Lost in the medical system 3.20.19

Source of nutrition for my beat up body.

Source of nutrition for my beat up body.

I have 20 minutes until a helper is coming by to tackle my paperwork. I don’t know where my days are going. I am very spacey.

In all these years, I’ve never once fainted. It’s weird. I’m super crazy strong in some ways and in other ways, so incredibly fragile.

But I’ve never fainted, I don’t even get dizzy. Which the medical people are often surprised about. Dizziness and nausea are typical for people with compromised gut issues - especially when food gets backed up.

All day today - and much of the past week - I’ve been dizzy. Like holding onto the walls when I walk dizzy. This makes me very nervous. My BP was I think 102/70? at the doctor’s today. Low, but not obscenely low by any stretch. That’s low, though, for having given myself 2 liters of fluids per day over the past week.

The weather is warm though and that’s not great for my body. It was 80 degrees today! In March. Fuck. I’m so so happy to have long days and light. But climate change is terrible for someone like me. Eventually, I figure I will have to live part of the year indoors only. Girl in the bubble.

Anyway, I was just making eggs after a very long appointment with a new doctor and felt like the world was moving sideways. I was holding a hot pan with eggs!

Woahhhhh, I said. I’ve never felt like that before. I never get dizzy, you know that! My mom is making dinner in the kitchen and responds: like the world is tipping?

And I said YES how did you know? She gave me a look like c’mon. She is always dizzy and has nausea issues.

All these years, dehydrated. Bleeding stool 30 times a day when I had inflammatory bowel disease. Never. Once. Did. I feel this way.

What the fuck is going INSIDE OF ME!!!!!!!??!?????

I get that having cancer is super scary. Having Crohn’s sucks balls. So many things are terrible and scary.

Not having any idea why a body is breaking down? Is absolutely terrifying.

The good news from today is that I really, really like this doctor. He was super honest and lovely. He spent at least an hour with me - to the point that his nurse said he had two patients waiting for him AND his wife too!

The bad news is that he said he didn’t know how much he could help me. I cried during that part of the appointment.

Pretty nuts isn’t it. I might survive four cancers and die from the medical system not knowing what to do with me.

He was awesome though and made referrals to a PA (physicians assistant) who does TPN and also I’m going to meet with a registered dietitian. He could not BELIEVE nobody else has referred me to an RD. I shrugged and said, I’m lucky I know some of the smartest in the country.

But now I need way more than some supplement advice. I’ve got to get a handle on the nutrient intake.

My friend Lise who is AWESOME and my driver today - and survived crazy stage four cancer last year, she is a walking miracle - took notes and wrote down that he said nutrition is black and white in his book.

Either a patient is able to take in enough calories to get enough nutrition. Or they need elemental nutrition / TPN.

This is the FIRST time I’ve had a doctor talk about how TPN and/or other options should be on the table.

I’m really, REALLY trying to not wig out. I’m a pretty stoic person. Definitely cocky. I always figure I’ll find a way out of a bad situation.

When we were young and doing something irresponsible - like drinking underage in a hotel - I’d always turn to my friends and say, if we get in trouble, let me do the talking. New people would try to give me shit and all my friends would turn and say, no, let Julie do the talking.

Did I wait too long? Will I not be able to find a way out of the maze I’ve been lost in for years?

Anyway, I’m very very lucky to have the crew that I do. I want to make sure I’m so appreciative of the people who HAVE stepped forward. OMG they are keeping me ALIVE.

My drivers have been AMAZING. Today, I could barely get in and out of the car. I’m scaring MYSELF. Thank goodness we’re starting to streamline all of this. Thank goodness the doctor today said he will TRY to help me at least get to the right people.

If I make it through 2019, it will be because of good-hearted people who didn’t let go and kept fighting for me. That is for sure. Megan…keeps bringing over supplements. Lise, Joanne, Shasta, are helping me keep doctor notes and spreadsheets. I have Sarah working with me right now organizing my appointments and helping me manage my voicemail messages. I just realized yesterday I never called one of the doctors back. At least I don’t think I did. If I did, I can’t find the appointment! No idea if I booked it.

It’s so terrifying that my brain isn’t working. Way, way scarier than not having my body work. Way.

I need to wrap this up and turn off screens and do more routine so I don’t go to bed too late. I don’t have the strength to stay up late. I’m weaker than I’ve been in awhile, or maybe ever. This post took me several hours to finish!

Here’s to finding answers…I’d like to make it to 50 years old. I feel like that’s a doable goal.

I think.

Much love,

Jules

p.s. I HAVE to share this: my helper, Sarah, just found a message from UW saying “we received an emergency referral for internal medicine. We can’t book an appointment for 2 months.” Yep. That’s our medical system. Great emergency plan people!!!