I’m thinking a lot of things about the shooting at the Trump rally in Pennsylvania, and most of them aren’t fit to be published.
When the Supreme Court ruled earlier this month on presidential immunity, I said out loud to two people that someone was probably going to try to shoot him, seeing how willing McConnell, SCOTUS, and Republicans have been to slather him in Country Crock before he wriggles through the cracks.
I don’t say that to toot my own horn because I’m so smart, but I say it to illustrate how predictable all of this is.
It’s Saturday night that I’m writing this, by the way, and I don’t have all the details. I’m avoiding the speculative “reporting.”
Oh. I’m sure the Sunday shows will be a vomitous mess of worthless blame assignment in the morning too. Remind me to crawl under a rock when I wake up tomorrow.
I saw the Dilbert guy say this was all Biden’s doing. Absolutely disgusting. His lies can go in the trash next to all the electeds’ maggot-riddled thoughts and prayers.
I’m at the bottom of the snark barrel. There’s nothing down here but despair.
Someone is going to say we are better than this, but don’t you believe it. We are exactly this.
I’ve only taken two 1/2 pills so far, but I feel different inside. Couldn’t say for sure if it’s the hope or the hydroxychloroquine, but damn. I want food. I feel connected to my memories. I don’t feel like I’m as packed-too-painfully tight in my own skin.
That’s the thing about chronic pain. Just the slightest bit of relief changes everything while your body struggles to understand what’s going on.
Sometimes when the pain inexplicably recedes, panic takes over and the anxiety cranks up. I wonder if I’m truly feeling better or just malfunctioning more.
It’s funny to ponder those things after the fact; I feel silly for worrying when I should be revelling. It’s terrifying to speculate in the moment though. When I’m all, “But I’m not ready to die yet.”
I don’t like my pain, but I’ve gotten used to it. And sometimes it’s difficult to leave abusers. No one needs to understand that for it to be true, least of all the abused.
When brain cancer feels less life-threatening than pain reduction, though, that’s how I know I’m fucked up.
Dan sat at the foot of the bed this morning, holding a big mug of coffee in his left hand and patting my shin with his right. And when he got up and walked to the kitchen, I thought: Wait just a goddamn minute. There was no extra jolt of pain when he touched me.
Who’s life is this? Who’s body did I wake up with by mistake? Don’t tell her I have it. Please.
The meds aren’t supposed to work overnight like that, so it’s probably just good weed, good sleep, and the revelation things don’t have to get worse.
I have to channel all this hope somewhere, so I’ve been reading and contemplating lupus the last 36 hours or so since my appointment with the rheumatologist.
I have been muddling over the best way to characterize what’s going on with me healthwise. I want to talk about it in the easiest way without mischaracterizing the details for new visitors.
So here’s the deal. I’m going to call this collection of progressively horrible symptoms I’ve been experiencing for the last couple of years lupus with an asterisk.
The asterisk meaning the diagnosis isn’t official. It’s just that my particular brand of autoimmune dysfunction aligns best with that diagnosis for now, and I don’t want to mess with the caveats every time I blog.
I’ll just link back to this page, and let people read what they find useful. Of course I understand this Dx could change at anytime, but someone who lands here through a search, for example, might benefit from some context.
Drug-induced Lupus
But for Temodar, I don’t think I’d be contemplating a lupus diagnosis at all. I believe that chemotherapy further freaked out my immune system when the cancer already had it confused.
Just based on anecdotal family history, I think I was genetically predisposed to autoimmune shenanigans.
There’s such a thing as drug-induced lupus, and that makes the most sense to me. I don’t have any scientific proof of that claim; it’s just my best working theory. I’m not a medical professional, but I’m a professional chronic illness patient from way back.
In 2017, I had an ER-level reaction to the increased dose of Temodar that was supposed to kick off adjuvant chemotherapy, and a surprise reaction to sulfa antibiotics shortly thereafter. It just feels like lupus is very likely, you dig?
“Whenever possible, people with lupus should avoid taking sulfa-containing antibiotics (or sulfonamides) as these drugs can exacerbate lupus symptoms in some individuals. People with lupus are also more likely to be allergic to sulfonamides compared to the general population.”
In addition to the sulfa reaction, I’ve had various reactions to weird things that feel like allergies. Sneezing and the usual allergic malaise have come my way after being in contact with previously unremarkable stuff.
“Allergic disorders commonly occur in patients with systemic lupus erythematosus (SLE) and allergies to some drugs may occasionally be related to disease flares.”
Man, everything I eat makes me hurt now. I’ve been blogging about constipation and diarrhea for a while, too. But also there’s bloating, swelling, and constant abdominal pain I don’t detail much because I don’t know what to say. I’m miserable and too exhausted by it to elaborate.
Turns out gut stuff is not uncommon for people with lupus:
“A person living with lupus may develop intestinal issues, such as IBS. IBS can cause similar symptoms to gastroenteritis, such as abdominal pain and diarrhea.”
With the symptoms of cancer and the side effects of associated treatment, it’s hard to know what’s what. Here are some other things I experience that may or may not be lupus symptoms:
So that’s why I think I have lupus and the rheumatologist is starting me on Plaquenil (hydroxychloroquine).
When I try to make sense of why I feel so terrible at a potentially early stage of the autoimmune disease, I rationalize that my baseline was utter shit to begin with. Brain tumors are problematic like that. With that POV, lupus makes a fair bit of sense.
Still, there are symptoms I don’t have—like fever, joint inflammation, and the characteristic butterfly rash—that would help make this diagnosis easier.
Anyway, I don’t care if randos think I’m a hypochondriac, but I want people looking here for potential answers to their own medical mysteries to have a factual understanding of mine.
Yesterday’s appointment with the rheumatologist went so much better than I was expecting.
“Did you see your lab results?” the NP asked as a way of determining just how much she needed to explain.
“I looked at them,” I said deflated. “From what I understand, they are inconclusive.”
“Yes and no.” She explained my results as essentially this: they can’t confirm a diagnosis of lupus, but they also can’t rule it out.
The NP says “It’s always lupus” btw.
HOWEVER, there is clearly some funky autoimmune stuff happening, and she and the doctor wondered how I felt about trying Plaquenil (hydroxychloroquine).
My mood changed immediately. I turned to Dan and said, “Hey! Maybe I can cure some COVID while I’m at it.” And that started a whole bit about Ivermectin and injecting bleach.
She remained very professional as we did our shtick, coping with humor. While acknowledging how absurd those treatments were, she confirmed what we already knew: 45* had no business distributing medical advice.
But this is not about convicted felons or pandemics.
This is about hope.
I didn’t get the steroids I thought I wanted, but I have something to try, y’all! I’m ecstatic.
And instead of hedging about whether this drug will work (it’s a slow burn and might take months to help if it’s going to) and protecting myself with pessimism, I’m going to shoot that hope shit straight into my veins.
I need this. I need to live in the joy of this present moment instead of wondering about the future. (See? Meditation is working.)
Who cares if the med doesn’t work? What I need most now is the possibility that I can feel better. There are things to try and doctors to help me try them.
As my spoonie friend Dawn taught me years ago: carpe diem, bitches. In this moment, I feel better. I’m going to notice it.
When the doctor came in and asked how I felt about giving Plaquenil a try, I think I even used the word “excited.” Not only am I optimistic right now, but no one mentioned peeing in a cup, and I don’t go back to rheumatology until the end of October.
Yee-freaking-haw!
Somebody get Howard Dean in here to help me celebrate.
So, as the rheumatologist explained it, lupus is a complicated diagnosis and the criteria were redetermined in the last five years or so. Swollen lymph nodes are no longer considered.
The way autoimmune things progress over time, though, I may one day qualify for it—or another diagnosis.
In the meantime, hydroxychloroquine could help me feel better and slow the progression of whatever this is.
I spent an hour and a half waiting to see my oncologist yesterday and left without seeing him. I couldn’t do it. Couldn’t sit in the wheelchair another minute longer. Couldn’t handle the stifling exam room. (I can’t bear not to have air moving around me, or I feel like I’m suffocating, so I think I’m going to buy one of these. Because every exam room has my body contemplating a panic attack.)
There was the thirty minutes to get there yesterday, and the thirty minutes home, too. And I just couldn’t be upright anymore. So Dan told the nurse we were out.
The waiting room was busy when we got there, so I knew it wasn’t going to be a fun time. I don’t blame the doctors or staff; it’s not like they can tell some people to not have cancer.
I think we’d all volunteer as tribute, though. So not sure what that would mean for their jobs.
Ha.
I spent the rest of yesterday in bed, and today’s shaping up to be much more of the same. Tomorrow I have a rheumatology appointment, and thinking about it makes me want to weep.
Sure there’s the financial cost of it all, but the physical toll. [Screams into void.] I want to feel better, and I want to stop going to all these appointments. I’d previously viewed those two things as entirely at odds with each other, but maybe they’re the same.
I was so overheated by yesterday morning’s excursion that I couldn’t sleep without a fan blowing on me, the thermostat set to 70 °F, and an ice pack breaking the underboob heat feedback loop. And even with all of that ridiculousness, I still didn’t sleep very well.
As of this writing, I’m going to go to the rheumatologist appointment tomorrow because this is the place that won’t let me make more appointments if I cancel again. I hate them. I also don’t have any reason to believe they have an answer for me.
Pretty sure they’re going to ask me to pee in a cup again. Which is problematic for a couple of reasons. First, I intentionally dehydrate myself before trips. Second, it’s just a physical impossibility right now.
Ope. Abrupt exit. Weed’s working, and I want to notice what not hurting is like. Bye, losers.
Cannabis Type: Indica? Maybe? I looked up indica edibles when browsing the Cloud9 website, but it’s not specified on the box or the product listing now that I’m trying to verify my assumptions.
Price: $20
Dose: 10 mg ea. Piece / 100 mg total
THC: 10 mg
Taste: It’s just okay. I think white chocolate is pretty boring. It’s sweet without much texture or flavor. The crispy rice seems sparse.
Certainly not gross but also not what I’d call good. Maybe that’s ideal? If I like it too much, I might struggle to pace myself.
Overall High: 7/10
The high was noticeable and good, but one-dimensional feeling because I had the Ache Away Eddies for comparison.
Time to High: 70 minutes
That was on an empty stomach, how I usually take edibles. Unless the pain is dire, I like to eat after I’ve had an edible. Food tastes better. If you know, you know.
Duration of High: 3 hours 20 minutes
I was mostly just sleepy, but also acutely aware that I didn’t feel as miserable. Always a win.
Pain Relief: 8/10
Definitely worth taking. I’m not sure if the back-to-back days of having edibles impacted the pain relief or not. It seemed what I might expect in pain relief from a THC-only indica strain. Reliable relief that I wish was just a little better.
Munchies (Intensity): 6/10
I was on the lookout for food in general, but I was hungry when the show started. No specific food cravings.
Couchlock (Intensity): 5/10
I wasn’t what you’d call motivated, Bob.
Time Dilation (Intensity) 8/10
I had to look at the clock frequently or lose myself to time.
Notes on Packaging:
It looks pretty and is designed to be childproof, but in this disabled household it’s not convenient. I had a hard time gripping the tray. Also i didn’t want to ruin the box, for reasons I cannot explain but others can probably relate to.
In fifth grade I had this teacher I absolutely could not respect, Mr. Nelson. Though I probably missed out on a lot of interpersonal nuance at the age of 11, the big issue for me then was his wishy-washy demeanor.
He played favorites, and I didn’t know what a double standard was yet. I merely thought it was entirely unfair that he would treat the girls as inferior. That was enough for me to dislike Mr. Nelson.
I didn’t like him one bit, and that distaste wouldn’t be contained. When my smart mouth got me in trouble, Mr. Nelson sent the school principal to jerk a figurative knot in my tail one day at recess.
I was not the kind of kid who got in trouble, so I was more offended than remorseful. I doubled down on the disrespect, but I kept it on the inside. Mostly.
I refined my stoic’s skills over the years, but I will still tell all when being “civil” is more dangerous or detrimental than sticking up for myself.
If you’ve read Who You Gonna Believe* or my blog over the years, you probably know I’m better at articulating my beefs these days. It’s not that I can’t handle people wanting different things than I do, it’s that I refuse to play with people pretending they want the same thing I do.
I’ll give you a couple fer instances.
Rodney could have avoided lots of humiliation if he’d said from day one “I want to cheat” instead of “monogamy is my favorite.” Then the onus would have been on me to walk away. There’d be no written record of anything.
It’s a sure way (though not the only way) to elicit disrespect from me, the cowardice of deception. When I fought Lincoln Financial Group for promising insurance and then doing everything they could to not pay, for example, it really pissed me off.
My thinking was, hey, I didn’t force LFG to sell me private disability insurance. I didn’t force them to market it to me, a woman who might one day dare to use it.
Maybe they should have been a Fortune 500 florist or something. Then if I tried to get my insurance payout, they could point, laugh, call me absurd, and send me GIFs of clueless John Travolta.
I was going somewhere with all this.
Oh, yeah. I don’t respect the Supreme Court Justices who decided to kick the immunity decision back to the lower court in D.C.
Just say you’re sweet on fascism and let us plan accordingly. Fucking cowards.
