How do I keep doing this? 3.18.19

Is this my diet for the rest of my life? How long is that anyway?

Is this my diet for the rest of my life? How long is that anyway?

All I can think today is: how do I keep doing this?

HOW THE FUCK DO I KEEP DOING THIS?

The fight. Omgosh I’m such a good fighter.

But even the best get knocked down and don’t get back up.

Even soldiers get a break. Athletes. Parents. Workers. Everyone can take a breather at some point.

I would give just about anything to get a break for this body for even a few days. Just one morning, where I could wake up and eat what I want. Poop like a champ. Go throughout the day without ONCE thinking about my body and medical case.

ONE DAY. I would take even one day.

I woke up today to one of my volunteers sending me reminders for doctor phone calls. It was perfect. Why did I wait so long to do this? I made the phone calls and then dozed off.

I told the ER doc yesterday - the nice one - that my days of sleeping and not wanting to eat keep getting longer and longer.

Him and the kind nurse both made faces that reflected how bad they know that is.

This is what happens to people at the end. They sleep more and more and more. Appetite disappears. The body is getting ready to shut down for good.

I looked so normal for so long, I wasn’t believed. I didn’t realize how toxic it is for the mind and the body when not believed.

I feel like I keep screaming and hollering to the medical world: help me! Please. Help me.

They know. They know I’m just lost in this fucked up medical system that moves far too slow for someone in my position.

How do I keep doing it? How do I keep getting up day after day and doing a job I hate?

I was a total health nut for all those years because I HATE GOING TO THE DOCTOR. I hate hospitals. I hate all of it. Oh those blessed 14 years of good health I got as an adult…. I packed a lot into them, but it will never feel like I did enough.

One of the nurses yesterday used to live in Turkey. Out of politeness, I mentioned that I heard they were having a St. Patrick’s potluck as she walked me to my room. She got all excited telling me about her time in Turkey and the food she ate.

The sweet woman never understanding how my heart was breaking inside.

I never made it to Turkey. I almost went in 1996. But I was told it was too dangerous to go as a woman alone. Also, I’d run out of money at that point anyway. Money can always be earned! Traveling mates can be found.

There are too many regrets to walk down that road today.

Instead, I went along with her storytelling and nodded at the appropriate moments. I can still enjoy the person and the conversation even when a part of me is crying inside for myself.

The saddest part of this whole story? I really thought I’d be able to find solutions. I really thought I’d be able to get back on solid foods.

Now I’m looking into TPN - that’s nutrients through the IV so my gut is completely bypassed. There are issues around liver toxicity for long term use. And I’m very concerned that if I give my gut the slightest break, it will shut down for good. Though, others think giving it a nice long rest could be what it needs.

Nobody knows. It’s impossible to know.

The good news I found out yesterday is that there isn’t anything large and scary going on. That’s what CT scans are good for. They are pretty detailed so it can see small tumors and/or bowel obstruction.

The bad news, though, is nobody can explain why I’m struggling so much to digest even eggs. And why do I keep being able to eat less and less? What iS HAPPENING IN THERE?

What’s so FUCKING maddening about our medical system is that IF THEY DON’T SEE SOMETHING WRONG, they conclude that NOTHING IS WRONG.

Even when the patient is sick as a dog, staring at them, they will carry on their narrative as if it’s actually FACT. Not only that, some - not all - insist that nothing is wrong just so that their ego isn’t damaged.

Can you imagine? They look at my chart and see all these things I clearly can’t be making up and try to make me out to be an “exaggerator.” There are patients that do make shit up and go around to different doctors. I’ve met them. Very interesting people. I get that the medical world is wary of them.

But my fucking gd. They gutted me. It’s all in my chart.

The only reason I have a stinking chance is because of the world I come from and the networks I’ve tirelessly built over the span of decades.

My nephew and I were working on college research recently. While I was with him, I started texting different people with questions and the college application process. They sent me referrals and ideas right away.

He said “how do you do that? How do always have someone that can answer a question you have?”

I’d never thought about it. I said “this is what I do. This is what I’ve been doing my entire life. I guess a lot of people keep their circles small?” I’ve noticed that about some Seattle locals who never left here. Cross-networking isn’t prioritized here. They call it the Seattle freeze as an endearing term.

I don’t find it endearing ta all.

I genuinely love people. All people. I really do. I find them endlessly fascinating. Even the ones who think about the world so differently than me. Who are they? Why do they think so differently? I should have been a journalist in a different life. I hope I have the chance to interview every kind of person I can find for the podcast. (Look at me so fancy linking to my podcast in my blog that no one is reading.) I’d like to interview people who are vastly different than me. That’s how much I love people.

They still have interesting things to say that I want to hear.

As a result of that love for people, I have a large network.

That network is now my best chance at survival.

My head feels like it’s going to explode. I want to pull the covers up over my head and sleep for months until I’m all healed - or more healed, geezus I’d take back the ability to eat eggs with no trouble.

Or at least, get to a place where I don’t feel so beaten down.

It’s sad isn’t it? I didn’t truly understand how cruel and evil the world was until now. That’s what a spoiled white skinned semi-decent looking person I was.

I do believe there is so much good, I believe that, of course. It’s the only thing that keeps me going. If I didn’t have that fundamental belief, I don’t think I could do any of this.

But I also see how evil can masquerade as so many things that we perceive as “normal.” And I had no idea how cruel the world is to really sick people. Twisted. The world we now live in is so warped.

What is going on inside me???? Why can’t I find answers? Why is it taking so damn long? I’m in one of the best cities in the WORLD for healthcare. Or am I?

I called an integrative clinic that’s new and they made me my appointment through a referral from a new doctor.

Then she said “Ok well we’re cash payment only and that’s going to be $359.”

WHAAAAAA? First of all, why didn’t the doctor who told me about the clinic tell me that. Why did you let me get all the way to making the appointment and THEN mention that?

I was considerate to her since she was just the messenger. But I told her. You need to tell your higher ups that this makes you sound like elitists. WE ONLY TREAT RICH PEOPLE. Not great marketing for a new clinic. No sliding scale. No discount for disabled. Nothing.

I kept the fucking appointment because I have a friend who is helping out with these things. She’s an angel who doesn’t want me holding back from getting the right care because of money. That’s how lucky I am.

That’s why I holler and holler and holler. I’m so much luckier than most.

And the world can’t ignore me like they can other disabled activists.

I also kept the appointment because this integrative MD happens to specialize in “cancer, gastrointestinal health, and women’s health” (women’s health is code for hormones) which is my three biggest issues.

It takes all my willpower - and I think I’ve established that I am an extremely disciplined person - to not walk into a hospital and start screaming my head off: HELP ME HELP ME HELP ME PLEASE HELP ME.

They ignore you, dismiss you, drive you to the point of insanity. Then you act crazy and they shrug and say “see she’s crazy. We don’t have to deal with her.”

My survival requires I keep the frustration under as tight a wrap as I possibly can.

My survival requires so many things that sound hard right now. Sound impossible.

So tired of it all. So so tired.

Let’s see if I can make it through this chapter alive.

Fingers crossed.

Much love,

Jules