I'm not feeling well today 8.24.19

I didn’t have a photo ready for today but bestie just sent this to me and it’s the perfect message.

I didn’t have a photo ready for today but bestie just sent this to me and it’s the perfect message.

[[NEW PODCAST is UP: It’s an interview with my friend Sean Cadin called “Vulnerable Men” - check out the links to articles on this page and listen to it on iTunes and Google Play!]]

I can’t believe it hasn’t even been two months since my dad died. It feels like it’s been two minutes and two years at the same time.

Something isn’t right with me. I feel so shitty so much of the time, I can’t tell if I’m truly sick or something is just off in my system. I don’t want to be typing right now but the alternative is laying here as the words swirl around my brain.

Damn, something isn’t right. It could be low blood sugar because I didn’t eat eggs yesterday and I missed Tuesday too so that’s only 7 eggs since Monday. Shit.

I’m working so hard. So fucking hard. My weight is stable at least. Ok I’m sipping my protein drink and that already feels better. Who knows what’s going on.

I feel super weird about what I wrote yesterday so I yanked the whole post down. I’m ashamed of something I wrote and the whole post seemed compromised but I’m not sure. I’m losing sense of what the old me and the new me would put out in the world

No wonder I feel like I’m going crazy! I have this BATTLE between the old codependent self (like me like me like me like meeeeeee!!!) and the more mature, healthier version who is like FUCK IT (fuck ALL of it). I’m going through SO much crap in such a relatively short amount of time that I’m forced to process it, figure shit out, and move to the next thing, I literally feel like the world is spinning today. That’s the sick feeling. Like I’ve been on a merry go round for too long - I’ve always gotten motion sickness easily. Another fun aspect of living in this fragile organism! Terrible match, my body and brain.

The thing I’m ashamed about is how I spoke about my privilege. I know that things are tough in my world, and after a day like yesterday, which already feels like last week, it’s understandable that I’d be frustrated about how I’m treated in the medical world.

But still.

Now it’s time to confess my other major fear about pushing myself out further.

I’m afraid I’ll become a dick.

I can be a dick. A ruthless one, if need be. But it’s not something I’m especially proud of. Though, I then think: what would a man feel about this?

Would it even cross their mind to feel shame around that?

If I’d become successful in my thirties…I would have been unbearable. I know this. That codependency, which I’ll admit, I don’t like to think it’s a “real” thing. But it explains way too much and there are way too many people who have gone through it to dismiss it. We all do that, I suppose, about so many things in the recovery and self-help world.

We tell ourselves it’s rubbish in order to not take responsibility. I’m a decent storyteller - it’s not hard for me to tell myself a story about recovery that’s not true.

When I’m under duress, or super stressed out., that superiority side of the codependency seems to come out, when I feel under attack, it really rears it’s ugly head. Wait, yesterday was Friday, not Thursday. Shit. I mean what happened at the doctor TWO days ago. This is what happens when I sleep so much, I lose track of time, and that’s why it’s hard to stay connected to the outer world. I asked my home nurse - does this happen? Do people essentially doze to death?

It’s hard to rattle her. She worked in the intensive care unit at a major hospital nearby. You can’t make an ICU nurse flinch easily.

Her eyes got wide, and she looked down to pause before speaking. I noticed because I was intentionally watching her closely for her reaction. I’m hoping she’ll be honest with me, but also unsure if I can handle it.

She says: no, not really, they’re really in an altered state of consciousness by the time that’s happening. You’re not like that at all.

But there was something she wasn’t saying. I know she is trying to protect me from what it is, which I think is for the best right now. She knows what I needed to hear in that moment. No, you’re good, don’t be afraid of that. But I still am.

That’s how I exist. Getting half answers.

Something changed inside my gut. When my frame changed, it’s like my gut shifted around too. I know my body really, really well. I give myself belly massages all of the time. I know the landscape. I’m forced to learn these things now, forced to pay attention. It’s scaring me, for sure. Things keep changing in there and I don’t have enough data to know how significant it is, or if it can be fixed. It looks like I’ll have to force that appointment with the surgeon.

This is what terrifies me the most. That something will go wrong - bowel obstructions can be deadly if not treated properly, you can’t have a section of bowel cut off from blood supply for long - and it will be chaotic, and rushed.

I’m afraid I’ll go into surgery.

And I won’t come back out.

Or worse.

I’ll come out even more crippled.

I have to live this way. And people get upset reading the news so they don’t.

As if looking away makes our pain any less painful.

It doesn’t, by the way. If anything, it makes it worse. But I look good! So that means all must be well!

I wish it did.

Nobody still can tell me what the mottling on my stomach is from. That’s not terrifying at all!!! (eyeroll)

So when I come across an insensitive person in the medical world…it makes my life even scarier. Because all I’m thinking is: are you the kind of person that’s going to be in the ER during my last moments? Are you the one that’s going to make some sort of call that could make my life worse than it already is? My level of trust is so low. I’m reading about the lead in water in Newark….

The fact that so many Americans have trusted our government and our medical system so blindly for so many years is a huge source of frustration. How can anyone NOT be skeptical? What does it TAKE? To realize how corruption works and that we are just as susceptible to it as any other country?

The thing that I’m upset that I wrote was about my privilege but I didn’t write it using that word. Let’s see if I can do it right this time.

I’ve been extremely careful about how I wield my privilege in the medical world. It’s it’s own world - it doesn’t function like the rest of our society so a lot of the times, it’s not worth it to say much. I’ll mention another doctor, of course - that’s a lot of why things have been easier, because I have literally “protecion” from a few key practitioners so the others back off. But I almost never mention the senators or anything like that because there is so much arrogance in the system that this will often make things WORSE. Especially in Seattle - people have a strange relationship with privilege and power and leverage. I “get” New York much better even though in a lot of ways, in my own demographic, I was kind of low in the pecking order. Still. I understand it. I even picked up San Diego pretty quickly. But Seattle? It’s this weird mix of old blue collar city now mixed with a ton of new money.

Either way, I need to be cautious.I don’t feel good at all. I need an anti-nausea drug, Zofran. Hang on.

I almost couldn’t find it. This is why I need someone to help me organize my stuff! I can’t afford to have that sort of thing happen, especially when I’m feeling so dizzy.

I hired someone to help me but she can’t start until the 2nd. Dr. H just texted to say my motility herbs are ready, but I can’t drive to get them. My new girl lives down the street so this is something I could have her do for me.

I can’t wait to have the help. I sent an email to my drivers to ask. These are the kinds of things I didn’t use to ask help with, but there’s no way I can drive for the time being. The dizziness has slowed down, but something is definitely off.

Anyway, I’m just feeling scared again. I’ve GOT to focus on finding a gastro doctor that can help me. I don’t know if I’ll survive the next major incident. My body is so compromised. I look at that photo where I’m all excited that I look like my old self.

And realized that to a lot of people, I probably don’t look like my old self at all.

I came up with the prose to go with a photo from a couple of months ago when I’d shrunk down even further. Explaining how invisible illness works.

I’m procrastinating taking responsibility. Ok I’ll try again:

I had a little DO YOU KNOW WHO I AM? rant yesterday which is beyond embarrassing, cringe-worthy and so gross. I take full responsibility for it and how lame it was. I will give myself a break and realize that I’m entitled to a little bit of entitlement. It’s just not a way to LIVE and function all of the time.

What I meant to say is this:

I’m appalled and disgusted by how I’m treated in the medical system. If ME, someone with a Mercer Island address and white skin, educated and well spoken, is treated so badly, then how else is everyone else treated????

It’s incredibly frustrating how I’m constantly having to tiptoe around these offices. Offices that wouldn’t be getting the income they do from 20 million people that would have been thrown off insurance if the ACA had been repealed…so yes, sometimes I’m like BLLLLEEERRRRRGGGG all I want is a regular appointment! Not to show up TWICE in a matter of weeks and be told I can’t see the doctor. I don’t think that’s too much to ask!

I’m not asking for a red carpet!! (Though I will next time - and not because I have friends with some power, but because it’s the RIGHT THING TO DO after upsetting a CUSTOMER - that’s what I AM since it’s a for-profit industry, our lovely American medical system. We pay so much AND get treaded like shit here.)

These experiences often leave me feeling powerless. When I feel powerless, under attack or some combination, that superiority side comes out. I don’t like it at all. I want to live in the healthy center - not these extremes of feeling like a tiny piece paper floating in the wind and the hulk. It’s a frustrating thing! I want to be healthier about it so much!

I’m working on it. If for no other reason to be able to model healthy behavior to young people. I have a long way to go, but I’m on the road!

The kids ask me - not the related ones! - in an almost whisper: are we going to end up at war? What’s the point of doing this school work if we’ll be at war in a few years?

I try to be careful with my answers. Their psyches are so fragile at that age. I always try to be careful with my words with young people (even though some still don’t seem to believe this, even though I’ve spent years writing health education curriculum for them, even though I ran training others HOW to talk to youth) because I know how one sentence, one concept can lodge inside their soul and inform the rest of their lives. Not that anyone is listening that closely to me! Or that I have the kind of power that a full-time parent or daily teacher has. I don’t have either.

But they know I tell the truth, which makes it even more nerve-wracking. They trusting me to say something that’s REAL. It’s a balance - finding a way to communicate an answer to their question so that they feel satisfied and not put off, but also not scaring the living shit out of them.

I think I said: I don’t know. Nobody knows. You have to keep moving forward with your life and know that you’ll be able to handle whatever happens.

I guess this is a good response to all kinds of fears that teens have. I try to instill some level of power when they already feel so powerless over so many things.

It’s such an automatic thing to want to have a solid answer for kids but I’ve found, especially with teens, that saying: I just don’t know honey - can often be the best thing to say. It’s a vulnerable thing to do - which is my topic for the latest podcast!

It’s hard for them to live with the ambivalent answer, but also powerful to realize that adults don’t have it all figured out. That it’s OK to NOT know things, that it’s part of being an human, being unsure about something. They’ve got to learn how to live with ambivalence. That’s the way I look at it! But maybe I’m just too nervous to give them a more specific answer! I’ll own that.

When the kid said he was stressing about the Amazon fires, I said: so do something, get involved, speak out about climate change.

He said: I can’t do that. I’m just a kid.

So I pulled up Greta Thunberg on my phone and showed him - the moment that a smartphone comes in handy with a teen - and said: you can do ANYTHING. If you want to work on this, there are millions of kids all over the world feeling the same way as you.

He didn’t say anything else. That cusp between middle school and high school, boy and man, confusion about power and what it means to have power in the world.

The seed is planted. That’s all I can do. That and prepare them with actual life skills. I keep thinking about how I had my little cousin help me with the medical syringe. The other kids like doing it as well.

At the very least, these kids will leave the house knowing how to cook and administer basic first aid!

I look at some of the kids that are leaving for college and I know with certainty that many don’t know these two skills.

They need so many of these types of skills.

Even the wealthy ones. Conflict resolution! That’s another one to add to the list. I’m hearing of a situation that I have to be vague about. Let’s just say: these kids need to know basic, if not sophisticated, conflict resolution skills BEFORE leaving for college.

Sigh.

So I went on a rant yesterday about privilege though I didn’t couch it in those terms. It pisses me off so bad how I’m considered a number, a rando, a nobody, a piece of trash in the medical system.

I think this week’s experience felt so intense because I’ve been going to other offices now that treat me so well, like I’m an actual HUMAN and not a number. I chat with the front desk people (one office and I have had our moments, but we worked it out, that’s what you do in my world, you may not always get along, but you work it out, that Sephardic blood is so strong, we don’t let go, we may get mad and stomp off, but we don’t let go, once you’re in, you’re in), I have actual conversations about their personal lives. I know when their own parents died, I care how they’ve been feeling and likewise, they want to know how I’m doing as a human being.

So much de-humanizing in our country. And so many don’t want to accept that that’s what’s happening. Nobody wants to think they live in a world where so many bad things exists, so it’s easier to pretend that it’s not happening at all.

Yet people watch TV shows about it all of the time. They like to think it’s only in the shows.

That are often inspired by actual stories! A friend’s friend started that show about the spy who got burned.

It was based on a real guy! He was super agitated and awkward and weird because that’s often what happens after you work in a field where no one can be trusted. He sold the rights to his story, I guess? Anyway, I think this friend is on his third show or something. The real version is often not very glamorous.

This appointment and the stories about the dudes, all of it, have got me thinking about control.

You lose so much control when you’re physically dependent. When you don’t have a job in the outer world.

Control is a tricky word, for many people it’s so loaded. I’ve only recently learned the term “financial control” from a friend.

I think back to each of those stories and realized that I need to go easier on myself. And them! We’re all just confused humans trying to figure shit out. And our generation got so many mixed messages, it’s no wonder we were all bumbling around. We were supposed to live differently than previous generations but with no templates or guidebooks. Just stumbling in and out of situations instead of marrying the first serious relationship when we were 22. We were supposed to be liberated, date with sex outside of marriage, openly, but with so few parameters or boundaries - our childhood full of unclear boundaries, latchkey kids raising ourselves. People have been sleeping together outside of marriage FOREVER, but within the societal structure, it was hidden.

So there we were in the 1980s, trying to figure out how to take on these brand new roles in a society that was changing fast at that time. Now it’s moving at lightening speed! WRITING these stories and then being able to read them a little later has given me such insight into my OWN life. What a trip! And it’s helped me answer these questions about things I’ve been so curious about. No wonder the dudes have been so confused. They weren’t supposed to be like our dads, but weren’t given a template on what the new modern man looks like. I feel like Barak Obama is an excellent example of the modern man, but there hasn’t been enough actual organized information or guidance on how to GET there. For all of us! And now it’s even more confusing because even more norms are being destroyed.

When I was at the airport at some point last year, I came across a magazine with a teenager on the front of it. He was 17 years old - I remember because he was my nephew’s age. He was from the midwest and had gotten in trouble at school for how he treated a girl.

He said: I don’t know what I’m supposed to do. What I’m not supposed to do. I don’t understand any of it.

This broke my heart. There aren’t that many “bad seeds.” We want to think there are, but there really aren’t. The problem is when those few bad seeds get together and go power crazy.

Not mentioning any particular situations.

Over the years of teaching, I had maybe two? Maybe three bad seeds. I mean, kids who were just…not good people, nothing the parents could have done. Like Stephan Miller - he’s an excellent example. Stone cold sociopath - I always forget the difference between psychopath and sociopath but I think he’s a sociopath. He gets off on hurting other people. That’s a very particular group.

But most people? If they’re acting out, it’s often from a wound. I try to be benevolent. I really do.

It’s just that I’m in a position when people act out of a wound, or without thinking things through, or just plain immature, it really hurts me.

This is why it’s been tricky all this time. I need the time alone to heal and make sure I’m giving my body everything it needs, which doesn’t always happen when I’m around others. It’s part of the deal with this kind of condition. I need my rest.

I also need help now.

I love my independence SO much, loved having say over my own life. Something I’ve had to say goodbye to slowly over the last few years. A lot of able bodied people have no idea what it’s like to lose the ability to walk the world as an independent adult. I had NO idea it was so challenging. No idea.

That’s so hard on me. Some people don’t mind being dependent. Some people don’t mind being at home all of the time. Some people don’t mind eating the same foods all of the time.

None of those things are easy for me.

But I’m also really lucky in so many ways. I really am. And I need to focus on that.

I have options. See. This is the mature grown ass woman version. Not the kid. It’s a tricky thing actualizing so late in life. So many bad habits, old narratives have been laid down in my synapses. Maybe it’s a good thing my brain has changed so much due to the medical stuff.

Maybe it’s giving me a gift. Maybe that battle between old and new and kid and woman will help me help others. Maybe not being able to THINK the same is in it’s own way, a blessing.

This the how I get through things. People say all of the time: I don’t know how you do it. I can’t count how many times I heard that during my dad’s shiva.

I try to find the gift from the shitty experience. Instead of looking at those experiences in my 30s as “failures” maybe I can look at them as “learning” experiences. Maybe I can turn these hard moments into storytelling that both entertains and educates, and if I should be so bold, maybe, hopefully, it would be a dream to have an opportunity to enlighten. I mean introductory level, of course. That’s what I did in cooking. I get people in the door. I’m good at taking non-cooks and turning them into cooks, teaching super fancy French meals was not my wheelhouse at all. I left that to my friends.

So I get that I said what I said yesterday was rooted in entitlement. It’s just so hard to have what I had - SOME, not a whole lot, but SOME leverage in the world, and to lose that while things are worsening.

I was serious when I said I want VIP treatment next time I come in. They laughed because that’s not how the medical world works. It’s not a fancy restaurant with a bitchy hostess, though that’s essentially the same set up, with the front desk people and the precious tables/doctors in back.

I remember learning the trick to getting good reservations in New York City. All you have to do is say you’re from a magazine or a well known blogger. I don’t know if that would work anymore but in the old days, it worked! At that director job, I was a total idiot and didn’t utilize my leverage AND my corporate credit card when I had the chance. I didn’t want to spend my program’s budget on dinners even though it was not just allowed, it was encouraged! I could have gone to all kinds of restaurants and events on the company dime.

And I didn’t. I’m sure THAT is rooted in self-worth issues. For sure.

I don’t want to live that way anymore. Maybe being around so much entitlement is actually good for me. Forcing me to raise my own bar.

I just don’t want to become a dick.

I need to ask people, maybe my people here, my close people, whoever to make sure they call me out. I don’t know. Maybe I’ll only get to 2k followers on IG and that will be it. Sometimes it just gets capped.

I’ve been doing so many things for so long, I realize how little control we really have over that.

Control.

The only way I can move forward is to get to that place in Buddhism where I detach from outcome. Both “good” or “bad.” Those have quotations because these things are always arbitrary in the end. Publishing my cookbook didn’t end up being the greatest thing in the world for me, health-wise and financially.

I’m very, very wary of so-called success and our culture’s interpretation of it. I want to define what success means to ME. I have to be so fucking careful now.

If I go down the wrong direction or don’t focus on the right part of my medical case that could mean death.

No pressure!

I’ll get my space organized. I’ll be better about asking for help. I’ll do everything I can to get my case ready to share with the world - or even pitch it to that new TV show called Chasing the Cure where they help people with really complicated medical cases.

I’ll do all that. I’m ready. It’s taken me a LONG time to get here. I don’t really feel like I have a choice. Even if I decided to get offline and get on match.com (lord, just writing it makes me anxious), I’d STILL need to find doctors to help me.

So I may say I have options, but really, if I want to get to 50 years old, I’ve got to find some answers regarding my gut.

But I’ve got to be totally aware of how I’m doing, and to address my mental health and physical health if one of those things started to go haywire. Nothing is more important than my sanity and my physical well being.

Nothing.

That’s healthy!! That’s a healthy thought! Wahoooooooo!!! Progress!! In my little computer with my elderly cat curled up next to me, curtains closed because I get so depressed staying in bed on beautiful days which makes this whole thing even more depressing.

I’ve also got to make sure I have the right people around me. I can’t have all yes-people, that’s for sure. For the most part, I’ve been good about that. I welcome criticism because helllllooo, that feels comfortable to me! But still. They’ve got to be at least working at getting woke on disability and open-minded in a general sense - or working on it along with me at the very least - I’ve got to be so so careful with this next chapter.

I remind myself: whatever is supposed to play out, will play out.

Let me reframe. I need to focus on keeping my corner of the street clean and that’s it. As long as I focus on the things I’ve learned the last couple of years in therapy - oh I need to write down what I’m looking for in a therapist! That sounds hard right now but I’ll get to it. Also, I’m going to write a letter to the place I’m staying up north and explain my situation. I realized it’ll be so much easier on me if I EDUCATE them on my needs, instead of waiting until something happens.

I’m learning! Slowly. Learning.

So if I focus on keeping my corner of the street clean, which means being accountable, taking responsibility for my actions, doing the best I can to be healthy, being a mature and thoughtful communicator and person, then the dick thing is less likely to happen. If something in a “work area” is hurting me in some way, all I have to do is focus on my own corner and what it is that I’m not handling.

If I expect others to act like grown ass adults, then I too have to act like a grown ass adult.

If things work out a certain way, the outcome shouldn’t impact my behavior because I’m just sitting in my little corner churning out content and keeping my own little area clean. Whether there are 5 people standing there listening and clapping or hating or whatever, or if there are 500, that can’t matter.

I just have to stay clear with MYSELF. I have to focus on honoring my own code, my own health, my own sanity. If others have a problem with that - let’s say I have to get offline for awhile, or I have to bail on a project - then so be it. Maybe going through all these problems is putting me in a better position to handle things. I’ve got to find some silver linings SOMEWHERE in my life!!!

Hmmm code of conduct. Maybe I’ll write an actual code of conduct for myself.

Maybe I could turn that into curriculum for the teens. I feel so bad that the boy in the magazine didn’t know wha to do! What was acceptable! What wasn’t. I guess that’s something I’ve inadvertently developed over the years. How to communicate that sort of thing to teenage boys. I’ll need to think on this. It’s different doing it in the classroom as a cooking teacher and as an auntie.

Developing actual curriculum for this sort of thing - well, I’ve never seen anything like it, though I’m sure there’s some decent content out there somewhere. I’ve found that it’s a waste of time and energy to not look through others’ curricula before writing your own. But I really don’t know if something like what I’m thinking exists. All those things I say to the boys (be the ones to HELP the girl that’s being hurt, if you find them annoying, just walk away don’t be a jerk) but what would be housed under? Not consent, it’s broader than that.

Hmmm…something to ponder.

Ha! Bestie always sends me great little sayings. The one I just got from her says: Be who you needed when you were younger.

Yup. That informs everything I do now. That and survival!

How the hell am I going to survive this next chapter? My insides a mess. The medical system a mess. The world such a mess.

Deep breath.

Deep breath.

I have no fucking idea.

Why I’m still alive. Why I can’t stop the words now. Why me.

I always think the same answer when I ask myself this.

Why not you.

Sigh.

I have a beach party I was invited to today. And something else tonight.

I don’t know what I’ll make it to. Sometimes I get out, and all I can think about is getting back home. How sad is that?

The outer world is scary in this body.

I need to shut my eyes. It must be warm outside, I’m very dry today which makes me sleepy due to the low blood pressure.

The nausea hasn’t totally gone away.

I hope someone can get those herbs for me. I hope I can make it out a bit this weekend.

I hope so many things. My brain so mushy. I think the words are done with me now. For now.

I guess it’s time to try SOMETHING. I suppose that’s the best part of having nothing left to lose.

Fuck it. I’ll have haters for sure. I already do.

(what if there’s a war?)

The kids.

If nothing else, I’ve got to stay sane - and I think that sharing my mental health struggles is a great way to be accountable and turn my pain into a project, and maybe help others feel less alone while I also feel less alone - and download my info in case something happens to me.

That’s the only way i can do this. If it’s ultimately going to help me and others, then I’ll get over myself.

Newsletter, streamlining correspondence, super organized data, all of it is necessary. I think I have to accept that my best shot is sharing more of my story and posting my medical case. I have to hope that it will lead me to some answers and help me maintain my sanity.

“If you talk enough sense, then you’ll lose your mind.” I love this line in a song, not even sure which song it is, it’s playing right now.

I’ve got to go. Something isn’t right. I really think this could be a bug of some sort. I can’t remember if I saw little kids this week. I have to remind everyone that the little ones can’t kiss me and I can’t kiss them when they’re sick, even with just a runny nose. My immune system is too compromised.

I hope it is a bug. I always hope it’s a bug.

The alternative? That it means something serious or is some sort of permanent thing….

I definitely think talking too much sense can make you lose your mind. Maybe i’ve already lost mine.

Maybe we all are. Maybe we’re having a collective breakdown in our collective consciousness.

Oh I got to go. Something isn’t right inside. I’ll be ok. If something is really stuck, that will cause nausea. I’ll take a nap, that will help.

I feel like I’m on a boat right now. Ughghghghgh

Your dizzy friend,

Jules