I want good things to stay. Why does that feel like it’s too much to ask?
I got a letter in the mail saying that my primary doctor is leaving and they’ve assigned me a new doctor a couple of towns over.
I’m not just sad. I’m heartbroken. Again. I want to sob into a package of Oreos. This is not helping my abandonment issues or anxiety at all. Why can’t I have a doctor who helps me?
Why?
Dr. J has done so much for me, including switching me to Lexapro, hearing me loud and clear when I said no mammograms, encouraging me to try PT, scraping me up off the parking lot, and telling me at every visit to do something fun every day.
As opposed to the absolute cunt before her that berated me in writing for not making appointments and getting the labs she wanted.
My oncologist is fine. A good doctor and a stable fixture, but it’s complicated because his existence reminds me I have cancer. He can’t make the brain tumor go away. He probably looks at me and sees a time bomb.
Even though I don’t see that in the mirror, lots of people reflect that pain onto me. It’s excruciating.
There’s an episode of Glee I carry around in my head where Jane Lynch’s character, Sue Sylvester, is confronted about treating a cheerleader with Down’s Syndrome cruelly.
She replies by saying she has a sister (I think) with Down’s and all she wants is for people to treat her like they treat everyone else. Bottom line: Lynch is as an asshole to everyone.
Can’t argue with that logic.
I want to be treated like everyone else too. Healthy people could all die at any moment too. Stop pretending they’re different than me. I can still have a heart attack or get hit by a bus. Treat me like that.
Treat me with care, not caution.
So I must start from scratch with a new patient appointment. And my medical history is complicated. And the brain fog. And the anxiety. My last “get to know you” appointment was two hours long.
Sometimes I chastise myself for overthinking things, especially when it comes to anxious thoughts. However, I’ve realized that no one else is going to analyze this stuff for me.
I do self-guided therapy because of the expense (financial and otherwise) of traditional therapy. So thinking about things deeply is to dwell in the belly of the beast. It is not pleasant, but feels necessary.
And that’s about all the context needed for readers of today’s blog therapy session.
When I was very young, like maybe four, we went on a vacation with my grandpa that included a family reunion in South Dakota.
Somewhere along the way we stopped at an indoor water park. My grandpa was supposed to catch me coming down a short slide into a pool that was small and maybe four feet deep. At my age, it might as well have been twenty feet deep.
As I was going down the slide, my dad was launching off of a trapeze in the big pool. Grandpa turned to look at his son as I was coming down the slide and didn’t catch me. I was in over my head, and I couldn’t swim. There was much coughing and sputtering complete with the burning sensation of chlorinated water in my nose and lungs.
After all the warranted fussing, the adults tried to coax me back in the water with a flotation device, but I would have none of it. My lizard brain figured my odds of not drowning were better if I just stayed out of pools.
(I hated pools until junior high, and probably would have hated them longer if I was OK with my classmates knowing I was a big weenie.)
For reasons that seem obvious to only me, anytime Dan looks at something shiny when I am trying to keep my balance, I flip the fuck out and have a panic attack.
Falls are the new drowning.
On my way back downstairs after a recent session of occupational therapy, Dan looked away from me as I white-knuckled the Rollator from carpet to vinyl. Seeing him distracted while I felt unsteady, I said, “My brain needs you to pay attention to me!”
Onlookers may have been shocked at the terror in my voice. I wasn’t.
It’s been about 24-hours of barely speaking to Dan since yesterday’s stalemate. I’ve decided that I don’t want the burden of his anxiety when some days I’m barely capable of handling my own.
He can face his anxiety or not, but I don’t feel calm. And the only way I see to avoid serious regression is to minimize the number of panic attacks I endure.
Unfortunately, while the quiet tension mounts, I remain in a cycle of disordered panic. I can’t sleep, my feet are cold, I spend hours at a time curled up in a fetal position. I recognize the physical pain of being tight and closed, but it’s involuntary. It seems as soon as I stretch out, I find myself in a ball again. With no idea how I got there.
So I went all of today not asking for his help with anything. That way I don’t have to navigate the guilt of his sighs or listen to him remind me that he’s been in pain for 30 years now.
To be clear, I am not dismissive of his chronic illness. It’s just, to be perfectly blunt, his PsA doesn’t cure my fucking cancer. I keep reminding myself I didn’t choose this tumor. But I don’t want to have to keep reminding myself. I’m tired of reminding myself. I feel like I’ve earned a little tantrum, as a treat.
For eight years I’ve been saying to anyone who will listen, “I want one thing not to be a fight.” And my progress with PT? Well, no fight! It was glorious!
But here I am fighting again when I feel pretty strongly I shouldn’t have to. I can be stubborn and entitled too. Like, dude, work on yourself because your anxiety and depression clearly affect me. And I DO. NOT. WANT.
Ninety percent of the anxiety I experience now is me trying to determine what my giant man-baby needs so his fee-fees don’t get hurt.
Because he won’t just say it out loud. And he acts like he’s doing me some big favor by holding everything in.
One very good thing about Lexapro: my highs are as high as my lows are low.
I made it to my doctor’s appointment today—the one that was supposed to be Friday—and let me just say what a difference a business day makes. I got the order for my AFO brace. WENT. DOWN. THREE. STAIRS. and walked up an inclined ramp, all without a panic attack!
My doctor was happy for me and asked if I needed orders submitted for outpatient physical therapy. I’m content to wait a little bit on that. I’d like to have the foot brace, and I’d also like a little break.
I keep up with my PT exercises, so I’m not concerned about regression if I wait. I’m motivated simply by doing things I haven’t done in ages. I won’t press the outpatient PT issue either because if it doesn’t happen until after MRI and CT imaging at the end of the month, that’ll be much easier on me in terms of managing the angst.
If someone calls to schedule PT before that, I might opt to go ahead. Don’t need to make that decision now, though.
Saturday I took a shower and walkered myself back to bed instead of being wheeled. I know for mobile people, this sounds like nothing. But for me it’s a big fucking deal.
Suck it, Benny Hinn.
I’m still working on my non-dominant, left-handed writing and drawing. I’m really proud of how neat my penmanship has gotten. I’m nothing if not tenaciously disciplined when it comes to self-improvement. I like the way this neat and orderly page turned out:
Sometimes I’m really tired, though, and my brain wants to do more Zentangle-inspired practice
Still raising money for dental work. Remember that small donations matter. Shares matter. It all matters!
I didn’t have the best week. Of four appointments this week, I had to cancel four. An MRI, a CT, a dentist appointment, and a primary doctor appointment. And because those scans didn’t happen, my oncology appointment next week was moved to next month. All of this finagling of my medical calendar is fallout from panic attacks. They literally immobilize me, and I can’t do what I can’t do.
After I flopped and flailed trying to sit up in bed at lunch time, I gave up, and decided nothing was happening today. I figured I’d eat some of Dan’s birthday cake and watch Murderbot to console myself.
All the rescheduling feels heavy, but particularly the appointment with my primary doctor today. I don’t just feel like I’m failing myself by not being perfect, but also because it delays my getting a foot brace. I really, really want that foot brace.
I want to walk outside on a sidewalk, and I believe the brace will help me unlock that ability.
Physical therapy has helped me a lot. It has given me hope that I can be much more independent again, but it hasn’t exactly made me patient. This impatience is deeply embedded in my personality. I was the kid sister who learned to read and write because my brothers could. I wanted to do anything they could, just without waiting until I was their age.
On Wednesday we drove all the way to the hospital in O’Fallon for my regularly ordered imaging. After an ORDEAL™ getting into the car, I cancelled in the stinking parking lot, convinced I was a total failure and bummed I put everyone (OK, just me) through all that for nothing and inconsolable that I’d have to try again later. With no promise that any future attempt would be fruitful either.
That night I did that breath-catching sobby thing that toddlers do until I fell asleep. Hyperventilating, basically. Very few actual tears though, because panic attacks get me stuck in a prolonged freeze response. There’s no actual crying when your brain is convinced you’re dying. So it just gets lodged in there.
The more you know. đźŚ
i haven’t had a real cry since my dad died four years ago. Which is very not me. I’m an out-and-proud crier. A sympathy crier. A happy crier. An overwhelmed crier. A proud crier. Time was you could boil pasta in my tears.
Odd as it sounds, dry sobbing is an improvement. I get the sense I’m climbing up a scorching metal slide with my feet buttered, and eventually I will reach the summit where the waterworks will go nuts. Then I’ll have all of me (if not my body) back in working order.
I never really understood emotional repression of this magnitude before now. I am the kind of person who just leans in, usually when I’m alone. I am never alone now. I don’t let myself work through anything because I’m worrying my sadness will be contagious and so then I repress to save others from heartache and in the process fuck myself up.
God, this fucking cancer. The tumor isn’t half as problematic as knowing I have one.
But being unable to ugly cry and feel my feels feels awful. I want to purge it all. Why is that so hard? It’s like when my stomach turns sour and I start fantasizing about a good vomit.
Yes, that’s a Napoleon Dynamite reference. Yes, I’m one of like three people on the planet who thinks that movie is hilarious.
Midwesterners are traditionallly not very good at goodbyes. The Midwestern Goodbye™ is a thing where someone doesn’t leave until at least half an hour after they’ve announced their intention to leave.
In some cases, it might be a result of heartbreaking feelings about leaving. In other cases, someone might feel it impolite to tear the bandage off too quickly. Most of the time, though, I think it’s just customary.
There are always exceptions to the rule. Medical appointments, or appointments in general, spring to mind. In an effort not to make someone late for the next thing, goodbyes are wrapped up pretty painlessly.
I mostly feel like that’s how it should be, everyone respectful of everyone’s time.
But today was my last session with Pedro (not his real name) and the goodbye wasn’t Midwestern enough for me because I knew he had to get to the day’s next patient.
If I’m honest, a lot of that angsty sadness has to do with how I experience anxiety right now. I’ll be moving on to outpatient PT just up the road, and I have to leave my safe space for that. Both physically and emotionally.
Credit where it’s due, Pedro was a safe place.
I think back to the time when I did the Couch to 5k and ended up with pain in my right hip and leg.
The sports medicine doctor didn’t see anything glaring on my X-ray, and recommended I start PT to strengthen that leg and fix my minor gait issues. I dutifully obeyed, and the PT I saw at the outpatient clinic noticed my IT band was tight.
He did the thing where he tried to get my muscles to let go by scraping the outside of my thigh from hip to knee with his forearm. I screamed out in excruciating pain, and everyone there—about 20 people—stared at me as I curled up in the fetal position on the table.
I hate being the center of attention in a group.
I also hate feeling weak.
To be fair to that PT, none of us knew what we didn’t know.
I didn’t cry that day because I didn’t want to cause a scene, but I was weeping on the inside.
It was traumatic, the bolt of hurt that shot up the offending nerve and lodged for years in my brain. As the incubator of a slow-growing astrocytoma, there was probably some tumor stuff going on already. There was absolutely repressed anxiety.
In contrast, the first time Pedro stretched my right foot I said, “That feels good.” I was shocked, and because I was emotionally a little raw, I was also surprised I was surprised. My shock probably registered on my face. I have a hard time controlling my expressions now that I’m working on feeling more feels.
That’s not a bad thing, just not historically a thing I do. I’m still working out the kinks.
Anyway, for something like eight weeks, Pedro has been helping me regain the muscle strength I thought was lost forever. And while it’s very empowering to stand at the sink and brush my teeth again, it’s a million times more beautiful to feel the fog of depression clearing in such a profound way. In hindsight I can see how depressed I really was.
I’m independent to a fault, but need help with so much. That’s left a mark.
Naturally I’m a little scared about what physical therapy will be like without Pedro. A little scared I’ll backslide. That I’ll end up in the care of a professional asshole and flip out.
Even Dan was like, “Can you have another surgery or something so Pedro can come back?”
I didn’t have a chance to tell Pedro all of this because there were other patients to be seen and there wasn’t really time for that Midwestern Goodbye.
I’d have probably been weird and got teary anyway because at the end of sessions I’m running on fumes and emotionally as raw as uncooked ground beef.
Odds are good that the Midwestern Hugger in me would have forgotten that some people* don’t want to be squeezed and you don’t always know who they are.
Bottom line is I’m team Pedro. When medical procedures lurk in my future**, I will remind my anxiety and depression that Pedro offers me his protection.
* Like the doctor who robotically puts a hand on your shoulder. You know the one. The one that says “I was taught that touch conveys empathy in medical school, but I maintain detached indifference. This gesture is a pointless ritual.”
** Next opportunity to practice being chill are the routine MRI and CT on June 4th. So scanxiety can suck it.
I’m feeling better today, pain-wise. So much better, in fact, that I have had my bra on for eight whole hours. Usually the bolts of pain in my neck and shoulders have me feeling like I can’t go a minute longer in discomfort, but today has been good enough that, if I could work, the bra would’ve stayed on until I was driving home down the highway.
Just pictured myself driving I-465 in Indianapolis on my way home from one of my crappier jobs holding a bra out the sunroof as it flapped like a checkered flag and chuckled. That might really fix me. If I could drive.
It’s been a beautiful day. In fact, we’ve had a couple in a row. I’ve been using the Merlin app to track the birds migrating the last couple of weeks, but those good ol’ Song Sparrows are a gosh dang delight. Other birds are more colorful and more exciting to ID, but the Song Sparrows are consistent comfort. I dig that about them.
Next week is my last scheduled week of in-home PT. Am I ready for outpatient therapy? Probably. I mean, they know better than I do, and I suppose it’ll be good for me to move on. But I can’t take my PT with me, and that has me feeling ways. I know it’s a job for most healthcare workers, but sometimes as a patient one just hits different. The anxious me is on the inside like a toddler having a meltdown, “I don’t want a different PT! I like this one!”
Change is hard. I’m trying to strike a deal with myself that I can have an ice cream if I’m brave.
The anxiety compounds the problem and I’m forgoing cognitive therapy until the dentist stuff is paid off. I’ve come a long way, especially where panic attacks are concerned, but I don’t want to stall out yet worry that I will.
What if I don’t trust the next PT?
Now I’m thinking about those ridiculous trust fall exercises that were so popular and seemed so harmless. The best way I can sum up my GAD for those not in the know, is that I’m a literal fall risk and I don’t trust me to catch me and I’m convinced I’ll take out every one in my path on the way down.
“Don’t worry, you’ll fall on me if you go down!” Everyone says that. Inside I’m like, “OK, but that’s also what I’m afraid of!”
When I buckled in my primary doctor’s office parking lot the other week, Dan asked what my doctor said about them scraping me up off the asphalt.
“They told me to stop apologizing.”
“See,” he said.
I need to come to terms with self-blame, but I haven’t figured out how yet.
Sometimes I feel sorry for myself and eat Oreos. Today is one of those days. Relative to recent feelings of accomplishment, today sucks. I know that comparison is the proverbial thief of joy, but that doesn’t mean my brain can stop comparing.
I want every day to be a little better than the one before, but that’s not how it works. And the recent weather changes, what with the storms and tornadoes and all, have landed me in the land of elevated pain levels. Which makes me not want to move. Which depresses me.
Shoves Oreo in mouth.
Part of my problem is that I’m fundraising again. I don’t have words to describe how exhausting and demoralizing it is to need money to live while asshat billionaires have asshat far-from-billionaires convinced I’m the useless eater.
At times like this my mind goes back to the insurance company peon who said I didn’t deserve health insurance (and therefore healthcare). I know it’s bullshit—that she’s the reprehensible one—but that doesn’t mean that I’m unaffected. And that doesn’t mean there aren’t days when the bastards get me down.
I hope one day the brain tumor cells I donated to science save someone she loves. Partly because everyone deserves a life free of cancer, but mostly for spite. Because fuck her for living rent free in my head. The astrocytoma takes up enough space.
Eats another Oreo.
Another thing: some days I feel like an untouchable. Though I have plenty of evidence to the contrary, being 8 years out from diagnosis leaves the brain to wonder why I’m not dead yet. And if I wonder that, what must everyone else be wondering? Of course I don’t know, but my brain is very good at imagining people are tired of me existing.
Maybe it’s survivor’s guilt. If so, it’s more self-centered than I thought.
Maybe this Oreo will help.
The forecast says the barometric pressure should stabilize soon, so I hope my complex migraine will fuck off with the storms. It makes me crave sugar, and I feel like everything inside my skin is three sizes too big. I feel like the undersides of the skin of my left side have suffered rug-burn.
It’ll subside, along with the tongue swelling caused by black pepper and the oversensitivity to light and fragrance when the inflammation recedes. But until then, I’ll just have another Oreo.
I started physical therapy and occupational therapy this week, and I’m so excited. I’ve been in this bed far too much for far too long.
I’m screaming to get out and about now that it’s Spring, so I estimate the timing is perfect.
Basically, I suffer from a lack of confidence getting around after falling and my anxiety about falls has led to me being inactive and depressed, and all of that leads to deconditioning which fuels more anxiety because I don’t trust my muscles.
It’s a vicious cycle that I’m eager to break.
So the plan is that I will have in-home therapy 4 days a week for six weeks, 2 alternating days of PT and OT Monday through Thursday.
I had my first full session of PT on Friday this week. It’s all happening much quicker than estimated, which is great because there hasn’t been a lot of time for me to psych myself out by overthinking and feeding the anxiety monster.
For my first goal, I’d like to be able to brush my teeth standing up again. (Yes, it’s gotten that bad.) To achieve that takes time. Right now my homework, which I have been completing dutifully, is to sit up for 2 hours a day.Â
It may not sound like much but let me tell you it’s a lot for this disabled human. I hurt in an accomplished way though, and I’m determined to be able to do more for myself. Eventually.
After just one day of PT and a couple days of homework, I feel kind of amazing. My right foot has been turned inward and immobile for a year, and I’m hyperextending my knees and leaning forward to compensate for the imbalance.
Just having someone tell me that has made me a lot more mindful of how I can correct it.
In other news, I also got a fantastic mug this week from a friend. Its from Little Eden Pottery.
My left handed writing practice continues and I got a new stencil for making Zentangles that I will write about as soon as I am able.
That’s all for now. Hope you’re having a great weekend.
As the anxiety subsides, I’m feeling more and more like doing stuff. Here on the blog, and in real life. So I’m circling the block, looking for a place to park the struggle bus. More on that in a minute. First, how I’m doing:
I’ve been taking Lexapro (escitalopram) 5mg for a little over three weeks now, and it’s working in a cascading fashion. One good thing clears the path for another good thing, and I’m here for it! The most significant good thing I notice is that I’m sleeping so much better. I was depressed for sure, likely due to the constant anxious thinking and lack of sleep.
With anxiety down, I don’t buzz with panic as soon as I turn the lights off. Instead I feel sleepy. I have weird SSRI dreams*, and I sleep through the night (when my bladder allows, of course). Even Mom was like, “How’s that Lexapro working out for you?”
Yes, folks, I have reached the portion of the anxiety deprogramming where other people are noticing.
I’ve started virtual EMDR therapy** and continue to use the Unwinding Anxiety app. Major muscles that were once in perpetual spastic contraction have started twitching. (Once upon a time, I would have considered the twitching an annoyance, but now it feels so good.) Overall I feel like things are unspooling nicely. I still have panic attacks far more frequently than I’d like, but I don’t feel helpless about them.
With my new moments of mental clarity, I have decided that I want to make this blog and website more for me. I love you all and enjoy thinking about what my audience wants as I was trained, but I need an outlet for my stress and to give myself permission to play. It may not be noticeable to you, but it is a seismic shift in how I think about what I do here***.
So without further ado, here’s what to expect going forward:
transitioning my memoir chapters to personal blog essays, published at regular intervals
functional and aesthetic updates to the site
continued guest posts on related topics
continued day-in-the-life, review, and chronic illness ramblings
Earlier this week I took a normie shower (as opposed to bathing with cleansing cloths) and a few hours later I was mulling over how it went and the progress I was making when I realized the water didn’t feel like razors cutting me open. I thought to myself, “That was so normal I didn’t even notice how unpainfully normal it was!”
I’m amazed at myself. People, including me, who thought I had strength and resilience when I was diagnosed with cancer should be in awe right now. GAD and panic attacks are the hardest things I’ve endured to date. They make the existential crisis of living with an inoperable brain stem tumor seem trivial. When people tell you they deal with anxiety, I hope you’ll be the kindest person you know how to be. TGIF, kids!
** I have thoughts. I’ll probably blog about them in a future post. For now I will say that I thought EMDR was just woo but it’s not, and it’s helping.
*** For example, I remember (wrongly) thinking to myself many years ago, nobody wants to read about good things. I need to make this blog all struggle bus, all the time.
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.
