I feel better on fluticasone 5.7.19

I’m sharing this instead of another photo of my stupid hand. I want to draw things like this! Drawing is relaxing for me and good for my mental health, so it would be great to create educational tools doing something that soothes my mind.

I’m sharing this instead of another photo of my stupid hand. I want to draw things like this! Drawing is relaxing for me and good for my mental health, so it would be great to create educational tools doing something that soothes my mind.

I already feel better on this drug. Though, I was a little hyper last night given how little energy I should have had. That means I had to take a 1/2 Xanax to stay asleep all night. Oh and did I stay asleep!

I’m so relieved - and lucky - to have the fluticasone. it legit saved my life in 2017. I just wish it didn’t mess with my sleep so much. I did get a lot done last night!

The space where I usually walk on the treadmill is being painted - WAHOO! - so I HAD to walk outside. I dry up faster when I walk outside. I waited until evening so that it was a bit cooler. I am always happier after a walk outside than on the treadmill. I hate feeling like a fucking hamster all of the time. Walk, move, stretch, walk, move, stretch.

And yet, the medical system is STILL moving sluggishly along to get me more nutrients in my IV bag.

See, if I get more nutrients in my IV bag, THEN I DON’T HAVE TO WORRY ABOUT EATING all my calories. Then I don’t have to take so much effort to try and get it OUT of me.

But nope.

I’m a little rat, a little science experiment for the Patriarchy. How long until we can kill this one off?

There’s a guy I follow on Twitter who is medically fragile. I can’t remember what illness he has. He’s a young, white lawyer and I sat and watched an entire video (which isn’t showing up as of the last few times I checked, will try again, my wifi sucks) where he shared that he lost his health insurance.

He moved to Massachusetts specifically to get good healthcare. He became a LAWYER and created a career that would empower him as a medically fragile person.

Still lost his insurance. Gone since April 10 - he found out this week from a pharmacist. They didn’t even bother sending him a letter.

The panic! OMG I wish I could explain to able-bodied who pat me on the head: you won’t lose your coverage!

I’m like how the hell do you know that? You’re not scared because you’re safe!

Matt goes on to share how when he goes to the Medicaid office, he’ll at least be heard because he is white, cis man. He is so aware of the struggles that so many others are facing in the system! This is why he does what he does. This is why I do what I DO.

And yet, I am still not believed. So many times, I don’t feel believed.

It wasn’t until my dad got screwed over this past year that even my own siblings are starting to grasp how bad it really is.

They have the same gene as my dad and me.

I have a friend who is getting chemotherapy today in Texas.

I have another friend (weirdly from the same group of friends) whose husband has brain cancer. She is having a really hard time with her mental health, trying to navigate the system and help her husband stay alive.

Another friend about to start radiation on his neck - all of them in their forties and previously totally healthy, white, access to care and out of pocket expenses.

Still.

The system can be such a nightmare. FOR US. What is it like for the people of color? The ones dependent on machinery to stay alive? People who speak English as a second language?

And still.

So many able-bodied think: oh, it won’t happen to me! I have good coverage anyway. I have a savings account.

Ha! As if money will fix the nightmare. What a delusional. I have access to money! I’m one of the fucking lucky ones!! And still, it’s not enough. Wrong doctor, like my dad had. Wrong care.

It’s much, much worse than I could even convey.

I feel like I was shoved from the able-bodied side of the world over to the disabled. And I keep hollering and screaming that it’s a fucking war zone over here. Instead of seeing what I’m talking about, and BELIEVING me, people simply wave back. And go back to whatever it was that they were doing before.

Or, they rant a bit. And then go back to whatever it was that they were doing before.

Or, they pat me on the head. And then go back to whatever it was that they were doing before.

What will it take? There is essentially a non-violent coup happening in our government AS I WRITE THIS.

The denial in this country is astounding.

If only I were believed. If only I was believed from the beginning. If only.

Time is so short now. Possibly for me. Possibly for my dad. How will others navigate the system when THEY get sick, if the people like Matt and me are dead?

You’d think people would understand that humans truly are an inter-dependent species. But it doesn’t occur to far too many ables (able-bodied people) that THEY NEED US just as much as we need them!! Statistically, they or someone they love will end up in a medical situation sooner than later. They will need our expertise, our advocating skills, our medical resources, our doctor referrals, our phone numbers, our shrewdness….

But nope. Don’t see it. Don’t want to see it. If you don’t want to see something, I’ve found, it simply is not seen.

I feel like I’m going to pass out and I got actual sleep. I have yet another doctor appointment today. Another MD that is integrative. It only took me THREE years to get to the good doctors in Seattle. Damn, people hoard even their doctor contacts. And look how connected I am! Check out my network! I’m a third generation Sephardic Jew in Seattle!

Still.

People are more stingy with their network than they are their money. And that’s saying a lot.

I am very grateful for the handful of people who have stuck by me and helped me get to these doctors.

The more GOOD MDs I have on my team, the harder it is for other MDs to ignore me or blow me off.

The more COMPASSIONATE MDs I have on my team, the less likely Medicare will deny my care.

The more SMART MDs I have on my team, the MORE LIKELY I WILL STAY ALIVE.

If I’m having this much trouble in the system…I shudder, no, I feel sick when I think about how so many others must be doing.

Fucked up.

I saw an activist friend who is feeling major burn out - it seems like it’s really been the same people all along but I’m sure that’s just because I’m seeing their posts and not new people? - and man, it really is hard on the mental health.

The hardest part, for me, was that people were not believing.

Now, with the news getting more and more out of control every day, people are starting to believe.

But this guy said people kept saying: what can I do?

And I have to take a deep breath. I’VE BEEN SHARING RESOURCES AND ORGS AND EVENTS AND WAYS TO GET INVOLVED FOR 2 years!!! I had to take a break because the whole thing is so maddening, I can’t do THAT and also deal with our maddening medical system!

It literally makes me feel like I could have a mental breakdown, and never return.

I’m already not the same person I was even 2.5 years ago, let alone 5 years ago.

They shove you in the hole, treat you like you’re nuts and then guess what? Start to feel nuts. And I mean zero disrespect to the millions of people coping with mental illness.

I’m in awe of what they must have to deal with in the medical system. My goodness, dealing with something that can’t even be SEEN? Omg, I have hundreds of pages in my chart documenting everything that’s happened to me, AND THEY STILL ACT LIKE I’M MAKING SHIT UP!

Ok, needed to get that rant out. Thanks for listening.

Much love,

Jules