I forgot the computer keyboard 9.14.19

I forgot the computer keyboard 9.14.19

I have gypsy blood.

I forgot all about it. But while I was laying here trying to wake up, the song Gypsy by Fleetwood Mac came on and I remembered.

It’s from my Papu Albert’s side of the family. I really need to get together with my Auntie Vi. She’s his younger sister. There are still two out of the seven left. My Auntie Lalie - the redhead who lived next door to Steve Martin in Los Angeles - is also still alive. They’re feisty women. I wanted to write bitches but I figured that would come off rude. They would laugh and say HELL YES WE’RE BITCHES. Write it honey write it!

Auntie Vi also has a September birthday. She must be around 97 years old. I want to take her to 23rd Street in the Central District and try to find the house they grew up in. Oh! I should mention that although their physical health isn’t great, they’re both sharp as a tack.

Auntie Vi didn’t eat like everyone else. She was into nutrition long even as a young women and would eschew the fatty meals. She said they ate pretty healthy when they were really young because it was more cost effective. They’d eat vegetables and beans all week long and then splurge on a meat meal for Shabbat. This must have been the 1920s and 1930s when she was a kid. My Papu, her older brother, was born in 1915. If she is about 97, then she was born in 1922 so she would have been a small child in the 1920s.

How the world has changed since then.

I can ask her more about the gypsy blood. Their brother, my uncle, Raymond only recently died. He was the baby. And how we all loved him. The nicest guy on the planet.

He was in one of those marriages that everyone envies.

Read More

Long one 8.13.19 ds1

Long one 8.13.19 ds1

My body still hurts today.

I think I know why. I have something called Epstein Barr. It’s a virus that can cause flu-like symptoms. My ND found it a few years ago. But I have so many other things going on, it hasn’t been a focus. I don’t talk about it because it already feels so bananas that I have like six chronic conditions. I should disclose that I do get jealous of women. I get jealous of people who are healthy. All of the time. And this may sound awful and I never mean to minimize anyone’s illness or pain, but sometimes I get jealous of having only one medical condition. It sucks! I went through having one chronic condition (inflammatory bowel disease) for ten years and it was really, really sucky! It altered the entire course of my life! 

And now? I’d take it back.

What I have now, is too many. Way, way too much. 

When I push too hard, when I’m worn out, or haven’t gotten enough sleep, it flares up. And everything aches.  

Go on a trip by myself, and have to do too many things, it flares up. It really sucks. 

There is so much going on in this mind of mine. I don’t think I could quit writing in here even if I wanted to. SO MUCH wants out. Now that there’s a place for it to go, the words all bugging me: let us out! Let us out!

I’ll start here. I think I have a crush on a woman.

Read More

My body hurts 9.12.19

My body hurts 9.12.19

My body hurts so bad today. I don’t know how to explain it. It aches, in places I didn’t know a person could ache.

My new helper couldn’t come today, my other one can’t come today. So I had to stay up late doing a million things. I made a list of all the tasks I was doing with a little bit of a timeline because I myself was curious about what the hell ends up happening. Why I end up going to bed so late.

I can barely keep my eyes open.

I’m horrified by what I’ve been writing in here. Some of it sounds like literal gibberish. I don’t even know why some of these words come out of me. I don’t understand where they are coming from, or why they end up on the page. What if I’m really having a mental breakdown? What if I lose touch with reality due to everything that’s happened to me? I want to read this guy Donald Hoffman’s book, The Case Against Reality. But it also kind of scares me so I’m not sure.

I need to scrape these posts. What if people really are reading in here? What if I’m saying things that make no sense? What if I’m losing my mind? This haunts me.

When I’ve been sleeping as much as I have - wait, no, it’s not always sleep which is the weird and cool but also super scary part, I’m in more of an altered state, especially when I’ve been having pain - I don’t know what’s going to come through my fingers. Then I read it later and I’m like WHAT THE FUCK IS WRONG WITH ME?

Also, I can’t believe I’ve never tackled my intense anxiety attacks. Why I get so fucking weird when I’ve been confronted by a situation where someone wants to get closer, and I fuck it all up by getting intense and weird and say weird

Read More

I made it to 48 yo 9.10.19

I made it to 48 yo 9.10.19

It was a good birthday. Better than I thought it would be. Though I had to sleep most of Sunday and yesterday to recover from the trip. Still recovering.

I knew that would be the deal. Sacrifice is part of living in this body now. I have to trade food for sleep. Energy for mental health boosts.

So much sacrifice.

So many Americans don’t really understand sacrifice. How to navigate limited resources. What is more precious than the other, and which one to prioritize at different times.

So many still don’t see it. Where we’re headed.

Delay of long-term gratification. They want, and want and want. Right away. Amazon spoiling us all. Inst-photos, insta-hook up buddies, insta-meals, insta everything.

I feel different. More peaceful. Something major shifted while I was up north. I’m still un-earthing it, still kind of in awe of where it is I’m at now.

Not afraid. I’m still afraid of lots of things.

But finally.

48 years later, I’m not afraid of being my real self out in the world.

If the young people are good with it, then I’m good with it. No patience anymore for indulgent luddites.

As I message with two non-luddite dudes, encouraging them to get together. It’s making me think about how to encourage more med to get together, find ways to bond beyond the surface topics. I want the boys to grow up in a world where there is more of that, more connection, more structure and encouragement for men to have real conversations with each other. I have some ideas brewing.

I always have ideas brewing.

I have another story.

Read More

I made it back alive & ok! 9.8.19

I made it back alive & ok! 9.8.19

I did it!!! WAHOOOOOOOO!!!!

I traveled alone and survived just fine!!!!

Phew.

OMG I’ve been so so worried that this was something I couldn’t do anymore.

Obviously, I’d need to stay relatively close to home, but there are so many awesome places in this area, I’m ok with that.

I don’t even know where to start. I did have my computer up there but felt like taking a few days off from writing in here.

I did yoga! I painted watercolors! I made new friends!

I ATE IN THE CAFE! TWICE.

I did not have any alcohol other than a sip of a friend’s drink. I didn’t go in the tubs except for dipping my feet in them - which made them burn and scared me off from going in again. I asked the guy managing the tubs why they were so chemical-y - since they’re technically hot springs - and he said he was dealing with a new chlorinator? And hadn’t figured out the new chemical balance (yeah, got that buddy).

I think I’ve mentioned in here how

Read More

Here we go 9.3.19

Here we go 9.3.19

I still can’t believe he’s gone.

It’s too much for my poor mind to comprehend. Even though I don’t write about him every day, he’s on my mind a lot. Shit, I think I’m getting sore wrists from typing in here at odd angles. Ah well.

There’s this empty space that looms. I get sad when i watch my mom eat her meals by herself - she doesn’t eat at home much these days but when she does, it just feels wrong. They’d make these very simple meals - steak and tater tots, chicken and stewed tomato rice (Sephardic dish) at the main kitchen counter. On the rare occasions I’d be “eating” at the same time - I have the eating in quotation marks because most of what I was doing is making concoctions with powders and drinks, Chinese herbal tea, broth and vegan ice cream that I’ll often eat right along with the broth and eggs. Neither of them feel like food anymore.

Someone tried to recommend that I add spices to the broth and I just stared.

I said: it’s not food anymore for me, it’s medicine, it keeps me alive, that’s it.

I’m starting to get sick of the eggs and broth. I wondered when it would happen. I had too many ripe avocados and the only way I gagged it down was because I found some garlic herb goat cheese I hadn’t tried yet. I seem to be tolerating the goat cheese ok THANK GOODNESS. I try to not eat it every day. I’ve packed the freezer with different vegan

Read More

48 hours and counting 9.2.19

48 hours and counting 9.2.19

Does everyone else feel good during their birthday month like I do? I’ve always loved September. I loved being a teacher and going back to school. I love school supplies and autumn leaves, scarves, the cooling weather, all of it. Summer has never been my season, I was always too pale and felt awkward hiding from the sun. In the fall, I could come out from underneath the beach towels and walk the world again.

It’s weird to look at these old memories that pop up on Facebook or show up on my computer as I look for something else. My life changes so much that I’m constantly reeling from whatever crisis I just survived. God I hope this trip goes well. I feel ok about it, I don’t have a bad feeling about it. When I considered moving the trip later, I got this feeling like I was supposed to keep it for this week. I’m still in awe that we were unable to get to Vashon last week. Poor bestie is dealing with the struggle of finding the right medical facility for her fragile dad. The system is so fucked up.

She said straight up: it’s not about money! I mean it IS about money, but that doesn’t help navigating the system.

Yup.

My mom is the oldest baby boomer.

Read More

The days speed up 9.1.19

The days speed up 9.1.19

I gained three pounds!

Ok, so I peed a little later and lost two of them. But still!

I’m reluctant to share this part of my journey because there are so many people who struggle so much with weight issues and body image.

But it’s part of the deal in this strange life of mine. Being nervous about losing weight is part of my disabled experience.

I’ve been hanging onto the photos from the last few months because I haven’t felt ready to share this different version of myself. But this photo wanted out today so here it is.

I bought these swim shorts after the melanoma surgery when I was heavier than I’ve ever been so these are two of the extreme sizes I’ve ever been at - I took this last week so I’m actually “bigger” here than I was in July, that was a baaad month. I’ve gone up and down on my weight for my entire life. I’m very short so even a few pounds can alter how I look. Also, I should note that I often buy pants that are too big because I’ve never liked having anything too tight at my waist so many years of having stomach issues. It drives the salesgirls nuts, they’re always encouraging one size and I’m like noooooo…give me the ones that have a lot of room in the waist.

I like to be comfortable!

Still, these shorts.

Sigh.

It’s weird. It’s weird to have

Read More

Crawling through the tunnel 8.30.19

Crawling through the tunnel 8.30.19

After last weekend’s terrifying discovery - I’m still reeling it, “anxiety hangover” seems like an apt term - things are clicking into place. I’m wary, of course. Always wary.

But dang, I figured out an organizational system, I’m feeling ok about going out of town - which is a huge relief, I never know how I’m going to feel right before, I was such a stress case before that California trip last year, leaving my cocoon for any significant amount of time sounds scary these days but I can’t stay here, I refuse to have a phobia slowly creep up on me just like I refuse to become an addict (in full disclosure: I AM dependent on benedryl for sleep, I told my former California doctor who treats addicts, but thought it was an addiction at the time, he smiled and said that’s the one thing that you can’t get addicted to, you’re what’s called dependent, so I have trouble sleeping without it, but I won’t have withdrawals when I stop it, I’m looking for a recovering addict to come on my show, fyi, anyone out there? Anyone? - I said this week: I don’t want to get sicker and sicker and think, oohhhh I should have gone to my favorite place on earth (NOT Disneyland, have I mentioned here how I met a Versace model on the plane years ago to Orlando and CERTAIN FRIENDS MESSED IT UP good thing

Read More

Readjusting my brain 8.29.19

Readjusting my brain 8.29.19

I need to write my letter to the facility I’m staying at next week. I thought I’d write it here because then I’ll get it DONE. I’m feeling a little overwhelmed at the idea of going out of town on my own. It’s very intimidating! How weird is that?

For my 10 readers (I’ve bumped myself up to 10) who don’t know my background all that well: I used to travel on my own all over the world! I absolutely love it. I totally get that people who prefer company don’t understand this. But I really enjoy my own company - when I’m in a decent mood, of course, then like anyone else, I can get sick of my own company quite easily too - and I really enjoy meeting people from all over. I also love traveling with other people too. However, it’s got to be a good fit…or…well, I don’t need to explain that, right?

I know that traveling on my own is a very limited thing these days. I may never get to do this again. I’m aware of this. I’m always aware that the hug I’m giving someone may be my last. I’m aware of the last trip I take with the kids may be the last. I live that way. It’s just the way it goes in a medically fragile body that has so much cancer risk.

I’ve weighed the pros and cons and feel that this trip is super important for my mental health. I’ve been going to this place for nearly 30 years. I discovered it in a very magical way, a story complete with does in the meadow, rides from strangers, sunrises and all kinds of beauty.

It’s changed owners over the years

Read More

Iron infusion kicked my ass 8.28.19

Iron infusion kicked my ass 8.28.19

I’m feeling a lot better about my situation although I will get more data this afternoon.

My visceral massage lady said that prolapses happen over time. I can strengthen the muscles.

The nurse at the gastro appointment - I scored an appointment on Sept 16 which is the first day of my next improv session so I’m not thrilled about using up my energy to find out more data on my tush but this is my life - said it’s quite rare.

I responded with: well…I have had a lot happen to me.

She paused and said: yes, you do have a complicated history.

I know I’m headed in the wrong direction, let’s put it that way.

In more ways than one. I mean, my poor body is trying to defy gravity. It could be a faulty diagnosis at this point.

Read More

So scared 8.27.19

I’m debating whether I’ll share what’s happening inside of me.

Unfortunately, it’s not an emotional or mental thing that’s changed inside of me. How far does this have to go before others wake up? Do they not see?

The longer people take to wake up, the worse my condition gets.

If this crowd hears this, it will….

Well it’s not something people typically talk about. And it’s scary as fuck. If I was a regular able bodied person, it could likely be fixed up with a surgical procedure and I’d continue with my life.

This, for me, could be the end. Or more likely, I’ll end up with a bag. An ostomy. Which could end up being the best thing that ever happened to me. It could be so freeing.

But of course, I can’t help but worry that it will impact my personal life.

Then I think: WHAT PERSONAL LIFE. Sure, I haven’t allowed anyone close for awhile. But….BUTT

I don’t want to do this anymore. I don’t want to make these huge and heavy decisions.

My friend’s dad fell at an old folks home, broke his hip. They’d moved him FROM the assisted living so that this would NOT happen.

So not only would I be trusting someone to take a knife to me, I’d have to worry the entire time that there isn’t enough nursing staff or they’re using subpar disinfectant. Because bottom line!

BOTTOM lines are all that matters to way too many people. My life. My quality of life. Doesn’t mean much.

Unless I make it mean something.

I get it. I get that I’ve looked impulsive. Flighty. Fickle.

I can be all of those things.

To my own detriment most of the time.

There’s one though, who has known me since I was so tiny. He got the memo first.

He knew. What a strange child I was.

Because who knows what else is possible?

I may be flighty and fickle on the surface. But inside is a dogged girl.

Once I set my mind on something, I don’t give up.

If I lean into this, if I make it part of my story, if I control the narrative, if I’m the one that’s brave enough to share this sort of thing….

(what if nobody wants me)

(what if I can help even one person)

(what if I can help myself stay alive)

How do I become dogged about this particular thing? How do I say FUCCCCKKKKK it all!

I told my friend from improv because she’s super cool and open, and we managed to turn it into a bit! I mean, it could be comedy gold. It’s not funny to me right this second though.

But I think of Tig Notaro taking her shirt off on stage after she had breast cancer.

The crowd went nuts.

People love these kinds of disclosures - en masse, of course.

I’m still such a rookie, at improv, at characters. Still so so green.

Can I let one of those characters through in order to feel more brave? I wonder how do these actresses play these evil characters and then take off the make-up, put on regular clothes and go to the grocery store?

It’s not their own words they are speaking though. It’s not something that’s impacting their personal life - I don’t know this for sure because some of them do discuss how playing a certain character takes them to a dark place which does impact their mental health.

I’ve been studying these things for years. I had no idea why.

How do they use the language they’re using all day long at work and then switch it off? What happens if it gets murky? The play acting and reality? I suppose this is why so many artists struggle.

The words.

Oh those words.

My chains.

My liberation.

My way into hellish mental anguish.

My way out of the darkness.

I can use them to comfort.

I can use them to inspire.

I can use them as a weapon.

I get it now. The mighty pen.

It’s weird how you can hear a saying for so many years, but it doesn’t really sink in until a certain point in life.

Kind of like the phrase we hear since childhood:

If they don’t like you for YOU, then they’re not worth being friends with anyway.

Maybe it’s better that these people have walked away already. Maybe they’re doing me a favor. In a therapeutic setting, we’d discuss how these people are informing me of their abilities. They’re informing me through their actions. I have to listen to it. Honor it.

Because if I go down this next road - that now seems inevitable because how else am I going to find what I need to find in the short amount of time I have to figure this out and prevent an emergency surgical situation - it’s better that they walked away now.

I don’t know how to find the words to convey the fear. I think I’d be less afraid if it was actual death I was facing.

Isn’t it what everyone says: well I know I don’t want to live crippled!

How stupid we are.

How complicated life ends up being.

When - oh I said when not if - I share this new development, people will finally understand why I don’t know how much I can take.

Or maybe people already understand this. I have no idea. Fucking codependency. Always thinking about how my words land, always worried about the impression I will make.

I can’t think like that anymore. I can’t be afraid of being loved. I can’t be afraid of being trolled. I can’t be afraid of outside reactions.

I have to dig down further than I’ve ever dug before and find the strength to put this out into the world. I know if I do, I’ll get answers, help, leads.

The medical system is moving way too slow. I just heard from the nurse at my gastro office - the scheduler will call me back. I’ll get on the books there. I’ll get on the books at the surgeon, maybe in a month, if I’m lucky it will be that short. All the while, my intestines are slowly dying. Giving up.

My routine, the diet, all of it, forcing them to do their job.

NO. YOU WILL NOT GIVE UP and yes I speak to my body a lot. More people should. As if our cells aren’t going to pay attention to what the brain is telling it. That’s not woo-woo.

That’s fucking science.

I’ve put this off for too long - the hunt for a magical gastro - and now there is no other option.

Well there is one other option.

Ignore it. Let it all go sideways.

So many people do. Put things off. Don’t go to the doctor. Try to sweep it under the rug.

I’ve seen it with my own two eyes. Many times over.

Friends, family of friends, I get it. It’s really, really hard to live this way, with my mortality staring back at me every day in the mirror. The grim reaper standing in my bathtub, smoking a joint, giving me a chin up hello in the morning. What’s up dude? Not today?

No, not today.

But maybe next month. Next year. Who the hell knows.

My dad shuffling around the kitchen all winter with his small cough. I never heard the bad coughing until the end. It was always worse when he was laying down, which is why I didn’t know how bad he was for so long.

My dad. He’d sleep like a turtle. With two eye masks! So small that sometimes you couldn’t tell if he was even in bed.

I keep asking my mom when she misses him the most.

She says on the way home from work. They’ve been driving together for awhile now. I think a good five years? Maybe longer.

I asked about night time. She reminded me that they never went to bed or woke up at the same time.

It’s in the car.

I miss him sitting on the couch, where I could holler from wherever in the house - always drove him nuts, me yelling from a different part of the house, I think he faked not hearing me more than once so I’d come to him - where is the Goo Gone?

This house houses everything. Every possible item you could possibly need. I wasn’t joking when people used to talk about coming here if the world fell apart.

It seemed so farfetched, that idea.

I know what to say to comfort people who want to leave their bodies.

I know what to say to the kids so that they can convert their depression into action.

I know what to say to help people navigate our fucked up medical system.

I KNOW WHAT TO SAAAAAAAAAYYYYYYYYYYYYYYYY.

But it means getting over myself. Getting out of my own way. Letting go of these fears.

I used to want the opportunity I have now. To have a platform that I can grow. I’ve spent so many years walking toward this and now that I’m here?

I’ve envisioned this metaphorical mountain for years - me climbing up, nothing to do with the ex, and everything to do with ME - and I’ve watched others peel off the path to pair up, have kids. Or change to a more low key career, whatever. They kept peeling off.

I tried! Many times. I want to go to sleep, I’d crawl off the path and curl up in a ball. plop myself down next to someone, use my backpack as a comfortable pillow.

Comfortable…I want to be comfortable so bad.

A storm would pick up, the winds would howl, wolves would start chasing me, something a little different every time.

So I’d grab that pack, throw it back on, and keep trudging uphill, looking longingly at the people waving from their comfortable homes, smoke billowing out of the chimney, a warm meal waiting for them inside.

My fingers chapped and sore, my feet full of blisters, my back aching from the long trek.

I’d wave back and keep on hiking.

I had no idea what it was that I was hiking to, just that I was supposed to keep on going.

Keep on going.

I swear it was 8:30am a second ago. How did my brain see an 8 instead of a 9? Geezus. My ride is coming in a half hour. Thank goodness someone can drive me to the iron infusion and then across the city to the visceral massage. The whole thing sounds exhausting. But it must be done.

My life keeps shrinking. I keep shrinking.

I am proud of myself for getting my weight back up. I wonder what will happen after I get off the steroids though.

I keep thinking I’ve made all this headway and then I see a photo.

Is that really me?

I listen to the recording with Sean, who has known me for so long, and I SOUND like me. I’m still me.

I’m still in there.

I know why I keep wanting tattoos. I want the outside to reflect all these changes I’ve had on the inside.

If I could get over this hump, I can then share what’s happening, the journey of finding the right doctors. Like I’ve said before, it would make the Kardishan show feel like watching cement dry.

Manufactured drama??!!!

HAHAHAHAHHAHAHAAAHAHHAAHAAA no drama needs to be manufactured over here!

Ok I’ll share it here and see how I feel about it for the next few hours since nobody reads in here, and I’m posting so early.

I think it’s a rectal prolapse. My friend figured it out. I’ve always suspected she was brilliant but chose a chill life after being raised as a doctor’s daughter - a brilliant doctor. The kind you’d sit in an appointment with and he’d start calling people all over the world! For real. He’d call his buddy in Europe, a friend in New York City, and consult with them on your case.

That kind of medicine is over.

Someone who works in the system says the new breed of doctors prioritize their workout schedule - for real, there was a patient that needed to get in and the doctor complained because she wanted to get to her Orange Theory work out or class or whatever.

I’ve only learned this recently. I do love those millennials. So much. But I don’t like this aspect of their generation. I used to poke fun of one doctor because he kept taking several weeks off for one conference. I said: I’ve been to those conferences, they’re not several weeks long, because most people need to get home to their private practice, their other work, their PATIENTS.

He didn’t like me poking fun of him. We had a moment.

I’ve noticed his schedule isn’t full of so many gaps anymore.

I’m like dude, if you want the business model where you have a private practice, ESPECIALLY when dealing with super sick people, you can’t keep leaving town.

He didn’t like being upbraided. Of course. Who does.

But this is how I stay alive.

The surgeon that was recommended that I meet with is someone I snapped at awhile back. It wasn’t major. They told me that it was not scar tissue causing my problems.

I retorted that they don’t have enough data to make a conclusive statement like that.

That was all. But of course, I’m so sensitive to even my own words.

(do they still like me?)

I guess I should get off here and call that office. Or maybe I’ll do that with my friend while I’m sitting and getting my iron infusion. I was hoping to do it at home but I guess you have to be in the hospital for this bag.

Ugh.

I hate going to the hospital. So much.

My dad.

That was the last time I was in the hospital. The new ones, so pretty, so clean.

That pretty decor didn’t keep my dad alive.

I wondered. How the grief would change. I just want him back in the house. I want him shuffling around the kitchen and being territorial.

I was trying to get past my mom in the kitchen, and she was moving slow. She moves very slow. But she’s like the tortoise in that story. We’d joke about how my dad is the hare, hopping around, always moving so quickly but somehow both of them would both get tons of shit done, each moving at a pace that worked for them.

Anyway, if you were taking too long - something I’d rarely do, so many years of working in kitchens, I still, out of habit, move to the side and press my body flat against a wall when servers walk by me in a restaurant, you have to be still and not have any limbs hanging out while they pass with plates, or in the kitchen, with knives and large pots of hot food, very still, no sudden movements except for the one to move out of the way, it’s so unspoken, it just happens - my dad would do this exaggerated sigh to let you know he was waiting to pass by you.

I told her I miss all the annoying things. She was surprised. Funny thing, grief. We all do.

I just saw a message from someone slide into my computer and disappear, she is asking if I’d be open to a medical medium.

Then I remembered that my dear old camp friend - the best - offered to talk with a friend who does this kind of work. I’m sure many people will think that’s so silly or witchy or whatever.

Well they’re probably not afraid that their intestines are falling out of their body. So.

I’ll take whatever ideas I can get right now. It’s a donated appointment so why not? I feel like I could get more information from someone that’s good than I would going through mainstream medicine for several years.

Several years. Do I have several years? Maybe I HAVE been writing since 8:30am. I think I’m writing so fast, but I look up and all this time has passed. I get lost in my own words, so often.

The terror. The idea of going under the knife. The idea of sharing this more publicly. I’m trying to get used to the idea. That’s why I told my improv friend. Why I’m writing it here. I have to go. I have six minutes to prepare my bags for the hospital. It’s likely we won’t have time to stop by here before the next appointment so I already started packing my bags last night. I know the drill now. After I ended up not seeing the doctor last week and going to the IV appointment instead, I know I have to bring ALL my stuff with me, even if I think it’s going to be a couple of hours.

I can’t afford to get trapped somewhere without supplies.

Even last night, at the bar, I didn’t want to buy the $4 root beer and left my lemonade in the car. I start to get light headed and a little wobbly. I have to sip something with a little sugar all day long. Especially in this weather.

i can’t believe Vashon is likely canceled for this week. I guess I knew there was a chance. I can’t believe I made this trip up north for next week. Can I do?

Should I do it?

I think it’s too late to get a refund now. I can’t remember the rules.

Fuck.

I should probably just go.

Four minutes. Fuck.

Do i push publish? Or take it down? I can’t remember how to log into this account on my phone.

I tried when I was freaking out about something else I wrote.

Oh well.

Fuck it.

I’d better get used to this.

I refuse to let my fears and embarrassment shorten my life.

That is so not who I am.

If it scares people off, then it scares people off.

I might still be alive, and that’s all that really matters right now.

Anxiety spiral

I don’t know what else to do but write when these thoughts keep surging through my head and I’m trying to either deep breathe through them or do something MINDFUL which my friend yesterday and I were laughing about how that feels impossible so much of the time. I’ve tried to do regular meditation for years, but look at how much is going through my mind in even just a short time? How do I calm that down, and not go to the worst case scenario. I’ve been feeling so much relief, that maybe I’ll get a bit of a respite now, and get to play catch up, and be proactive. Maybe these new symptoms are just a kick in the pants, and I’ll get this figured out, and it’s not catastrophic but needs to be addressed sooner than later. Maybe things are just such a mess in there, it’s a matter of time because the gut just stops working.

My friend warned me that it’s likely people aren’t going to be around much today or this week. Apparently, another death in the area so half of the Jewish community is at the funeral today. 42 years old!! FORTY TWO YEARS OLD FUUUUUCK. I don’t have many details yet, coming in bits and pieces and it’s so recent, there is still no obituary. I think some sort of anuerysm which can happen out of the blue. A friend of mine from a zillion years ago - her and her husband are so freaking kind and lovely, they showed up for the shiva, which they didn’t need to do. Anyway, her husband who she’s been with for along time now, he had a first wife who literally dropped dead in late 30s or something like that. They were walking around Greenlake. I have no idea how I remember these details. I want to say her name is Karen. Geezus, why does my brain retain this information. Or playing at the beach, snap! I tried to find the book by that author who lost his wife, it’s got to be in my purchased amazon books because I know I read it during a time when I was buying a ridiculous amount of books. I was lonely in New York and would just read away my free time, that and wander the city, this is after I decided to stop partying and during that period when I kept isolating and isolating.

It looks like we may not get out of town this week. That’s why I booked three possible get aways! If something is serious inside of me, well it’s always serious inside of me if surgeons don’t even want to operate on me, but if it’s nothing that needs urgent attention, I’m still going on this trip. I won’t be able to eat much. Omg, usually time moves too fast but whenever I’m having these anxiety spirals and I can’t stop this FEAR from pressing on my forehead, and the what ifs what ifs what ifs start to pile up and pile up, and I don’t know what to do with this feeling like what the fuck? How is this woman walking the world one day, gone the next? We don’t have enough experience with death and sickness in this culture. I’ve noticed my Asian friends are much less reserved about being around my sick dad or coming to visit and that sort of thing - not always the case, I’m just saying it’s noticeable, because death is something more commonly discussed.

How am I still alive? I’ve been asking myself this a lot lately because what the hell? My dad may have been older, but other than that, ok and not having a stomach, he was still in incredible shape, and I just can’t believe it. Why am I still here? I can’t find my fucking brown glasses, I’ve looked everywhere. This is what happens now, I start reading my phone without any glasses, because eyesight, of course and then I leave them somewhere and I have to find the green ones so I can find the brown ones. So the green ones MUST always be in the same spot, I’m so blind, I can’t even see fucking glasses. WHY AM I STILL ALIVE!!?!!?

What do I do? Do I try to get out of state? Do I keep pursuing GI doctors here? I feel like so many people have compassion fatigue now. I would have had such different reception for my medical case if I’d done it 2 years ago, but now…everyone is so tired, and it’s the beginning of the school year so the next month is bananas. Teaching makes September bonkers, but now I’m not even teaching or a parent, and the month already seems over-full and overwhelming and I don’t know how to get through all of this. We may not get to Vashon this week. Did I say that already? Family member in ER for bestie, and I’m not sure what’s going on over here. Fuck. I did mention it. I need to go get an iron infusion at 11am tomorrow on one side of the city, then drive all the way to the other side of the city. Will that use up too much juice to get away on Wed as it is? I couldn’t get another appt for the infusion until tomorrow. I don’t know how quickly I’ll feel the iron, I need to ask my RD friends. I feel like I….it’s near 80 degrees again today. So hard on me. I can’t believe this Leah Kitz is dead, just walking around normal life last week. In the ground today. How the fuck does that happen? How is my dad dead?

WHY. AM. I. STILL. ALIVE.

How do I make sense of this? And not have survivor’s guilt? How do I make sense of anything in my life. I was really hoping to get shit done, I worked on a social media plan yesterday, trying to organize my space which is a complete disaster right now, figure out SOME sort of plan, even if it’s loose and just for me to feel like I have a “life.”

I don’t feel like I have much of a choice now. I have to look for good GI docs, will likely need to travel, turn into a whole “thing” and share the journey. I don’t know why this is so freaking hard for me! Even if we don’t go to Vashon, maybe I’ll go to a lake and try to throw away all my fears or some hippie dippie shit like that, I can’t let them stop me from possibly saving my own fucking life. It’s not unheard of - I want to say it was Ronald Reagan’s son who had the first thing I had, inflammatory bowel disease, and he ended up dying from it because he was embarrassed and didn’t tell anyone how bad it was? Let me see if that’s real. I can’t find it. Bush’s brother had ulcerative colitis but he’s still alive. I think one of the Eagles had a ton of GI issues and is gone now. I don’t know why I’m thinking about any of this. Why am I so afraid of so many things? How do I let it hold me back STILL at this point in my life? That bucket list, there’s never enough time to do the bucket list if you get sick! Bucket list should be top, top of the list.

Well this doesn’t surprise me about Glenn Fry’s medical case:

“His widow claims Itzkowitz and the hospital failed to treat her husband’s ulcerative colitis and associated diseases, failed to diagnose and treat his infections and respiratory issues, and did not give proper medical advice.

‘As a result of the foregoing acts of negligence, Glenn Frey was rendered sick, sore, lame and disabled, suffered injuries, pain, mental anguish, was compelled to seek medical care and attention, incurred expenses thereof, and was permanently injured and disabled until the time of his death,’ the suit alleges.”

My dad loves the Eagles. So did I. We both liked the classic rock music a lot.

I wonder if this widow will win.

Even with all her power and money and famous husband.

Even a famous husband can’t survive our medical system. This is what I’m talking about. It’s a different world in there. And so many of the able bodied - especially the dudes around here - think that their money will keep them safe.

Nope! Not even Marv or Glenn or so many others who had a lot going for them, had resources, white skin, some leverage in the world.

In the medical system, it’s a whole other set of rules. This is what I keep trying to explain to people around me. They think I’m making stuff up or exaggerating. I should try and contact the widow. See what she knows. This was only last year. What do you do? Find them on Facebook? The world has shrunk so much.

Ok I’m going to calm myself down. I’m taking deep breaths. I’m going to finish getting ready for my class even though I really don’t feel like going but what’s the alternative. This is the thing for me, I want to get out so bad, but…I don’t know. I’m sure it’s not helping that there’s another death, a woman near my age. Another funeral yesterday but for a 99 year old guy, so there’s that. Apparently, he wasn’t a very nice person. Hence the tons of money and living until 99 years old.

Why is that? If I become less codependent and more WHATEVER, will I live longer?

Probably.

Ok Deep breaths I will go do some stretching and walking so I get some movement but not too much that it makes me too tired for later. I will bring 2 liters of fluids because it’s hot out and I’ve noticed that as soon as I finish my liter bag in class, I’m tired again and don’t have energy to participate. One of my friends from 100 had cancer a few months ago, and he is coming to meet up, I want to visit with him and make sure he’s doing all right. He is a strong dude! He is starting a degree in the fall that involves psychology and existentialism omg I spelled that correctly first time. I like being able to talk about death. Is that weird? Oh well, I’ve always liked talking about death, I think it makes me better at living, strange but true.

Deep breaths, will do some stretching, very minimal walking, hydrate, and hope the fuck I can make it through whatever is going on, and hoping we get to Vashon and hoping bestie’s dad is ok, and hoping and hoping and hoping and hoping and hoping and hoping maybe possibly fingers crossed, I get something figured out sooner than later, or at the very least: I STOP BEING AFRAID OF SO MANY THINGS!!!!!!!!

I emailed one of my friends I met at the sweat lodge in Oregon, I’m hoping he can give me some insight too. I’ll contact this rabbi. I need to figure some stuff OUT!

Should I post this?

Ahh well fuck it.

Trying not to freak out 8.26.19

Trying not to freak out 8.26.19

I’m realllllly trying not to freak out about this change I can feel inside me.

I was trying to talk to a friend today and all I could think about was what I should do next.

This is what happens. I’m going along, hoping that I can finally turn a corner, and maybe have something NOT be stressful for even a short time.

But nope.

My friend, fortunately, knows a lot about the medical world, works in it, volunteers in it, knows a lot of shit. So she offered to call my gastro office and insisted that I also email the doctor. THIS is why sharing my case and what’s happening is SO freaking crucial now.

She isn’t going to let it slide. I can’t pretend like it’s not happening because I’ll have her following up with me about it now.

Read More

SLEEP IS GOOD 8.25.19

SLEEP IS GOOD 8.25.19

I have homework!

My friend that was listening to my podcast is helping me navigate finding a new therapist. HOW FREAKING COOL IS THAT?

This is why I keep sharing what I’m going through because it helps me connect with people who have ideas. We used to play soccer together in high school! I saw another message come through from someone else in high school with someone to follow who deals with stomach stuff after having cancer. It’s so SO helpful to have people share ideas with me.

Before I do my homework assignment, I feel compelled to share my dream only because I rarely remember them these days. But it’s such a good illustration of how much anxiety I have around travel now - something I used to do without giving it much thought.

I dreamed that I was about to leave on a big trip and didn’t start packing until a few hours before we had to leave for the airport. I broke down and called out to bestie, even in my dream, I was freaking out to her. OMG why did I

Read More

I'm not feeling well today 8.24.19

I'm not feeling well today 8.24.19

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

Read More

it's weird 8.22.19

it's weird 8.22.19

I think something is stuck in my gut.

I’m getting a bit smarter (which isn’t saying a lot) about recognizing it earlier now. I’ve had a lot of pain since the needles in the stomach appointment on Tuesday. But that didn’t stop me from getting shit done yesterday. It’s better for my mental health to be busy, but my body doesn’t love it. I have another busy day ahead. I’m interviewing a possible helper who happens to live on the island. I think it could be promising.

Yesterday, I had a great interview with a woman who does cooking and recipe development! I wasn’t even LOOKING for that on the Care.com site, but stumbled across her profile and was like YESSS. She hasn’t done it professionally for years but I don’t need that. I told her I need the creative piece and the execution. I’ve been on the other side for so many years, it feels easy to work out those kinds of details.

I have all these ideas of things to cook! I love love LOVE having people volunteer in the community but this path would be simpler. That way, if someone WANTS

Read More

Learning to be shameless 8.21.19

Learning to be shameless 8.21.19

“If I could recommend one quality to any young, queer, or just outsider people, it would be: Be shameless,” she added. “Don’t be sorry. Don’t be sorry about who you are, enjoy it. Find other people who like it, and focus on them.”

I found this quote today in an article from a woman who teaches burlesque in her 50s. So cool. So brave!

I can’t write forever and ever in here today. I’ve got a kid on the way and trying to juggle interviews with the Care.com people. I need to be as focused as possible these days.

It’s so amazing to have such a wide network - truly - it’s just a lot to cope with the communication.

I think people are also reading in here too. So I’m feeling a bit weird about that. But then I come across these kinds of quotes: be shameless! In a culture that weaponizes shame in order to get people to conform!

It’s not easy doing what I’m doing. None of it. And on such a limited diet.

I made some pudding using a can of coconut milk on Sunday night because I didn’t eat eggs that day. I couldn’t believe how productive I was the next day. All that fat and satiation, my cells eagerly soaking up the necessary calories to function at more optimal levels.

Read More

Needles in the stomach day 8.20.19

Needles in the stomach day 8.20.19

I was in a good mood for most of the day because I got to hang with my friend and her adorable baby. She came over and we got some stuff done.

Then I had my visceral appointment which she kindly drove me to and then off to the north where I had my needles in the stomach. Fun times!

This friend actually MAKES all of this fun. She really does!

Though we also got serious and talked about partying and what it means now, and the lack of desire to be around heavy drinking.

Lucky. I feel very lucky I didn’t end up with more of a drinking problem.

We made it just in time for me to get a chai from this little Viennese cafe near my doctor’s office. IT IS THE BEST FUCKING CHAI ever. I could drink it every day and not get sick of it.

My new primary doctor who I rave about all of the time had suggested I use lidocain patches on my stomach to see if they’d help with the pain.

Read More

I need a little break 8.19.19

I need a little break 8.19.19

[[NEW PODCAST EPISODE IS UP! It’s called I Know Nothing - check it out on Itunes and Google Play]]

I need a little break.

Just a teeny tiny break from this body. From this life. From this diet. From this grief. From all of it.

I took a little break from writing in here. Sometimes I see if the words want out. If they don’t, then they don’t.

Also, I found out a non-fan discovered this page and I got a little worried.

I considered closing it all down and starting a fresh page. I was also going to go through and delete stuff, which I may do a little bit. I feel embarrassed about things I’ve written. Worried that things would come back to bite me. Worried about revealing the sapiosexual thing. I told a friend friend is super open minded so there’s that angle. But she’s responded: why would you hide your words!? Leave them!

And we decided that the sapiosexual thing isn’t like…well, I try not to be close minded but there are a few things I don’t understand in the fetish world which I’m pretty sure the majority struggle with as well.

Her and I decided that this wasn’t a big deal in the grand scheme of things. I guess there’s still that old-fashioned part of me that can’t believe I’m writing so openly.

I feel that push and pull between the old self and the new self. I never know what this newer version is going to do next. The old me is like

Read More