliers in a pair of latex gloves since it’s too close to my line and we can’t contaminate it. It takes awhile but we finally get the stupid thing changed. The nurse doesn’t have to drive from Arlington. I’m feeling less panicked - though I won’t immediately know if the line is infected.

I run to the paint store a half hour before it closes. I get the three samples of white. I’m so proud of myself!

I get home and try to test them on the walls.

BUT but but.

The fucking primer is too wet! The guys moved so fast yesterday, I missed my window to test colors.

I give up and just choose a fucking white from the little paper samples and send it to the painter.

Thank goodness Megan is helping out with the painters. I barely have been able to get the room cleared out - that’s exhausted me beyond belief and I had Sarah who is young and strong helping with a lot of it! And my nephews over the weekend!

I’m SO excited for these rooms to be painted. It’s helped my mental health A LOT to know this is underway. If I’m stuck in this room for hours each day, I need it to not feel like I’m trapped in a 1980s horror movie, doing the same thing, all of the time. And with a hole in the ceiling! This is what happens! Our whole family has been sliding down from middle class to an entirely new economic bracket, RIGHT HERE on Mercer Island.

And people are like la la la, let’s go on a 15th vacation this year! Instead of finding a family that could use some help and giving up one of those vacations? Is that too much to ask? I’m seriously asking because I thought: wouldn’t it be cool if a well-off family sponsored a family going through a hard time. Maybe help them navigate the medical system. Help with rides. Just backed them up like I’m getting from my people!

Is that too much to ask? Because I can’t tell anymore. To me, this seems reasonable. And it would allow for people who feel overwhelmed with traditional activism to find a way to feel they are giving back. It would build relationships and a sense of community which we sorely need in our country. It would allow the well-off to get out of their bubble and experience what it’s like for us.

My drivers are AGHAST at the little they are seeing during just ONE car ride. I didn’t even tell you about the ruckus at Walgreens. I had one of my drivers “pop by” Walgreens so we could pick up my estrogen patches before going to an appointment on Tuesday.

It was a half hour of back and forth with the pharmacist because they want to charge me $60 for my patches. My mom had a coupon the first time she picked them up so they were half that. But this time, they’re claiming there is no coupon. I’ve only had the patches for a couple of months so this is new. I guess Medicare doesn’t want me to take the more expensive patches than the inexpensive pills.

Finally, my driver is like: I’ll pay for them! Which never occurred to me. I figured I’d just pick the meds up! Even last year, I wasn’t paying out of pocket for any meds. I still have that able-body mind: this will big deal!

No such luck.

This year, it’s been one thing after another, but in so many different ways, I can’t always anticipate what will go wrong.

I get panicky when I can’t get to my hormones. All my docs and my compound pharmacy know this by now because they’ve gotten phone calls from me when they haven’t done their task in a timely fashion, or filled an expired prescription or forgotten to mail me both bottles of progesterone (it helps me sleep big time!).

DO NOT STAND BETWEEN ME AND MY HORMONES, WORLD. I do ok with hardly any calories. But hardly any calories PLUS missing hormones?

I become like the Hulk.

They should do something like that to me and then put me on the Senate floor! I dream of it.

Those stupid, cowardly men would be running for the hills. Me, unleashed, hungry and hormonal! Hahaahahahahaa. Even Putin would run and hide. I may be a tiny person, but dude. Don’t piss me off.

Anyway, that’s my fucking story. Yes, all of this happened in the last 48 hours.

Now, I’ve got to go get ready for yet another doc appointment. I’ve heard awesome things about this doctor, so I’m hoping it goes well. If nothing else, I’ve got a team of mostly women doctors (my Seattle guy friends are going to have to get on board SOON, because I’m not just sitting at home dying while they do whatever it is their doing, ESPECIALLY the ones who voted for this administration - they gotta FIX THIS SHIT).

Lord, am I really going to send this link to my ND? Sigh…why not.

The nurse on the phone laughed and said: those doctors have no idea the stress and panic they are causing patients with something THEY think is a small issue.

And I’m like: nope, they’re going to read all about it.

Read. All. About. It.

Get woke, America! Time to get woke about disability! It’s gonna hurt! I’m still waking up to it every day - it’s not an overnight process. But I’m damn well sharing all my stories so that others can at least bear witness to the pain of living in this fucked up country as a poor, sick person!

Thanks for reading this far. A reality show of my life would make the Kardishans look like a bunch of weird, whiny rich people that literally create drama in order to be watched.

No need to create any drama over here! All organic, just the way it should be.

Much love,

Jules