I can’t stop sleeping today. When I say I can’t stop sleeping, I mean I can barely keep my eyes open. This is often the case on Fridays. I’ve discovered that I can’t even do basic phone meetings - sometimes I can but usually I can’t so it’s not worth scheduling.
I kept planning on writing in here but after my second nap of the day, I figured I might have to take the day off.
Then I discovered that my toilet isn’t working.
Now, for a regular person, this would be a minor nuisance.
I am not a regular person.
Never a dull day at the Negrin house! My handy guy isn’t available. The plumber can’t come until MONDAY. Torture.
My dad is on oxygen, with the tube trailing down the hallway, and starts to come down the stairs just now. I wanted him to wait for me. In the past, I would be nervous about whether I’d be strong enough to grab him or catch him.
I’m no longer concerned about that. He is so frail and skinny.
And I’m in a fairly strong phase. My insides aren’t awesome. But I can do some weird exercises now! They have to do with balance! I’m nervous to share a video, but it’s the kind of shit the Internet likes so….and that’s a good thing for me to do. Exercises for people with stomach issues, talk about nutrition while I’m doing it.
The internet likes that shit times a million.
I think many assume that I was a “groupie” when I hung out with professional athletes.
I was not a groupie. I’m not a professional either!
But I’m no groupie.
Dang I wish we could have taken video of our mountain bike rides back then! That’s my sport. That and bowling. I know I know, I don’t know why it comes naturally to me (I do, my dad taught me when I was really small). I had a friend that was in a bowling league and I’d pop in every once awhile for a social bowl.
Very sexist, I find it. NOBODY asks if I work out like my dad, all these years. Nobody asked. I had my little chip-and-dessert mushiness to mask the muscle. I didn’t mind. I knew it was there.
In any event, he shuffled down the stairs and then sat on them. He instructed me on which box I had to track down with parts for the toilet.
I hate this toilet.
It’s the SECOND one since we redid the bathroom in 2017 so I could take baths, since I can’t have just a plain shower anymore. The needle in my arm requires a removable shower head and a low down faucet. Often, when I’m too tired to wrap my arm, I’ll just squat and rinse off that way.
Yep. It’s 2019 and I live in one of the wealthiest zip codes in the country and I squat to bathe. At least I don’t use much water these days. This comforts me.
I’m lucky that we re-did the bathroom. I HAVE to remember to go over the things that make me lucky. Though, whenever I see cards or magnets or IG quotes that say: it all works out in the end. I think: yeah IF YOU’RE WHITE AND ABLE-BODIED AND HAVE SOME CASH, sure it always works out! Why wouldn’t it? The entire system is rigged in your FAVOR.
I know I know, bitter disabled woman trope. I’m allowed a little. Not a lot. But I get to my have my rants in here.
I’m never unaware that I’m lucky.
ANYWAY, I manage to track down the box in that chaotic work room. While I was texting my new handy kid (the one who painted the other rooms, he is such a lovely young man), I asked him to quote what it cost to have someone take a load to the dump.
I’ve got to get that workroom under control.
Poor guy. In the hospital, when he thought he wasn’t going to get out of there, ever, he said: I never cleaned the workshop.
I was like: dad, it’s ok. Please don’t worry about THAT. (He remembers cleaning out his dad’s house after his death. He was the Depression era Bronx Papu, it took them weeks to clean out just the basement.)
They gave me a hard time for having them get rid of stuff the past few years.
One year, when we were all on vacation in eastern washington - I really wanted the cousins to bond when they were young and it was something we did with OUR cousins when we were young and we all had such powerful, awesome memories - I discovered that if we didn’t figure out what we wanted to rent at the beginning of the week, we wouldn’t get to do the activities the kids wanted to do.
I wanted to make sure the kids had experience with things like camping and boating. I always felt so stupid and awkward when I got to college and had done neither. Especially around here, everyone knows what to do on a boat. And certainly throughout Washington, everyone has SOME camping experience. Not all families!
Anyway, I played cruise director - something I enjoy doing - and trying to figure out what we’d do each day of the vacation at the beginning. Which day guys? Which day should we go on the boat? Which day chill around here and do mini golf? C’mon, this isn’t a hard answer.
I’d get such crap. Why are you bugging us? Geesh Jules let it rest. Let’s just wing it.
But I’d persevere - because that’s how I roll - and I’d finally get a schedule together.
At the end of the vacation, they’d say: oh my gosh that was SUCH a great vacation! It was SO great how we did something SO fun every single day! It worked out so well.
There are some advantages to being invisible for years and years though.
Heheehheheheee. You’ll have to stick around for THAT.
I’m in a better mood if you can’t tell.
Just got word that my brother is on his way over to fix the toilet.
That’s great he can help fix it.
The reason I’m so bleeping tired (why do I choose to swear in some spots? Say freaking in another? Bleeping here, I have no idea, the words come out and I type, I’m at THEIR mercy) is because I got that IV bag in the U Village area yesterday and then realized that there was some sort of graduation ceremony at the stadium that was just getting out.
For my three readers who don’t know Seattle: the U Village is near the University of Washington which is right on the water. Because Seattle has a Denial Problem and Won’t Face It’s Growing Population Problem, we don’t have the greatest traffic in this area.
I’m sleepy after these bags, especially yesterday because she added extra Magnesium to see if it would help the charlie horse problem. If I could do it at home, I’d give myself the Magnesium before bed!
I get in the car - and I broke down, guys, I did, I ate some TJ meringue cookies that were in my trunk. I leave them there so that they’re not so easily reachable when I’m inside the house. Also, they are there for low blood sugar emergencies like yesterday. I’d sipped chicken brother, and already finished an entire 32 oz box of my protein drink. I hadn’t had eggs the day before so by the next afternoon, I’m super hungry.
I kept checking GPS for how long it would take to get home. Normally, it takes about 30 minutes when traffic is light. It was showing an hour. Then I sat for 20 minutes and only went 2 blocks. It was looking more like 1.5 hours. I saw a girl hop out of the car, go into Safeway. I waited and waited to see if she’d make it back in time to get back in the car while it was still right near the store.
I was afraid I’d end up needing the bathroom while on the road.
I canceled with Sarah - I’d worked HARD to get that meeting, she is in grad school and very busy, I’d even moved meeting a friend so I could meet with her last night, there’s always so much paperwork to be done and we haven’t met now for a couple of weeks and pulled into the U Village parking lot.
It’s usually a NIGHTMARE to park there. But I found a beautiful spot right in front. I was supposed to be there.
I discovered this awesome restaurant, Din Tai Fung last time I was there when my dad was in the hospital. They have excellent broth and even sent me home with delicious sauce to eat with my avocado.
The staff is STELLAR, so lovely about my odd requests. I mean, unbelievable (I’m always noting which young people would be good staff people, leftover from my days of hiring so many young people to work for me in NYC) customer service.
It ended up being a perfect outing. I spend SO little time doing anything “normal” as it is, and then you add in what’s happening with my dad, and I’m living the medical nightmare almost 24/7.
It’s not good for the mind.
I sat in the sunshine and had a drink. I talked on the phone with bestie, my angel. She has an actual master’s in counseling, though she hasn’t worked in the field since having kids so we went over whether or not I was really losing my mind.
She doesn’t think I’m really losing my mind. I guess I’d have to be struggling with figuring out what’s real or not, or having hallucinations, or hearing things, or I don’t know. Or I’d be unable to have a full-on conversation, she said. I mean, it’s been awhile since her degree but it did make me feel better.
And then I saw I’d gotten an email back from the trauma therapist already. She is taking new patients!
For anyone that’s ever looked for a new therapist, this is very unusual. I asked my massage therapist on Tuesday for a referral. She is super cool so I thought MAYBE she’d know someone. But still! Two days! That’s highly unusual.
Omg, my brother came in to work on my toilet and now my dad is down with his walker and oxygen!
That fucking toilet. I didn’t finish that part. So these assholes down in the warehouse district near my dad’s warehouse sold him this lemon of a toilet. He is SO sweet, he often gets taken advantage of. That one broke. AND THEY GAVE HIM ANOTHER AND MADE HIM PAY FOR IT! Grrrrrrr….. I was so pissed he paid for the second one!
I’m at the point where I’m ready to go down there myself and give them a piece of my mind.
He won’t believe that they ripped him off! Of course, not. It’s humiliating to realize that. When I realized I was conned on the website when I was going through chemo, I was so ashamed. Later, I’m like: ok, note to self, people will take advantage of me when I’m so clearly sick and weak.
People who prey on sick people are the sickest mother#$&#$&$* of all.
Sometimes I want to write the person I know that referred to me and insist that he donate the money he still owes me to a children’s organization.
Omg I feel so bad that my dad is down here working on the toilet, although, he almost sounds like he is happy to be working on it. He’s very handy, my dad. I spent many hours of my childhood playing next to him while he puttered around his workshop in our old house in Redmond. We lived there when I was…5-13 years old. The formative years. It was just a bench at the front of the garage. But my brother and I would play with the vise and I’d hammer random things (preparing me for my Ikea building days….). And yes, you’d think I’d be better at building shit now but it’s that mechanical and spatial thing I’m missing in my brain.
I can’t pack a car trunk to save my life. My staff over the years had to get used to me asking which tupperware to use to store food. I TRULY can not tell if a container is too big or too small for whatever needs storing.
It’s weird but I’m used to it.
I was looking for a hammer recently - I somehow bent the charging hole (?) in my really old ipad that I play music on - and I found the little hammer that I got as a kid as a gift! I remember that little tool kit so well. I was SO excited to get it. It had the hammer and a few other tools.
I wonder how many other women my age got tool kits when they were little girls. It was the 1970s so maybe I’m not alone in that?
When I was in college, one of my roommates had this adult tool kit her dad had put together for her. I asked my dad to do the same.
I think I mentioned in one of my stories that one guy (Jewish) I went on a date with in New York City was all shock and awe that I HAD a drill, let alone knew how to use it. I’ll never forget that date.
He’d never been out of the tri-state area! There was zero chemistry but it was the early days and it was a set-up, so I’m polite and chatty, of course. He read the vibe wrong (not surprising) though. When we left, he tried to put his arm around me while we walked under an umbrella. It’s almost easier when they start to paw at you, or go that direction, then I can just shut it down.
But this kid was sweet and really excited about the date, obviously. That’s a bit trickier. Like I said on my last podcast, I do try to be gentle with the male ego. It gets enough of a beating by the world.
I don’t remember how I extricated myself, but I did. It wasn’t the last time NY men were shocked I painted my own apartment and knew how to do basic fix-it jobs.
In 2005, I spent an entire month fixing up my Brooklyn apartment. The landlord - totally nuts woman who kept my deposit when I moved out even though I increased the property value of her place AND found her next tenant - allowed me to fix it up for the entire month of July without paying rent because she’s smart like that.
I had to borrow a friend’s car and drove to Home Depot, get all the supplies. All of it. I LOVE it. I like doing home improvements. Totally the Seattle person in me.
My friends that helped me were from Nashville. They had a loft in Williamsburg, he’d created a bathroom out of nothing, so they knew their shit.
It was so hot that summer. I remember just sweating in there for weeks, barely eating.
But it looked good when I was done!
My brother has some friends from the east coast. One of them called him one day and said: do you have a handy man? This is my brother with the velvet hands. But he’s still Son of Marv so he knows how to do basic stuff too. My dear, probably genius level brother, had no idea what a handy man was even though he was already a home owner. What do you mean, he kept asking his friend. (He’s one of those brilliant absent minded professor types.)
His friend said: I need a handy man for something at my house.
My brother: what’s wrong?
Friend: The lightbulb is broken in my outside porch and I need to get it out.
My brother in awe: um, put on a work glove and unscrew it..?!
Friend: Oh yeah, man yeah! Thanks so much!
Ok, I should go help them. Ha! Just kidding. I don’t do plumbing.
When we were kids, my dad tried to do EVERYTHING. One time, the entire house went black while he was trying to do something electrical. All we hear is him hollering his usual curse words.
After that, my mom insisted on professional electricians and plumbers. We were done with the lean years, finally, when we moved into this house when I was 13 years old.
You gotta be realistic about these things.
I know why I like writing in here so much.
It means I EXIST. It means my feelings are REAL. It means what’s happening to me IS REALLY HAPPENING TO ME. So much bad shit keeps happening over and over again, it’s hard for the brain to process it, let alone accept it, let alone get other people to really grasp the enormity of what’s happening in this household.
I had to go upstairs earlier today to have my nurse change my bandage.
My dad’s PT was there helping him do exercises! I was listening to her explain how to breathe while he exercised. Just now, when he was going back up the stairs, I’m hollering: breathe like the PT said! I hear him inhale through his nose, so he’s getting plenty of oxygen through the little nose thingies.
My mom is sipping her tea and doing her crossword puzzle, and my dad and I look like we’re in the hospital. His person was even in scrubs!
It’s so nuts. At least we have home care, though. It’s truly life changing.
I like writing in here because it feels like I’m writing a story, an actual honest to god story of what’s happening here instead of just living out a nightmare.
If I record it, it’s real. If I record it, it’s art. If I record it, the story will live on.
I’m not just some invisible sick person who is living an invisible life and being ignored by society.
I’m a blogger blogging about my fucked up life, and I will be HEARD and SEEN.
Yesterday when I got home from my crazy day at the U Village, more relaxed than I’ve been in awhile, my mom said: Dad had a good day.
I immediately say: did you do exercises? I’ve been asking him this every day, and most days, his shoulders are slumped and he says no.
Yesterday my mom said: yes! He did!
I was so happy. It’s not just the exercising that makes me happy - because he needs that strength, I’ve now seen for both me and him how FUCKING CRUCIAL it is to keep the muscles strong. I’m 100% POSITIVE that most people his age would have died from that lung inflammation thing.
I mean, they were talking hospice IN the hospital and kept saying all these dire things. IN FRONT OF HIM.
That’s why I’d say back in front of them: mmmmm, you don’t know my dad. He can pull it out. He’s an IRONMAN and I’d look at him like: don’t you listen to these doom and gloom mainstream medical people.
They’re ALWAYS so doom and gloom. So irritating.
I get that it’s very serious. We’ve all been frightened, and we still don’t know what the deal is with the cancer, and the clots. I mean, he has a lot of risks. It’s so scary!
But but but… if he is exercising WITHOUT the PT, that means my dad is still in there.
That means he’s willing to fight.
He barely glanced up as I went to high five him and I saw it. Our eyes caught and I saw IT.
The fight. The competitor.
YESSSSSS I knew it.
He’s competitive. He’s super competitive. We both are when it comes to sports. I’m just very quiet about my sports stuff, because I was surrounded by so many people (ok men) always talking talking / bragging / rambling about their athletic exploits.
I just do it.
I saw the look and he knows I know.
He is seeing me doing all my exercising around the house, and he doesn’t like not also doing it. It’s too much a part of his identity. He’s feeling a little competitive, and WANTS to do his exercises. YESSSSSSSS.
Damn, I’ve been waiting for this for awhile now. I was starting to lose hope!
I’ve been very gentle all this time. I’ve been waiting to start with the tough coach. It’s the same with kids, I guess.
You have to know when to push, when to pull back, when to offer a hug. When to put the foot down. When to challenge them and say: c’mon, enough with the whining, get ‘er DONE. And when to say: you know what, this day has been too hard and long, let’s just get ready for bed.
Everything we say and do in this situations is how THEY will handle shit as adults. We teach them the self-talk and the way to navigate the challenges. That’s why it’s so crucial to not ALWAYS step in to fix shit.
Then they don’t have that “muscle memory” to rely on. They just flounder.
It’s not easy! I had to do a few different speeches with a kid this winter. Damn it’s scary when their future is literally at stake. It’s hard to know when to push, and when to console. Thank goodness that got back on track.
So today, he was doing his little old man shuffle that he’s been doing the last few months - and I get it, he has been super sick. He couldn’t breathe right for a good few months. It made EVERYTHING feel impossible.
But now that he’s had a good couple of days, and his sense of self is a tiny bit restored, I pushed a little today.
I had to hand him the box with the parts for the toilet and I said: hey, c’mon show me the elite athlete, you’re not just the fragile old man.
And he didn’t argue or get weird about it.
He liked it.
He was kind of getting into the fragile old man thing. I just waited. I had to see which way he’d go mentally AND physically. If he decided to give up altogether and peace out, there’s no point.
But he’s not tired of it all yet. Some people do what he’s been doing for a few months for YEARS. And they’re ready to go.
He’s not ready to go.
I can still see that look on his face. I’ve been urging him gently to do some exercises this whole time, but didn’t push.
Now he is working on my toilet with my brother!!!! I can hear them talking.
HE LOVES doing handy house projects with his boys. It’s probably one of his top favorite things to do, right below working out with his buddies.
Hmmm.. he likes doing house projects with his boys. This is the kind of stuff that can keep someone going when they’re going through a shit medical experience.
I mean, we’re limited still. If he can’t have surgery and he’s dependent on oxygen…I don’t know. But I’d like to shoot for a couple more years if it’s at all possible. He’s super strong.
It’s his heart. Remember the story with the clot the size of a football pressing on his heart? I’m convinced that’s what kept him alive this last round.
That surgeon said: man, I’ve never seen a heart handle a clot that big like that, in any person, let alone a guy in his sixties.
His heart. Strong heart. Big heart. Working with his boys. Working out with his buddies. All of it is connected.
People wonder how I keep going. How I do it. I guess recording my thoughts in here will reveal it. I’m not even sure how I do it!
I guess one thing: I find something to live for. The kids. That’s easy. I keep getting messages from young people, here and there, from different parts of my life saying how much they appreciate what I’m saying, my podcasts, my posts.
That’s all I need.
I’ll go through Hell for them. They know it. They know I’ll take the hits for them. It makes them feel safe.
They need me to be brave. To find a way to wake up these peeps who can fix this shit.
The next thing, I guess, is finding things that keep the spirit going.
If working on my stupid toilet makes him feel competent and part of the world again, so be it.
That’s the worst part, when you feel so detached from the outer world. But you still have to DEAL with the outer world for tasks and things like getting your oil changed, and people are so incredibly dense about how difficult it is in OUR world. And they just don’t care! They don’t care that I might pass out or it’s too hot for my body to wait and wait for them to answer my question.
I’m kind of tripping out that I did as well as I did in the heat yesterday. I didn’t have my IV bag or anything.
That’s what’s scary these days. I got trapped in the U village for hours, and fortunately had access to broth (and frozen yogurt, whatever, it works, and it’s moist).
I don’t know. I feel like I was drying out earlier this spring when it was this warm. Who knows. It’s so hard to determine what makes things go up and down.
Ugh. I really should eat eggs today and do my routine. I’ve already taken my two days off from bed this past week. That’s not good.
Ok toilet is fixed! My dad instructed my bro! We had good chat. I love him.
I’m going to go hang with some PEOPLE. See if I can wake up or need to call it a night.
I used to party until 3am, 4am, 5am sometimes. I keep remembering these awesome stories. I’ve got to write them down!! I need to call each friend and go over them. I don’t remember everything. What I would REALLY like is to record part of the conversation and then make a podcast mash-up of my friend’s sharing some hilarious Julie Party Stories. Oh that would make me so happy!
See, this is the part that keeps me going. A fun project like this and an excuse to call old friends. That works!
My friends that were much younger were always in awe that I could hang so tough for so many hours.
Thank goodness for our weird Negrin hyperactivity. It’s probably what keeps my dad and I alive.
People are so surprised we can do what we do, even sick.
He sounded so good after doing this task! My brother said would work on breaking shit around the house.
I’m responded: um, I think there’s always shit to be done without having to do that!