Traveling is so hard now 4.11.19

This was taken exactly a year ago when I was in Portland with my nephew for a quick trip during his spring break right before I gave myself the mohawk.I LOVED this airbnb apartment in downtown Portland. I’m giving myself IV fluids in this photo back when my PICC line was on my right arm. I do hope to travel a bit this spring, locally, but this photo reminds of how much has happened to me in just one year.

This was taken exactly a year ago when I was in Portland with my nephew for a quick trip during his spring break right before I gave myself the mohawk.I LOVED this airbnb apartment in downtown Portland. I’m giving myself IV fluids in this photo back when my PICC line was on my right arm. I do hope to travel a bit this spring, locally, but this photo reminds of how much has happened to me in just one year.

I never knew hunger before. Compared to what so many people around the world experience, I probably still don’t truly know hunger.

Most of the people in the worlds I’ve walked through don’t know hunger either.

All I know now is that hunger is something I live with on a daily basis. I wish I could explain what it’s like to be surrounded by so many people with SO much, while so much of my life gets stripped away.

While I sit in hunger while so many eat around me. While my belly rumbles and my mind gets fuzzy.

How do people do it? Live with hunger when it’s not even for a medical reason?

But simply because others are greedy?

The days of indulgence are ending. I’ve tried to warn my food friends that fancy food is out. I hope they can pivot fast enough to keep up with the zeitgeist.

I had a good doctor appointment yesterday but damn it’s still exhausting. I keep trying to figure out ways to get nutrients in through my IV. And I think I made some traction yesterday but I don’t get too excited about these things anymore. Until those orders are written and the nutrients are legit pumping into my veins, I will keep my expectations low.

It is validating, at least, to have several doctors now very concerned about my food intake. I’m FINALLY reaching the really great doctors. THREE FUCKING YEARS.

Seattle Freeze? More like arctic blast that I had to chisel through and beg my way into for several YEARS. There are so many people here who have lived here for so long, they don’t even see the dysfunction.

But then again, we often don’t see a lot of dysfunction. Now that so many dysfunctional things are being outed on the Internet, it’s hard to imagine how we managed in denial for so long.

I’m now convinced that becoming too comfortable is one of the worst things that can happen to humans.

I’m not saying that we can’t grow without some suffering. And I’m not saying we have to live like minimalist Buddhist monks.

But I do think we don’t USUALLY grow without some suffering. I don’t mean we need to be hard on people so that THEY suffer and learn. That’s a terrible idea as we are witnessing in our country.

Rather, I mean that it’s a good idea to examine ourselves and go inward instead of avoiding painful situations, or taking a risk, or delving into our dark side or completely changing our lives. It’s amazing how much we will do to avoid any of those things, how much we fear change. I know I did for so many years! I pretended to like change - but I was particular about the change I would embrace. If anything, I would use change as an excuse to “run away” from uncomfortable situations that would ALLOW me to grow and force me to examine my shit.

Change, pain, suffering, struggle are all part of the human experience.

Something went a little wonky here in America. I’ve often thought that the stupid line about pursuing happiness in the Constitution would come back to haunt us.

Sadly, I think I was right.

There is a fundamental belief here in America that we should strive to be happy. We DESERVE to be happy. It’s written on our country’s most important document!

Well, now that that piece of paper is being lit on fire and shit on by a bunch of corrupt mobsters, I’m wondering if that belief system will go up in ashes too.

Striving for happiness is a recipe for a miserable life.

This is what I’ve concluded after a lot of years of struggle.

Happiness is fleeting. Even joy is a bunch of bullshit.

Most of human history, our goal was to stay alive! Think of what a long, strange journey we’ve gone through to end up sitting in big houses with only a few other people - throughout most of history, these types of houses would have 10-15 inhabitants - alone so much of the time, isolated in cars. We stare at screens. We worry about how we look on the outside. We compare ourselves to others. We buy things when we are uncomfortable or need a “fix.” We watch media where people are yelling at each other. We think that the number of green pieces of paper we own make us important or not important.

We create a hierarchy in our heads in every professional and social situation.

And then wonder why we are miserable. I won’t even bring up how unnatural it is for us to spend so little time in nature or eat fake pretend food or live in a world that’s lit up 24 hours a day.

We keep a list in our head of things that we think will make us happy. If I get this consulting gig, I’ll be happy.. If I get to go on vacation, I’ll be so happy. If I get thin, I’ll be happy. If, if, if…..

I realize that not everyone does these things! I know many people that have a healthy sense of self and quality values. Thank goodness for these people I know! They teach me a lot.

I’m just pointing out that as a CULTURE, our priorities are just a tiny bit fucked up. TINY BIT.

Then we wonder why we ended up with a selfish, greedy, superficial representing our country.

I’ve brought this up many times and I’m surprised how many people don’t want to hear it. “He doesn’t represent me or my values!!!” they argue.

Ok, but he represents AMERICAN values. And we’ve got to admit that if we can get down to the business of healing.

Speaking of healing America, I didn’t realize Marianne Williamson was one of the Democratic candidates! Holy shit. Obviously, she’ll never get very far - mostly because she doesn’t have deep enough political ties. Also, because she is a woman. An attractive one too. Always the double whammy. She was talking about SO many of these things for so many years. We’d be so lucky to have someone like her in charge.

Everyone blaming each other…what would the world look like if we just took responsibility for ourselves and worked on our shit and healing ourselves?

A world full of healthy people who set healthy boundaries and can have healthy conversations about respectfully have conversations even about things they don’t agree on? Hmmmm…starts with the man in the mirror. Said the pedophile. UGHGHGHGGH the ugliness that’s emerging from our national wounds is so hard to take, process, and make sense of - especially when there is SO much of it.

I’m not feeling good about this election. I’m a little nervous that If it happens - and yes, I do mean IF - that it will be so compromised, it won’t even matter.

ALL THAT MONEY that’s getting dumped into these campaigns! My fucking goodness! I think of what could be done with the millions and millions of dollars already donated to a race that will probably end up being fucked up anyway.

We could work on climate change. Improve the hospital systems. Get medicine to the poor. Fix up our roads and schools. Improve our prison system. Create better mental health resources. Make sure nobody goes hungry in our country. Nutrition and health education for kids and teens. Build affordable housing for low-income, elderly and disabled. Invest in renewable energy. Offer reparations to people of color. Create updated and “woke” curriculum. Grow healthy produce…etc etc ETC.

I obviously could go on and on. I’ve always felt this way. Why the FUCK is so much money dumped into stupid sports and then schools in Oklahoma don’t have new textbooks and have to close school on Mondays due to lack of funds? Why is SO much money dumped into one stupid idiotic action movie when disabled people are being dumped on the street because rural and mental health hospitals are closing?

None of it makes any sense to me. It never has. But now. I didn’t mean to go on this rant! I haven’t eaten much. The pain has been pretty bad so when I got home yesterday, I got into bed and fell asleep. I didn’t even get up to drink broth and the vegan protein milk.

I know it’s not good to avoid those things but it feels SO good to have a totally empty stomach. The IDEA that I may be able to get enough nutrients through my veins instead of my gut…I can’t imagine it. I’m so scared of TPN (total parental nutrition - it goes in through my PICC line to my veins and completely bypasses the gut). I’m so worried my gut would shut down forever. I’m concerned about liver toxicity. I’m very wary of the ingredients that they use in the product. At least now, I control the source of my nutrients.

But donut frosting can’t possibly be better than what they have in there. I can always find a way to get the highest quality IV bags. I know of some healthier tube feeding options but I don’t know how it works for TPN. I wish I knew more! I didn’t work in clinical for so many years, I’m struggling to catch up but I can’t remember anything I read these days so it’s a waste of time.

I’m feeling better after finding this doctor who said she knows my motility gastro doctor! And that she will confer with her!

It was exactly how an appointment is SUPPOSED to go. Her and the endo made me realize that a lot of what is frustrating me is incompetence. Most of the doctors just don’t know what to do with me. This woman was so smart yesterday, I had trouble following what she was saying.

There are lots of topics I don’t understand.

Nutrition, the gut, and my medical case aren’t any of them. So when someone is phrasing things in a way that I have to literally translate the long words in my head while they are talking? We got a live one!

If this works out, this will give me enough, time, energy and nutrients to hunt down an expert that can help me improve my gut. I can’t do the hunt or out of state travel without the extra nutrients though. I can feel my gut getting more and more - I want to say LAZY but that’s not very technical - it’s just so compromised by now. Fighting the good fight for FIVE years.

It’s like I arrived at the 5 year anniversary and my gut is like bitch, we’re done. Find some new ways to get nutrients or find a way to fix us.

The doctor agreed that the nerve damage could be extensive which is why my entire digestive system is compromised - even upstream from the surgery.

It’s both terrifying and validating to have doctors confirm these things.

What did they do to me? What did that surgeon do to my insides?

Is there anything more vulnerable than allowing people to drug you and cut you open?

Can I do it again, if there is way to improve things? Can I trust enough to let them back inside me?

I’ve had very good surgeons say they wouldn’t even work on me! My nurse said that there is one at UW that they sent all the hard cases too.

Then she mentioned his name. I said: that’s one of the surgeons who said he wouldn’t operate on me and that was a couple of years ago when I wasn’t even this bad.

I’ll never forget the look on her face. She said: oh that’s not good if he said no, we send him the people with a ton of abdominal adhesions.

I found that out in the last couple of weeks. I tried emailing the one surgeon I DID like about the exploratory surgery. She left the practice! Another UW doctor also left her practice. And my driver/friend yesterday said ANOTHER UW doctor left this past month. All good ones.

What in the FUCK is going on here?

I posted this photo because it’s Josh’s spring break again and I wish I could get out of town for one night again. I am going to try to get to Oregon in May. I’m determined to try a few get aways. I HATE being trapped at home. I know I know I’m so lucky I have a nice home. I still would prefer to have the CHOICE to be at home, instead of forced.

I have so much I should do today. But I’m just too tired. I am recording a new podcast today with someone from the kink community! Should be interesting. I’m working on getting one done for Consent since I’m talking about touching, and so many controversial topics, I figured we need to address that too.

First, I need to go put some calories in this body. I feel fuzzy. Not drinking any broth or protein milk last night may have felt better in my stomach but it’s too hard on my brain. I need my brain to work. I will have to continue forcing myself to drink nutrient-dense beverages on my non-movement nights even it means a little pain. I am too weak today. Too few calories for too long now.

The risk is too great. I will have no shot at all if my brain gets any more compromised.

I hope this all makes sense. Sometimes I read through these posts and I’m like EYEROLL. My writing is terrible. I go on so many tangents, often forgetting to tie it all together and I often sound so pissed off and/or arrogant.

Then I think: maybe I’m being too hard on myself. I’m barely keeping myself alive so I think it’s ok to go easy on myself regarding grammar and rambling sentences. I can’t help but hear my old writing workshop classmates rip on my writing! They were suck dicks to me.

Well fuck it. Mostly, I’m proud of myself for writing in here daily despite all the horror happening and being in pain and hungry and and and….. So I say some stupid shit. Oh well. That’s one of the things I love about improv - so you make a mistake? Or a scene doesn’t work? Oh well. Move right along. My teacher pantomimes crumpling up a paper and throwing it away. What a healthier way to live than beating myself up for things that nobody else is probably thinking about.

So much forgiveness and self-acceptance in that space. It’s been good for my type a personality.

I really, really need to go feed myself and a very whiny animal.

Much love,

Jules