My New Primary Doctor

My New Primary Doctor

Let’s start with the big news: I have a new primary doctor. More importantly, I like her. Which, if you’ve been reading here a while, you know isn’t an insignificant thing. I was a little daunted thinking about this task just after we moved here, but I put what I’ve learned as a professional patient to good use in selecting a primary care physician (PCP).

Basically, there are four things I look at now when I’m hunting for a new doctor here in the US:

Screenshot Text: This doctor has been teaming up with insurance companies since at least 2009 to get super-rich insurance companies off the hook for paying cancer patients the disability benefits they deserve. It's pretty disturbing. Recommend researching him before you choose him to be your treating physician.

DO over MD: There’s just something more humane about the way I’ve been treated by DOs. I’m not saying that all MDs are terrible and myopic—far from it. But I’ve never been treated like crap by a DO yet. So I figure why mess with what works.

Woman: It has historically been helpful for me to receive care from women. I’m not saying that all male doctors are terrible either, but my experience has been telling. Percentage-wise? Dudes are way more likely to be arrogant jerks. And arrogance gets in the way of my getting good care. Arrogance literally traumatized me. Not letting that happen again if I can help it.

Insurance: I’m on Medicare due to disability, and not every doctor wants to deal with that. I always check before I schedule.

Ratings and Reviews: Most doctors these days have been rated by patients, either on Google or Healthgrades or, you know, somewhere. I read those reviews. All of them. (Coincidentally, I just received an email this morning telling me people found my review of Dr. Lee Hartner helpful. Suck an egg, Hartner. You absolute ass.

So yesterday’s encounter went really well because one of the things my new doctor said was something like, “I don’t know a whole lot about brain cancer.”

Music to my ears, kids. I immediately knew I was in the right place when she said that. Doctors who admit they don’t know everything are magical. Like unicorns. I told her that was good, and maybe we’d both learn something.

“Also,” I said, “I have, uh, some trauma from a doctor who thought he knew everything and I knew nothing. So my brain tumor was mis- or undiagnosed for a couple of years. I’m going to be a little anxious every time I’m here.” My voice got a little quivery and I could feel a few tears bubbling. I was tired and trying to stifle the medical PTSD episode that wanted desperately to be let out and recognized. I didn’t cry, but I came really close.

Anyway, I told her about my extreme sensitivity to meds, how doctors always want to prescribe me medicine by weight and it always ends badly for me and she said something like, “I get it. I’m the same way.”

So I found a new primary doctor in one try. That’s nothing short of amazing.

Not Gonna Sugar Coat It

Not Gonna Sugar Coat It

Things kind of suck right now. I don’t want to list all the reasons why, so you either have to take my word that it’s worse than I let on or think me a drama queen with a penchant for vague-blogging. Honestly, I don’t care which it is. What I will say is that I have to make a trip back to the house I was hoping to have been done with and the New Digs only have one working sink–a wash tub–in the laundry room. I can’t tell if things are still hard because I set my hopes too high, or if things are genuinely hard. In the interest of giving myself the benefit of the doubt, however, I’m just going to say things are still as hard as they were, just in different ways.

The financial pressure that I had hoped would ease has not yet, and it’s impossible for me not to think about money constantly. Maybe once the house in Urbana sells? Maybe once we have a functioning kitchen? I don’t know. There are things we need but can’t afford and there are things we don’t need that I’m being pressured to bring back here. I love Dan. He knows this. He also knows that his refusal to part with material things makes my life infinitely harder because I’ve said so many, many times. So instead of dying mad about it, I’m going to type it here: His stuff burdens ME. Also my Mom is—and I say this lovingly—very particular when it comes to housekeeping . And we are not.

Fuck it. Let’s just write this thing.

It’s not that I wouldn’t like to have a tidy house all the time, it’s that two disabled people physically CANNOT. And Chad, our robot vacuum won’t run here. I contacted support about the correct app for the Neabot not being in the Google Play Store any longer and received a reply the next day saying to download a different app that, as it turns out, is also not in the app store. Call me a pessimist, but if customer support doesn’t know what apps they have published, I think we’re going to have to buy a new robot vacuum. So while I was previously very happy to have Chad and would have posted a link to his Amazon page, I refuse to recommend him now.

And leaving out affiliate links is no small thing for me either, because we are fucking broke. Again. No, we’re not in danger of losing the roof over our heads or going hungry at least, and I want to make that clear. But I have to find doctors and make appointments, and try to be presentable when plumbers and cleaners and electricians get scheduled. There’s no room for “panic about money again” in my datebook.

I need a haircut and to feel like I don’t wake up every morning with two different sets of eggshells at my feet. I need the thermostat to show up on my phone or the weather to stabilize so I don’t have to fucking get up to change it. And I can’t let any of that shit go very easily because I’m not just money broke, I’m energy broke. I’m not saying any of this to get help either, because saying thank you is also a fucking burden.

Again, I’m not always this cranky. But stress has reversed my chemopause, and my words are the sharpest thing on me right now. Speaking of chemo, other people want me to be taking it right now. Fuck other people.

I’m overwhelmed. People would help—have helped—but I can’t even brain hard enough to figure out what else to ask for. I’m shutting down. Not because I’m stubborn, but because I have already used up my spoons for the first and second quarters of 2023.

Earlier this week Mom said something to me about how we shouldn’t really have the pets, which hurt. I told her flatly that we got the pets before I was diagnosed suggesting the ever-popular excuse “Nobody predicted any of this in 2015.” She nodded in agreement, but it would be helpful if I wasn’t constantly defending my every fucking life choice all the goddamn time.

I’m trying not to let stuff get me down, but being in the middle of every unspoken conflict and trying to keep the peace is not anything I have the capacity to do right now. I deflect what I can, but I end up absorbing most of it. Which is probably why I’m muggle sick, sporting a cold sore, and perpetually exhausted. My Mom is in her seventies and can run circles around both of us. She has done so much, but the one thing she can’t do is empathize. It’s not a shortcoming, no one knows what anyone else is experiencing at a given moment, but it’s also not something I can handle well.

Until our kitchen and bathroom countertops are installed, we have zero use of our kitchen, and we can’t really unpack anything. We’re living out of boxes in various rooms and at least a dozen times a day one or the other of us is asking “Have you seen X?” We had to leave our refrigerator at the old house and are borrowing a dorm fridge for the time being. Mom is going to get a new fridge and let us use her old one, but Dan wants a French door fridge like we had and…Mom is getting a French door fridge. It’s her right to buy what she wants. And it’s Dan’s right to feel bitter about everything. And it’s my right to fucking scream until I’m blue in the face.

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGGGGGGGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHH

If you pray or send good vibes into the universe or whatever, please put in an ask that we actually get our kitchen and bathroom countertops on Tuesday as promised by the installers. At least once that’s done we can put stuff in cabinets and get rid of more boxes. I actually have a housewarming list on Amazon, but I’m afraid to post a link to it right now because we don’t have anywhere to put stuff people might want to give us. If you want to help, maybe watch a video on my YouTube channel instead, because I’m probably not going to be able to put up a new video for a while longer and I don’t want the algorithm to think no one cares anymore.

On a more positive note, we got our first bit of feedback on the sale of the Urbana house, and it was all positive. Despite our inability to fix cosmetic things, the structure is in excellent shape. And the feedback we got on the price we’re asking is “just right.” The house was listed Monday and we’ve already had 4 showings. That paired with the fact that inventory is so low in Urbana have me hopeful that it will sell soon and with much less fuss than when I tried selling off that hunk of junk condo I had to lawyer my ex-husband out of.

There’s more, if you can believe it, but I’m tired and typing hurts.

Moving Right Along

Moving Right Along

Less than three weeks to the big move, and I have so much to do I can’t think straight. So, naturally, I picked today to start making some minor updates to this website. And even more naturally, I found out that somewhere along the way, I totally screwed up chapter numbering on my memoir. I don’t have the brain juice to figure out exactly what’s wrong let alone fix it right now.

The upshot is that I have an unpolished Chapter 25 that only exists as a draft and isn’t linked in the Table of Contents, and then in September I posted new content for Patrons as Chapter 26. And all I can say is, IDK? Maybe at some point I tried to publish Chapter 25 and forgot what I was doing?

The good news is that despite not having a clue what I was thinking or when I was thinking it, Chapter 26 was published and nothing happened. It was one of those things I had to post, even though the events were out of sequence and sort of didn’t deserve to be dropped in the middle of a very chronological retelling of my post-2006 life. But that’s just how things go when your brain cells have been irradiated and you’re writing a webserial memoir, I guess.

Anyway, it’s good news that nothing happened when my patrons read Chapter 26 because I desperately needed to see that I was indeed past my past. I’ve spent a long time in my head thinking that if I wrote or spoke out loud about being abused as an adolescent, I’d have to relive that trauma. And now I know for certain that talking about it is a separate thing than being in the midst of it. It only took me 25-ish years to figure that out. I’m used to bad and traumatic things leading to more bad and traumatic things, and that is one reason why I’ve been living in a constant state of hyper-vigilant catastrophizing.

(I know just enough psychological jargon to be dangerous. These words are the best I have, but by reading them, you agree to hold me blameless if I’m misusing them.)

My point is, I think, that writing about my abuser without any gaslighting—and without anyone treating me as a different person for having been (further) abused—it broke the cycle of fear that kept my anxiety cranked up to eleven all the freaking time. When nothing happened, my body was like, “Oh, stuff can happen without it necessarily being the end of the world.”

Mind. Blown.

For those who aren’t Patrons and are reading this like, “WTF are you on about, Emily?” I apologize. I tend to roll my eyes when people write vaguely about potentially intriguing goings on, but, just…sometimes it’s necessary, OK? Gosh!

Moving right along. It’s Inktober, and somehow the YouTube algorithm figured out that I wanted to watch ALL THE INKTOBER CONTENT. At first I was feeling a little bummed because I wasn’t participating in the Zentangle challenge this year, and then I was just enjoying watching everyone else while feeling literally zero pressure to post videos every day for an entire month. Coming off of CZT training last month, I definitely don’t need to be throwing in ridiculously difficult self-imposed challenges with a move on the horizon.

Speaking of. We didn’t hit the goal for the GoFundMe by October 1, but we got a helluva lot closer than I had anticipated when I set up the campaign. The GFM page remains open, and can still receive donations, but I’m not hyping it anymore. I need to switch my focus to getting things packed and sorted, if only in my mind. At least now that Chapter 26 has come and gone, there’s a little more brain space for organizing my life and my belongings.

I’m rambling at this point when I really need to be doing other stuff. So I’ll sign off for now. Enjoy your Monday like I enjoyed my caramel frappe this morning.

Feeling the Squeeze

Feeling the Squeeze

I’m feeling a little less cranky today. I took an edible last night and slept 11 hours. I don’t know why, but I haven’t been sleeping more than a couple hours a night for about a month now, and sometimes I just have to force rest. There are worse ways to do that than a chocolate peanut butter indica candy bar.

I tend to be a hesitant medicator for many reasons. A big consideration is that edibles are expensive. But I realized I had more on hand than I thought, and I will easily get through. Between my sensitivity to everything and my tolerance break, I am what Dan jokingly calls a “cheap date.”

Mom says they’re putting flooring in soon at Our New Digs, and it’s getting real folks. It could—COULD—be ready by the end of the month! Feeling the Squeeze!

Our Realtor is coming next week to help us figure the details of getting our house listed too. I have help with all of this stuff, but I’d be lying if I said my anxiety isn’t up a notch or two. I feel overwhelmed.

Largely it’s just that a lack of control feels disorienting and scary. Intellectually, I know things will come in steps and I should take them as they come without worrying.

But have you met my amygdala? It’s, uh, seen some stuff.

The day after the walk-through, Zentangle training will start. So I’m already trying to get myself mentally organized for that too. The oncology nurse called me this morning, and I told her I was looking at starting back on chemo around the 20th. Can’t be barfing and bed-ridden while I’m on a Zoom call, right? Honestly don’t know if I should just wait until after I’m moved? I need to be as functional as possible. But also living is a pretty major concern. So….

Of course everything is subject to change. Everything. I need to be thinking about packing and flu shots and cancer all at the same time but I only have the capacity to do like half a thing at a time. So, I guess what I’m saying is, prepare for me to do a lot of thinking-out-loud here on the blog, if and when I update.

Fingers toes and eyes crossed the next hearing from the January 6 Committee happens when I’m free to watch. Because this all about me.

I’m off to get moving quotes and make a list or ten thousand. Please consider sharing our moving/renovation fundraiser on your social media. Or you can make a donation:

Kiss My Astrocytoma

Kiss My Astrocytoma

I had a phone visit with my palliative care PRN this morning. Long story short I’m going to take a short course of prednisone during CZT training to make sure I can do the thing. Because it’s only a week’s worth of generic ‘roids at a low dose, my Rx only costs about $4.

Which brings me to the whole “Medicare can negotiate drug prices” part of the Inflation Reduction Act. I’ve read in a few places that it will benefit seniors specifically, but I’m not sure if disabled people on Medicare are just casually being erased from the headlines again, or if I’m still extra screwed. I’m trying to find an answer.

This is just one reason why I’m still engaged politically when I should be “focusing on getting better.” My shingles vaccines, which I’ve mentioned before, cost $200 EACH, for example, and I’m not allowed to make enough money for our household to survive or they’ll cut my disability income completely and we’ll have even less than not enough.

Maybe if the “safety net” wasn’t an all or nothing proposition?

Bottom line, if anyone out there wants me to shut up about it already (and, yes, people do sometimes say it out loud) they can kiss my astrocytoma.

I’m relieved it’s only $4 for this prescription. The antibiotic ointment my oncologist prescribed a couple of weeks ago cost $35. Not exactly in the budget, and I prefer to put my creativity into Zentangling—not wondering how to afford medicine.

I know these posts aren’t fun for people to read. They are much less fun to write. But no one is going to do it for me. This is as boot-strappy as it gets for the girl who grew up in the most polluted county in Indiana. (In case someone tries to blame my cellphone usage for my brain cancer again instead of spending equal time wondering if our environmental regulations are too lax.)

I know, I know. Blaming me is so much easier.

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