With a week left to go until the General Election, I have to be careful about how much news I consume. Especially after the cowardly decisions of enablers like Bezos and Soon-Shiong, there’s a great deal of anxiety that comes with being disabled and navigating the political hellscape here in the United States.
I do plan to watch VP Harris’s speech at the Ellipse tonight, but I have been very diligently managinging the time I spend pondering the political. I avoid social media sites or meter my time on them. Even the one site I enjoy using most (Bluesky) is abuzz with triggering truths.
Striking that perfect balance where being informed doesn’t mean being exhausted with anger eludes me most days. And for me, anger and anxiety are inextricably linked. At least temporarily. That’s a problem for someone trying to manage her GAD.
Here’s how I see it: Republicans didn’t do shit until it was way too late, and that is rage-inducing.
If I’m frank, their belated arrival to the table of empathetic humanity reads to me like they’re only now moved by the realization too few voters prefer what they’re selling.
And for a bunch of Unfetter-the-Capitalism! types? Well. Doesn’t seem like they understand the marketplace of political jobs, now does it?
Too bad the words ‘conservative’ and ‘Republican’ are soggy after steeping in that basket of deplorability for so long.
Anyway, I saw a link to this Flux article on Substack where a conservative talking head got booted from CNN for being too racist:
“The sheer difficulty in identifying qualified, respectful conservative voices without ties to extremism was astonishing.”
Conservatives of conscience* relinquished a decades-long commitment to bad economic policy (trickle down is the best idea they’ve had) for an openly racist and misogynistic platform that’s now synonymous with the word ‘Republican.’ From my vantage point, the assholes thought they were God’s gift to the American flag.
The spectacle at Madison Square Garden Sunday shocked some, but for plenty of us it would have been more shocking to see Trump’s campaign acknowledge its use of unforgivable rhetoric.
I expect a rebrand of Republican conservatism as some of them realize this is a stink that will live in our collective scent memory for at least four score and seven years hence.
I don’t feel up to the task of assessing whether these blatantly racist tactics are more helpful in the long-term because they’re undeniable or more harmful because they’re shouted unapologetically to the masses. They are vile, regardless. And writing that out loud feels important in the wake of ballot box fires, disenfranchising bullshit from NC’s Freedom Caucus Chair, and whatnot.
Whoever wins, I’m sure that violence is imminent. The kids who didn’t get presents on their sibling’s birthday and had violent meltdowns are all grown up, and they are miltant fascists now. I want to believe we can elect Kamala Harris and deliver sweeping majorities of sincere public servants to Congress, but I am low on hope.
I have to remind myself that Oliver is cute, because he woke me up every 30 minutes starting at 2:38 last night. Lack of sleep makes the pain worse, and the pain is bad today. It’s partly the changing weather and partly not.
I think my anxiety is bubbling up because I got a text reminder of the CT and MRI appointments happening next month. Although I hadn’t been worried about them (and I count that fact a win because scanxiety is real) it’s a natural reaction for me to get an appointment reminder and then watch my body physically flip the fuck out.
So this morning I am reminding myself that there is room for this anxiety and fear. That it’s quite normal to be scared. And what’s actually abnormal is to suppress those feelings. Which, let’s be honest, is how I’ve been dealing with things for the past decade.
I knew it was bad when I was happy to have a brain tumor diagnosis, but I didn’t understand then how I got that way or if my aversion could be reversed.
I’ve since learned the resistance to that reality is what creates the added physical tension in my muscles. I’m fighting myself when I suppress feelings I don’t want to have, and it’s generating extra pain I don’t need.
One thing that brings me back to reality is when people care for me. And I don’t mean grand gestures or anything. For example Dan put some black raspberry butter on an English muffin for me for breakfast this morning. That helped.
As I was eating breakfast, I began thinking about how Mom bought the jar of jam for me at that shop in Springfield last Christmas and how Dan made me a toasty warm breakfast with a mocha and two mandarins to go with the English muffins.
And as I thought about those things, my anxiety waned. It can be really hard to think comforting thoughts in the middle of an anxiety spiral, but it always helps. So I’m trying to focus on the good things right in front of me.
And when that doesn’t work I try whipping out a guided meditation from Tara Brach or listening to a chapter of Unwinding Anxiety.
I randomly caught a glimpse of the label for the levothyroxine bottle my old primary doctor refilled, and in the field for the instructions on taking the medicine, it says “appointments required for refill.”
Not today, Satan. I’m done with you. Stop trying to piss me off.
Let’s try thinking happy thoughts instead.
Today it’s supposed to be cold and rainy, so I’m gonna blog about stuff that feels like sunshine and rainbows instead of the actual weather. Here’s a bunch of random happy-ish stuff you might like to know and I want to ruminate over instead of cancer stuff:
Site Stats Go Boom!
If anything good came out of my fundamalist upbringing, it’s that whole “ye have not because ye ask not” thing.
I have no way of tracking if or who shared links from this round-up post a few days ago, but based on site reports, I think more than a few of you did. I’m really grateful for the help.
My website traffic saw a boost this weekend. And then yesterday (Monday of all days) I hit an all-time record number of pageviews.
I usually see a spike in traffic on the weekend because of my cannabutter and weed posts, and then tank on Monday. But this is sustained, and I’m excited!
As you may or may not know, if this website pays for itself (or—even better—also covers a medical bill or two) my life will be less stressful.
It Was Agatha All Along
I got a purple upright walker a couple days ago that we have named Agatha, and it’s helping me walk around with better posture.
I’ll do a full review post on it in the future, but bottom line for now: I’m so grateful to have this stinking thing.
I Can Help People!
Dan has a new primary physician, too, because of an insurance change, and I got to research, switch providers, and schedule an appointment for him. I’m geeked that I can actually do things for other people. I feel like I’m always asking for stuff, and that’s depressing. Go me!
Ramping Happy Things Up
There’s a new accessibility ramp in the garage that I haven’t used yet but is mostly complete. Here’s a picture of it in progress:
Anything that makes going to a doctor’s appointment less traumatic for me is very much appreciated.
I voted!
I voted, and I don’t think there’s any question about who for. (Not a single Republican. Again.) It’s empowering to have a choice, though I could dream up a better choice than Trump easily.
Also? I wanted to be a part of this historical election and would have paid an illegal poll tax to vote. Seeing a woman as President is on my bucket list.
Pecan Snickers
Imagine if a Snickers and a Demet’s turtle had a love child. Yum. Dan came home with a couple of Pecan Snickers for me the other day, and I am hooked.
Mars, Incorporated if you’re listening: I would like to be an influencer. You can compensate me with free candy bars. Thank you.
Lemon Sugar Cookie Edible Review
The dispensary had a sale, and I bought a lot of edibles for reviewing on the blog. I wrote a review for some lemon sugar cookies on Sunday if you’re interested. Not surprisingly this kind of content gets a lot of traffic and I get to be high to boot, so I guess what I’m saying is expect more.
Anyway, tell me something good that happened to you recently.
I sent Dan on an expedition to hunt medical marijuana edibles this morning after waking up extremely achy. I picked out several new-to-me products, including some sample sizes. Here’s how this cancer and anxiety patient experienced the Enliven Lemon Sugar Cookie.
Taste: Freaking delicious. The budtender said these were good and that we’d be back. No lie detected.
These cookies are the first edible I’ve tried that taste nothing like weed to me. There was a pleasant lemon aroma and the faintest smell of weed when I opened the package, but no lingering aftertaste at all.
This is just a one-cookie sample, but they sell multiples too. I wanted to make sure that I like them first, being on a budget and all. Now that I know they are so good, though, I might be too tempted to eat more than one at a time.
Overall High: 9/10
At one point I turned and said to Dan, “Man, I’m fucked up.” Like the Ache Away Eddies, the high was intensely pleasant. There were times I felt darn near abled and wanted to dance along with Moana and her grandmother. I was always cognizant of my reality, however.
Time to High: 30 minutes
Again, I tried this cookie on an empty stomach, how I usually take edibles. It’s easier to compare if I don’t do these reviews with too many variables.
Duration of High: 3 hours
I find that most edibles labeled “relaxed” or “calm” make me sleepy. This was no exception. Which is kind of why I picked it. I wanted something cozy to help me nap after crummy sleep last night.
Pain Relief: 5/10
Worth taking, but the pain wasn’t relieved so much as I felt empowered to feel other things for a little while. I was like, “Gee, this bed is really comfy! Who knew?”
Munchies (Intensity): 7/10
I had a cheeseburger for lunch, and it was so good even the crunch of the pickles was mind-blowing. Later I couldn’t get the idea of eating mozzarella sticks out of my head.
This is a potentially good one for when chemo and other treatments make nausea intense.
Couchlock (Intensity): 7/10
I call it bedlock for potentially obvious reasons.
Time Dilation (Intensity) 5/10
I had moments for sure, but it was tolerable and my brain was aware that I was experiencing time differently.
Additional Notes:
I also have the Enliven Snickerdoodle Cookie that I look forward to trying.
“But, Emily, this is just a link round-up of your own stuff.”
Yes it is. Because I need help getting these articles and essays out there to have a shot at getting my online endeavors to actually help pay my unending medical bills and get the money I need for food and mobility aids and rent.
You get the idea.
My GoFundMe is helpful, but promoting it alone isn’t enough to keep the lights on. When my stuff is seen by more eyeballs, it helps. Not just in the present but in the future too.
Emily Suess on Pinterest
Although any post image can be shared on Pinterest, these posts have specifically designed social media graphics you might like. With direct links to pins, all you have to do is click SAVE. I wish I had energy to do more graphics in Canva. It’s on my to-do list, but here a few options for right now. (You can also follow my pins here.)
I have quite a few posts about Zentangles and Zentangle patterns. These are some of the most popular, so you might want to share one. Please consider joining Emily Suess Zentangles on Facebook.
I’ve been blogging about this stuff since forever, and unless you’re searching for a specific thing, these popular posts might get missed. Please share with someone if you think there’s any chance something here is helpful.
Medical Marijuana Edibles Recipes & Reviews by Emily Suess
In Illinois, medical marijuana was legalized for specific conditions over a decade ago. I tried edibles and found them helpful even before doctors found the brain tumor.
I have been following politics all my voting life, and I have had quite a bit to say about it over the years. Disability and medical bankruptcy have turned an interest in how we take care of each other into a life-saving necessity.
I frequently write about the same topics. These are tags and categories I blog about repeatedly that might be interesting to someone you know. Each archive page includes multiple blog entries on the same topic.
Unwinding Anxiety in practice is something I do when the opportunity presents itself. There’s no cramming for this life test. I resolved the anger and anxious fear triggered by my primary doctor’s recent scolding—and in record time, because of this book.
I have a new primary doctor. I realized I had a choice, and I chose not to accept the added burden of dealing with a doctor who thought I deserved an added burden.
Like usual, I wondered for too long whether I was the problem, but in examining my other doctor-patient relationships, it became obvious that no one else was sending me paternalistic messages in my patient portal.
I had to keep reminding myself, I’m not her enemy; I’m job security. But once that truth took hold…
Once I internalized the truth instead of the fear, I was able to place a phone call to a patient advocate and get things sorted out right away.
Now I have a doctor that is physically closer, afiliated with the same hospital system as my oncologist and uses the same patient portal, AND offers me appointment waitlist options by text.
Honestly, this would be better for me even if my old primary doctor was perfect.
I spent a fair amount of time writing and revising a reply to Dr Scold that I’ve opted not to send. In my experience this kind of self-defense usually carries with it the potential for another interaction. Not really looking for that, to be honest. I prefer to set firmer boundaries.
So I’m publishing my reply here as closure and therapy without including the doctor’s real name.
Might as well get a couple of ad impressions for my trouble, right?
Also—and maybe this is pessimistic—but I think I have a better chance of improving experiences if I post a review for patients than if I explain myself to Dr. Scold. I revised my initially glowing review of her online to one that also reflects my newfound discovery.
I feel good about putting this behind me and moving past the anxiety of it all. I feel good for being able to find my way out of this fear of abandonment.
Because that’s how my lizard brain interprets these things post-2014. That unless I crack the code and conform to unspoken rules or expectations, I won’t be believed by the only people who can help.
Man, fuck that noise.
The reply:
I am not new to disability, but I am new to this level of disability.
I don’t know what information didn’t get communicated on your side, but I imagine it was significant after discovering how much was missing on my side.
Your message was the first time any of the handful of people I’d communicated with at AMG had relayed any information regarding 3 to 6 month office visits for levothyroxine. In addition to being on this medication for over 25 years without such requirements, I have limits. Ignoring them comes with physical and mental consequences.
The difference between the thyroid labs ordered by you versus those ordered by my oncologist were not communicated until your paternalistic scolding.
A couple of months ago, I waited by my phone for a telehealth appointment that never happened. I considered it a forgivable oversight then but wonder now how frequently things are missed or lost in translation and then blamed on the patient.
No one ever offered even an unexplained “no” to my refill requests. Retrospectively, it feels like I was expected to intuit what everyone else was thinking.
It was insulting to have my life reduced to a “situation.” I didn’t need favors or “leniency.” I needed feasible solutions to specific needs.
Wondering where I stand with a physician requires energy I simply don’t possess. My medical anxiety, which I work to minimize, becomes overwhelming when I have to guess what other people need.
I wish you well. I will not be returning to your office for care.
In some doctor’s offices there’s a false binary where you’re either a good patient or a bad patient. But I’m neither. I’m a human being with faults and feelings and fragile health, and classifying me as one of these two kinds of patients is going to result in low-quality care every time.
It’s medical fundamentalism, if you will, and it’s pretty common.
Hi, if this is your first time here, I’m Emily, and my anxiety likes to overthink everything, including the latest exchange I had with my primary doctor.
I’m trying to be easier on myself these days, but it’s a struggle when I’m constantly beating myself up for not seeing this shit coming.
For example: a while back my levothyroxine dosage was adjusted based on lab results alone.
As the one swallowing these pills, I typically prefer being asked how I’m doing at my current dose along with any doctor’s recommendation for changes. But medical fundamentalism dictates that if my labs return a specific result—no matter how small or insignificant the change—my dosage must be adjusted.
For the medical fundamentalist, this means no patient input required. Further discussion pursued by the patient equals bad patient. I instantly and instinctively understood this after my fibromyalgia misdiagnosis all those years ago and stopped complying with the bullshit…until I didn’t.
That’s what happened a few months ago. My Synthroid (levothyroxine) prescription for acquired hypothyroidism was changed to 88 micrograms from 100 micrograms by my primary doctor’s NP—without my input.
I should have probably raised a stink then, but I had more pressing health concerns and let it go.
At my next appointment, my primary physician said “I probably wouldn’t have done that, but it’s fine. Technically she’s right.”
They were showing me who they were, but I ignored it. Not my fault, but also kinda my fault.
At that point my lizard brain was all “Danger, Will Robinson!” and instead of acknowledging the false binary and dealing with it, I convinced myself the distress I felt was all about the increased disability and biopsies and more potential cancer—that it had fuckall to do with my primary care physician dismissing me. I haven’t decided if this is a good excuse yet, but: I was trying to process too many something elses. I put this something else aside.
Side note: some days I really miss the ability to multitask.
So, yeah. It’s my nature to want to be right, which is why my knee-jerk reaction was to think of all the ways the office had dropped the ball. (They are numerous, though when taken individually most seemed insignificant.) But when my lizard brain had a chance to stop being reactive, I found what matters more lying there in the rubble: I expect doctors and nurses to recognize my humanity and my agency.
My decision to find a new primary care physician might have been reactive initially.
However.
After careful consideration, I still plan to leave fundamentalism behind and channel my inner Indigo Girl. Because the less I seek my source for some definitive, the closer I am to fine.
A few hours ago, I was raging over a message my primary doctor sent me through the patient portal saying she had been “lenient” with me about my “situation” and refilled my thyroid medication as requested but that I was putting her professionally at risk because most patients are seen every 3-6 months.
Guess that whole “I’m here to serve you” spiel I got from her on the first visit was just bullshit? I don’t know. I thought I was good at seeing this stuff coming. Maybe the anxiety work lowered my defenses.
Maybe she’s just a jerk.
I am proud I didn’t reply “See you next Tuesday” but the thought did occur to me. I don’t pretend to be an angel.
Instead, I thanked her and replied curtly about my debilitating “situation.”
I’ve learned doctors and bosses don’t like curtness, but I’m pretty sure they’d like what I am really thinking even less. So I self-edit.
But the telehealth solution posited in her message isn’t much of a solution to me. Last time I waited to be contacted for one scheduled with the NP, it never happened. I waited by the phone and ultimately never received any care at all.
I feel like there is a problem, but it’s not me.
Now I’m going to be hunting for a new primary doctor and looking into in-home care in case this bedridden thing isn’t as temporary as I keep hoping. Hooray!
If I were to breakdown the drama in the most generous way possible, I would assume my primary was under the impression I possessed knowledge I didn’t.
Like maybe talking to four different people, not including the pharmacist, was a game of telephone waiting to happen and she thought I already knew the oncologist’s labs were different than what she ordered.
Or maybe she doesn’t know that every time a patient calls the office they’re greeted by a robot telling them to have the pharmacy contact them about refills and use the patient portal for communication.
Nevermind that this is a med I’ve been on for 25 years, and it’s not a controlled substance. I’m probably trying to get away with… something?
So let’s not ask questions about why I am not making my appointments. Let’s assume I am trying to get you, primary doctor, to do something you have previously explained is a bad idea or one that causes you some concern. Let’s describe you as “lenient” like you are a judge doling out a sentence and I have no idea what my body’s limits are.
Like I said: miscommunication is my most generous take. And even that is not enough to get me to stick it out with her. If communication at the doctor’s office is that disjointed, it won’t be anything but extra work for me going forward.
It’s Inktober, y’all! I’m not directly participating this year, but I’m watching YouTube videos, as usual, from other Certified Zentangle Teachers while they complete the Inktober Zentangle prompts for 2024 as compiled by Stephanie Jennifer, a CZT based in Singapore.
I have little control over my right hand and it is extremely weak, so holding a pen or pencil is not something that brings me comfort and calm right now. (I can just barely wield a fork to eat, and I prefer to stuff my face with handheld food.)
I still have hope for one day, though.
I believe this is related to the brain tumor, I don’t think it’s caused by the tumor. My ability fluctuates, indicating the problem is with an irritable nerve that likes to stop innervating muscles with overuse. (Think about stuff downline occasionally falling asleep below the neck and how neck and shoulder tension from anxiety probably exacerbate that.)
Mom usually helps me fill out forms, and I do my best to keep my signature identifiable for the bank and voter registration and whatnot, but it ain’t what it used to be.
My left arm burns with pain. I’ve dealt with some form of this issue since the craniotomy in 2017. There’s a pinched nerve in my neck that brings with it delightfully disabling pain.
After brain surgery the neurosurgeon was like “Damn, those were some neck muscles.”
They haven’t relaxed once in probably 10 years. Would PT have helped? Maybe, but I was on chemo and radiation and throwing up almost immediately following the biopsy. Physical therapy was recommended then, but it never happened. I have limits.
I will likely have to relearn to draw if I ever figure out a way to look down at my hand again without shit spinning, but maybe I won’t mind videoing that process. I think I can be okay with jittery lines if I can just hold a Micron again.
For now though, I have to be careful and use my arms less. Or else I risk extreme pain on top of everything else.
Hmm. Maybe I should sling my affected side? To protect it from sudden, thoughtless movements? I wish I could just afford to try shit until I find something that helps, but alas!
At any rate, I was thinking of doing a blog post on Zentangle bookmarks, but I’m putting that off. There’s plenty going on with Inktober. I need a rest, and I want to enjoy what I can without making extra work for myself.
PS: There’s a new WYGB chapter coming to Substack today.
