Taking a moment to BREATHE 5.2.19

This is my only real meal of the day - I eat this every single day.

This is my only real meal of the day - I eat this every single day.

I realized I feel less frenetic than I have in quite some time. Phew!

Though my diet shrank, whatever was causing the worst of the symptoms starting in mid-February seems to have calm down. I’m holding the current weight steady. I’ve found a few things I can eat to make up for the loss of eggs. My dad is…well, he’s hanging in there. They had to take him off the immunotherapy because his lungs overreacted to it and caused a ton of coughing. He’s now on prednisone! 60mg which…wow, cause some creepy dreams and other weird symptoms. The hyper part can be fun though. I keep warning him that he’s going to feel like he can climb Mt. Everest, but you know how that kind of advice goes over with parents. If someone else tells him, he’ll listen!

Thank goodness, I have a doctor team in place, in case things get bad again. And my crew, my drivers! Omg, it’s so good for my mental health more than anything. I feel like I have the bandwidth to get some things done when I get home. I don’t feel so stressed out before and after appointments. It’s wonderful!

I do need to finish my bio and get all the pieces in place to post my “help me find GI experts” campaign. Every time I have a bad gut bout, my diet shrinks. What am I going to do next time?

I also need to get through my messenger messages (I’m scared to look - I think it’s in the hundreds). Sarah and I have tackled my email though it’s now my job to write the personal notes.

At least my dad is looking better! Dang that’s been scary the last few months, watching him get worse and worse. He saw his doctor early this morning and the doc seems hopeful that they can take care of my dad. I, of course, don’t trust any medical people easily. But he is highly recommended at SCCA and he’s really kind to my dad. That matters a lot. They joke about biking.

I know that another shoe could drop. I live with that right next to “drop by the drug store” in my brain.

Thankfully, though, I don’t anticipate any Negrin funerals for the time being. Sad. I know. Morbid. Yes. But it’s been a lot of tense months between his health and mine. We didn’t talk about it, of course, but we’d both be in the kitchen shuffling around eating our little meals, knowing that one of us could go down for the count.

That’s him in the background in the photo. He’s making some hamburgers. I know prednisone is a “fake” upper but dang it’s good to see him doing regularly activities!

And I get to eat my LOVELY dinner.

Doesn’t it look yummy!?!?!?!!?!?!?!?!?

I realized I rarely talk about the details of things like my diet on here, because there’s always so much other shit going on!

I thought I’d take a moment to describe what it’s like to eat the same thing every day, and live on mostly liquids. Well, I’m not sure I can convey THAT but I can tell what I’m “eating.”

Let me explain the photo.

On the left is my homemade chicken broth with three high-omega 3 eggs. The white stuff is two different non-dairy milk alternatives with some whey protein. I’ve tested 1 teaspoon twice and tolerated it fine - it’s got to be in a LOT of liquid. So today, I increased it to about 1.5 teaspoons. I’m so scared of pain, I do things very, very slowly now.

The orange drink has powdered probiotics, glutamine, vitamin C, and calcium-magnesium blend. I try to avoid capsules / pills as much as possible because sometimes my GI doesn’t absorb any of them! Nope, I literally flush money down the toilet. Drives me mad!

YUM-MY.

JK.

Thank goodness I still like eggs and the broth. I mean, obviously, if I could stop eating them, I’d probably never ingest either every again! But at least they don’t make me gag.

This is what I eat every day. It’s now a little after 6pm. I went to an appointment earlier and then ran errands (trying to find goat milk!) and this is all I’ve had all day except for my tea and protein drink.

Later, I’ll have an avocado with dressing which adds up to around 400 calories if I like the current dressing I’m using. Sometimes I get so sick of them, I can only use a little or have to resort to the teriyaki sauce in the fridge which is meh. I have now added in the sheep’s yogurt which isn’t that many calories but makes me feel full! And also, it’s something I can eat on the go which is SUPER handy.

I drink a lot of teas, some good quality juice. Some things like lemonade which aren’t awesome nor terrible. It’s amazing how many calories you really can eat.

But for the most part, this photo is my largest “meal” of the day.

After I “eat” this, I’ll put my IV bag on - well, I may shave my head first, it’s growing so fast with the warmer weather! - and do my long-ass routine. Just to move this food through! I still can’t believe this arrogant doctor said “well, maybe you’re not eating enough!” I’m seriously considering bringing in my resume and a printout of photos in my old life now to my appointments.

SHOW THEM who I am, what I’ve accomplished, how I used to eat, the whole bit. I’m over this treatment. Totally done. It’s fucking bullshit! Here I am asking them for help and they treat me like I’m trying to screw them out of some morphine!!

Walking out of that appointment yesterday was very empowering. I’m going to find other ways to empower myself in these appointments. Hell, maybe I really will bring my resume! It will certainly show whether or not they have a sense of humor!

I should describe what I have in the pan behind my bowl of broth. When I cook the eggs, I purposely over-cook them so there is a crispy layer on the bottom of the pan.

It provides some CRUNCH, which sometimes I’m so desperate for I’ll drive to Trader Joe’s right before closing and buy those awful meringue cookies. They are so delicious but terrible quality and too much sugar. But there must be something primal about needing to CHEW and CRUNCH. Plus, I always was a crunch, salty person before all this. I loved popcorn, nuts, seeds, shit I can’t even remember anymore.

I didn’t have a sweet tooth so it’s kind of torture to think: mmmmm I’m hungry what can I eat? Pudding, vegan ice cream, all this gross crap. I’ve really got to develop some recipes for myself now that I’m on Year 3 of this crazy fucking diet.

I can’t believe it’s been that long. I really truly thought I’d live with my parents for a few months, find a job and move out. I can’t believe it. I’m very grateful to have a home, a nice home. I really am. I’m so much luckier than so many people.

This just isn’t what I anticipated. Sometimes when I’m driving east, I just want to keep driving. Head to I don’t know, somewhere else. Anywhere else. I’ve always hated feeling trapped.

Now, I’m slowly eating my MEAL of broth, 3 eggs and a few drinks. I will spend about an hour consuming what you see in the photo. AN HOUR. Like a seriously old person.

I can’t put anything in me too fast or it’ll cause problems. Not always. Every once in awhile, I’m so freaking hungry, I can’t stop myself and I do ok. Other times, my GI is like fuck you bitch, PAIN PAIN PAIN, you ate too fast!!!

I’m definitely the submissive in this relationship with my gut. The GI is the boss and I’m it’s bitch.

I still have a lot of doctor appointments this month. I’m seeing my pattern now that I have a moment to reflect (it’s REALLY hard to process SO much SO quickly, and while my brain is fuzzy). As soon as I’m feeling a TINY, TEENSY bit better, I ease off the appointments. Naturally! Who wants to spend their time running around to doctor appointments? Ok, like I’ve mentioned before, there is a very tiny demographic of people who are fakers. In many years, I’ve met maybe two or three? There’s not a lot! So when these doctors act suspicious, it’s really aggravating.

It’s like penalizing ALL the benefit recipients because .05% commit fraud. It’s like Ok rich people, sure, it’s US that’s frauding the system and YOU out of your tax money. Yeah, right…fuck over the people on benefits so you can buy an extra yacht. Sure.

Anyway, I have a lot of tasks to do. Another misconception is that disabled people are laying around eating bon-bons.

Consider this: I have to do ALL the daily tasks of a regular life, store, fill air in tires, bills, run errands, manage paperwork, clean house, all that stuff, figure out how to make a living so now creating content for the Internet with the hopes that it will turn into something, PLUS fight for my benefits, PLUS research my medical case, PLUS spend hours trying to digest food and go to the bathroom, PLUS, spend extra time eating and preparing food - and I have a fraction of the energy of a healthy person.

So many stereotypes. I still do it! I generalize! I stereotype! We all do. It’s often how the brain organizes a massive amount of information that it takes in.

But we’re smart enough to figure out how to un-do those things.

I’ll do whatever I can to un-do misconceptions about medically fragile. If that’s why all of this happened to me, to help give voice, I’ll do it. There are so many incredible disabled activists that have been doing this a long time, so I just want to make sure I’m careful about not fucking shit up or not honoring their work.

I hated when people did that in the Food Movement. Waltz in and think they invented the whole thing - not realizing their “success” was due to other, often less wealthy people, who worked their asses off to get the Movement going.

I’ll figure it out eventually. For now, I need to get some things done. I LOVE shaving my head - both the act of doing it and then having it super shaved. I don’t know why. Maybe one day I will write about it!!

Much love,

Jules