None of it feels real 6.11.19

This is the table that Sarah put together (Ikea, of course, on sale! Now I know why that and the coffee table were so inexpensive, they were hell to put together). My mom’s first question: did she have any leftover pieces? Hahahaahah very funny. As a matter of fact, she did NOT. Eyeroll emjoi. Somehow I managed to find paint that matches my awesome bar stools from San Diego. It looks SO much better than before, small things like this make me very happy.

This is the table that Sarah put together (Ikea, of course, on sale! Now I know why that and the coffee table were so inexpensive, they were hell to put together). My mom’s first question: did she have any leftover pieces? Hahahaahah very funny. As a matter of fact, she did NOT. Eyeroll emjoi. Somehow I managed to find paint that matches my awesome bar stools from San Diego. It looks SO much better than before, small things like this make me very happy.

I keep thinking it’s not real. This can’t be happening. Not to my strong dad.

I couldn’t find the garbage can liners. I know this doesn’t seem like a big deal. But my dad was asleep and my mom has no idea. My dad does a ton of the house management. This place is HUGE. I’ve always lived in small places and been fine with it. I’d even be open to a tiny house. Less to furnish, clean and heat, is what I figure.

My mom wanted to move years ago but my dad refused. She always said: if he can take care of the house, then fine.

Now, we’re left scrambling to figure out how to create entirely new systems for everything. Someone has to drag the heavy garbage and recycling bins to the end of the alley (the trucks ruin the alley road so everyone agreed to do this). The boxes from Amazon, etc. usually get taken to his warehouse by him. All these little things.

I’d rather not use liners. I’m on the look-out for compostable ones at the very least. I’ve become a little bit obsessive about reducing my waste. It’s clearly something that I can focus SOME control over. I’ve always been very proud of my carbon footprint. I didn’t own a car for years. The one I drive now is a hybrid. I’ve always been good about recycling. I learn which numbers mean what in each new city. But now I feel so frustrated that I throw the medical supplies in the landfill. The amount of BPA coasting in my veins….

The guy I was with in San Diego used to live in the desert so he encouraged me to more careful about water. My one thing that I’ve always indulged in is long showers and baths. Well, I’m better about those now simply because it’s not very relaxing when you have a needle in your arm. When I take baths now, I have to have my arm over my head the entire time.

Not terribly comfortable. Though baths are good for this body. It’s an excellent way to stay hydrated. I need to invent something that allows my arm to safely float ON the water. But yeah. Lots of time to focus on that!

I think the estrogen patches might be helping with the hydration. My bestie is the one to figure that out! It could be so many factors, who knows. I’m dreading the hot weather. I’ll be trapped indoors most of the time. Being in a car is super dehydrating for some reason.

I keep thinking about the post I wrote last night. I want to take it down so badly! I often want to take things down. This is in large part why I have kept my content on things that I can control. Sometimes, it’s…so much. I’m putting out so much, I can’t even recall the hard stuff I’m posting anymore. I don’t even know if it makes sense!

I guess that’s understandable given the circumstances.

Sometimes I find myself just standing in the kitchen staring into space. My mom and I are both zombies.

I asked him yesterday if he’d be open to meeting with my ND.

He said No.

I asked if he’d be open to a Skype appointment with the doctor who saved me in San Diego.

He said No.

I’m very concerned he is done.

Like I’ve said, once that Will to Live is gone, there’s not much you can do but keep them comfortable and cater to their wishes.

There was a nurse awhile back, at the ER, and somehow we got talking about that.

He confirmed it. He said he’s watched people just give up, and then it’s over. That’s how powerful the mind is.

So many people don’t want to * believe * there is a body - mind connection. Ok. Don’t believe it.

But it exists.

I’m very tired today. I woke up at 3am and didn’t fall back asleep for several hours. I’m so used to laying in bed, dozing, that I don’t even bother trying to read or anything.

I finally got up and took a CBD pill and some GABA which I’ve introduced into my sleeping potions. I try to mix things up as much as possible so my body doesn’t get used to anything too much. I’m failing miserably. I also use nicotine patches to sleep. I know, I know super weird. YEARS ago, someone mentioned that they can help people with ulcerative colitis.

And it did! They also helped me sleep and that’s primarily what I use them for - but they may also be helping with the inflammation. It’s been more than 20 years ago. I’ve gone through some periods where I’m not using them. I used to use one third of a patch. Last night, I had on one entire patch, another sliver. And then I put another half on at 6am. In the grand scheme of things, this isn’t going to cause anything like a serious addiction or create significant toxicity for my body so…it stays. It always work, and right away.

I’m trying so hard not to get addicted to any hard stuff. The last thing I need is an addiction. I’ve met too many addicts in the IV clinics who warn me about how fucked up a benzos addiction is. I met one kid - young! maybe 20 years old - who already had a heroin addiction. Oh, such a sweet boy. I wanted to adopt him. He clearly came from a wealthy family. They’d hired a sober companion to come with him from LA to San Diego.

We had such lovely talks. I did everything I could to impart some love on this kid in the short time I spend with him. Often, they would spend a couple of weeks in San Diego at the clinic so I’d see them more than once. We must have overlapped a few times while I got my saline IV bags.

That all feels like so long ago. So much happens in such a short amount of time in my life that things that were only a couple of years ago feel like 10 years ago.

I have to morph and evolve at such rapid speeds, I don’t ever feel like I’m on solid ground. Adjust, pivot, morph, adjust, pivot, morph, adjust, pivot, morph.

I don’t see how he is going to make it out of this one even though I desperately want to believe he can.

It’s too many hits. And he does have age against him now.

His arms are so skinny! He’s never, ever had skinny arms. I haven’t either.

I think that once I look like what people THINK I should look like, it will be too late.

I’ve never had spindley arms or legs. Not even as a kid. We aren’t a super “cut” family.

I tell the doctors now, well the cool ones who agree with me: there is so much cultural bias, especially in a place like Seattle which has Scandinavian roots, about * what * I should look like if I’m not eating that much.

Lemme tell ya! First of all, age slows the metabolism. Then you add in five years of menopause which really slows it down. I’ve heard chemo also slows it down, all the women, at many different ages say they’re bodies never go back to pre-chemo metabolism.

Then, every time my diet shrinks, my body adjusts to the new diet after a few months. I mean, it’s doing it’s job! It’s saving my life, that slow metabolism, just like it’s supposed to.

It’s just confusing for people. It’s even confusing to me. But I can see the differences in my skin and how the malnourishment is impacting my overall health.

I can’t go several weeks without those expensive IV bags anymore. UGH! I’m so so close to getting another source for those at a much cheaper rate. But it all moves sooooo slooooow.

One doc, who I used to like, told me straight to my face - and I brought my mom that day because I suspected he’d try to pat me on the head, I asked a male in my family to join me but he said No - that he’d prescribe more IV nutrients for me.

He did not.

My home infusion company kept calling and calling on my behalf because they are awesome that way.

What a waste of time.

My mom is in shock still at how cavalier they are with his life. Oh, that’s fine. Oh, no we can’t do surgery anymore on him. Oh, yeah don’t forget to pay on the way out!

No, they don’t say that last part but it’s buried in there.

When I went to New York City in 2017, I visited Sloan Kettering to meet with a GI specialist. He ended up being a total loser.

I’d heard that patients felt like it was a “factory farm.” Just the kind of feeling you want when you’re fighting for your life.

Like you’re barely human, just a number.

Before I could even GO UPSTAIRS and check in with his department, they made me wait in this “registration room.”

I remember because it was so ridiculous when I realized what was really going on.

I had to meet with someone about my INSURANCE, of course.

She was so cold. Sometimes I like the chick-chock New York style. I remember being panicked when I first moved there because you HAVE to order quickly or you’ll create mutiny in the line behind you.

When I had friends from out of town and we’d stand in line for bagels (OH BAGELS OMG NEW YORK BAGELS), I’d prep them: ok figure out what you want now, there’s no hemming and hawing once you get up there. Everyone is just as hungover as us and grumpy.

Inevitably, one would get up there and start asking about the blueberry bagels and I’d feel the impatience growing within seconds from others in line.

But I didn’t like the chick-chock way this Sloan Kettering woman was asking me questions. Like I was a fucking robot.

Basically: your money is more important than anything else to us. Not even your life matters as much as you being able to pay your bills.

There’s an article that came out yesterday about how people have to use GoFundMe to raise money for their medical needs. Our country…so fucked up.

What’s really strange to me is how so many people think they’re not at risk. Maybe because they have a bunch of cash. Maybe because they’re related to a doctor. Probably because they’ve never had any serious health problems.

Statistically, the chances of the majority never dealing with this crap is very, very slim. At SOME point, either them or someone they love will be “in the system.”

I just hope I’m around long enough to help them navigate it.

You learn so much each time, it’s bananas. It keeps changing too. Policies, coverage, treatment options, all of it. Keeps changing.

It can make your head spin.

I can’t believe I fucked up by not giving all those doctors my new supplemental insurance card. It literally never crossed my mind. I thought it all went through Medicare. I still don’t understand how it all works. My mom offered to call each office and explain what happened, and give the new info.

She’s losing HER mind by being stuck in the house so much.

The movies never do it right. They don’t show what it’s REALLY like when someone you love is dying.

In the movies, it’s all about imparting wisdom, and quaint family gatherings and bedside confessions.

In reality, it’s chaotic, and confusing. People are tense and snapping at each other (well, we are, I can’t imagine we’re alone in that).

When I met with a friend who lost his wife - someone I worked with - I was struck by angry he was. Now, I get it.

I don’t know how we got on the topic of her actual death, me and my curiosity I’m sure, but I also don’t like to shy away from that. Often people WANT to talk about that stuff.

Ugly stuff doesn’t bother me.

I literally feel like I could tell ANYONE: your demons don’t scare me. I’m buddies with a WHOLE bunch. They’re assholes, for sure, but not scary.

Everyone has demons.

Everyone has ugly bits.

Everyone has their struggles.

I mean, I’d probably be taken aback if someone confessed to being a murderer or something! Or, if they shared how they stole their grandmother’s money. I saw that on a TV show once and was, of course, appalled, but I’ve read enough by now to know it happens WAY more frequently than we know. Sick people, disabled people are often abused, ignored and neglected.

Especially in a culture that does not honor the elderly or the sick.

Greed. I seriously don’t get it! I pride myself on being able to tap into so many human emotions, especially these days, and understanding human psychology. That’s so much of the impetus of my podcast. What makes us tick? Who are we REALLY? When we are truly honest, WHAT are we?

But I don’t get greed.

I’ve been giving things away since I was a kid. Sometimes right off my back! I think one time someone complimented me on my cardigan - I used to have a serious cardigan and hoodie problem, I also like buying socks for some reason - and I took it off and said: you can have it, I rarely wear it.

They were so shocked! I was like: what? I have a zillion, I rarely wear this one and if you wear it all the time and love it, it would make me so happy to have you have it.

I hate when things are used. I return things all of the time, not just because of the money which I’m also very mindful of, but because why keep something I’m not using?

And then I see all this hoarding around me, in this culture, in this country and I don’t understand.

Why keep something you’re not even using?

When the economy tanks - and that’s a hard “when,” not if - will people hoard even more? What drives that? Why is that part of the human condition?

Because I don’t seem to have that tendency, I really struggle to understand it.

Why do we have to EXPERIENCE something in order to feel empathy about it? Why do some people have SO much empathy WITHOUT experiencing something awful? Why is it such a small portion of the population? Is it nature versus nurture? Or is it both?

Can we teach the kids to be more empathetic? I think we can. I work on it, at least. I’ve been talking to the kids since they were small about how not everyone is lucky as them. One time, when we were camping in eastern Washington (do I capitalize the eastern if it’s before Washington? I can never remember this. I wish I had better grammar lessons growing up. I’m too tired to google). In the middle of staying in a wonderful condo, we took them for an overnight at the local campground because they desperately wanted to go camping.

We ended up in staying in state park that I’d gotten kicked out of years ago. I was with Shannon - the one I mentioned yesterday - oh that’s a good story. I want to do 30 days of party stories. I REALLY want to do 30 days of slutty stories but I’m worried that will be TOO much for people. So I’ll bury the good stuff in those stories.

Usually, it’s the context that’s the most entertaining. Plus, I’ve forgotten a lot. Some people would be horrified by that. I think it’s hysterical.

I just don’t have shame about making out with some randos over the years. I like kissing! A lot! So what the fuck! It’s better than…say, I don’t know, destroying an ENTIRE PLANET.

Priorities, man. Priorities are all screwed up in this culture.

Anyway, ends up there was a fire ban at the campground. One child, I will try to mask which one because I have no desire to embarrass anyone now that they are no longer young, threw a fit.

I want a fire! I want to roast marshmellows!!! It was a bit over the top, but my younger brother, being the patient soul that he is, got in the car and found a local Walmart or whatever. He bought this little stove that had little blue flames and the kids got to roast their marshmellows. I’d already brought a bunch of junk food - I’m all about healthy eating the majority of the time but I also spoil them rotten too, I think it makes for a more balanced eating habit as they age, they understand there are times for the junk if the rest of the time, they’ve eaten well. My brother brought some more.

Where the fuck am I going with this? I just like telling stories!

We went through the drive-through Starbucks on the way back to the condo - dang these kids, no wonder they’re freaking out, they only know a cushy life - because the adults needed caffeine after that night.

I RARELY ingest caffeine. I’m very, very sensitive to it. I’m already kind of jacked up without it. I prefer depressants most of the time. But sometimes I’ll get a chai with a half shot of decaf. That’s my road trip drink.

I guess it means my liver doesn’t methylate well? I was at a functional medicine conference years ago and they were talking about people that are sensitive to chemical smells. I used to lose my shit as a kid when my dad painted the walls. I can’t walk down the cleaning supplies aisle at Costco without getting a headache.

And this was well before all the cancer! I’m just this sensitive little organism. So annoying. I hate it. But then, I guess, I wouldn’t be me if I didn’t have things like this.

Sensitive.

Ugh.

My friend, who is one of the most brilliant nutritionists I know, heard me mutter: i can’t drink caffeine at all. She said: do you also react to smelling chemicals like cleaning supplies, etc.?

I said: uh yeah, how did you know that?

She said: not being able to tolerate caffeine or those smells means your liver can’t methylate well.

Someone at that San Diego clinic theorized that it’s a rotten liver that causes cancer. I’ve never had the bandwidth to research that. I miss that. I miss being able to digest tons of science information and parse it down in my brain to information I can use. It sucks.

I write all of the time now! But I can’t do the science. Go figure. It was never my strong suit to start with - I am TERRIBLE at chemistry - but I could do it. There are aspects to science that work well for me. I like developing theories, testing them, and adjusting variables, and teasing out what works and what doesn’t. I’m not as good at * seeing * the actual Kreb cycle, or understanding how the different biochemical reactions impact each other.

I’m in awe of the people that can see the biochemistry and all their connections between different pathways throughout the body. I have one ND who is so smart at the biochemistry piece. It’s truly an extraordinary skill.

Most doctors don’t know shit about biochemistry but it’s really the root of EVERYTHING. if you don’t have a handle on the biochemistry, especially hormones I’m finding - since they literally control every function - I’m not sure how you can really practice medicine.

And yet.

I digress. Again and again.

So we’re in line at the Starbucks and I remember jonesing for my drink. The kids start whining about cake pops. I just lost it.

I was like: are you serious? We just spoiled you rotten with junk food. You got your roasted marshmellows. AND the junk food. You got a vacation WITHIN a vacation, and now you want cake pops. Enough. The adults get to have their drinks and that’s that.

The important part of the speech I forgot to write the first time I wrote this post:

You need to realize how lucky all of you kids are. How fortunate you are that you have a nice, clean home and parents that give a crap about you (they were probably 8-11 at this point, so I could talk straight - they like it, they appreciate it), you have plenty of food every day, you basically get everything you ask for - there are so many kids and people who have so little, who barely get to eat, it’s important you understand how extremely fortunate you. Now quit your whining, you’re about to go swimming in a freaking pool or lake.

Or something like that. That’s all stuff I’ve said to them over the years.

They all quieted down after that.

Empathy. Can it be taught. That’s where this started. I think they’re all pretty empathetic but I’m totally biased, so my input isn’t really valid. I think this generation of kids is naturally very empathetic on their own.

They SEE so much. We often underestimate how much they witness, how much they understand.

It’s in large part why I forced myself to stay awake all these years. I’ve mentioned before in one of my stories how I made a promise to myself at 12 years old that I wouldn’t become an adult that didn’t SEE anymore what it’s REALLY like to be a kid.

I kept myself immature in order to do it! Hahah just kidding. No, not really. I really can shift my maturity to hang with different age groups. I’m not super proud of the Peter Pan lifestyle I’ve led, there is still a source of shame around that and not living a real “adult” life. But given how I was raised, and the amount of responsibility I had at such a young age, it makes sense.

I’d like to think that at least I’m aware of it. Unlike the many, many people I’ve encountered over the years who think it’s no big deal to live in perpetual adolescence. I’ve also witnessed many, many examples of major immaturity from people who are technically living an adult life.

The trappings don’t mean shit.

You can see it now with these kids marching for climate change.

I keep thinking about that dude watering his lawn. I wonder how anxious it makes the kids to see the carelessness in which their planet is being treated.

I think about what I said on my most recent podcast recording which will be released in the next couple of days.

How if there were shootings in tech offices every few months, this world would look very different. How if many of these parents had to get dressed every day wondering if they were going to be shot at work, or at a coffee shop, or picking up their kids, or whatever people do these days, they’d understand the terror that these kids live with every day.

I can’t imagine it. I try. I really try. But I can’t imagine worrying about being MURDERED while sitting in math class.

And then to have adults carry on like it’s business as usual, and stressing over test scores and college applications….when they’re freaking out about whether we’ll be at war. They do! They worry we’ll be at war so what’s the point of college.

I do my best to reassure them, but I’m honest and real, which is why they tell me their fears. So I tell them: it might happen. But we’ll figure it out. You’re stronger than you realize. Your generation is different than the rest.

I really do want to offer teen classes that teach practical skills. I’m just not sure I have the bandwidth. I’m barely keeping it together these days.

Obviously. If you’re one of the handful of people reading here (I can’t look at analytics, it will freak me out if it’s above like 5 people. Am I the only one that gets freaked out about having my words read by many? By having a following that increases? My anxiety LOWERS when the numbers go down. Good I think. See ya. I know how on some days, I can flippantly un-follow without thinking much about it. Mostly, I rarely look at that stuff. Smoke and mirrors. Numbers. Eyeballs. If my words are meant to be read by someone, then they’ll be read by someone. If the numbers are supposed to increase, they’ll increase. I’m done chasing that shit. I’ll package my content, I’ll try to get my act together to send out a newsletter. But that’s basically old-school now, and I like appearing professional whenever I can these days. Following and un-following people JUST to increase my following seems like a huge waste of time when time feels so short. I feel bad for the kids. They don’t have any memory of not being on social media. Ugh. I think that a class on: How to Be Alone (and Off Social Media) would be cool. That and How to Be an EMPOWERED Woman would be fun to teach. I have my list….me and my lists….oooh How to be a Bitch! YESSS I’m totally calling it that. I like taking that word back. I consider it a compliment. Fuck yeah I’m a BITCH and that means ya don’t mess with me. And yet they still try….

Then you know that I wrote a post last night called: Am I losing my mind? Now if I was super fancy, I would link to it.

That’s my friend calling to tell me she’s not sure if she can pick up a hot chocolate for me before my appointment she’s driving me to! There ARE GOOD PEOPLE IN THE WORLD.

The fucking newsfeed.

We love the feel good stuff too, why do they do so little of it? I didn’t need to see the headline about ooh, I can’t even say it out loud. All the yuckiness these reporters are spewing into the world.

My friend Stephanie has a fabulous newsletter called Small Victories. She shares all the great stuff happening politically. It’s really awesome! I highly recommend signing up. And I un-subscribe from email lists like there’s no tomorrow (which, let’s face it, there might not be). But I won’t un-subscribe that one! I’ll even link to it! It’s my good friend’s cousin.

I only met her once, but you know how I am. I keep the good peeps.

It was a cool story, which I really don’t have time to share. I went to Thanksgiving with my friend up north. I don’t remember where, but I do remember taking the Metro North.

It’s a friend that i got into teaching cooking, she is always very sweet about crediting me both privately and publicly for inspiring her career. It’s really lovely. It makes me happy to know that I’ve done that for others, but she is always so vocal and appreciative (I guess we all love being appreciated!!??!).

Long story short: my friend’s uncle used to own a bakery. Someone brought this apple pie - but it wasn’t like regular apple pie - OMG IT WAS SO FUCKING GOOD. It was SO good that I remember it, geesh probably 10 years later. I sat across from Stephanie, one of the co-founders of this newsletter - and we had such a great chat.

FUCKING APPLE PIE. Can someone eat some REALLY good apple pie for me? If I say apple pie to my mom, I kid you not, there will be pie on the counter by evening. I should do it, and see what happens. You can’t even say turkey to this woman without her buying a turkey and cooking it within a matter of days.

She gets so confused why people are so overwhelmed at Thanksgiving. Granted, she cooked for 10-15 people SO many nights of my childhood. We never had * just * our family at the table. There was extended family, cousins, our friends, people passing through town.

Now. Her and I cook very, very simply.

Apple pie. How do I make apple pie vegan ice cream? I really need to get on this.

Oh yeah. I have a juice box from the ND office where I get my IV bags. The bags can drop blood sugar, so I have to constantly sip something the entire time I’m there.

Apple juice box it is!

I must get out of bed and get dressed for my appointment! I’m excited to see my friend. That’s the best part of having people drive me places. I get some company and laughter on the way.

Instead of me railing against the shitty drivers.

I’m sure we’ll discuss Keanu Reeves and that Ali Wong movie. I may have to watch it again! It was such a good one. So modern. The guy saying he’ll hold her purse. The millennial guy, of course. They get it.

Such a cute movie.

All right, I’m ok! Anyone that’s worried about me, know I’m safe! I get to hang with a friend who makes me laugh! Oh oh! She remembers my party days better than me. Maybe I will start a list on the drive, and get those stories added up. I’m thinking I may actually put up a post asking people to just post the city and rough year, to spur my memories. Damn I wish I wrote those down. My journals are so fucking embarrassing to read, I can’t bring myself to look through them and I don’t think I wrote down the really juicy stuff.

Just my meandering mind like I’m doing here.

Oh well, makes me feel better to type here than to face my anxiety and grief and fear. So I do it.

Thanks for reading this far, whoever is actually reading this far.

Thanks for SEEING me.

Much love,

Jules