I got some baby medicine 4.9.19

I had an IV bag of nutrients while holding this new bebe who sleeps like a dream! I find newborns very healing. They have such great energy!!

I had an IV bag of nutrients while holding this new bebe who sleeps like a dream! I find newborns very healing. They have such great energy!!

I wish I could convey in mere words how wonderful it is to have friends - and new peeps who become friends! - drive me to my appointments. I was very tired today and grateful for the pick-up!

AND, and and, I got to see an old friend and her new baby that is the cutest snuggle bug! I love holding babies and having them sleep on me. Like I said in a previous post, I’m totally good with how my life ended up (IN THAT AREA at least), but it’s so fun to visit with other people’s little bebes! It felt like such a treat to hold him, visit with my friend and get my IV bag.

I ended up feeling sick afterward - I think the glutathione made me woozy. I’m not feeling great today. I’ve been having a lot of pain the last few days. What’s more worrisome is that the pain is in new areas of my stomach. Usually, most of my issues are on the left side where the attachment between large and small intestine is (I have a small section of colon left). But this new pain on the right side? I don’t know. It’s definitely not good.

I’m also having pain while just sitting around. It took me a LONG time to come up with my current system of IV fluids, walking, stretching, yoga, tea and broth in order to reduce pain - well over a year, maybe even two years to develop so many tricks to reduce pain. The fact that there is NEW pain even when I’m doing most of my routine - I only did a little bit yesterday so that could be part of the problem for today at least - is very troubling. I’m running out of tricks.

However, I did receive some correspondence from my new friend in Spain who is a doctor and helping me navigate what move I should make next. Wow! I met him through an old boyfriend who introduced him to my podcast and life stories. It’s so easy to make fun of Facebook - and I’m struggling with my own irritation with that company right now - but I am VERY grateful that it allows me to stay in touch with great people from my past!

The question now: what do I do next? If my time is limited, it’s got to be a smart move!!!! No pressure!!!!

I will try a few more GI docs in Seattle but I need to get the ball rolling in case I need to leave the city, which is looking more and more likely.

It’s hard for me to explain how daunting that sounds. Now, if you’re able-bodied, making a trip can sound a little exhausting. But when you’re not feeling well so much of the time AND in the comfort of your own home? Leaving the cocoon and taking a chance on random doctors that may or may not have answers? Risking a plane trip? Not being able to eat much while traveling?

The whole thing is terrifying and overwhelming. All of it. I need to do so much research and I’m burned out from the last month and a half of focusing so hard on all of this. I can’t keep it up. Plus, my dad’s big appointment is tomorrow.

I can’t concentrate on much else until we get more news on that.

I’m almost certain I’ll need to leave this city. Actually, now that I’m thinking about it - there’s a doctor in Boston that sees pediatric cases of poor motility and then this new friend mentioned a new Lynch Syndrome Center too. Hmmmm….I think my friend/yoga teacher in San Diego used to work at Dana Farber…. thank goodness I love making friends so much. Who’d thunk that could end up saving my LIFE?

It’s most definitely going to take a village to keep this body alive and going. I have so much I still want to give and do and share and say and love and laugh and experience.

But I’m tired. I’ll admit it here. I’m very, very tired of all this. I’m tired of fighting so hard for semi-decent care. I’m tired of the pain. I’m tired of my diet. I’m tired of begging. OMG the begging. It’s absolutely astounding to me how much begging I’ve had to do to get help.

I feel like a beggar on the streets of gold-lined Mercer Island, kneeling on the ground while the aristocrats walk by. Some looking at me with pity. Some actually stopping to say hello and give me a warm hug.

Others, staring at me and then whispering about me behind their fucking fans while they walk to their balls.

If some of this world understood how they are perceived by the people in MY world….

They’d be horrified. I know they would. I’m only being tougher on everyone now BECAUSE IT’S NECESSARY IN ORDER FOR ME TO SURVIVE. (wake up wake up wake up people are dying including me.)

Let’s see, make some people uncomfortable and stay alive. Or stay likable and die.

Gee, which one should I do????

I’m so so grateful for the people who are helping me. I’m so so grateful for the people who are SHOWING UP, literally, at my house with a non-dairy hot chocolate and a ride to an appointment! I’m so grateful for my friends listening to me get upset, try to figure out the next path and rant about the injustice in the world.

I’m so so grateful for the people who are offering support to me right now.

I hope that comes through. My goodness.

It’s so unbelievable how some - people I would have never thought in a million years - continue to stick their head in the sand and pretend that I don’t exist anymore. People I love. People I’m related to. People I thought would never turn their back on me.

The pain of this. There are no words to describe what it’s like to be deserted while dying.

No. Words.

And the ones who are showing up?

And not just showing up, but being supportive? And letting me mourn, and be a mess? Letting me carry on about things I’m not sure even make sense?

Angels. Fucking angels. Every one of them.

I’m having a hard time, that’s for sure. Holding the baby and catching up with my friend - who is the most understanding and forgiving person! I learn a lot from her! - it’s medicine, man.

Good people who are kind to sick people ARE MEDICINE. They heal. It’s not the sick body that’s the hardest for me. It’s the toxic world. And toxic behavior. And toxic people. And toxic medical system.

When you are SO vulnerable and scared and feel like shit, to have someone show up with love and support and kindness? It penetrates my soul and my heart and makes me feel like I can keep going.

Do these other people understand that?

That being deserted makes me want to leave this life.

And the kindness and love makes me want to stay.

It’s that simple.

That’s all I care about now. Trying to do some good for however long I’m here. Maybe wake some people up so that they can find their loving and compassionate self inside and let it OUT.

That’s one thing I remember about how I lived for too many years.

Being selfish felt like shit. Being angry felt like shit. Being focused on only my career felt like shit.

I know that the more evolved stance to take is to feel sorry for people that can’t extend anything of themselves to me during the lowest and scariest point in my life.

I’m not quite sure I’m able to do that quite yet, but I aspire to it and I’m at least working toward it.

It’s hard to reach your hand out while you’re dying.

And have it slapped away.

If I can forgive that, then I guess I’ll be able to forgive anything.

I try to think of them like I would the kids. I’m so forgiving of the kids. And aren’t we all kids, in the end? Aren’t we all doing the best we can with what we’ve got? Aren’t we all trying to “grow up” in a world that’s so warped and twisted that people think they are better than others simply for having MONEY? (LIKE WHAAAA?)

I find that so strange. The priorities that have been so normalized, but are actually super twisted and sick.

Anyway, I should go, I need to get some IV fluids, my head hurts and Sarah is on her way to help me with I don’t know. I need to organize so many things, research the hospitals. Figure out how to best organize my medical case on my website. To have to do all this in order to get the right care…IT IS NOT RIGHT.

I fight until the end.

And the people who are there for me? I love you forever.

The people that aren’t? I need to not focus on that anymore.

I am determined to focus my energy on the love and the support that’s showing up and be grateful for my village full of healing peeps.

The rest doesn’t matter.

Much love,

Jules