Self-Care Shenanigans
Thursday, December 11, 2025
Bone Loss PSA
Sunday, October 26, 2025
Choosing (Metaphorical) Violence
Thursday, September 11, 2025
Wild Eye Exam, Daddy Algorithm, and Proteinstravaganza
"Once you've gone through this surgery, you're going to be experiencing menopause from day one. You'll need a lot more protein to keep yourself going."
"Your brain needs time and a lot of protein to heal."
"Protein helps your thyroid meds work better and also you'll heal faster."
"I know you gained 55 pounds after your surgeries. Try increasing your protein."
"Your energy isn't coming back up after your surgeries because you're not eating enough protein."
Lather, rinse, repeat, like seven times. No joke.
Do you know how many of those seven times I listened to this advice?
None. I listened no times.
I've been told for the past four and a half years that I have to drastically increase my protein intake. By how much? I have no idea. How the hell much protein is a person even supposed to get in any given day?
Fuck if I know, but those were questions that I've asked and gotten no answers to until recently.
Seriously. I've been to three nutritionists. "Eat more protein" is the entire sentence. When I ask how much, "Play around with it and see what works?" is the response I've gotten every.single.time.
EVERY SINGLE ONE.
Even my holistic nutritionist had that answer when I asked her. "It's different for everyone. Just play around and find out what works. You'll need a lot."
HOW MUCH IS A LOT?
WHO KNOWS.
So, fun fact: I started on a GLP-1. I'm currently in week 5. It was time. I'd tried a lot to lose weight, it all messed with my guts, so it was time to try something different. Zepbound city, population me, here we come. The doctor that I met with was like "How much protein do you get in a day?"
Sigh. Here we go.
I don't know, like 30-40 grams?
"Oh. That's not nearly enough."
No shit. I didn't even ask because I expected the same answer, AND THEN she just...came out with it:
"Shoot for 80 grams a day for the next month with 100 being the ideal. That's where I want you based on your medical status."
I GOT AN ACTUAL NUMBER.
So, what did I do? What any rational person would do, truly.
I bought all of the protein powder. Bought protein bars with 25 grams of protein in them. Just bought all of the protein.
See? I do listen when I'm told medical advice. I just need to know what to do because I don't have a medical degree and I'm not a registered dietitian or a certified nutritionist, and so I don't have these facts at my disposal.
It's working. You know why? I've lost weight for the first time in four years. Finally, something that works. I didn't even have to make hugely drastic changes in my diet other than increasing my protein. My body has been in such shock that it hasn't known what to do since the surgeries, and that is what has prevented my weight loss. That comes from my PCP AND my functional medicine doctor. I'm really stoked about this, because not only am I losing weight, I'm sharper than I've been in literal years. (Going back on ritalin has certainly helped, but so has the massive amounts of protein I've been eating.)
Will the weight loss set me back to thyroid surgery levels in my vocal cord recovery? I got a resounding yes from my voice doctor a couple of weeks ago. That's both disappointing and annoying, and I've already started to notice even only losing 15 pounds. I'll be back to sounding like Marge Simpson again eventually, which means another fat injection surgery. That's disappointing, but also at the same time, he's going to help me figure out why I lose my voice entirely after I run, and also getting another injection will be easy peasy once I'm at my goal weight, just like it was the first time. If it goes as quickly as it has been, I'll be there in no time. Also, it's Dr. HotPants, and he's also monitoring me every six months for nerdy reasons. Swoon. (He's doing a study on how being on a GLP can affect fat injections in vocal cords, since the fat injected is from the abdominal cavity. HOW COOL AND NERDY IS THAT.)
Also, fun fact about me:
The algorithm diagnosed me with IBS and SIBO before any doctor did. I started having terrible digestion and all of a sudden I started getting videos across my feed about IBS and Ulcerative colitis and SIBO.
That’s literally exactly what it was that I had. (They’re still ruling out UC. I’ll know for sure in October.)
The algorithm also low-key diagnosed me with Harlequin Syndrome (which I call Channeling my Inner Two-Face), and potentially the meningioma.
Wild, amirite?
So, imagine my shock when I came across this video.
https://www.facebook.com/share/r/1Atf9dB31q/?mibextid=wwXIfr
I sent it to Rob, and you know what he did? Laughed. Laughed long and loud. You know why? That’s 100% me.
Thank goodness it’s a running joke with my PCP that the algorithm diagnoses me with stuff, because I sent this to her and was like “How do I get this testing” and she was like “I trust that you know your body, so let’s get you in to see someone.” She wasn’t able to get me into the MGH network, which is fine, so I saw a doctor in NH for it.
I went through the testing last week and her offices aren’t very soundproof because I heard her say “Holy shit” when she was going over my test results. I’ve had that happen three times, once when I was getting my first brain MRI and then they wouldn’t show me, so that was cool.
ANYWAY.
I go through this testing and let me tell you, I AM BOMBING IT. I was doing just terrible and I knew it. Also something I’ve heard multiple times, “It’s totally ok! You’re doing great. This is why we’re here.”
I can’t decide if that’s reassuring. I heard it in my vocal therapy assessment, during my SIBO testing when I almost threw up in the waiting room, and now this.
Anyway. The punch line is that I have, and likely have had it all my life, Binocular Vision Dysfunction. Essentially what that means is that my eyes don’t talk to each other. They also don’t communicate with (in either direction) my brain correctly. My neuro-optometrist literally sat me down and was like “Wow. You’ve been suffering a long time. I’m really sorry about that.”
She then explained that there are things that have clearly been going on for a long time, if not my entire lifetime, and some stuff that’s only been going on since my surgery, but it’s all treatable.
Ready for some wild stuff? Here are the symptoms:
Eye strain and fatigue: Only every damn day.
Double vision: I didn’t think this was a thing literally until this wild eye exam. I literally blurted out “WHY ARE THERE TWO OF THEM I KNOW THAT’S NOT RIGHT” like four times when I was supposed to be looking at those stupid damn dots.
Blurred vision: I thought this was just a thing and also part of being 45. Nope!
Headaches, often located behind the eyes: Where do my migraines start? One of two places - behind my left eye or on the left side of my neck.
Dizziness or balance problems: I’m literally the biggest klutz you’ll ever meet. I’ve broken things from tripping on stuff. Like on my body. Also inanimate objects.
Motion sickness: I -cannot- be a passenger in a car unless I’m forced to be because I can’t drive. Then if I don’t sleep, I’m miserable after five minutes. I seriously considered asking to not be put out for my annual colonoscopies so that I can drive home from them. I won't, because propofol is amazing and who on earth wouldn't want that nap, but I've strongly considered it.
Reading difficulties: Yup. I haven’t read a single book since my surgery, but not for lack of desire to read - I just can’t.
Poor depth perception: YUP.
Eye pain, especially when focusing: YUP.
Sensitivity to light: Especially bad with migraines, but low key all the time
Neck pain and stiffness, shoulder pain: At several points of my life, I’ve needed assistance getting out of bed because this has been so bad.
Difficulty driving at night: Check.
Anxiety and stress: Checkity check.
Clumsiness and coordination problems: All of the checks.
I.HAVE.EVERY.SINGLE.SYMPTOM.
So! I start vision therapy in two hours. The first step is to break down the things I’ve been doing behaviorally to accommodate it, which is terrifying and sounds painful, but is also entirely necessary. At some point, I think it’s likely that I’m going to get some prescription prism lenses, but we’ll see what that means and what it looks like. First, I’m to do eight sessions and then check progress.
I'm now at the stage where I'm starting to feel a little validated without feeling rage. That feels nice. When it comes to medical stuff, I usually can't feel validated without the rage.
We'll see what this next thing brings!
Thursday, July 31, 2025
The Click
Thursday, June 12, 2025
The Magic of Silence and the Magical "How Dare You"
Friends, I switched therapists. I love my old therapist and always will - she shepherded me through some of the most difficult times of my life. And, I needed a new perspective.
One of my friends asked me recently what makes good therapy, and I've recently been able to put words to it after two sessions with this new person:
It's "OMG THIS PERSON IS FANTASTIC" combined with a healthy dose of "How dare you".
This woman has now broken me open twice, and I'm going to put myself through this weekly until my anxiety becomes manageable and I no longer want to blow out of my own business. You know how she's doing it? By just fucking...sitting there. She said maybe ten words in our entire session a few days ago. What is that sorcery?
Making progress feels nice in this area, and I already feel it. The knots that have perpetually been in my stomach for almost 45 years feel like they're starting to undo themselves. I felt it driving home after my therapy appointment. It was pretty neat.
The progress doesn't come from the "OMG THIS PERSON IS FANTASTIC" part, even though that's an essential part of the dynamic. It actually comes from the "How dare you" part and then coming back again and again until the "How dare you" becomes manageable enough for you to work with it.
I find it unendingly hilarious that she doesn't talk. My old therapist talked more than she did (but also not so much that it was a problem - she interrupted my anxious rambling a lot, which was also sorcery in itself), and that also suited me just fine. I'm finding it a little unsettling that my new person talks so little, but I also understand deep in my bones that this woman's use of silence is the stuff that dreams are made of. I'll say something, then she'll just...sit there. Then out loud, I'll ask myself the question that she was invariably going to ask and I'll work through it. When she does speak, she asks pointed questions. Like "Why did you just apologize for that?" or "Why do you recoil at the idea of calling your business your baby? Why did you just say 'ew' to that? I did not expect that reaction."
Neither did I, Fabulous New Therapist, but there it was. There was the "how dare you" part.
She's also having me confront my medical trauma head-on. She put an idea out there AT OUR INTAKE and I looked at her and was like "hate that, hate this, and hate you a little bit, if I'm being honest."
Her response? "Yeah, that tracks."
She has me doing exposure therapy on top of all of the other shit we're doing. EXPOSURE THERAPY. I HATE IT.
For those of you unfamiliar with exposure therapy, you work to find out what your triggers are and work through them, one by one by one, by exposing yourself to them. All of my smaller anxiety/trauma triggers are more manageable, so we're starting with a big one because that's the one that I identified and I'm clearly a masochist, and it's got the most urgent need to be addressed.
I'm to go down to Boston for non-medical reasons as frequently as possible, ideally going down to Boston for no purpose whatsoever.
The first weekend of it, two weeks ago, I took some work down and sat at Caffe Nero (one of the like fifteen in Boston...I have a hunch that to some degree, I'm going to keep them in business by buying their chicken salad croissants on the regular) and just sat there. I expected it to go better than it did, quite frankly. I've been invalidating myself about how bad my anxiety is about going down to Boston. It's not about the drive, because I actually love it. It's about the idea that almost every time I go down there, I get poked or cut open or knocked out or some combination of the three or other Very Unpleasant Experiences. It's not helpful that the very first time I drove in Boston, it was for an emergent CT scan and MRI because I'd had a headache for eight days and my neuro team freaked out. It also doesn't help that the second time I drove down to Boston was to get myself to my emergency cerebral angiogram, and the third time was to get myself checked into a hotel because I was having brain surgery the next day. This is what I'm talking about - it's The Problem. What has been happening is as a result of the trauma reaction I have when I'm in Boston, I do things like barely sleep for days before I have to go down there, no matter what the medical appointment. If I'm down there for multiple days, I sleep VERY little. For instance, during medical week, I averaged 3-4 hours of sleep per night. The night before my vocal surgery, I slept two hours. Granted, I had the nap to end all naps the next day, and then I proceeded to sleep an extraordinary amount in the ensuing days, but that's not the point. I want to be able to not freak out.
Anyway. So I'm sitting in Caffe Nero, sweating and shaking uncontrollably for no reason, and I recognize that that's happening but don't connect the dots until I get in my car to go home and immediately calm down.
I thought it was because it was cold in the cafe. SNORT. Nope. My car was colder and I shivered not one bit.
Then last week, I was flying out and back from Boston, and I did ok with that except entering the wrong way into the parking garage of Logan Airport, which is the very definition of hellish. I figured it out and then was able to get my anxious energy out by running to my gate and walking in general so fast that I was getting a workout. I was able to be relaxed when it came time to sit in my seat on the plane. It was great and possibly the first time I've ever felt relaxed while also existing in Boston.
This week, we're going to Boston Pride. I feel excited about it because I think it's going to be SUPER fun, but I can also feel those familiar nerves bubbling. It'll get easier as I have positive experiences in Boston; it's already starting to, so I just have to keep trucking, even when I swear about it.
And I will swear about it. A lot. And frequently.
Wednesday, May 28, 2025
The Convergence of Lots of Things
Friday, May 23, 2025
Here We Go!
At my first appointment with my new functional medicine practitioner, we talked about a bunch:
Doctor: Wow. The on the symptom inventory, you scored a 106.
Me: Ok!
Doctor:...you're supposed to be under 30.
Me: ...oh. Well I am a bit of an overachiever.
Doctor: HA! Yes. Also, that's happening because your immune system is RRRREEEEEALLY POed. We'll get bloodwork to confirm, but that's my Very Clinical Expert Opinion. (No I'm not paraphrasing. This doctor is actually that funny and down to earth.)
Me: I reckon you are correct. How much bloodletting are we talking here? Should I be waterloading?
Doctor: Lots, and I assume your veins are terrible because I can only imagine the number of times you've been poked over the past four years, so yes. Gatorade it up. Also we have to get you to eat more of the right things. And we HAVE TO HAVE TO HAVE TO find out if you have celiac. Have to.
(I really like that she just...said that. Usually it doesn't occur to doctors that I basically got poked by needles for a living for three years.)
Me. Agreed! If I do in fact have celiac, I'm all in. I was gluten free for five and a half years and we were strict about having a gluten-free household. It's totally doable. I just need to know.
Doctor: Well...keep eating it for now, and we'll get you an answer with this bloodwork.
Me: Cool.
Doctor: But also start drinking smoothies again. Smoothies good. Skipping breakfast every day bad.
Me: I mean. I don't skip breakfast technically. I just eat it really late.
Doctor: Breakfast at noon is lunch. You're eating breakfast for lunch every day.
Me: False. I eat dinner at 8:30 or so every day so I eat breakfast late.
Doctor: ...sigh. Ok. We've got some work to do. Here are all of the blood, saliva, and stool test orders. I want to check your hormones, and I want to check your gut bacteria.
That day, we had a two-hour appointment, and then a week later, I had an appointment with a nutritionist. We're in the process of making a plan that can accommodate my shenanigans, both medical and just the shenanigans that are a result of how I exist.
Over the next six weeks, I did every bit of that goddamn testing. Even the part when I almost fainted when they took eleven giant vials of blood in one sitting. Ridiculous.
Yesterday, we sat down, and she said, "Ok. We have a lot of data. Let's be nerds for a bit and get some answers, yes?"
Yes, please.
In short, my gut is a mess, as is my stress response, as are my thyroid numbers, and they're all connected because of course they are.
I've been having thyroid issues since I was 16. In the past four years, my entire life has been turned upside down by thyroid cancer, the fear that comes with that, and also never being able to get my thyroid numbers under control. She explained to me in human terminology how my thyroid numbers work now that I no longer have said thyroid, something that had never been explained to me in a way that I understand.
So basically, I take my thyroid meds. It's all T4, which is fancy iodine. Then my body converts as much of it as possible to T3 and throws the rest away, and that stuff is Reverse T3.
My body, because my gut is such a mess, is not properly processing my thyroid hormone. My T4 is high because it has to be in order to suppress my pituitary gland, but it's not converting to T3 as effectively as it should be. I knew this but didn't have the information to back it up. In turn, the more out of whack my thyroid numbers get, the worse my gut gets. Then the worse my numbers get. Then the worse my gut gets. And on and on and on.
I've been stuck in this feedback loop for four years. This means unending and overwhelming fatigue. This means a total inability to lose weight. THIS MEANS GUT ISSUES THAT LANDED ME IN THE EMERGENCY DEPARTMENT FOUR TIMES IN 2024. This means my body not being able to handle stress the way it's supposed to. As a result, my nervous system is on the fritz, which makes literally everything harder. The second she said "I literally gasped when I looked at your bloodwork because you have the highest Reverse T3 I've ever seen," I knew that I had my answer right there.
The best part? She's going to talk to my endocrinologist so that I don't have to. He does what he's supposed to, which is make sure that my cancer doesn't recur and we have a plan in case it does, but that's literally it. He's also kind of a turd, so I don't mind only talking to him once a year.
Also amazing? "Don't do low FODMAPS anymore. It's not going to help. It may be getting rid of your IBS symptoms, but it's not fixing the problem."
Good, because I quit even doing it badly months ago.
So I have some dietary stuff to look up because there are some temporary changes, but I'm definitively and confidently on my way to where I want to be.
Sweet Baby Jesus am I ready.