I’m sipping probiotic tea after an IBS flare that hurt my abdomen significantly enough to launch me into another panic attack.
The tunnel vision. The pre-syncope stars. The pounding heart. The muscles that just will not to the point I couldn’t even flush the toilet and struggled to pull my pants up. Struggled as in the physical exertion feels infinitely more exhausting than running my first 5k did.
It would be humiliating, the inability to flush a toilet, if I could think about what was happening in the moment, but that’s the thing: the thinking part of my brain (the prefrontal cortex) just relinquishes all its power to the lizard brain (the amygdala) when I enter panic mode. So I look back on the event with shame, even though there’s not a damn thing I can do until someone invents a time machine.
Everything I’ve read assures me that shutdown is one of the ways it’s supposed to work in the the event of actual, life-threatening danger. My brain is not broken, just overwhelmed. The “disordered” part of having an anxiety disorder (and it’s looking more and more like panic disorder too) is that my brain has deemed pretty much everything anxiety- and panic-worthy.
For years I’ve tried to sort out why I’ve had an IBS flare when one occurs and then spiraled into overthinking.
Did I eat too much fat? Did I eat too much sugar? Did the weather get the best of me? Did I get too much sun? Did taking my medicine without food trigger an episode? Am I just too fat and unhealthy? Is my body broken beyond repair? Is this my life now? Will I never have another good day?
What psychiatrist Judson Brewer writes is that the what matters more than the why. Searching for the reason why is an attempt to rewrite the past and make a better one.
But that’s not possible. So I’m spinning my wheels trying to think of what I did to myself when I should be focusing on what anxiety feels like so that my brain can reform its habit loops based on the positive and negative feedback it notices.
I am still so very much a work in progress, by the way.
This anxiety disorder didn’t happen overnight. In fact, I think it likely stems from being dismissed by doctors, pushing for answers, and then getting the brain tumor diagnosis. For a decade now, I’ve felt like if I don’t investigate the problems myself, no one will. (If you’ve been following this blog for a while that might be obvious.)
I’ve spent years starting from the place of “I’ll probably die because no one who can help gives a shit.” Talk about anxiety-inducing. “I’m an English major! I didn’t go to med school!”
That negative assumption is not true, but I haven’t convinced my lizard brain that doctors aren’t inherently shitheads.
Anyway, I am reminding myself that getting better takes time just like developing GAD did. I’m trying to be patient with myself. Trying to remember that when I have panic attacks I’m not regressing, not starting over.
It’s like pressing pause on a movie to get a snack from the kitchen. I don’t need to start the whole thing over from the beginning. So I’ll sip this tea and spend a few moments reflecting on the progress I made.
Because all is not lost. Because I can do this hard thing. Because I have help.
To calm my nerves I’ve been listening to chants of om mani padme hum, and now I have the insatiable desire to smack myself in the head with a book. (If you know, you know.) I mean, I realize I’m dealing with different monks in different parts of the world, but my brain draws on the similarities regardless.
I was in a really bad place over the weekend—both mentally and physically. Though the appointment with my new primary went well last week, I did walk away with three new diagnoses that I just wasn’t mentally steeled for: depression (I was flagged after answering the screening questions), central spinal stenosis, and a bulging lumbar disc (evidence of both were in a recent CT report, but I intentionally stopped the careful reading after the stuff in there about my lymph nodes being mostly the same).
One could argue I should have known, but there are rules: Don’t get a mogwai wet, don’t sit in a wheelchair for two hours, and don’t give my anxiety a thought to latch onto by reading all the report details.
On top of the medical triggers, the rain was relentless. Weather changes bring changes in body physiology. Rain brought awful pain, more intense muscle weakness, and the kind of whole-body buzzing and restlessness that meant I got only a few cumulative hours of fitfully uncomfortable sleep for three nights straight.
And when I can’t sleep? Whew! I am a giant ball of anxious, cranky knots. Move over depression, Mama’s running on angry fumes again.
Today is better though. I even had a few moments this morning of painful ease. (The pain is still there, but I’m able to cope with it.)
Labs yesterday revealed that my cholesterol is super high. Annoying, but not a surprise. I go for a follow-up on Friday and I will probably elaborate more about it and other resullts then. For now I’m just glad to be pooping and over the worst of an IBS flare-up.
There’s about to be some more candid talk about IBS and things, as I think the title suggests. If that makes you uncomfortable, go with your gods.
Before I was diagnosed with this brain tumor, I would meditate to deal with the pain. I’d imagine—and maybe I’m showing my age here—a game of pong being played in my neck. Every time a pain signal went traveling to or from my brain, I’d reject the little ball of hurt and send it back down to the bowels of hell.
I was really good at that meditation because with my struggle for the right diagnosis, I had to be. It was very effective. Too effective.
In fact after a few years, I didn’t need to do it anymore. I managed to put up a permanent barrier to the pain without really understanding what I’d done. And so when the pain came, it wasn’t processed, it was deflected. To my neck, my shoulders, my GI tract where, as you know, it has wreaked all kinds of havoc.
Somewhat serendipitously, I recalled these meditations, and wondered if constructing the pain barrier was part of my problem. I imagined tearing down the wall, fearlessly letting pain signals break through but also letting blood and oxygen circulate as they should.
I visualized my breath running from the top of my head to the tips of my toes.
Holy fuck, you guys.
I immediately had the sensation that my brain was connected to my tumor that was connected to my guts that was connected to my brain that was connected to my head that was connected to my feet that was connected to my muscles…
You get the idea. I felt whole instead of just possessing a bunch of disconnected parts. Without self-awareness, RAIN, and mindfulness (thank you Tara Brach and Dr. Jud) I might not have recognized what was happening.
“I am not scared of you, Pain,” I found myself thinking. Then in my best Pat Bentar, I belted, “Hit me with your best shot. Fire away!”
There have been a number of physical improvements to go with my mental ease. For instance, during yesterday’s MRI, I had a couple of moments where my shoulders relaxed. I yawned on the ride home from the hospital, and at home I farted into the toilet bowl so loud and long and resonantly that Dan giggled like a twelve year old from the bedroom.
My parasympathetic nervous system is still in there!
My colon has always known how to digest y’all. It just wasn’t getting the go-ahead from my brain because I had diverted it’s power and asked it to process my pain and fear instead. A couple of things it has no clue how to do.
It was like I’d been asking a penis how to insert a tampon when a vagina was right there.
If I have learned anything from the latest lung biopsy scare after the lymph node surgical biopsy following two lymph node needle biopsies sandwiched between episodes of anxiety, inflammation, and IBS flares, it’s to trust myself when I say it’s time for steroids.
It’s day three of my dose pack, and despite the excessive hanger and steroid insomnia, I feel human again. For the first time in almost two years.
In my adolescence, I used to get a steroid dose pack every year around May when Ohio River Valley pollen and GE Plastics pollution landed me at the doctor’s office with a raging sinus infection. It suppressed the inflammation and made the pain and pressure go away while the antibiotics took the time they needed.
Now doctors look at me like I’m begging for Vicodin and a Shetland pony when I ask for help getting inflammatory shit under control. “We don’t like to prescribe steroids. Only as a last resort.”
I. Have. Brain. Cancer. If I don’t qualify for a little pain relief, who the fuck does?
I’m not mad at my doctors. Just so frustrated that every little thing feels like a fight for me.
I don’t know when this “steroid steward” thing happened, or if it’s a regional phenomenon or what, but I miss palliative care so much. They’d call me once a month, and make my life as tolerable as possible. I need to find this kind of care here.
I understand better than most what risks come with steroid use. When I request it, I’m way beyond needing a little help. I’m desperate. I haven’t taken steroids since Boomer had a surgical liver biopsy in 2022 and I needed an assist walking across the University of Illinois campus while their veterinary building was under construction.
Did I mention I have a brain tumor and sometimes my body needs help?
This post is entirely self-serving. For the next time I need to be more assertive. I can be a bitch with or without ‘roid rage.
Well that was fast. I’m off the Plaquenil (hydroxychloroquine) for good. I’m so weak, dizzy, and bloated. I don’t think it’s the drug’s fault, honestly, but boy does it amplify my IBS pain and bloat by like a bajillion.
I can’t even. My abdomen is so tender to the touch. There isn’t room for these behemoth-like intestines.
I messaged my doctor who reminded me we didn’t even have confirmation that this (waves at myself from head to toe) is autoimmune. He agreed I should stop taking the Plaquenil.
Gah! It’s so frustrating not knowing how to fix this.
There are a couple of bright sides to this story, though. First, Dr. Rheumatologist called in a prescription for a steroid dose pack. Praise jeebus!
I’ve been trying not to beg—in case they were a terribly ill-advised treatment—but I’m desperate.
I don’t know what’s causing these additional symptoms, but I do know perfectly well my body needs a little assistance to even have a chance to repair what’s wrecked.
In the past, palliative care would give me a short course of ‘roids. However, I don’t have palliative care here in Edwardsville, which means quality of life often takes a backseat to diagnosis.
I get it and I respect it, but it does present some challenges for a woman 7 years out from a brain tumor diagnosis. Like hooray, I’m alive. But also? It’d be nice if I could, you know, get out of bed.
Second bright side: I feel so awful this evening that it’s clearer how much better I was doing eating smaller portions more frequently, meditating daily, and not having to fuck around with health insurance.
(Things went sideways with Dan’s Medicaid today, but I don’t feel like explaining in detail. Suffice it to say we had enough on our plates already. And that extra $60 we need for his meds now wasn’t exactly budgeted.)
Anyway, here’s hoping the steroids give my body the boost it needs. It’s been trying way too hard for way too long.
I’ve been thoroughly enjoying not having any doctor appointments to blog about this month, but the medical mystery of whether or not I have some kind of chemo-induced lupus still looms.
I started back on the Plaquenil (hydroxychloroquine) last night. I’m not feeling a hundred percent—more on that in a second—but I think things are good enough that I can track whether the medicine is going to be helpful.
Plus, when I stopped taking the Plaquenil, I told the nurse practitioner (and myself) that I would start up again when I felt better. My next appointment with rheumatology is at the end of October, so given how long this drug might need to take effect, It seems like a good idea to give it another try now rather than later.
I was feeling better after the anxiety work, and I started reintroducing some of my favorite foods to test my IBS. Though I haven’t endured my worst IBS-C ever the past couple of weeks, constipation has definitely moved back up the problematic scale to affect my overall quality of life.
Over the weekend I had a buffalo chicken pizza. It tasted glorious but had jalapenos on it. I removed the jalapenos originally when placing the online order but screwed up another part of the order, deleted the wrong pizza on accident, and then forgot to remove the peppers when I added my pizza back. (Honestly, the buffalo sauce was probably too much on its own.)
No big deal, right? Ha!
The inflammatory effects were immediate. I picked the jalapenos off subsequent slices, but the damage was done.
Not that one single misstep undid me. The weather was unstable. I was already feeling worse, which kicked off a series of “eat this to distract yourself from the pain” cues in my brain. I knew what was happening, but my lizard brain wasn’t interested in the pedantic warnings of my prefrontal cortex.
At least I understand the process of the habit now, thanks to Unwinding Anxiety.
Anyway, it’s pumpkin spice latte season, so I was off my sleep game too, consuming caffeine like it doesn’t keep me on the edge of awake all night.
I’ve listened to Unwinding Anxiety a few times through now. I’m reluctant to praise anything too much, because I know how isolating and depressing it can be to want relief and not find it in places where others have. This Review of Unwinding Anxiety comes with a disclaimer.
Applying Brewer’s approach to my own anxiety and IBS seems to be working for me, but it might not be as healing for you. I want you to know that I see and fully acknowledge your struggle.
I’ve been stymied by that battle for what feels like an eternity, and I only drop affiliate links to make this book easier to access if you’re curious. Not because I think there’s a miracle, one-size-fits-all cure for this shit. If nothing else, reading could lead you to discover something that helps you more. That’s all I expect anyone to get from my review today.
But listen to me: if it doesn’t help like you want, it’s not your fault. It’s so important to me that you know that.
I still have anxiety, and I will always be prone to my anxious tendencies. The difference is that now I recognize it, have tools that can help me process it, and can clearly see the benefit of applying those tools.
Like I said a few days ago, I’m not moved much by woo. I prefer hard science, and Judson Brewer broke it down for me in this book. He explained his research plainly, and I found his writing clear but thorough.
Still, I’m the type who picks up on new things every time I read—it’s like when I’m rewatching a favorite movie and I notice something for the first time. I intend to give the audiobook a third listen after the initial ideas in Unwinding Anxiety have had a little more time to simmer.
Unwinding My Own Anxiety
My earliest memorable dealings with anxiety harken back to when I was about 8. I was in bed one night trying to sleep when I thought about the story of John Henry. We’d sung a song about him in music class earlier that week.
When I thought about Henry’s death and then realized my own was inevitable, I struggled to breathe. I felt sick to my stomach and hung out by the toilet for the night. It was my first panic attack, and I have only this week come to understand that’s what was happening.
Unfortunately, my best friend was sleeping over that night, and she wanted to go home. Adult me totally gets it, but little me was kind of heartbroken that my best friend didn’t want to hang out. Her mom or her grandma or someone came to pick her up. I was not just feeling anxious, I was feeling rejected.
My parents tried to console me that night, but I don’t think they understood my experience because I didn’t have words to articulate my fear. Besides, even at 8 years old, I already understood that I should probably just get a grip.
I got that same anxious feeling in my gut about Gifted & Talented class and tried to quit. But the G&T teacher was a hardass. She told me I couldn’t quit unless my parents wrote a note. I thought I’d be a disappointment to them—and I didn’t want to break their hearts—so I stayed in the program and never again brought it up.
And so it went for another 36 years.
I knew when I got stressed and anxious, my IBS would show up, but I had no clue I had developed full-blown generalized anxiety disorder until I heard Brewer define it. Then I remembered the joke I saw on Twitter about all the G&T kids being perfectionists with anxiety.
Hahahaha. Heh.
*nervously glances around room*
That plus recalling Dr. Pulmonologist recently noting the connection between IBS and anxiety caused me to have a lightbulb moment while listening to Unwinding Anxiety.
If I didn’t have a brain tumor to worry about, I might have put the pieces together sooner. After all, I have been diagnosed with anxiety because of my health.
Detailing My Anxiety Loops
Trying to get the anxiety and IBS to stop without understanding the connection was futile. My chronic illness and the physical manifestations of my GAD, were woven too tightly together.
With each new physical symptom, I’d spiral and feed the anxious habits I’d been actively suppressing for a lifetime. Every new doctor’s appointment made it all worse.
The constant internal battle over needing to know what was wrong with me but also needing to not have another expensive doctor’s appointment drain my bank account magnified my anxiety and made my IBS an even bigger problem. To the point I was noticing disordered eating in an attempt not to shit my pants. Sometimes not wanting to eat at all. When I would finally give in and eat because I knew I needed calories to stay alive, there would be even more severe consequences.
When Mom would join us for a meal, I’d stress about getting to the bathroom in time after eating. Or I’d fret about choosing the “wrong” food when ordering takeout, et voilá. I’d give the IBS something to IBS about. I’d try to identify trigger foods only to realize everything caused GI distress and be certain I was hopelessly broken. The suffering was endless.
Also? “You have cancer, we should see if this is cancer too” every few weeks might have been medically sound advice, but it was disastrous for my mental health. My doctors and I didn’t know what we didn’t know.
Pausing My Catastrophic Spirals
Garden variety anxiety had been on my radar for a while. So I tried earnestly to meditate myself to calm. The problem was that my anxiety had anxiety, as they say. Or, put another way, I was anxious I’d be anxious again. I was a hot mess.
I’m still a hot mess, if I’m honest. But Unwinding Anxiety has helped me understand what triggers my anxiety loops, why just mapping the loops helps, and how a subtle shift in how I meditate gets me to recognize what’s happening and press pause on the unraveling.
My brain has always been trying to help, since I was a kid, but I ended up very literally addicted to worry.
Evidence My Anxiety Was Exacerbating My IBS
Grasping for answers made me feel worse. Nothing is clearer to me now. Brewer encourages the anxious who try his approach to not just scrutinize his evidence, but look for their own.
I’m wary of things helping for a short time and ceasing to be therapeutic, BUT
My guts aren’t as inflamed. Which means my lungs have more room to expand and my breathing isn’t as shallow as it was just last week.
I can also hug both of my knees to my chest without any pain in my abdomen—something that inflammation and excruciating pain had made impossible for the last couple of years.
I am still eating “bad” foods, but my IBS-D episodes are farther between and less severe. I haven’t had an IBS-C bout since my first listen. Though it’s too early to say anything about IBS-C with certainty as that has always been an intermittent issue.
That level of improvement with my IBS coupled with my vastly improved mental well-being—in such a short time—is enough for me to keep on keeping on and write this long-ass post.
I spent all day yesterday listening to the UnwindingAnxiety audiobook by Judson Brewer. It had been on my radar for a while after he was a guest on Tara Brach’s podcast, but, you know, money. I was getting desperate about my mental health though.
Anyway, Unwinding Anxiety was very helpful for me, because there’s so much woo out there when it comes to learning about mindfulness and meditation. Brewer is an MD and PhD (like the neurosurgeon who cut my head open in 2017) and there was so much science in his approach, I was darn near giddy.
I know some people prefer a more spiritual approach to these things, but that is not me. I sometimes filter through the spiritual silt for the nuggets, but when I don’t have to spend energy on that? Praise cheezus.
Let’s just say it was worth every penny of the $13 it cost me to get that book. Bonus points that I can listen from bed.
By the way, I made this wallpaper for my phone’s lock screen after listening. Feel free to save it to your phone if you think it could help. I’m much less inclined to be on social media these days, but I do still look at my screen more frequently than I’d like. Maybe this will help me create space, as they say.
Brewer is from Indianapolis, experienced IBS, and mentioned how well Western medicine handled brain tumors in chapter 20. Those random connections in some way comforted my anxious mind.
Speaking of anxiety (Because I never do that. Ha!) I am now pretty sure—after reading Brewer’s book—that what I have is generalized anxiety disorder. However, seeking an official diagnosis in a clinical setting is the last thing I need at the moment.
Just learning how my anxious brain works is progress. I think working at identifying my anxiety loops and recognizing when it’s time to place the proverbial sticks in their spokes will get me to a place where I can make a better decision about whether seeing a psychiatrist is warranted.
I’m not opposed to the idea. But money and other triggers are always a concern.
I’ve been trying really hard to stay positive, but today I am dealing with an IBS-D flare and back spasms. It’s taking all I’ve got to stay in the low-anxiety zone. And I’ll be frank, I am not good at it.
There are new lounging pants in my wishlist, and I will leave the rest to your imagination. Just know that it’s difficult to not be very angry at my body when it feels like it’s out to get me.
This back issue happened to me once at the hospital after a particularly long MRI. If I had to guess, I’d say I’m adjusting poorly to the new bed in addition to the usual irritable bowel shenanigans. It’s better for me, the adjustable bed, but I was used to the struggles of the old one. Now my back is being precious about it.
If the past is any indicator, the tension and immobility in my lower back will wane eventually, but until that time I’ve got my middle fingers out again. I’m exhausted by the setbacks and rotating ailments. I’m ready for some stability.
Less sucky stability though. I feel like if I don’t make that clear, I’ll end up with crap experiences on a technicality. Like when the genie takes away one of your wishes because you wish you knew what to wish for.
I know that I have a better sense of well-being when I can make room for the inconveniences of being chronically ill, but this level of meditation is new and hard. It takes time to make new habits. It’s not like I came with all this angst on day one.
Anyway, today I’m overwhelmed and need a hug, a penguin stuffie, and some peppermint tea. A little sunshine wouldn’t hurt either.
We’ve had a couple of pleasant days here, but they were deceptively pleasant. I’m paying for having the windows open with non-stop sneezing and a raging sinus headache so intense my teeth hurt. It’s hard to be positive when the things you want to celebrate hurt you.
Nevertheless.
Hold up. Dan just brought me an ice pack to put on my face.
Ahhh.
Oliver has a new nickname in addition to Oliver Wendell Homeslice. It’s Coach. Because he busts through the bathroom door when I’m on the toilet and screams at me. I appreciate the pep talk, but so far it hasn’t helped my IBS-C flares.
Gratuitous photos of the cute, but ineffective, little jerk.
I’m currently struggling with not worrying about Dan and had to have the “I need to know you’ll be okay,” talk. Not because I feel the end is near, but because my superpower is obsessing over what ifs. I have been feeling like a ginormous burden lately, no doubt fueled by the US system of “heath care” in all its overpriced glory.
Something in me thinks things would feel manageable again if I could keep the anxiety down to a dull roar, but every time I think I have something sorted, a new thing surfaces. Today it’s a cyst on the skin near my sternum. This has appeared before, but the difference is I could deal with the weird post-chemo skin stuff back then. Now I can’t tuck my chin far enough to see it.
Skin lesions are Dan’s specialty though, so at least I don’t feel like I have to worry about another trip to the doctor.
Oh, also I bought some stuff for swimmer’s ear, and I just want to say there’s a special place in hell for manufacturers who don’t put tabs on foil seals and then have the nerve to put a paper layer on top that tears away leaving absolutely nothing to grip.
While I’m complaining: I got this remote holder from Amazon. The picture shows it holding three remotes but it only holds two of mine. Naturally I need it to hold a TV remote, a Roku remote, and my adjustable bed remote.
“But Emily,” I hear you saying, “didn’t you test how many remotes it would hold before you stuck it to the nightstand?”
