I don’t even know where to begin. So I’ll just say what I feel: Eat a bowl, haters
The last few days have been epically bad. First I went on nortriptyline, then I got notice my divorce forms had mistakes, then I went off nortriptyline, then Rudy got mad at me, then I had a neverending panic attack, and then I got brain zaps. And I still can’t feel my hands.
To deal with panic attacks, my primary put me on nortriptyline in addition to the Lexapro. Mom is pretty sure I had a seizure on the nortriptyline, which I’ve taken before. I didn’t anticipate a problem except for being groggy.
It was a problem though—I couldn’t remember how I got into a wheelchair—and I feel like I have regressed, not improved. Logical Me knows that’s not how any of this works and recovery is not a straight line but Reactive Me is worried that this is permanent. That I will never get better.
In the middle of all of that, I got a notice from the divorce people that stuff was wrong with my paperwork, and in trying to fix it I kept creating more problems. So I’m in limbo until I hear back. The last I heard was something like “will mail these to you if all looks good.” That if is doing some seriously heavy lifting.
After 2 weeks of giving nortriptyline a shot, it was clear it wasn’t working so I went off of it. And like going off of all antidepressants it wasn’t a lot of fun. My blood pressure bottomed out to the point I was fainting just trying to sit up. Of course no one believed I was that sensitive to that little dosage, so I had to overexplain myself and not say “fuck you” to everybody who was worried. The restraint nobody knows I’m spending energy on y’all.
Then the other night Rudy got mad at me. He said “f [my] attention” which he explained away, but it’s just not sitting right with me. I have a standing agreement with myself not to make any regretful life decisions on weed or suffering withdrawal from antidepressants, so I’m biting my tongue.
But it feels razor sharp in my mouth right now. If there’s one thing I can still cling to, it’s my impulse control. I think that comes free with every anxiety disorder. That whole fawning to save my life thing.
Speaking of anxiety, all of this chaos has given me one rolling panic attack. As soon as one clears, it feels like another is on its way. It’s disheartening because I was actually doing quite well…
I’m sorry, I must interrupt. My blood pressure is still really low, but I pooped! This calls for a celebration! Please happy dance in place.
The Brain Zaps were intense and numerous yesterday. They have been weaker and fewer so far this morning. I’d like for them to have not happened, but it’s not for nothin’ I’ve been called hypersensitive to drugs.
And last but not least, my hands. I can’t feel a damn thing with them right now. So it’s super hard to use my phone and eat. Trying not to get trapped by anxious and depressed thoughts with all of this going on?
I’ve been eating and brushing my teeth left-handed. How about learning to write left-handed too?
When I went to the doctor last week, I filled out the laminated anxiety assessment form. Standard procedure for most primary visits these days, but particularly for a patient on Lexapro.
“You’re using your left hand!” Dan said.
My right hand is simply too weak to hold a pen, and has been for a while, but wielding that dry-erase marker in my non-dominant left hand was possible. So I gave writing with it a shot. A few poorly drawn circles and a legible “7” later, I was like, “Hey, maybe I can just, like, write left-handed.”
So I’ve been practicing and posting my progress on Bluesky. If you follow me there, you probably know how far I’ve come already.
My maternal grandmother had the most gorgeous handwriting. The script she learned in school was different, more elegant than the D’Nelian I learned as a kid. But she had a beautiful flourish on top of it that I wanted so badly to mimic.
I never achieved her level of penmanship, but all those years of trying did help me fine tune a neat and tidy style of my own. Trying to transfer that from my right to my left hand is challenging. I have to take great pains (and I do mean pains) to be slow and mindful with each stroke.
I’m not displeased with my progress at all, but I will continue trying to improve my speed and legibility. My first goal is to be able to fill out my MRI form myself in June, when my next regular MRI/CT is scheduled.
Here are the other practice sessions I’ve completed, including trying some Zentangle patterns on Day 7, which I’m thinking of making a thing—to give myself a different challenge so things don’t get too boring.
Someone wondered if workbooks for writing would help, And that sounded like a pretty good idea to me. So I’ve added a few things to my wishlist and for now I will keep practicing with unlined paper. It’s more difficult to maintain even spacing, but that’s part of the challenge—and the fun!
Some of you will recall that my old blog from a decade ago was called Two Write Hands. Self-fulfilled prophecy, baby!
I’m sipping coffee and contemplating how yesterday’s appointment with my primary doctor went while snippets of Brandi Carlile and Elton John’s “Swing for the Fences” are lodged in the part of my brain that randomly recalls earworms.
Though the doctor appointment wasn’t physically groundbreaking for me (still had a panic attack), I did fare pretty well mentally. Most notably, I didn’t apologize all over myself for needing Dan’s help.
The intent when I do this is selfless, but the wishy-washy way I ask for help is exhausting for me and annoying to Dan. It makes things worse, but it’s habitual and hard to overcome. It originates from a place of worry about being high maintenance and not worthy of the fuss, but that worry sets off a cascade of anxiety and panic that ends in elevated pain and paralyzing contractedness.
Needless to say, I don’t care much for that.
One of the giant swings I took yesterday was requesting a referral for in-home physical therapy. I wasn’t feeling as excited about it as in the days leading up to the appointment, but I followed through anyway. Being mostly bedridden has taken a toll, and it can only be helpful to have some strength and coordination and confidence back—however much or little it gets me.
Right now, I only have a doctor’s referral for the PT, and I’m waiting on a phone call for a consult. So more about that when it happens. If I could brush my teeth or just hold things without a death grip, I’d consider that a win.
Another thing that feels like progress to me: I requested my Lexapro dose be upped from 5mg to 10mg. Ten is actually where my doctor wanted to start me, but in an anxious reflex I requested the lower dose to start out. (As previously mentioned, I am distrustful of antidepressants after a couple of bad experiences.)
So I took my first 10mg dose this morning with my mug of coffee and a swig of hope. Here’s to continued progress.
Mom noted how much more chatty I’ve been on Lexapro, commenting how before I was so tired I could barely speak. She is for real. Before I didn’t have the energy to think or talk. That’s how tired I was. All the time. I’m sitting up more and using my laptop daily, not just my phone. Also signs of improvement.
With decreased anxiety comes better sleep. A life of insomnia is debilitating, even without anything else to force an error. If you know, you know. And I’ve noticed lately that my anxiety is up. (Very good chance that’s about anticipating medical stuff.)
My sleep hasn’t been terrible, but it hasn’t been as good, so 10mg it is. I don’t want to have completely sleepless nights again. Not that I expect to have Lexapro do all the anxiety work, I just feel like the double-play clears a few bases. The help is nice.
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 had a dream the other night that Hugh Grant was making egg souflé in a spinning metal mixing bowl with sizzling hot oil on the living room carpet of my old house and in the dream I kept thinking to myself, “That’s not how you make souflé.”
** 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.
Three days in a row I had to deal with some stressful things. This is my anxiety progress report on those things: showering and a haircut Sunday, cleaners cleaning Monday, and an oncology appointment Tuesday.
First, before I take on these things individually, I need to take a moment to remind myself that doing three days of stressful stuff before now would have been unthinkable, but I’ve been doing virtual, self-guided therapy and taking Lexapro and things are changing for the better.
It’s amazing that I attempted them. Before-Anxiety Disorder Emily wouldn’t have thought much of any of this. However, the Emily that has panic attacks just because would have needed days between each thing and will still feel horribly incapable.
Whew! I was having depressed, anxious tantrums a couple times a week. I’m so glad something gave, and it was the anxiety—not me.
Showering
Mom buzzed my hair for me. A completely passive and calm experience under normal circumstances, but with panic? Totally draining. And then there’s the shower.
This is still quite difficult for me, but there were moments the running water felt good, and that is huge.
Before, the water stung and I could barely move. Now I get a few minutes of “Hey, this experience isn’t a sensory nightmare!” before the awful sets in. Which may not sound like much now that I’m writing it, but it is significant. I promise.
I slipped getting up which caused all my muscles to seize panfully, but when Dan wheeled me back to bed I didn’t shiver from panic and recovered quickly. I also stood up and transitioned to the bed smoothly.
Cleaners
Every two weeks a lovely crew of about three or four cleans the stuff we just can’t: floors, the shower, etcetera. We round up the cats and get out of their way so they can work efficiently.
In the past, this has triggered panic attacks that basically paralyzed me. I could barely get in and out of the king bed. I often tell Dan I feel like a beached whale when this happens. I can’t move my arms out of my body’s way. I can’t reposition myself. I can’t roll over. He’d have to help.
Then that level of immobility would create a feedback loop of anxious thoughts in my brain that would cause my freeze response to double- and triple-down on the terrorizing, panicky spiral.
I’d worry I’d be stuck there. Worry Dan would hate me. Worry I’d hurt him somehow with all the physical help I needed.
Worry. Worry. Worry.
Yesterday, though, I got into and out of bed myself.
Oncology
I went down two steps into the garage yesterday instead of using the ramp—with a lot of help. It wasn’t at all pretty, and there were a couple times I lost my balance and Mom said “whoa!” as she looked on. But I tried.
The attitude of “let’s see if I can do this hard thing” is its own step in the right direction.
At the cancer center follow-up (which only included routine stuff, yay!) the phlebotomist noticed it was a couple of days past my birthday. We discussed cake—always a pleasure—and she gave me a toy ring as a present. I’ll leave you all with a very short video of the light-up ring in action.
(There are flashing lights, so if that’s problematic for you, don’t press play.)
And that’s my anxiety progress report. More about the various treatment thingies I’ve been trying, too, in a future post. I’ve been trying EVERYTHING.
i started taking Lexapro instead of Xanax for anxiety. Xanax made me feel groggy for too long, and the sluggishness that accompanied it was sure not helping my mood or the paralyzing nature of the panic attacks and prolonged anxiety I was experience.
Wow. Is this what it’s like to not be anxious? I think I like it. What a humongous relief it is to shut off panic mode.
My mind was still racing a lot, but the thoughts were happier, not anxious or depressed.
Day 2
Panic is more noticeable today but likely same as yesterday. The shock of relief is wearing off, and I’m adjusting accordingly. Still feeling better and moving easier. Still grateful.
A lilttle bit of nausea today. I took the med with coffee but not food. (Too eager to take more and didn’t wait until breakfast was ready.)
Was up at 2 a.m. with my standard panic attack but instead of ruminating on how awful everything is I was thinking about all this stuff I might be able to do in the future.
Just this side of an IBS-D flare. I suspect adjusting to the new med has my guts feeling dubious. Plus less pain has meant a better appetite and they might be adjusting to digesting increased volume of food.
Day 3
I slept 8 straight hours! Booyah!
I feel like the mindfulness and meditation are just new skills I’m learning instead of beating myself up for doing something else wrong. It feels pretty profound, actually.
Still having panic attacks, but they aren’t triggering more panic attacks in an unending loop. I’m so relieved.
Still muscle plenty of muscle pain.
Day 4
5:30 am
I am awake after having a weird-ass dream. My muscles are incredibly tense and I am buzzing.
Nothing new, just everything is…weirder?…than usual.
It feels like withdrawals but I’m Zen about it? My brain is like, why are we not panicking anymore? We don’t know how to operate like this!
One of the books I read (Unwinding Anxiety) likened anxiety disorder to addiction. The brain essentially operates using similar mechanisms and forms a habit.
And this buzzing feels like that week I unwittingly forgot to take amitrypryline for pain because I didn’t remember to put it in my pill sorter thingy.
Take your meds, Emily.
5:30 pm
This is a rough time to deal with an anxiety disorder. Nevertheless I plod on with the Lexapro.
I hurt. I can’t tell if my muscles are residually sore or freshly spastic. Maybe both.
There was definitely a panic attack about 1:00 am, and I haven’t really felt relief yet. I thought it would have passed by now but yesterday’s news cycle was a lot, and panic might be appropriate even without an anxiety disorder.
Day 5
I feel more stable mood-wise. The first couple of days had me feeling pretty high.
Overall, I feel like it’s helping. I took a little break from mindfulness and let the med do the heavy lifting. Kinda nice, honestly.
Day 6
Today was a very typical day for me. I didn’t notice any progress, but nothing horrible either. Just kind of so-so with anxiety today.
It’s there, but it’s not constantly up in my peanut butter.
Day 7
Happy birthday to me!
No racing heart this morning and no internal buzzing sensations.
My tummy is a little tight, but it’s my birthday. I’m coddling my tastebuds today and not my IBS. If I get uncomfortably flared, I’ll accept it and ride it out.
Overall, this is the most me I’ve felt in a long time. I’m very hopeful that this med will help me move through my self-guidef anxiety therapy at a quicker pace. The sooner I can manage the anxious intensity, the better.
I’ve been on 5mg Lexapro for GAD and panic attacks less than 12 hours—that’s right, one pill—and I feel like I have myself back. I still plan to use edibles and cannabutter to make life easier. Quality of life mattes.
I’m no stranger to antidepressants. There was Cymbalta. Then there was nortriptyline. Then amitriptyline. All prescribed off-label for pain. The only one of those I really, truly despised was Cymbalta. The other two just made me feel foggy. Not ideal, but not a major threat.
But Cymbalta. Whooooo. That hit different and in terrible ways.
If you’ve been one of my pocket friends since before the brain tumor, you know the story. If you haven’t, I’ll save you the clicks. The TL;DR is that Cymbalta made me feel like not me and going off it made me violently dizzy and nauseated, and I absolutely hated every moment I was on it.
…I’m taking a break to eat a pint of gelato. BRB.
…aaaand polished that sucker off in record time. I’m back, baby! Not giving IBS a second thought when ice cream is involved. That’s authentic Emily, right there.
I missed her.
Now, I’ve considered that it’s too early to say Lexapro is working. My biggest problem with that is I have been quantifiably miserable, immobile, anxious, and swimming in neuropathy for about two years and I swore to myself if I ever felt relief I would bask in it.
This is me basking.
My primary doctor said it could take up to 8 weeks for Lexapro to be therapeutic. So I don’t know if if I’m dealing with the effects of my hypersensitivity to drugs or if I was in such a horrible state of constant panic that small reductions in brain activity feel like huge-ass miracles.
I don’t really care about the biological mechanism. It’s like the doctors say: We don’t know why it works; it just does.
I never thought I’d feel like I inhabited my brain again, so I’m going to revel unapologetically. Because freedom from the constant choke hold of my neck muscles, the grainy vision, and the paralysis might be fleeting.
Yesterday was full of hard things. Chiefly, I had a follow-up appointment with my primary doctor in which we discussed my hatred of Xanax (just too groggifying for this already brain-fogged princess) and she prescribed Lexapro.
I’m at a point in my anxiety work that I think I can take a new medicine without it necessarily triggering a panic attack. I mean, it may still lead to one, but it’s not a given. Panic attacks don’t last as long anymore anyway, and I feel like the benefits of an assist in this mental health challenge outweigh any trigger risks.
Plus, it’s entirely unreasonable for me to avoid taking new meds when I have cancer. Got to jump back in at some point. Might as well be now.
With each new day, I am discovering just how physical panic and anxiety are. Everything—down to my PEM, buzzing sensations, and the feeling I am being choked out—improves when the anxiety and panic attacks subside. My blood pressure is down.
I’m still at a point where the improvements are for the most not outwardly noticeable. But I feel the difference. (Like when I’d exercise but no one noticed because my weight didn’t change.)
I know things are different, and that’s enough.
The one exception might be that IBS symptoms are much better. I’ve been reclusive, trying not to get the flu and various other germs, so Dan might be the only one who sees this change. And he may only be aware because when he brought up how slowly we’re going through toilet paper, I mentioned that’s probably got something to do with IBS flares being fewer and farther between.
I still worry too much what other people go through because of me, but I’m a work in progress. That’ll ease up too.
In the meantime, I will remember to commend myself for taking this on with all the doubt I have internalized over the years. I thought brain cancer was going to be the hard thing. Ha!
