Things are okay this morning. The literal and figurative clouds have moved out, and I am not overly anxious about tomorrow morning’s lung function test, thanks in part to the Dirty Dr Pepper.
Several people have donated to my latest GoFundMe effort, and Beth told me about Nectar adjustable beds. Their regular prices aren’t insulting. And when they’re on sale, they are way more affordable than the Sleep Numbers. (I still don’t have the money now, but getting what I need feels possible. Mom said she’d help.)
I can’t express how much better I feel when things are possible.
I could turn this into a lecture on accessibility, but I’m trying to remind myself that assholes can’t grow ears. Anyone who’s capable of understanding will get it whether I rant about it or not, right?
In the meantime, I’m opting for a bed rail*. It’s very affordable, covered by insurance, and will hopefully help me pull myself up by my weakened right arm when my left arm is floppier than a 5.25″ disk and I need to pee.
Need more good news? I pooped today. Yeehaw!
Another good thing is that I am sipping on a Dirty Dr. Pepper from Sonic. Dan tried the last one I got and winced, saying it tastes like suntan lotion. I admit it was heavy on the coconut and lime, but that’s the thrill of getting a mixed drink for me. You never get the same drink twice. Today’s is exceptionally delicious, higher Dr. Pepper ratio than last time.
Dan can have his jalapeno-laced burrito and I can have my small Dirty Dr. Pepper and the caffeine can spur my GI tract into action and we can both be satisfied and happy.
I still have the cold sore, and my tongue and the inside of my cheeks are inflamed, but that’s pretty minor stuff. I’m confident it will get better. I usually hate a trite expression, but since I’m not in the middle of one of my IBS-C flares I’m going to use one anyway: This too shall pass.
Ope. More clouds. I’m out before things get too hurty.
This post contains affiliate links.
*Update: It’s here but the one the insurance company covers doesn’t fit. Sigh.
I’m taking a break from social media. I’d already cut way back on Facebook and deleted my Twitter account, but I mean from all of it. I need to take care of myself and constantly worrying on behalf of other people—from strangers to close friends—isn’t helping me do that.
I don’t mean I’ve stopped caring about actual things, but I’ve stopped making it easy for my brain to imagine horrible scenarios I have no way of verifying.
So if you’re seeing less of me around the internet, that’s why.
It’s unfortunate I’m losing my damn mind while I need to fundraise, but whatever. Not the first time that’s happened and likely not the last. There’s probably some connection there, but it doesn’t serve me to dwell on it.
On Saturday I think it was, I listened to that Tara Brach podcast episode on Embodiment like six times. I’m finding a lot of stuff in there to ponder, helpful stuff. I think I’m chipping away at my anxiety. My IBS pain is going down too. I feel less like an overinflated kickball.
While contemplating my past traumas (two early psychological abuses) it occurred to me that the reason trying to heal from them now wasn’t working is that I didn’t need to. I had already done the work. Digging in again because I thought I needed to #MeToo my way out of a soggy paper bag was overkill. I was retraumatizing myself for no real reason.
See, I developed coping habits escaping those relationships that became habitualized. And that’s the actual problem.
For instance, while imagining a plan of action for dumping the first “I’ll kill myself if you leave me” guy (I was young and didn’t know) I would repeatedly have conversations in my head where I’d imagine how to escape the controlling and manipulation without being the impetus to someone’s suicide.
That coping mechanism worked back then, helping me build up the courage to end what was hurting me and envision a different kind of future. But now that overactive imagination is just a habit fueling my anxiety, not a creative way to choose a solution. It has me trapped in my own head.
I want to be clear that I’m not making excuses for any abusers. They are still assholes. But what I realize now, finally, is that there is no creative way to make an asshole listen—assholes can’t grow ears.
Anyway, this anxious imagining eventually translated to me obsessing about how best to describe my physical symptoms at doctors’ appointments. But by rehearsing my conversations in advance, I implicitly accepted a burden that wasn’t mine. I was losing a lot of sleep, and I mean that in the most literal way possible.
It takes energy to imagine. No wonder I’m exhausted.
Cold sores have long been the bane of my existence, but I really don’t need them right now. Which is probably why the universe sent me one in the corner of my mouth and one in my nose this time.
[Protracted swearing ensues.]
I am mad about it too. It’s unfair. I have quite enough to deal with. Also Abreva packaging makes me want to scream. And these cold sores always come with an extra dose of fatigue.
I almost didn’t make it to the bathroom in time this morning. The added exhaustion coupled with the nightly routine of my left arm falling asleep and flopping around without sensation on waking meant I couldn’t push myself up out of the bed to pee.
I’m going to divulge a little secret: I don’t need this shit and it’s making me cranky.
I looked into adjustable beds, but insurance only covers the hospital ones and nothing sounds less comfortable or more depressing. Sleep Number makes an adjustable bed, but the full size version of that bitch is $6,000.
They say life is what happens when you’re busy making other plans. I say life is what happens when you’re trying desperately not to make medical appointments.
Remember how I wanted the month of August off? Well, I have four new appointments now, five total. The one with Dr. Oncologist has been on the books for about a week. And the rest are all a result of seeing Dr. Pulmonologist yesterday.
We discussed the nodule that showed up on my last CT, and he went over the images with me and Dan.
Before I lose everyone who’s tired of the medical crap and the anxiety stuff, a plug for the GoFundMe again. Things are about to get hella more expensive. Currently in the works: a lung function test, a CT and pre-admission testing for a lung biopsy, the actual lung biopsy, and a follow-up with Dr. Pulmonologist.
Oy.
“All of this is necessary, right?” I asked Dan while he got Moana rolling for me. (Watching makes me feel better.) I knew the answer, but needed Dan to confirm because I really do not want to do any of this. I’m looking for excuses.
“Yes. Listen to your doctors, Swiss,” he said while angling the TV toward the bed.
Dr. Pulmonologist is another of the good ones, by the way. I’ve been really lucky since we moved at the end of 2022.
Unfortunately, the string of bad doctors I encountered prior to my brain cancer diagnosis in 2017 really set the tone for my growing anxiety. I try to remember now to be fair to new doctors and to myself, but sometimes the body and the anxious brain just go on autopilot. I get all panicky without justification.
That’s probably all clear and I’m overexplaining myself. That’s the anxiety. It overexplains symptoms too. Trying to figure out how to be heard at doctor appointments will fuck you up, kids. Bad.
I’m working on it. Still. In fact, I think the only reason I made it through yesterday was because I was working on it by listening to a podcast episode from Tara Brach called Embodied Presence (Part 2).
Give it a listen if you’re dealing with chronic pain, emotional trauma, or if you want to understand how to deal with either or both for future reference. If I try to paraphrase, the good bits of her talk will be lost, and I will be writing this blog post forever.
Buckle in or bail, y’all. I’m not editing this for meanders.
One of the more incredible moments from yesterday came when I was describing my symptoms and my anxiety. I relayed to the doctor how I felt my shallow breathing and excessive fatigue were probably related to my anxiety, the pain in my muscles, and the swollen abdomen from an extreme bout with IBS.
You know what he said? He said, “You didn’t ask for this and it’s my job to do the worrying here.”
I might have cried if I could believe my own ears.
He also reminded me how closely IBS and anxiety were connected and assured me there were things that could help me breathe easier once we knew what we were dealing with.
This might all seem very obvious to others, I don’t know, but to me and my anxiety it was a revelation.
So, anyway, the nodule is on my right lobe and is about 9mm—smaller than the cheerio but bigger than the head of the thumbtack on the poster hanging on the back of the exam room door.
If the nodule goes away*, they won’t need to do the robot-assisted bronchoscopy. Cross your fingers, toes, eyeballs, hearts, and whatever else you got, people.
* Possible if it’s from an infection or something, but not likely.
This whole election cycle has been a shitshow, but this is the most coordinated I’ve seen the Democrats look in, well, ever. And I am enthusiastic about that. Very much so.
I will never fawn over a candidate, because they all have to be human and whatnot. However, I believe a couple of things about Joe Biden: 1.) He acts in good faith, and 2.) He genuinely cares what happens to Americans.
I don’t want to be misunderstood. When it comes to his dealings with Netanyahu, for example, I’m appalled.
I also have to admit, though, that there are foreign policy issues that are much more complicated for him than they are for me. And so while I think he’s wrong, I don’t think he’s self-serving in his wrongness.
He abdicated yesterday, not because he was tired of serving us peasants and wanted to golf, but because he was asked to step aside and understood his oath.
In leaving the race, he’s pushing the reset button on our government. Not entirely unlike George Washington did when he got this whole peaceful transfer of power thing rolling—in the interest of something bigger.
And I’ll stop there. This is not a founding fathers stan account.
The show of unity from Democrats endorsing Harris and the $50M grassroots donations in the wake of my shock? It calmed and quieted my anxiety in the midst of upheaval. (Something frequent readers know is no easy task.)
That all of this comes in the wake of the RNC’s unserious, unnerving spectacle of a convention makes it so much sweeter. Anyone can call for unity, but it’s pretty clear who says “unity” when they’re actually demanding everyone fall in line. And it’s pretty clear who is actually trying to make unity happen.
Not everyone is happy about the idea of Harris becoming president. I have my own (relatively slight, considering) misgivings about her. I wouldn’t have it any other way.
Anyway, I could turn this into something way longer than you want to read and way longer than I want to write. But I actually don’t want to turn this into a whole-ass US election cycle. I’ll just finish with this for now:
I think we’re better off than we were four years ago; I think we’re better off than we were four days ago, and I’m looking forward to the next presidential debate.
If there’s a way to be in abdominal pain and not also spiral into anxiety, someone out there please tell me what it is. Please.
I was up at 4:30 this morning again with intestinal distress. It was a mixed bag for me, emotionally. On one hand, I understand that the reason I still feel terrible is that this is not over. On the other hand, why is this still not over?!
When I don’t feel good, which is all the time these days, I watch Bob’s Burgers a lot. I recently saw the episode where Louise has an over-night with her class at the aquarium and gets constipated. Then I saw the Superbowl episode where Gene clogs a toilet at Jimmy Pesto’s. It occurs to me someone who writes for Bob’s Burgers has IBS.
Still no fever, which is good in all ways but the diagnostic ones.
Last night there was a family thing where everyone had calzones from Sauce on the Side—one of my favorites. Not only did I forgo the calzone to stay in bed, but I didn’t even throw myself a pity party about it. That’s how miserable I am right now. Eating rich foods sounds worse than enduring another four years of high school.
The only things bringing me GI joy right now are the Creamy Coconut Outshine bars. They’re like the pudding pops of my youth, but with coconut and without the rapist spokesperson.
I sent a message to the nurse practitioner to explain my situation last night and let her know I’ve stopped taking the hydroxychloroquine—at least until this clears up.
There are a few things that could have set me off, so I’m not ready to give up on it without a medical recommendation. However, it’s certainly not helping this present darkness, and I don’t want to needlessly develop a bad association.
Seeing how I ordered myself a grocery care package from Walmart and I was approved this week for Walmart’s affiliate program, I thought I’d share what IBS relief stuff is being delivered today.
Brief disclaimer since this is the internet: I’m disabled, but not so disabled I don’t delete comments from people who try to shame me about accessible delivery services, packaging, and whatnot.
Peppermint tea is soothing for the stomach. I frequently get tired of drinking the same thing, so I like to have a little variety. That leads me to my next purchase.
I’m not a fan of tea, but I always take my medicine. Ginger and I go way back to my first round of chemo. It helps with nausea.
FYI: Ondansetron (generic for Zofran) works well as an anti-emetic, but, girlfriend, it stops all the pipes from chugging. Give me some ginger and I’ll deal, thank you very much.)
I haven’t tried this yet, so I’m not vouching for it. It contains chicory though, so this has to be tried with forethought. It’s not time yet, but it will be waiting when I’m ready.
My taste buds prefer ice cream, but I’m trying to be kind to my intestines right now. The colder, the better even when it’s not the middle of July in the Northern Hemisphere.
Salt is just something I crave when I’m drinking a lot of water. Plus I really like the movie theater butter flavor on these. Popcorn hurts me, so I make do.
Lightly toasted with peanut butter for when I’m hungry, but not adventurously so. Dan and I both like them and just have them around anyway. This brand comes pre-sliced.
Usually I would treat myself with a package of Double Stuf Oreos, but graham crackers have less sugar. (Processed foods are a no-no, but YOLO. Also sugar is delicious but sadly a trigger for me, so I’m opting for less sugar. I’m a work in progress, okay?)
I’ve spent the last three days wondering if emergency surgery would be required to clear a bowel obstruction.
Here’s the thing. If me talking about poop troubles you in any way for any reason, you need to find something else to read. I have IBS, zero qualms, and a bag of edibles making me feel pretty bold right now.
I promise you I can’t be bothered to care whether this topic makes you squirm. Plus there are people out there who need me to write about this as much as I need to tell the tale.
Last night I went to bed near tears, my abdomen hurt so much. I spent most of the late afternoon using the shiatsu massager someone gifted me a couple of years ago on my belly. The heat and massage relieved some of the discomfort, and I was desperate.
Plus, I’d read that self-massage can relieve constipation and since I’m too weak and fatigued, I knew it was the closest I was going to get. I had to try.
I also sipped hot tea. I ate Activia. I took laxatives. I drank coffee. I threw caution to the wind and ate IBS-D triggers. Then, when none of that helped, I did the only thing I could. I panicked and let the anxiety in.
I laid in bed, staring at the ceiling and contemplating the blogger from 14 years ago who almost died because of a severe bowel obstruction. I saw her face and her hospital gown in my mind’s eye, and I pondered the worst.
Anxiety used to trigger IBS-D, by the way, but not this time. That turd wasn’t going to budge for nothin’.
I spent enough time on the toilet hoping for a bowel to twitch that eventually my legs went purple from the blood pooling around my feet and ankles.
(I have a foot rest, but after so much time even that doesn’t help.)
When I woke up this morning to take my levothyroxine, the water I sipped made me notice just how much I wanted to barf. I closed my eyes and willed away the nausea, falling back asleep for another hour. But when I woke again, the urge to hurl was still there.
I felt that familiar discomfort in my lower left abdominal quadrant where something (it was the poop) was setting off radiating nerve pain. I dug my palm in a little, pressing and pushing down toward my leg. My bowels rumbled.
“This is it! It’s happening! Finally!” I thought.
And so it was that I pooped today.
But you know what was waiting in the wings behind that IBS-C poop? IBS-D poop. That’s what.
No wonder I felt so awful. I might as well have been walking around for days with a cork up my ass.
And the best part is now I get to wonder if this is just ordinary IBS stuff or if the Plaquenil is making shit worse.
First off, it’s Prime Day. Jeff Bezos sucks, but some of us still rely on Amazon. I’m asking for help from people that shop there, not asking people to abandon their convictions. Use that link up there, and if you buy anything today, Amazon’s referral program will help me pay some bills.
Speaking of (medical) bills. I’m pushing my GoFundMe again in anticipation of my upcoming lung biopsy. Please share a link with someone.
My blog subscription emails are only going out a few times a week now. MailChimp won’t send them out without me forking over money because I’m blogging too frequently and have too many subscribers for the free plan.
So here’s the deal, you still get all the posts, you just get fewer emails per week. (They’re full posts now, so you can read from your inbox.)
There might be two or three entries per email notification going forward. If you want real-time notifications, I recommend trying an RSS reader. Or buying me a winning lottery ticket. You can always just come here and look for new posts too. You do you, Boo.
Finally, and I don’t know who needs to hear this, but the Dirty Dr. Pepper from Sonic is my new favorite thing.
A forty-four year old woman can be absolutely certain that something is the right thing to do and still pout and whine about it. Ask me how I know.
My oncologist called and reminded me there was that matter of the nodule on my lung that showed up in the last CT scan. With all the lupus stuff preoccupying my tumored brain, I’d forgotten about it. He didn’t though.
He recommended a biopsy, reasoning that if it is cancer, it’d be so easy to treat right now. A little zap and voila! Early detection and all that jazz.
I know he is absolutely right. But I also know my body’s proclivity for racking up procedures that don’t help identify a damn thing.
He’s going to put in the referral.
Damn it.
When I got home from the rheumatologist’s appointment Wednesday, I was so buoyed too. “I’m taking all of August off from doctor shit,” I told Dan.
Fucking hell.
Dr. Oncologist also sent my lymph tissue off to Cleveland Clinic for a second opinion, which was pretty cool of him. They agree the lymphadenopathy is not cancer, and a couple of other tests also came back negative.
So my lupus theory holds for now, and I’m well aware that lupus can cause lung issues too. In light of that: no vape, only edibles. I get better pain relief from edibles anyway.
That reminds me. While we were talking, Dr. Oncologist asked me again if I’d ever been told I have an autoimmune disease. Heh. So I told him about the lupus not being confirmed or ruled out and about the hydroxychloroquine, and he seemed to think that was a good plan.
I’ve been told numerous times over the course of many years that “something autoimmune is going on” but no one can ever diagnose what exactly it is. I’m trying not to get all twitchy about it while I’m typing this.
“Maybe you’ll get a disease named after you,” Dan joked.
I’ve been thinking about that and have decided if I could name a new disease, I’d give it some attitude. Like “fuck this noise disease” or something.
Anyway, that sound means it’s time to ask for financial help again. Small donations of $10 and/or sharing the link are always helpful.
