I’m so proud of myself for pooping today, I should buy myself this T-shirt.
The exacerbated nerve pain increased rapidly after the edible wore off yesterday, so I decided not to be a hero. I took a 10mg (what now?) square of the Incredibles strawberry crunch bar around 4 o’clock. I microblogged some notes and will review the Incredibles edible like the Ache Away chews. But later. I don’t feel like doing it right now.
Anyway, that’s why I took 10mg again instead of reverting to my usual 5 mg. Easier to compare notes with like dosing.
That’s my story, and I’m sticking to it.
I see today that the barometric pressure has topped up again and the weather should be stable for a couple of days. Fingers crossed that does the trick, and this present migraine is on its way out. Or I’ll have to shake my fist at a cloud or something.
Edibles are dehydrating, in case you’re not familiar. (If you don’t know how dehydration can complicate IBS-C, congratulations for being regular. I hate you.) So I have to drink extra water while sleeping 6 additional hours a day and doing my best bipedal sloth impression when I’m awake my eyes are open.
What I’m trying to say is that dragging a cup of water to my face while under the influence isn’t easy, but somehow I managed to negotiate an annoyingly troublesome side effect of medical marijuana before things got out of hand. I feel accomplished. Don’t take pooping for granted, people. Listen to your Auntie Em.
Also iced coffee is medicinal but looks like I’m just treating myself. So next time your evil co-worker Carol comes in with that Frappe, you have my permission to assume she’s cranky for reasons and giggle your way to 5 o’clock. I’m full of great life advice today. Bookmark this post. I’ll wait.
My Betty’s Eddies Ache Away Review bottom line: worth it.
Thursday I experienced the kind of migraine that had me losing feeling in my arm, pulling window shades down to protect my eyes, smelling the hickory in bacon two thousand times stronger than the average human, and forgetting common words.
I tried relieving the monster headache part with caffeine and acetaminophen, but it didn’t help enough. So I asked Dan if he’d run to Cloud 9 for me and pick up what I’d picked out online.
I picked out two new-to-me edibles and tried one immediately yesterday. Thought I’d review the first—cherry chews edibles from Betty’s Eddies—today. There was no way I was typing up a coherent review while high yesterday.
And, girl, was I high. This review should be fun.
Rating: ⭐⭐⭐⭐⭐ (5/5)
Product: Betty’s Eddies Ache Away Eddies cherry fruit chews
Taste: Surprisingly delicious. Reminiscent of a Now & Later in tartness and flavor, but much softer to chew. I could taste the weed, but I’ve yet to come across an edible that doesn’t have that distinctive flavor.
Maybe that’s on purpose.
Overall High: 13/10
Now, I am more sensitive to THC than some, what Dan calls a cheap date. So the fact that I took one chew and it melted my face probably boils down to two things: 1.) I hadn’t consumed an edible in a while, and 2.) a more conservative dose for me would be 5 mg.
But the chew was wrapped so cutely like saltwater taffy at 10 mg! Who was I to cut it in half?
Time to High: 30 minutes
I thought the “fast acting” bit on the package was probably overstated marketing baloney before I took one, but half an hour to kick in is faster than most of the other edibles I’ve tried. It usually takes me about 90 minutes to hit peak.
Duration of High: 2 hours
I was unable to stop smiling, repeatedly asking Dan to remind me I’d taken drugs in case I got scared (I was worried about me, d’aww), and generally euphoric for two hours.
Pain Relief: 9/10
I’m still running on reduced pain today. Yes, I know the pain is there, but it’s possible to get comfortable and forget about it for 30 minutes at a time this morning. I like that!
Munchies (Intensity): 4/10
What I ate during this period (a giant bowl of ice cream with strawberries) was exceptionally good, but my generalized desire to eat was shockingly mild.
Couchlock (Intensity): 8/10
Don’t make plans.
Time Dilation (Intensity) 9/10
I checked the clock at 12:42 pm convinced it was probably almost 7:00 pm.
Notes on CBC and Turmeric:
This was my first time trying anything labeled CBC along with the usual THC and CBD. It turns out CBC is something dispensaries and manufacturers are hyping for its anti-inflammatory properties.
Is it actually a thing, though? I don’t know.
From Wikipedia: “Cannabichromene (CBC), also called cannabichrome, cannanbichromene, pentylcannabichromene or cannabinochromene, exhibits anti-inflammatory properties in vitro, which may, theoretically, contribute to cannabis analgesic effects.”
This bag also notes that it contains turmeric. Which I’ve heard good things about, but again not scientific things.
Update 10/30/24: I’ve been taking half a cherry chew before bed for a couple of weeks during a flare of pain, and it is helping me sleep better and wake up in less pain.
The first set of Avise lab results (checking for lupus) is negative with caveats. My 1:640 speckled ANA persists, and there’s a positive result on a C3 complement component, but I don’t know what that means.
On a scale of -5 to +5 (with -5 being “you’re fine” and +5 being “dude, that’s so much lupus”) I am a -.4. just barely to the negative side of the section of the lupus results graph labeled “indeterminate.”
Stares at camera in unamused side eye.
Look, I don’t want to have lupus, but I do want to know how to fix this, and I’m a little worried I’m going down the road to Nowheresville all over again. This diagnosis crap is forever taking.
My worrying about inconclusive results is probably premature. There are outstanding tests from other labs to come back. Plus, the follow-up with the rheumatologist—who knows way more about what this all means than I do. But I know my body historically likes to cause undetectable problems for me.
How much longer is this going to go on? How many more useless tests and procedures and doctors’ visits are in my future?
I know it’s better for me not to imagine worst-case scenarios. I also accept that I’m pretty bad at staying focused on the present when Right Now is a giant, immotile shit show full of chronic pain and fatigue and swollen lymph nodes.
At least this time around I have results and visible symptoms that doctors can’t ignore. I am being taken at my word, too, which I thought was all I wanted. I want relief too though.
If you don’t feel emotions physically, today’s blog therapy session isn’t going to make a lick of sense. However, you might find the Threads quote useful. Don’t leave without checking first.
A few days ago on Substack, my tumor twin Rudy Fischmann wrote about a post he’d seen on Threads. He explained how it kinda blew his mind. And honestly, the longer I’ve let it simmer, the guiltier I feel about getting therapy for free. Who is this therapist? Do they even know cancer patients are out here having life-altering epiphanies?
I’m sure that nugget won’t affect everyone so profoundly, but I’ve been trying for twenty years to be okay with negative emotions and for twenty years feeling like I never quite get it right. To hear that I’m actually a pro at trauma now and need to relearn how to handle and make space for joy and happiness? I mean, of course! But also, holy shit.
Something clicked so easily when I read Rudy’s Substack that I felt like a fool for not getting it earlier.
Following the instruction of some mindfulness practices from Tara Brach, I decided to be more curious about how I do joy the last couple of days. Where do I physically feel joy, for example? Not surprisingly, I couldn’t identify the spot.
Sometimes gravel roads need to be paved. And sometimes overgrown trees need to be cleared. Know what I mean?
I could easily tell you that anger lives in my neck and jaw. That grief resides behind my sternum. That gut-wrenching fear and anxiety (no surprise here) linger in my colon. But joy? No fucking clue where it fit.
I needed to know where joy and happiness were physically felt. The problem was that I was and am broken and can’t just manufacture good feelings whenever I want. Luckily, I wrote a whole thread on social media yesterday about ice cream and unwittingly tripped over some very good feels and nosedived into my happy place.
By the way, I don’t know who needs to hear this, but don’t ever feel ashamed for downing a pint of Talenti gelato in one sitting. You hear me? Three servings my ass.
Anyway, where was I?
So. A few people shared their love of ice cream and happy memories too, and suddenly I was all, “Dude! Joy! There it is!” Turns out I feel joy in the same part of my chest where I feel grief and loss.
Note to self: the love doesn’t have to go anywhere. It can stay put.
But no wonder there wasn’t much room for joy in there. What with the passing of my dad and my dog Boomer in the last few years. (They get space there still, but it could be better organized for sure. Might need to defrag the hard drive.) There’s also grief over brain cancer and the progressive loss of my abilities, which exceedingly also feels like a loss of self. (I have tried rearranging that space. So far all I’ve learned is that I suck at interior design.)
At least I know where joy goes now and that I still feel it. It’ll be hard, but I can work with that.
The distance between “that’s too hard” and “that’s hopeless” is vast. Hard is right there, but kind of awkward to grasp. Hopeless is a big brother palming your head at arms length while you take flailing swings.
I fully intend to get to the rheumatology appointment. But first I want to write about how I can still write, and what a joy that is.
The last time I had a job (conventionally—I don’t mean to imply that chronic illness and disability aren’t vacation-less, salary-less jobs) I was a technical writer for Wolfram. One of the things I did there was draft online help articles for the company’s software, Mathematica.
Well, today I woke up to a thankful comment on my recent, totally out of place help article here on this site. The one where I explain how to pair smart devices on Spectrum 2.4 GHz Wi-Fi. And it was so validating! Not only does it mean I can still communicate helpful things, but I also probably was good at my job back then!
This is a ridiculously big deal to me. I know I can’t do tech writing gainfully these days, but that I can do it at all? That some part of the old me still lurks in here somewhere? It’s important to me, turns out. That comment made my Friday.
But moving on to my much-dreaded doctor’s appointment. The TL;DR for those of you who care (but not that much) is: I gave up a lot of blood, and I go back to rheumatology in a couple of weeks for the results.
The nurse practitioner (NP) recommended I still see infectious disease, but I can only worry about one thing at a time right now. Anyway, the fact that she mentioned infectious disease makes me think my symptoms don’t make any diagnosis seem too obvious.
She did say that my ANA results were a true positive, which is helpful for not having my symptoms dismissed right out of the gate.
My issue all those years ago was my 1:160 ANA ratio (or whatever, I might have the number wrong) was too low to be medically relevant. A certain portion of the healthy population also returns those results. Which, one might argue, is why patient symptom reporting should be taken seriously. But that’s an old rant for a shitty doctor and one I don’t feel like thinking about today.
You’re welcome.
Bottom line assessment of the NP and doctor I saw yesterday: caring, professional, smart. The bar for care was low, thanks to my misgivings about the reasonableness of the Missouri legislature, but I would be fine with treatment from either of these two—even here in Illinois.
So, as I said, they took a lot of blood. Somewhere around 6 or 8 vials. (I’m not sure because I didn’t look. I’m usually fine looking, but I knew there was going to be a lot, and I was overheated. So out of an abundance of caution…)
It’s not the most I’ve ever given up, but by comparison my standard chemo draw was 2 vials during treatment.
If phlebotomy is your kink, partner up with a rheumatologist. Follow me for more relationship advice.
All in all, it wasn’t as horrible as I dreamed it would be. But I still can’t have steroids until they know what’s going on. They’d mask any autoimmune findings. I knew this would be their answer, but I had to try. I’m all kinds of desperate. I’d have cried yesterday if I could make tears.
Next rheumatology appointment July 8. Watch this space.
Thursday is my next doctor’s appointment. The one at the rheumatologist. And let me tell you, I am desperate for someone to figure out what this is. Without a diagnosis, I’m throwing all the proverbial wet noodles at all the walls to see what sticks. So far, each has made its sloppy, sliding descent into a slimy pile on the floor.
After three days of distention and extremely painful gutflation™, my bout with constipation ended in a most undignified manner. I’d try to make you (and me) chuckle with the details, but I don’t have it in me. Literally and figuratively.
It’s hard not to feel sorry for myself. Not because I enjoy being all “woe is me” but because I don’t know how to help myself deal with this illusive mystery illness. Being pitiful is less of a struggle, and sometimes I choose the path of least resistance.
Oncology assures me the brain tumor hasn’t grown and that I don’t seem to have another form of cancer. So I try different things to ease my symptoms—dietary changes, supplements, exercises—and when they inevitably fail, I blame myself for doing something wrong.
It’s bullshit, but it’s internalized bullshit.
“I feel like I’m always doing something wrong,” I say exasperatedly pouting.
“It’s not your fault,” Dan reminds me. And honestly, third-party exoneration of blame is the only thing making me feel the slightest bit better these days. Eating healthier to be healthier is a total sham. Nothing I try helps for long. I’m always back to abject horror in 36 to 48 hours.
I was in this same place mentally before the MRI found the tumor. When I did the rounds with the rheumatologist, the neurologist, and the gastroenterologist. Two out of three for sure didn’t believe me, and I don’t know about the third. Either he believed me or he was so kind his unbelief was undetectable.
It’s dark and lonely here, today. I’m desperate for steroids, though I don’t have any reason to believe they’ll help for more than a few hours either. All I have in this moment—without a diagnosis—is hope, and there isn’t a lot of it.
What I’m about to write will not be for everyone, but me and the people who get it are going to have toilet church this morning. The rest of you are welcome to attend. We dare you to try and understand.
I decided on Monday that it was time to go back on rosuvastatin (generic Crestor). My primary doctor prescribed it last year for my high cholesterol after atorvastatin (generic Lipitor) caused me to hurt like the dickens*.
I’d been eating like a 20 year old, because food was one of those things I couldn’t be too thoughtful about. I frequently used up my brainpower on things like surviving 30-minute rides to harrowing medical procedures and then recovering from the three-day crash that ensued.
Consequently we DoorDashed** a lot. I ordered what I wanted, not what was best for me. Because it was the best I could do at the time.
Not exactly advisable for a forty-something.
Even a healthy one.
So it wasn’t a surprise when I got prescribed cholesterol meds. When the first one caused untenable side effects, my primary physician had me try rosuvastatin.
I’m trying not to make this tale incredibly long for all our sakes, but I went off of it while trying to figure out why my lymph nodes were huge. This week I decided it was time to go back on it because it clearly wasn’t the medicine causing my problems.
However, one of the side effects of rosuvastatin is constipation. (I think we all know where this is going, don’t we?) And in the time I’d been off it, I’d forgotten my doc told me to cut the pills in half because of my drug hypersensitivity. So I took twice my recommended dose, because: my memory. I also recently upped my fiber intake because: diverticulosis.
I repent.
Hi, I have IBS, if you’re new here. I am either constipated or… the extreme opposite of constipated. As I have told anyone who’ll listen to my gastrointestinal woes, I’d rather have diarrhea than be constipated. Though neither extreme is fun, diarrhea is acute. It’s misery for a limited time, followed by almost euphoric relief. When it’s over, clouds part and angels sing.
Constipation, by contrast, is protracted suffering. I hate it. It’s why I never finish post-operative pain meds, sometimes eat Taco Bell medicinally, and frequently shout “Demons, out!” while seated on the toilet.
Well, I think docusate sodium is better for the soul than a communion wafer. And my fiber-undigesting self believes constipation is a little-discussed circle of hell. My Senekot Sin was that I didn’t account for the rosuvastatin, let alone too much rosuvastatin.
God have mercy on my painfully bloated, immotile colon. Forgive it for all the radiating nerve pain it causes, because I sure as shit*** can’t.
* I looked this expression up. Apparently it originated in the 1500s with “dickens” being a substitute for “devil” though present-day me wonders why you couldn’t just say devil. Was it a Voldemort-like situation?
** Use this link for $10 off your first three orders of $15 or more, and I get $20 in credits.
If it’s not lupus, I will genuinely be surprised. Wednesday day I had another CT scan from my neck to my nethers. And there’s a lot of stuff messed up in there, but the thing that has me guessing SLE (lupus) is that there’s a new nodule on my lung.
Now, the CT report says “suspicious” for malignancy, but it was ordered by an oncologist at a cancer center, and I think we’ve already discussed how when you’re a hammer everything’s a nail. I probably dismissed a lot of relevant symptoms myself because “brain tumor” and “chemo.”
But here I am, trying to be a whole-ass episode of House.
Maybe I should be more concerned about cancer again, but I’m desensitized to cancer scares like a “conservative” American is desensitized to gun violence. I’m honestly more concerned someone is going to suggest another biopsy, and I will break down in tears at the thought of paying for it.
By the way, I am not strong anymore, and I don’t have to be or want to be. This has been going on too damn long for me to absorb any of that nonsense. So if you’re thinking it, keep it to yourself. I might go emotionally all asplody without warning.
I have an appointment next week with a nurse practitioner at the rheumatology place, where no doubt I’ll be giving up some blood. Maybe they’ll know something no one else does.
Oh, and I seem to have inherited my Mom’s diverticulosis of the colon. Not a major concern right now, but still: annoying-guh.
My list of symptoms is too long to list in full, but the most interesting and bothersome to me are: symmetrical sun-induced rashes on my elbow bends and shins, giant lymph nodes, heat sensitivity, random allergies to new things, and the ever-present muscle pain and weakness.
Basically my bones and joints are the only things that don’t hurt. So in the world of crappy autoimmune diagnoses, I don’t think arthritis is likely. I guess that’s something.
The CT report also mentioned something about a misshapen bladder. “See,” I said to Dan. “I told you all this inflammation is taking up needed space! No wonder I have to pee every three minutes!”
I’m more than ready for a(nother) diagnosis. While I appreciate the professionals not wanting to mask any of my symptoms with drugs, I’d probably sacrifice a small child if he was waving around a steroid prescription right now. Think of it like reverse ‘roid rage.
It’s easy to access, but hard to find the instructions. Here’s how to pair devices on Spectrum 2.4 GHz WiFi.
Access 2.4 GHz WiFi on the MySpectrum App
To set up smart devices using the 2.4 GHz frequency on the MySpectrum app or website, go to the Internet tab on the Services menu.
Scroll until you see the Explore section.
Tap Setup Smart Devices on 2.4 GHz to enable the 2.4GHz channel on your router.
Why Your Smart Device Won’t Connect to the 5GHz Router Band
Most smart devices don’t contain the wireless radio for a 5GHz connection, but most (newer) WiFi routers default to it. I’m not an expert on why it has to be like that; it just is. If you’re having a hard time connecting, knowing how to get the WiFi to 2.4 the frequency on Spectrum might help.
Most routers can switch to 2.4 GHz easily. The issue, in our case, was figuring out how to get the router to use the 2.4GHz band instead of the 5 GHz band.
Troubleshooting Smart Device Setup on WiFi
With a couple of smart devices we had to go to the owner’s manual for those specific devices to reset the WiFi. A couple items were still looking for the old WiFi. Just a heads up.
Bottom line is I spent way too much time (because Google sucks these days) finding out scores of people had the same problem as me. They were all futilely asking for help in support forums and on reddit, when the answer was right there the whole dang time.
I guess you have to Google the perfect question for actual answers.
Not even the official Spectrum Support forum replies mentioned how easy the fix was, which was mildly infuriating. Most of the responses I read were like “sometimes it happens.”
Anyway, now our cats Izzy and Ollie can eat from their automatic feeder at 4 a.m. while leaving us alone, and our robot vacuum can once again suck it.
You might run into this issue setting up everything from smart ovens and lights to doorbells and garage door openers.
Not everything needs to be on WiFi, but some things do. Especially if you’re disabled. I hope this is helpful for someone, though I don’t honestly know if I can get Google to send people here. So tell your friends!
Rheumatology rant incoming. I didn’t sleep last night, and there are going to be f-bombs in the paragraphs that follow. If you stick around for this post, welcome. If you’re not in the mood, you might want to look up cat videos or something on another site, because I’m having a PTSD bout, and I am pissed. 100%. From concentrate.
First, a refresher. I was referred to a rheumatologist by my oncologist over this whole swollen lymph node thing. I have had a second (after some years) positive, speckled ANA, and a host of unexplained symptoms. I’ve been through three biopsies, had a fuckton of imaging done, and am medically bankrupt AGAIN.
I can’t drive. I can barely walk. And I am in all-over pain every second of every day. I spend my extremely limited muscle energy going to medical appointments, eating, and making sure I get to the toilet before the magic happens. Yet daily I try to maintain my humor and give people the benefit of the doubt.
Not today, though. Today I unleash my last couple of fucks on this blog. Those bitches want OUT.
Because I was a new patient to the referred rheumatologist, two appointments were scheduled at the outset: one for the initial consult and one a couple of weeks later to go over lab results.
You may recall that I wasn’t thrilled about going to Missouri for the appointments, was discouraged that I’d pay out the ass for more unhelpful shoulder shrugging, and also my insurance was changing. Nightmares all the way around.
When no one was available to take me to suburban St. Louis and then the car broke down, I wasn’t exactly upset about having to cancel those two appointments. That much is true. But I didn’t dawdle about letting the office know I couldn’t make it.
I went back to my oncologist for my routine follow-up in May. He asked me why I didn’t go to rheumatology (or infectious disease, but that’s not relevant to this rant). I didn’t have energy to go over the sordid details with him, so I went with an honest summation: I needed a break.
Dr. Oncologist understood but urged me to at least see a rheumatologist because of the ANA test results. I was reluctant because fucking Missouri, man. But I agreed.
I called rheumatology to reschedule, didn’t get an answer, listened to the “you will be charged $50 for cancelling without giving 24-hours notice message” and didn’t leave a smart-ass “even if I’m in the ER?” voicemail. I did, however, leave my name and number.
Crickets from them for over a week.
I called again and got through today, and the woman who scheduled me said “You’ve cancelled twice. One more cancellation and we won’t reschedule.”
I held my tongue. I’m sure she didn’t make the policy, and I don’t swear at messengers.
But I’m going to guess she doesn’t read this blog and ask: What the FUCKING fuck kind of fucking policy is that for any fucking doctor to have?
I’m triggered over this because I’ve never had a positive or medically enlightening experience with a rheumatologist. First, there was the Rheumatologist from Hell who misdiagnosed me with fibromyalgia. Then there was the rheumatologist after him who “didn’t treat fibromyalgia patients.”
And now this fucking guy.
I had brain cancer the whole time rheumatologists 1 and 2 billed me for nothing and did nothing, respectively. I still have it now.
So, yeah, not in a terribly accommodating mood at the moment. And I could explain that I have fucking brain cancer. That I can’t drive. That I was recovering from a surgical biopsy with a host of other miserable symptoms. But I shouldn’t fucking have to. I should be treated like a human being and so should anyone else, cancer or not.
Fuck these assholes and their assumption that everyone cancels because they don’t appreciate a doctor’s time.
There are certainly things I don’t appreciate, but that isn’t fucking one of them.
Am I potentially making a bad situation worse by blogging about this publicly with a unique last name and rare diagnosis? Yes.
