Feelin' woozy 3.25.19

Lots and lots of chicken broth. This photo is so old, you can see the orange butternut squash soup that I thought I could eat over a year ago.

Lots and lots of chicken broth. This photo is so old, you can see the orange butternut squash soup that I thought I could eat over a year ago.

I’m not well today. I did too much this weekend. Always a price to pay for any activity. I’m very concerned about new symptoms. I haven’t had eggs since Friday. I’ve been having a lot of pain and no eggs. I did eat an avocado and some broth last night which did ok.

Not sure if I should attempt eggs or not. The pain yesterday was pretty bad. It feels like the only real respite I get is when I’m asleep.

This is not good.

I wish I could eat the vegan ice cream but every time I try to reach for it, I just can’t. The thought of it makes me gag. I weighed myself this morning and it hasn’t changed! Thanks menopause - saving my life. Plus, my metabolism is so slow now - doing it’s job in case of famine or illness. No word back from the doctor about these new symptoms.

I feel like I have to audition now to become a doctor’s patient. I have to act the right way. Proactive and compliant, pleasant. Not too assertive, not too sick. Not too healthy. It’s all so ridiculous. Walking this fine line in order to get medical help.

That’s what the system is now - the demand is so high that the business owners can treat their customers however they want. We’re at their mercy.

At the mercy of a country skewed by inequality.

At the mercy of a country falling apart.

At the mercy of a country in denial about so many things.

I was supposed to work with Sarah today but had to cancel last minute. The nausea is worse than it’s been for awhile. I just took a Zofran so it should abate soon. I’ve NEVER had nausea issues, this whole time.

There are so many things I need to get done. I need to assign more tasks to volunteers who are willing and ready to help. It’s just managing all of it takes energy and focus.

I tend to focus better in the evenings - always have - but more so now than ever. So I’m hoping that I can get a few things done in the afternoon.

What if I can’t keep doing this? What if things get worse and worse?

This stupid medical system. I can’t believe how bad it is - and it’s only going to get worse. I was explaining to a friend why. It’s because it was always a fragile infrastructure, ruled by greed and profit, of course. The Republicans have shot so many bullets through different aspects of it over the last two years, taking away subsidies, taking away Medicaid in some states, making it harder and harder for any admin or practitioners who DO care about patients to do the job of caring for patients.

It’s like a shoddily built building and as the demand and population grows, more floors are building placed atop a structure that’s already strained.

One case of Ebola in the U.S. or something even less dramatic, could bring the whole thing down.

Of course, so many people think I’m an alarmist.

I wish I was.

I wish I was wrong about so many things. I wish I didn’t see what’s coming next. It’s terrifying to live with these images in my mind.

I can’t worry about any of that right now. I need to focus on survival. I need to focus on finding reasons to keep going. I need to focus on my medical case.

Shit.

What if I waited too long? So typical of me. Pushing things to the end. I remember finishing a paper in grad school at 10pm - rather than 3am or the next morning when it’s due - and being so proud of myself.

You can’t really work in culinary if you like to know exactly how things are going to turn out. Thriving on the pressure is how I’ve always worked.

But I made have made a poor decision this past year. How could I not do what I did? How could I have not gotten out the vote for the election? So many people think things are bad now….

If they’d repealed ACA or we hadn’t gotten the House….

I don’t like thinking about it. It’s already so fucked up even with those things in place.

I don’t know how I’m going to get through this chapter. I’d like to believe I will. But I’m a pragmatist, above all else. If I can’t eat much and I can’t find the reason why - or doctors who are willing to dig deep, I just don’t know. What is going ON in Seattle? There is something strange going on for sure.

I can’t type anymore. I need to shut my eyes. I wish my body didn’t hurt so much. It aches a lot lately. I keep hoping I can figure out why and fix it. If I can’t find the root cause of things, then I can’t fix the problem.

I guess I’m not even supposed to be alive. That’s a lot of why the docs are struggling with me. How many patients do they have that have survived four cancers? At such a young age too.

I wish I’d done so many things differently.

It’s hard to not let my mind down different paths I could have taken at different points in my life.

It scares me the most when I’m too tired to feel much of anything. Too tired to feel exasperated. Or mad. Or even depressed. I’m way past so much of that.

Going to take a nap.

Much love,

Jules