Debrief on CA trip 3.3.19

This is me walking in San Diego WHERE IT WAS RAINING most of the week. That’s right it was hailing and raining in San Diego! Thanks Universe!! I just wanted some light, man….

This is me walking in San Diego WHERE IT WAS RAINING most of the week. That’s right it was hailing and raining in San Diego! Thanks Universe!! I just wanted some light, man….

I got back from California one week ago but it feels like it’s been a month. That’s the strangest part of my current life. I realize a lot of people feel like time is moving really fast. I don’t know how it feels for everyone else, obviously. But for me, my health issues happen unexpectedly. So whatever I was doing is interrupted and I have to drop everything else, quickly pivot, and address whatever crisis has arisen. It’s super frustrating! I hate not being able to count on consistency in this life. Often, I turn around and an entire month and all of the plans I had for that month are lost in the blur of pain and crisis. All the trauma makes this especially challenging. I keep having new trauma, boom, boom, boom, over and over again.

Let’s back up and start again: I forget that ONE day, when people know about this blog, I may have readers that don’t know my story. You can read an overview of my story here to catch up.

I went to San Diego mid-February for what was supposed to be a restorative 10 day trip. I would visit my old clinic, get IV vitamin infusions since they take Medicare, talk to a couple of new doctors and meet with my old primary doctor that focuses on hormone replacement therapy. I had plans! To walk on the beach! Visit friends! Go to my favorite little stores!

It didn’t quite pan out that way. I did see some friends, even went on a couple of dates, but omg, my stomach was FUCKED UP for the entire trip. Most people have intestines that look like a highway system. Mine looks like the roads after the aliens blow up the city in Independence Day. Eating is my number one challenge!

I found out my clinic did NOT take my type of HMO Medicare which meant everything was out of pocket. Thank goodness my docs down there are lovely human beings and worked with me on fees. It rained most of the trip. It was cold as fuck and gray. The whole city didn’t feel like San Diego at all.

It ended up being a kind of spiritual and transformative trip. But that’s not what I wanted at all. More on that later.

I tried to pretend like my stomach wasn’t causing me problems in the beginning of the trip.. I even went as far as eating an entire meal at True Food, one of my favorite restaurants. I thought it was a safe bet! They WANT to modify their recipes for their customers - that’s their jam. But they cooked the eggs too far for me - they were way too solid. And I’d already been having trouble for several days. So plopping fully solid eggs into the traffic jam that was already occurring in my gut meant I was writhing in pain that night. And the next night. And the night after that. I know I had 3 really rough nights - though they are a blur now which is not uncommon when I’m in extreme pain. I didn’t eat any eggs for four days, I believe. I rarely eat plain eggs NOT in the broth. Though that doesn’t make sense to me. Why should it matter if I’m eating the eggs IN the broth or SIPPING the broth while eating them? How does my gut know how they exist outside my body? I know I ate very, very slowly at the restaurant. I also had broth and avocado too….two safe foods. But it didn’t work. I think I was already a mess by then. I remember eating at the restaurant, all excited, and a voice inside me was saying “this is a terrible idea.”

A lot of my life is reviewing data. I know so sexy and exciting! But if I don’t figure out how to adjust things, then it won’t get done. I can’t remember the last time I talked to a doctor that had ideas on how to handle my gut issues. This is on me. If I don’t want pain, then I need to learn and learn fast.

After a disaster like this trip - which was probably one of my biggest disasters to date though I didn’t end up in the hospital - I ask myself a bunch of questions. Because at this point, I haven’t been able to leave my cocoon for more than 3 days. What did I do so differently on the trip that could have exacerbated my symptoms? Why can I travel for 3 days no problem and why was this trip for 10 days so bad? Which variables of my routine did I leave out that could have made the difference in the outcome? I tried replicating as much of my evening routine as possible . For anyone new to my story: because I lost several organs to cancer, I have a lot of trouble eating food. So even after eating eggs and broth, I have to walk (on treadmill or outside) while drinking tea and giving myself hydration. Fluids, both orally and IV, help me poop for some reason! I’m still researching that connection. It’s not easy because my science is old and my brain is not as sharp as it was when I was in grad school in my twenties! I try to devour science books like in the movies but usually I fall asleep. This is why I need outside help. I have to admit: I can’t do this by myself.

During my evening routine walk, I’m usually running to the bathroom many times - sometimes my hour walk can talk three hours! It’s so fucking annoying. People are like oh you look so fit, and I think to myself: if you had to walk four miles every time you ate four eggs, you’d be fit too. But I don’t say anything. I just smile and say yup! It’s wrecked in there.

I need to write this down somewhere and I figured, why not write it here?

What did I NOT do on my trip that I usually do at home:

-As I was telling you about my routine, I realized that walking outside meant I wasn’t drinking tons of tea or broth while I was walking which may be a variable.

-I didn’t take my daily probiotics - again, seemingly small variable but if I’m removing TOO many of these variables at once AND introducing new things or foods on a trip, then I’m obviously going to have trouble on the road.

-I usually give myself castor oil pack at night. My suitcase was so full of medical supplies and clothes, I didn’t bring my hot water bottle OR heating pad which was a big mistake in hindsight (don’t get me started about how many cute clothes I brought down that I never wore INSTEAD OF BRINGING THE THINGS THAT WOULD HAVE DECREASED MY PAIN).

-I did shorter walks outside and didn’t always give myself hydration on the walk.

-Not as much hardcore stretching and dancing - I do a LOT of stretching at least three times a week and dancing at least a couple times a month. I’ve got some MOVES now - I’m a total dork but they work! I’m so curious if this concept could help others with motility issues…. I always stretch and dance a little but every couple of nights, I have to really focus on both or my back and abdomen start to twitch out.

-No strength training. I don’t technically need to do strength training regarding my intestines, but I’ve watched my dad survive three cancers now - separately, not together like mine - and he walks away from each surgery like a champ because he is so physically fit. So I make sure I stay strong. It’s also one thing I can actually CONTROL in my life. Also, I’m a gym rat, like him, I actually enjoy working out. Weird to admit but it’s the truth [shrug]. I also love salad. And brown rice. And… ahh fuck. No more talk of food!

-I lost my amino acid IV bag. Just one saline bag but I swear I had one to bring to CA but it never made it down and it wasn’t in the fridge when I got home. Very weird thing to lose - but I didn’t have even one and those help flush my system when it gets a little sticky.

-I was really good about drinking liquids. I didn’t eat anything weird, no fish, no samples at the grocery store, not one bite of anything new. Ok, not true, I ate a few dessert things but nothing that should have blocked for DAYS. Like cream cheese frosting (which was basically cream cheese and honey) and vegan ice cream from Salt and Straw. I was very careful because I wanted to enjoy the trip.

The equivalent to my old life is that I was always careful about protecting my skin from burning at the beginning of a beach trip. Last day, less careful. But burning myself at the beginning of the trip meant misery for the rest of the time. I’ve always had this annoyingly fragile little body. So there was no way in hell, I was going to take chances on even the smallest bit of food and end up in pain the whole trip.

Nope, I got that without even enjoying a fun treat first.

Oh, what I’d give to go on a trip to the beach, jump in the water (no needle), eat fish tacos, and get a little sun burned.

What I would give.

I worry that my science ramblings will make for boring posts. But then again, others who are desperate for answers may find it helpful. It would make me happy if my pain and scientific data brought relief to others.

It would make a lot of this worth it.

Much love,

Jules