I'm in a time warp 4.29.19

Vegan lemon ice cream from Sugar Plum. The store bought brands are so gross to me now, I’ve had to hunt down specialty products that won’t make me gag. I need to keep the calories coming in! This store has delicious products!

Vegan lemon ice cream from Sugar Plum. The store bought brands are so gross to me now, I’ve had to hunt down specialty products that won’t make me gag. I need to keep the calories coming in! This store has delicious products!

I wish I could explain what it’s like to not be sure how much time is left in one’s life.

The ambiguity is hard to live with - I could be gone in 9 months or I could last another 9 years. Or somewhere in between.

I’ll tell ya this much: if these doctors don’t get their act together, it’ll definitely be closer to 9 months.

My dad isn’t doing well at all which always throws me. It’s so strange. If I’m not doing well, I can remain stoic and battle ready. When he is sick? I start to lose it, I get spacey, I have a much, much harder time concentrating. Friends advise me on how to grow my following on Instagram and I’m like I don’t know if I can concentrate well enough to do any of that.

Ever since he got sick in the fall, the clock seems to be ticking louder and louder in the house. Now, it’s me and him shuffling around the kitchen: which one of us will go down next? Which one of us will go down for good?

What’s so freaking maddening is that neither of us should have gotten this sick. He should have been monitored all these months. My mom is delirious - we’re all functioning on auto-pilot. My dad has always been SO strong and he’s been so weak and his coughing is worse. She took him into the doctor today. I’d like to get him on IV vitamin therapy but not sure if it’s contra-indicated with the immunotherapy so I’m emailing with my old nutrition professor who has been seeing for years now.

I’m listing out the things he needs. In the mean time, I have several threads going about doctor recommendations, hearing medical horror stories (heard about a young woman…it’s not my story to tell but for any able-bodied that aren’t “believing” me about how bad it is - I will be collecting stories. And more stories. Until there is no option other than to hear us, and believe us).

My friend Paula and I are hosting a class on essential oils in early June which I’m SUPER excited about. But of course, that drags my mind from things. But all I can think about is: I’ve GOT to find a way to make a living! There’s no way my dad is going to be able to work for much longer, despite how my mom dragged him to the warehouse last week THREE DAYS. I finally had to tell her to stop this weekend. He can’t do it. It’s wiping him out.

She took him out for a haircut yesterday and was like “it’s a small outing.” And I agreed, small outings are fine.

Megan and I are working on updating the downstairs so that I can possibly host classes here. Of course, all of this is predicated on the idea that I will be healthy enough to do that. Hopefully, still alive! But I feel like I have to keep moving forward assuming I WILL be alive. It’s not good for my mental health to take breaks from work projects.

I figure even if I’m just coordinating classes - that way if my health gets in the way, I’m not disappointing a bunch of people. I don’t know. I’m throwing noodles at the wall. I’ve just found that I don’t really like being all over social media lately. Maybe that’s because I’m just tired of it all. Maybe it’s because I’m feeling emotionally healthier and not looking for so much outside validation.

Maybe it’s because the Internet has become such a hard place to be. It would be easy to let myself slip into the cocoon of denial. I see so many people do it, especially around here.

But then my dad starts hacking and I can’t get eat eggs for an entire day and then I remember:

I don’t get to be in denial! That is not a luxury I get to have. My very survival depends on me facing the gun straight down the barrel. No flinching. No crying. Not even anger.

I have to be as calm and strategic as possible at this juncture. I have to show incredible emotional control in these doctor appointments - even on 800 fucking calories a day - and remain as credible as possible.

That’s the bullshit thing. If I’m too off kilter, they will say see we don’t even know what she is saying.

If I’m too calm and collected, they think I’m not that sick. I have to walk an emotional tightrope in every single one of these appointments. I have to think on my feet on the best way to persuade them to help. I have to rely on every single hustling skill I developed in New York City. Find a way to be HEARD and believed.

Or I’m dead.

If I’m dead, then my dad’s dead.

Not sure why my siblings still haven’t figured out that their survival depends on my survival but….

No way they’ll know how to navigate this fucking maze without guidance. It’s not about being rich! That’s the thing that so many people don’t even realize! I have access to funds. The system is so wrecked that not even money can fix what’s going on here.

I have an incredible network. A background in healthcare. I have a angelic friend who will help with the financials.

And I’m still so sick and can’t easily find the right help.

It’s the SYSTEM and it’s broken.

I ran into a childhood friend at the vets on Friday. I told her straight up to avoid the hospital system that has been blowing off my dad. Her eyes got wide and panicked. She couldn’t even utter a word. Most of us have grown up going there, it’s the “safe” place to go. Now my dad - who didn’t want to switch to a new doctor or facility in the fall even though I urged him to - will not go back there for anything cancer related.

I then said “ok, don’t go for cancer care” and she was like “uh uh” and I realized, she thought well I don’t have cancer. (And I’m thinking, today you don’t. Sorry, it’s simple stats.) I said “ok your people, don’t let your family go there.” And she still looked panicked.

I feel so bad. I feel so bad for all the people who will be diagnosed in upcoming years and not know where to turn. And not be able to get into the doctor office because it’s got too many patients. And not be able to get treatment because the insurance companies has the ENTIRE country by the balls and laughing all the way to the bank with their Big Pharma friends.

I feel bad. I feel bad that I can’t do more. I feel so frustrated that I have to do so much to keep myself and my dad alive, and I can’t do much else. I hate it! I want to be strong again! I want to be able to work full time again! I want to be able to work and work on my computer, until everyone has the information they need to navigate all of this horrible business.

But I can’t. I have to put the oxygen mask on myself first. I have to focus on my appointment today - oh please please let it go ok.

I can’t get frantic. I don’t get the luxury of panicking. I can’t be in denial.

I have to be calm, cool and collected. I have to state my case clearly but with the persuasion of a veteran court lawyer. I have to be prepared to hear the word NO and what that means for my survival. I have to find a way.

I will find a way.

This doc and I go way way back.

I kind of like that I’m finally aging. I hope it means I’ll be heard better. I hope it means the doctors will take me more seriously now that I’ve changed so much in a relatively short amount of time.

I have to go now, my pajama bottoms are falling down around my hips and I need to go beg a doctor to save my life.

Again.

Much love,

Jules

No time to edit, sorry for typos and all that.