I went to a bar 4.17.19

This is where I had to detach from my IV pump last night. Yeah. Maybe I’m done with dive bars?!?! I SAID ONLY MAYBE. :)

This is where I had to detach from my IV pump last night. Yeah. Maybe I’m done with dive bars?!?! I SAID ONLY MAYBE. :)

When I was in college, i couldn’t find anyone that looked like me enough to borrow their ID to get into bars. I know, I know. So wrong of me.

I could never wait to grow up! Now, looking back, I realize I considered myself an adult at such a young age because I was treated like one and given a lot of responsibility.

By the time, I was in college, I thought it was absurd that I couldn’t get a drink in a bar. My ex and I moved in together when we were only 20 years old but couldn’t buy a six pack of beer for our home!

I still think it’s weird that you can die for your country but not get a glass of wine at dinner. Our country….

You want to hear how I finally got fake ID? It’s terrible. Can I get arrested for this now?

I asked a woman with long red hair that i found on University of Washington campus if she’d consider giving me hers. She looked at me like I was crazy. Fair enough.

Finally, a childhood friend - bless her lovely heart - gave me her ID and managed to pass that off for at least a year!

My college bestie managed to find someone that looked JUST like her and we made the most of it. Nobody hassled us.

I went to a friend’s birthday gathering last night. It isn’t easy for me to get out of the house these days. I have to figure out what time I’m leaving and work backwards from there. I ate three eggs yesterday - but I think I need to take today off. I’m getting very concerned that I’m moving into an every other day pattern.

Which means: it’s taking my body 48 hours to DIGEST THREE EGGS. Trying not to panic. Moving forward on my case.

I forgot to time my IV bag so I’d be done by the time I left the house. Now that it’s getting a bit warmer out and I’m feeling more comfortable showing my disability, I’ve been taking it out with me and detaching wherever I end up. It’s a little awkward but not too bad.

Thankfully, my friends are all super cool and have quickly picked up how to support me.

I get pretty anxious now before these types of gatherings. This is new for me. If my group of friends were at a house, I’d feel less anxious.

But now, if it’s a gathering in a public place, I get nervous I’m not going to feel good. Or, that I will need to get home quickly for some reason. Or, that I’ll nod off dozing like I do in improv class (I can’t even. It happened today during my IV appointment, I just fall asleep - that’s new for me, I’m not usually a public sleeper).

OR, that I’ll end up detaching my IV bag in a bar bathroom (mad respect for the parents out there that have to change their kids diaper in rando bathrooms)!

I was so flummoxed being out of the house and I’ve been stressed about my dad - which I can’t even write about here yet even though the news is public - because my mom and I are SO upset with how his case has been handled. I’m not ready to process that here in my writing yet.

ANYWAY, I didn’t realize my IV bag was nearly empty so I literally am walking into the bar when the machine starts beeping. I’m like SERIOUSLY!!!! I could have detached before going into the bar? I don’t feel like doing it at the table even though my friends are so open-minded and the coolest. Plus, I needed to use the loo!

I walk in and the photo above is what I see.

It was actually very clean - just full of graffiti. For the first time in my life, I’m like hmmmmm….I don’t know about these dive bars. I’m sure that’s not true. I’m sure I’ve had that thought before but just don’t remember it!

Now? It’s such a strange thing for me to overlap my old life and habits with this new life and new things like the IV bag.

I wish I could find the words to explain what a trippy experience that is!! To feel like one person in one moment and than boom, realize I’m not that other person anymore. I imagine this is something new parents (or old parents for that matter) must feel? There’s got to be a bunch of different human experiences that result in this double vision.

Sometimes I still see myself like the old me. I wander down to the bar without checking my IV bag or evaluating whether I should detach first. I forge ahead making plans for the next month, even though I have no idea if I’ll be able to make it.

Listen, it’s pretty weird to be dying in slow motion. I think about Claire Wineland all the time and what that must have been like for her. How do you make sense of that reality? Knowing that time is moving much faster for us than for most other people?

How do you make sense of feeling like there is never enough time? Or, knowing your body will one day just turn on you and that’s it? Or, for me, will it be slow or fast? This is something I can’t help but wonder. Will I have control over it? Or will it happen too fast and I won’t get everything done and still have plans on the calendar?

Sometimes I think I make plans simply because if they are on the calendar, then they have to happen, right?

Do I spend precious time and energy flying all the way to this Lynch Syndrome center in Boston? Or, will I feel like it’s a waste of time? Every trip is so hard on my system, I have to be so judicious with it right now.

When the fuck are they going to prescribe fucking TPN so I can at least stop stressing out about not getting the nutrients I need? At the very least, then I can MAKE these trips without passing out in an airport?

Also, why is it so hard for people to understand how truly fucked up our medical system is? I am so so grateful for my drivers. I feel a little bad that they see SO much whacked out shit just from driving me one time! Not all of the appointments are like that - but most of them have me begging for something. Or, explaining what I need and I’m trying to find. Or getting pushback. Or ordering my IV fluids. Or Or Or ORRRRRRRR.

I can’t believe what’s happening to my dad. But it illustrates how truly messed up the system is.

I warned people 2 years ago that I may not survive this administration and so many people just pat me on the head. Oh Julie. Always making such eccentric statements.

And I’m like actually no, I am not an alarmist. Did I freak out once about dying when they diagnosed the three cancers at once? Nah, in my family, we can handle that. Did I freak out when I stopped being able to eat any dry food? Nah, I figured I had the background to figure it out.

Am I freaking out NOW with weird symptoms, a quickly shrinking diet and increase in pain? Hell yeah! Even I can’t pull everything back.

I can’t believe my dad and I are both deteriorating at the same time. Unbelievable.

But not really. The medical system is so fucked up. The fragile are the first to go.

Why don’t people believe me? Why can I work so hard for my degree and my career and my credibility and people still doubt me?

What do I need to do to wake people up to how bad it truly is? I worry about some family members who are in major denial.

I can’t help keep them alive during their inevitable health problems if I’m dead.

Why do humans often do things that go against their best interest?

No answers. I ended up having a lovely time last night. I’m very tired today and the IV bag I got made me extra sleepy.

But the work must go on! Sarah is coming over now so that we can finish getting my medical case organized on my website.

I’m at peace with the decision to make my case more public. I’ve resisted it for so long. It just feels so personal and I hate the fact that I have to go begging for help on the Internet while living in a blue city with “supposedly” good medical care.

I know that this could end up helping others in some way, that’s the only way I can reconcile it in my head. A larger purpose will be served.

That’s what keeps me going a lot of days.

Ok, I think I heard Sarah’s car. Must keep working! A day’s work for the disabled LITERALLY NEVER ENDS.

Much love,

Jules