I am a little grumpy 4.18.19

I got an IV bag yesterday and brought chicken broth, lemonade and water with me because I felt so sick after my bag last week. I fell asleep for most of the appointment. Napping in the middle of the day like this is new for me. But I supposed the low calories and everything else aren’t helping! (I drink water out of a jar because I’m trying to avoid plastic.)

I got an IV bag yesterday and brought chicken broth, lemonade and water with me because I felt so sick after my bag last week. I fell asleep for most of the appointment. Napping in the middle of the day like this is new for me. But I supposed the low calories and everything else aren’t helping! (I drink water out of a jar because I’m trying to avoid plastic.)

I apologize to all marginalized people for all the STUPID shit I must have said over the years.

My goodness. We’re all growing / evolving. I get it. We are all waking up to a lot of things. It can’t happen all at once.

But we DO have to make effort.

I’m feeling a little frustrated about a conversation I just had with someone online. I said I couldn’t participate in an event because I need to focus on my health and my dad’s health since we are both really sick, this person said “we’re all dying, just at different stages.”

Deep breath.

Is this to reassure themselves?

Is this an attempt to reassure me?

Is there some sort of hope that this will comfort me in some way?

(Just found out they used to work in the medical world!)

Since this person is an activist and presumably, an open minded person, I wrote a very polite response saying I appreciate the sentiment, but it’s probably not the greatest response to someone who is very sick. Then I get a response about how the spirit will live on.

Anyway, I politely wrote back after that and then closed down the conversation. I know people are trying to help. But HEAR US WHEN WE SAY WE NEED SOMETHING.

If we’re saying something isn’t cool: hear us!

I said this on a Facebook post awhile back:

If a black person says something racist, it’s racist.

If a Muslim says something is bigoted, it’s bigoted.

If a trans person says something is offensive, it’s offensive.

Is every single person in each demographic going to agree on what is and isn’t offensive? No, of course not. But if people want to survive in the new world being birthed now - a very fast-changing world - it’s a good idea to error on the side of not continuing to say something that COULD offend, right? RIGHT.

If a chronically ill person says: this is my experience, please honor it, why argue with that person? A sick person who is stressed out beyond belief, living on hardly any calories, scared all of the time that something random and unpredictable is going to take her down….

Hell, my own dad was exercising last week. This week, he can’t get out of bed and is coughing and coughing from the fucking cancer they let SIT IN HIM FOR SIX MONTHS.

My mom is incensed. They might have killed him with their arrogance and incompetence.

Oh, he doesn’t need an xray - THREE DOCTORS told my mom nahhhh the patient that’s had THREE cancers and lung cancer in the fall OH and a stroke, nope we don’t need to GIVE HIM AN INEXPENSIVE NON-INVASIVE X-Ray.

This isn’t even the whole story. I have to process so much of it in real time, while also working on my own situation, while also only consuming a tiny bit of food. I couldn’t eat any eggs yesterday - can you tell? I do get grumpy when I can’t get my 2-3 eggs. Liquids only without TPN that I continue to beg and beg and beg for…this is happening for a reason. I tell myself this.

I am the canary that must scream loud and clear so that the people who can fix this shit, will understand how dire it is.

I do understand that we’re all dealing with a LOT of shit right now while watching our government fall apart.

I get that we’re all human. I get that we’re all learning. Hell, I’m not woke at ALL about disability. I was thrown into this situation at mid-life and I’m swimming around trying to figure out how the fuck to navigate this strange new world.

I don’t mind if people say things and then I gently mention: hey that felt minimizing, probably not the best response.

Don’t argue with me after THAT.

My dream is to create some interesting graphics (comics?) or videos to explain more of this in an entertaining way because it’s hard to hear in this kind of format. It has to come through in a way that allows people to let it seep into their minds. When people feel shamed or attacked, they don’t open up to new concepts.

I’ve been a teacher for a long time. Shaming is not an effective teaching tool.

If someone says something makes them uncomfortable, I would bend over backward to make up for it. I wouldn’t double down. I don’t get that response.

One of the most able-ist things I’ve encountered is not having my experience believed.

Even though I’ve spent my entire career trying to establish that I’m a credible source. Never taking money from a food company. Never selling out. Doing my homework. Paying my dues. Healed a disease. Helped create an entire niche (kids cooking) in the Food Movement.

There are plenty of nutrition colleagues that I’ve pissed over the years for calling out things like I don’t know, soda isn’t great for kids and other RADICAL things like that - but I’d bet if you asked each of them: does Julie Negrin bullshit?

They’d all say nope. Not a fan of hers but no, she doesn’t bullshit. Not about serious shit. (Ok, so I’ve been a flight attendant at parties over the years - I’ll own that.)

The one thing I keep encountering over and over and over again is not having my experience believed.

It’s so hard on my mental health. I already have to go through so much and then to share it and have people say oh well we’re all dying. Maybe you’re not trying to eat enough. You should try this {insert one trendy nutrition product]. You need to go to THIS kind of doctor. You’re not explaining your case well enough to the doctors. You’re not you’re not you’re not….

The onus is on me, right? The sick person. Not on the many able-bodied people who have the capacity to help shore up the medical system or improve voter’s rights so that elections are not compromised (thereby protecting medically fragile people by ensuring leadership that cares about their issues).

The onus is on the most fragile.

I can’t believe what I hear sometimes. I won’t tell you the worst of them, often directly from doctors too.

I managed to heal a very difficult disease (inflammatory bowel disease) and have the colonoscopies and prior health history to prove it. All in my chart! Nope. I had one doctor tell me straight up: well, you didn’t really heal it - this was recently at a very prestigious place!!! I said: look at my colonoscopy reports from 1997 to my surgery - there is zero inflammation! I barely had any scarring! And no medications 1997 on and no symptoms!

Nope. They still tell me straight to my face. YOU. ARE. WRONG.

About my own body! And my own experience! ABOUT MY OWN MEDICAL CHART.

I have so much empathy for black women that have to deal with the angry black woman trope. My fucking goodness. How do I not turn into a bitter disabled trope when the world….the world won’t listen.

If they don’t listen, then how can anyone truly understand someone else’s experience?

If people at the top keep thinking they have any fucking clue what’s going on down, down, way down, where the rest of us are suffering on a daily basis - then how will we get anywhere.

I wish I could explain what it’s like to have someone at the very top of our society hierarchy talk about things they’ve ever experience (like the white male friend who said “racism isn’t so bad in this country!” I’m like dude, you live in buttfuck Washington, what do you know about racism, do you even have any black friends?)

We are little tiny ants to those sitting at the top. We look fine to them. And their world looks fine.

So it couldn’t be that bad down here, right?

Why do so many people believe the lies that we all know are floating everywhere?

But not the little people suffering?

This baffles me. There is so much corruption EVERYWHERE. I’ve called so much of it over the last 20 years - even though it aggravated so many people in my field. I was even black-listed from the American whatever the heck that organization is called now Am Nutrition and DieteticsI think - that takes tons of money from Nestle and food corporations and then pretends like their nutrition education information is objective.

Colleagues of mine created this organization in response to the conflict between sponsorship and the corrupt original organization (where I truly hope I’m still black-listed, fuck them for endorsing false information that has endangered the health of Americans for years). I’m one of the few people that started pushing the very, very heavy boulder at the beginning of that Movement.

But nobody remembers that shit. I get it. I don’t need a pat on the back. All I want to see is CHANGE.

Ok I would also like a little respect.

I know it’s useless to think I’ll get it in the medical world at this point. But dang, I can’t believe I have to resort to the Internet for medical help!

The last thing I want to do is make myself known around the world as the sick woman. If you look at my old website, I NEVER mentioned my years of dealing with IBD. I liked being the healthy lady!

These docs act like I’m trying to “get” something out of them. Ooooooh, yes, I’d like labs and I’d like to stay alive. What a radical and difficult medical patient I AM.

Ugh I hate being this frustrated but it’s good to get it out in my writing. Then I can release it and get on with my day.

This is the real deal! I promised Truth!

I promised I’d let this place be my actual experience.

Well, I guess we’re all dying right?

Much love,

Jules