Bone Loss PSA

Here's the great thing no one tells you about yeeting your reproductive organs and your thyroid. See also: Going through menopause.

Well. They tell you. But they don't, like, make a big deal about it.

I'm at high risk for bone loss. My doctor literally told me that with a shrug and said, "No big deal. We'll just do bone scans every two years." I have osteopenia in one of my hips, but it's more of a "Watch and wait" scenario, so nothing to be done about it. I'm not in any kind of pain, I'm not worried about it. I mainline vitamin D every morning and move on with my life.

You know what bone scans don't look at, or at least don't pay much attention to?

Your feet.

Your hands.

Your toes.

Your fingers.

Really anything below the elbows or the knees that isn't a major joint, doesn't get all that thorough of a look. However, in doing some digging, those places are where bone loss is most likely to show up first.

They're concerned about bone loss in the hips, pelvis, ribs, and spine, which I get. Those things breaking sounds unbelievably painful and have a bigger impact on quality of life than, say, your pinky toe. I just wish I had known that before I started agreeing to them so that I could advocate for my whole skeleton to be scanned, because there's absolutely a way to do that.

So two years ago, when I was catapulted off of my front steps by my dog and broke my hand instead of breaking my face, there might have been a reason for that.

Or, the other day when I had a knitting-related accident (and I 100% am sticking to that story simply because it sounds hilarious and is simultaneously true), maybe under different circumstances, my foot wouldn't have broken. But the circumstances are what they are, so I hobble in a boot for the next two weeks. Thankfully it's just a chip off of the outer bone, but it's painful and annoying. 

So, if you're a human who has lost hormone-producing organs in a surgical manner, or if you are going through perimenopause or menopause, ask about bone health at your physical. Just do it.

Also, do strength training. I've now heard from three different medical professionals in the last six months that strength training is the key to bone strength. That's the blessing in all of this, if there is one to be had - now I get to get jacked because I can't currently walk very far. So, strength training it is.

Choosing (Metaphorical) Violence

NOT TODAY, FBI,  NSA, OR ANY OTHER GOVERNMENT AGENCY MONITORING MY SHIT. I am not a violent person, I have no actual physically violent intent.

What I’m actually talking about is showing up for myself.

What I’m also talking about is sitting with and accepting, nay, embracing, the idea that I am not as likable as I used to be. And also that it’s not that I like people less, it’s that I’m finally able to sit with the idea that people? Not a huge fan, generally. I’ve also never admitted that before recently. Not because people are by and large bad, but because for…we’ll say 40? 42? of those 45 years, I was absolutely, unequivocally, surrounding myself with the wrong people.

It feels nice to say that out loud and take ownership of that. I’ve been investing my energy into being liked, and sometimes loved, by people who will never in their lives treat me with even a shred of respect or humanity, no matter what I do. So I stopped trying. That happened about two years ago and I’ve been on this crazy path of fully owning my worth ever since.

Has my job hardened me? Maybe. I’m not so sure. If anything, it’s woken up a side of me that’s been sleeping for too long. 

If I could pinpoint the actual reason, it was 20 years of medical gaslighting that has resulted in now five entire years of an onslaught of unending medical trauma, and how that unleashed a tsunami of complex trauma in other areas of my life that I didn’t know existed previously, but you know, I could be wrong!

I could be wrong.

For a long time addressing this stuff felt like going to said tsunami armed with a paper towel, and not even one of those normal-sized ones. One of those ones that you rip off and it ends up being like a tiny sliver of a paper towel. I’m finally making headway, and this is my sign that I’m around the right people.

I’m constantly bringing up to my clients that adage of, “Before you diagnose yourself with depression or anxiety, first make sure you’re not surrounded by assholes.” I was so deeply entrenched in making it work with the people around me that I didn’t apply this to myself. I had legitimately emotionally violent people in my life who actively benefited from me putting up with their abusive behavior, and I almost refused to look at it, because that was more painful than just keeping what I thought was the peace. My peace didn’t matter in any of these relationships.

So, surrounding myself with the right people: Ongoing. Still have to break Very Old Lessons and Habits that tell me that I don’t get to choose 100% of the people who come into my space, mentally or physically. I sure do. Everyone does. I don’t have to put up with anyone’s bullshit, no matter how close we were previously. (And 99% of the time, we weren’t that close in all actuality, which showed itself THE LITERAL SECOND I got healthier and started to have boundaries.)

Not allowing abusive behavior, PERIODT: Ongoing. To show how far I’ve come in that department (though I still have a long way to go, again, old habits and lessons and shit), one of my very first staff members called me a fucking asshole in a meeting AND I PUT UP WITH IT at the time. Did that person leave a few months later? Yes. Did I ever speak to them or their spouse, who was one of, if not my absolute best friend because I couldn’t allow that kind of venom anywhere near me ever again? 

I realize the way I asked that question was weird. I haven’t spoken to either of them since.

Do I now call people out for, for example, “well actually”ing me because their only reason for doing that is to try to embarrass me publicly and fuck that noise? YUP. Do I call people out for getting defensive when I discuss my experience of something and they’re uncomfortable with it? Sometimes, but even if I don’t, I know what’s happening and I’m able to acknowledge that people’s discomfort with my experiences of them is not actually a “me” problem.

Do I allow people to foist their insecurities masked as judgment on to me? NEVAH.

For so long, I’ve shrunk myself for the express purpose of making other people comfortable AND trying to control what they thought of me.

So where do I go next in this campaign to choose violence?

MY MEDICAL TEAM.

Two things are currently in process:

1. My gastroenterologist, now that it’s Officially Official that I have Barrett’s, is trying to put me on Pepcid. Barrett’s is a pre-cancerous condition of the esophagus, caused by GERD. I’ve gotten the GERD under control this year - so much so that my guts were “flawless”, save for some tiny spots of inflammation in my esophagus and ONE polyp in my sigmoid colon. (There was also some scar tissue on that spot because a polyp has appeared in now five colonoscopies in that exact spot, but the previous four years, it was precancerous. This year, just benign. For reference, my first colonoscopy yielded 13. Also I way overhydrated this year, but I learned a very important lesson about chugging the prep solution and how totally important that is.)

Anyway, I said no. My doctor did this kind of head tilt at me and was like “I’m going to call in a prescription for it. Just take it once a day.”

Again, I said no. Pepcid has carcinogens, I’m very much entering into my “Let’s be very vigilant about what I put in my body so that I can minimize my cancer risk as much as possible” Era, and I’m not interested in trading one cancer for another, which is a lot like what this is sounding like. Was there anything else I could take that wouldn’t be as harmful?

No. Also I know how painful esophageal cancer is, right? And that any cancer that might be caused by Pepcid is certainly going to be easier to deal with and also esophageal cancer, unless caught SUPER early is a death sentence and I know that, right?

Pulling out the big guns early, but she had several good points and pointed me toward more literature about Pepcid and cancer risk and quality of life and things. 

The point that I made to her was this: 

I trust you, I do - and after twenty years of medical gaslighting that ended in me having my skull cracked open and a lifetime of cognitive difficulties that I’m now looking at, I trust myself more. Come at me with literature, come at me with scare tactics, whatever works for you - but this will be a dialogue, no matter what. I have a say, and I will make an educated decision - based on facts both in the literature AND in how my body works. Both are equally valid and no matter how you approach me, the validity of that will never change.

She high-fived me on my way out of the appointment. “Keep doing what you’re doing.” I have a flood of literature in my medical record to read and I intend to bring it to March Madness 2026 when I talk to my Lynch Doctor again.

Damn right.

Speaking of which…

2. There’s a vaccine. It’s in phase three clinical trials as of two years ago. It’s big.

Colonoscopies every 3-5 years instead of annually. People who don’t want to get rid of their reproductive organs won’t have to, and no more trading that for uterine biopsies twice a year if someone decides to keep them. No more doctors mentioning preventative double mastectomy in passing as if that’s nothing, which has happened to me three times in the past year.

Normal risk of all cancers. Regular prevention instead of hypervigilance. A life-changing development for people who have Lynch Syndrome of all stripes.

An option not available to me until I have five years NED (No Evidence of Disease - fun fact I learned at 2025 March Madness: Remission from thyroid cancer isn’t actually a thing because in one of the types of cancer I have, risk of recurrence actually goes UP at the ten year mark) under my belt, both for thyroid cancer and the brain tumor. That’s in exactly 12 months for thyroid cancer, and 14 for the brain tumor.

I decided I’m going to go armed with literature, consistently clear brain scans and thyroid ultrasounds, and not accept no for an answer in March Madness 2026. I’m leaving with that fucking vaccine or I’ll stage a sit-in in my doctor’s office. Both are viable options at this point. Next-level nerding is actively in process.

So, yeah.

Choose violence when it’s called for. Future you will thank you for the peace.

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!

The Click

My healing over the past three and a half years has not at all been linear. I knew to expect that because it rarely is, but also because both my neurosurgeon and my neuro-oncologist have told me so about a billion times. I left my appointments in March annoyed that I’d heard that again.

I get it and would like to move on with my life now, please and thank you.

Anyway. I’ll go through short periods of time when I’m doing great. Then stretches that I’m feeling just ok and then stretches of time that feel like they last forever and I’m doing awful and then…you get the drift. The bad times are getting shorter and shorter, and the time where I’m feeling ok, what I’d consider my baseline - not fantastic, but also not terrible either - is getting longer. The “holy crap do I feel fantastic” times are always short and fleeting, and I’ve become ok with that, actually.

The one part of my healing I’ve never been able to get under control is my sleep. I have some theories about why it’s so bad and also why having bad sleep is so distressing.

My entire life I’ve been a legendary sleeper. My ability to sleep through literally anything up to and including a train going through the house is the longest running joke in my marriage. I would sleep through the night, rarely wake up unless I was sick or randomly had to pee (which, no joke, literally happened maybe once a year), but once I was out, I was OUT. 

Then I had a hysterectomy. Then I had a thyroidectomy. Anyone who has ever had a medical procedure that messes with your hormones, or has gone through puberty or perimenopause or menopause, knows that when you hit those phases of your life, your sleep changes. That didn’t happen to me when I went through puberty that I can remember, so I figured that being shoved into surgical menopause wouldn’t be that big a deal.

At first it wasn’t. I was still recovering from the surgery and so I slept a lot. A LOT. I would say that the daily naps started after the hysterectomy and then just kept going from there. But during the night, I’d have super weird dreams, I’d toss and turn while asleep, but not wake up unless I had a pain or something, and my sleep was not super interrupted. I started to wake up more at night once I was fully recovered, but I wouldn’t be awake for more than a couple of minutes before I went right back to sleep.

Then I had my thyroid out. I started at a normal dose of thyroid hormone, and then my endocrinologist kicked it up several notches when I had to start suppressing my pituitary gland. Then I started seeing a new endocrinologist and he kicked it up even more. Then suddenly I wasn’t sleeping through the night at all anymore. This is one of those things where the shift was so sudden and alarming that I talked about it every time I was in front of a doctor. I’ll give you three guesses about what I was even offered to help. (If you’re wondering whether I would have taken a sleeping pill, the answer would have been yes. That’s how bad it was.)

If you guessed nothing, nothing, and more nothing, you’re right.

Fix your sleep hygiene. 

Don’t eat within the two hours before bed.

Don’t use screens before bed.

Stop napping.

Cool. Thanks. Napping was the only way for me to get through my day without falling asleep on a client, so that’s terrifying.

My favorite and most recent?

Don’t go to bed until you’re tired.

Here’s the problem. I don’t drift off to sleep. I have an on and an off switch. I am awake, and then I am asleep, and then I am awake again. That’s how my circadian rhythm works and has worked my entire life. So if I wait until I’m tired to go to bed, I will never again sleep in my bed because I will pass out on my couch and stay there until I wake up, which also happens a lot. That’s to say nothing of the idea that sometimes I don’t get tired until 2am. Sometimes I get tired at 8. Sometimes I have to force myself to sleep. And if I’m not home while I’m sleeping, forget it. Medical week, I averaged three hours a night. The night before my vocal surgery, I went to sleep at midnight and I was up at 2am doing diamond art, watching South Park (did you know that Comedy Central plays reruns of South Park through the night? Fun fact I learned!), waiting until a reasonable time to get in the shower. (I waited until 3:30.)

What has this resulted in? I haven’t had multiple good nights of sleep in a row in four and a half years. Like, not even two nights in a row. I’ll have the random legendary one-off, but that’s literally it. It’s been this thorn in my side the whole time.

I’ve had my hormone levels tested more times than I can count. That’s what I’ve been told is the problem this entire time. It’s just my hormones.

You know when the closest i came to getting normal sleep, hilariously enough? When I started on Ritalin. It calmed my nervous system and helped me operate in the world more regulated.

The only person who caught it or thought it might not be my hormones was my psychiatrist. “Your sleep normalized a little after going on a stimulant? That’s weird and not really supposed to happen. Your nervous system is not doing so great. How’s your stress?” We meet once a month and our entire conversation centers around my stress level and what I’m doing to keep it in check.

Nothing. The answer is always nothing.

I went off of Ritalin about four months ago because I started another medication that had stimulants and as it turns out, those two meds together gave me panic attacks.

My sleep got a million times worse. I tried the teeniest tiniest sliver of Ritalin, and all of it was a no.

But then I started seeing a functional medicine doctor. She put me on all of these supplements, and at first, nothing. Then I started to feel a little better. My head started to get back on straight. I started wanting to be more active. Then I started to be able to stay fully awake every day. Then my sleep started to get better. I wasn’t necessarily sleeping through the night at all, but my time awake was shorter and my sleep was deeper.

Then I started running again.

Then my head cleared, I felt the click that I feel when I’ve turned an huge corner with my healing. As a part of this, I made several monumentally huge decisions about my life over the last few weeks, the last and biggest this last Sunday. (That’s all I’m saying about this at the moment.)

I’ve gone to sleep at a totally normal time, slept through the night without waking, and gotten up at a shockingly normal time four nights in a row. I no longer feel trapped in my own head, or anywhere else for that matter. I can breathe.

I don’t expect this to continue. I expect that as these huge choices unfold, things are going to get stressful, but this time, I know there will be an end to it. There’s about to be a lot of uncertainty, but I can certainly tolerate that better than I could previously, so I think that won’t be a huge deal.

Regardless, I’ll take whatever wins I can get.

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.

The Convergence of Lots of Things

This has been a theme in my life the last week and a half or so. Just that “when it rains, it pours” feeling.

Last Monday, I had to have a client arrested at one of my offices, the person who is the reason I became a counselor died suddenly, and the husband of one of my really good friends was, I was sure, going to pass away in the following day or two. Also one of my employees gave their notice in a way that was…we’ll say not ideal and leave it at that.

That was just Monday.

The next day, my friend’s husband passed away, I was scrambling to get my shit together before class, and I was struggling with how I was going to do that given that this beloved professor of mine taught the very class I am teaching this summer. I’ve taught it before and realized even then that his shoes would be impossible to fill and was able to fully accept that, but this suddenly felt heavier.

Wednesday some other fuckery happened. I think I had that meeting with my functional medicine person.

Friday, I was in Boston. I came home, passed out, and also slept a lot of the weekend. I was totally tapped.

In that time, I ordered all of the supplements I needed, and they came yesterday. Also notable, I started with a new therapist yesterday. It was well past time - I’d been with my previous person for 12 years, and though this person changed my life and I will forever be in her debt, it was time for a new set of eyes. 

Anyway, I took these new supplements for the first time yesterday evening, went and taught my class, and then an hour later, was passed out in my couch. I got up, went to bed, and then proceeded to get the best night of sleep that I’ve gotten in a decade.

It made me wonder if the quality of my sleep has shifted so gradually that I didn’t even realize it was bad. That’s happened before, like when I woke up from brain surgery and realized I’d had a headache for 20 years that had built so gradually that I didn’t even realize I was in pain.

I know, on some level, that my sleep was bad. How could it not be with the drastic shifts in my hormones and my stress level over the past four years? I was generally getting anywhere from 5-6 hours a night and if last night was the bar I want to set for my quality of sleep, the sleep I was getting before was terrible. Abysmal, even. I got nine and a half entire hours last night, and the only thing that woke me up was my sleeping dog howling so loudly that he woke up all of us. I thought we had an intruder. We did not.

He also has really learned to turn on the melodrama. I think this one was when we wouldn’t take him outside for no reason.

(He does this with a pitiful, high-pitched whine. Poor bub. I’m pretty sure he’s doing it right now because I’m three minutes late with his breakfast.)

So, it could be the supplements. It could be the self-care. It could be the vocal surgery. It could be a combination. I’ll tell you that I feel closer to my old self than I have in four years as I adjust to my surgery, which will take 2-3 months.

What a relief.

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.

Things I Don't Owe People

Unlearning is messy and hard and I hate it.

(I just read two books back to back that have shaken me to my core, so bear with me. If you're wondering, they were The Let Them Theory by Mel Robbins, and Self-Compassion by Kristen Neff. Both amazing.)

I think our culture, be it our family, our broader society, what have you, have historically taught people (especially those socialized female) that boundaries are rude. Having them, asserting them, all of it. And if you have a boundary and you say no to something, you better be prepared to explain yourself, or at the very, very least, internalize that you're a flaming asshole for it.

You know what I was never able to internalize until a few years ago (and I still struggle with it now and will always, I think) because I didn't even start to learn this idea until then?

I don't owe people a reason for my boundaries. I don't even owe people -telling them- about my boundaries. (That feels particularly yucky still, but just because it feels yucky to me doesn't make it any less true.) I don't owe people a reason for my limits around what I will allow and what I will not. I don't have to be mad to set a boundary - in fact, they work better if I set them from a place other than anger or frustration.

I've been called mean. I've been called rude. I've been called aggressive. I've been called bossy. I've been called rigid. I've been called a bully. I've been called every single sexist gross thing that a woman can be called when someone bumps up against my limit. I could be as nice as I want about it, but if I uphold the boundary and don't allow for the crossing, THAT is when people get angry.

People get even angrier when I choose not to take the time to explain myself, because I have learned (the hard way, over and over and over again) that the more I explain myself, the easier it is to find loopholes and make me doubt my limits and gaslight myself. The more I gaslight myself, the less worthy I feel of setting boundaries in the first place. It's a really, really fucking vicious cycle that I have been perpetually stuck in.

The Universe has really, really crammed this idea home in the past few weeks. It is officially stuck in my brain. Thanks, Universe. Lesson absorbed. You can literally stop it anytime.

The way the Universe sends me messages is that it sends them, I don't listen until it's time, and then I get message after message after message.

The employee who wants to know why I answer a question a certain way even after I've given them all I'm going to give them for an answer and what the situation is, is that they actually don't want to or can't do the work of sitting with the answer because it's uncomfortable. They try to foist that work on to me. No thanks!

That person that I have a business arrangement with who keeps violating the terms of it and then is shocked when I assert my rights, and is continually shocked when I don't let them cross the boundaries of a written agreement, and instead of staying in said written agreement after continual boundary violations, I get out of said written agreement. They've taught me all I need to know about how they're going to treat me and it's unacceptable to me, so I get out.

That doctor that looks shocked when I ask for a second opinion on my test results because I think the doctor is not correct in their diagnosis. (They were, in fact, incorrect, and I have the shocking level of energy and the pack of cheese bagels that I intend to devour daily over the next week to prove it.)

That insurance company that keeps pushing my clinicians' credentialing back, I'm guessing hoping that I'll just give up and then gets angry and acts immediately when I make a complaint to the insurance department.

Keeping my door closed when I'm doing admin work.

Keeping limits around my schedule and what I will permit for shenanigans.

Being able to say "THAT'S ENOUGH FUCKERY FOR TODAY" and ending my day and not allowing literally anything else inside my brain for the day.

Saying out loud to Rob a few months ago, "It takes me more time to process things than it takes you." and asking for more time. Did he show up for that idea? Continuously. He still does.

I've also begun to internalize the idea that I don't owe people flexibility to the point where it messes with my life and my well-being. My old therapist pointed out once that if she makes a mistake (and she made a couple - we all do!), my response would always be "No worries!"

"Ryan. You got out of work early to come here. This is important to you and XYZ conflict came up. You get to be mad about that, even a little."

She was the literal first person that ever taught me that I don't owe anyone flexibility. It's not that I want to be rigid all the time, I'm a reasonable person (or at least I like to play one on TV), but people do take advantage of that, and I never learned how to protect myself from that until like last year. Literally. Not hyperbole. Literally in early 2024.

I've been on this journey of unlearning this idea that I owe people these REALLY important things since I started therapy at 30. I've really had to learn to step into my own power and it's been difficult, but I wouldn't trade it for -anything-. This is the first time in my life that I've actually felt that I have control over my life, and let me tell you, now that I feel like I have it, anyone that tries to convince me that I don't have power over my own life can either get the fuck out of it, or they can pry that control from my cold, dead hands.

Protecting my peace is important. Probably the most important thing I do. If doing a particular thing makes my peace more vulnerable, I do not do that thing. Full stop.

Thank you for coming to my Ted Talk.

Getting Answers and Getting Tired

I'm pretty tired of my medical care being my version of top-tier self-care. It's a literal second full-time job, and I'm just...tired.

That being said, I had a PCP appointment a few weeks ago and she noticed that I hadn't had lactulose breath testing yet. This particular brand of digestive testing tests for a condition called SIBO, which stands for Small Intestine Bacterial Overgrowth. People who have had C.Diff are especially prone to it (both because of having had it in the first place and also because the treatment for it absolutely decimates your gut, and it takes literal years to recover from), and it can cause all kinds of terrible symptoms. I ticked every box on the symptom list, so when I was meeting with my first MGH gastro, she ordered it because I asked her to.

Then I went on Prilosec to get rid of the ulcers, and so I couldn't do the test because you have to be off of those for four weeks. February 5, ding ding ding! That was my day.

For this test, you have to drink lactulose. They give you about 6 ounces of it to drink, and it took me ten minutes just to drink it. That is how disgusting it is. Then every 20 minutes for three hours, they have you breathe into a tube to test two different gases: Hydrogen and Methane. If the gases come out a certain way, you have SIBO.

As a side note, there were two of us taking that particular test that day. The person next to me had no reaction. What a douche. (Not really. Her name was Elizabeth and she was lovely.)

At the 90-minute mark, I got such major rumbles in my stomach that she legitimately looked at me and was like "Um. You ok?"

Friends, I was not ok.

It happened a couple more times, then I snarfed (for those wondering, it's sneeze-barfing, which I've been doing more of than I'm comfortable with lately) three times during the test, and the nurse gave me a tiny bit of water to rinse my mouth out and that was literally all I was able to have.

You know what that nurse had the literal audacity to say to me? "If it brings you any comfort, if you're having this kind of reaction, it means that you probably have what we're testing for."

Anyway. Testing continued, then I left, half a sock knitted, and then ate an oatmeal cream pie and went home. Or more accurately, to work. I almost barfed in my car, but I made it to work and through the rest of my day without incident. This is good because I've had the car for a month and a half now and if I had barfed in the car after already having been in an accident, I clearly would have considered the car possessed and just set it on fire.

Then the test results came in.

I am a chronic googler. Whenever I get results for testing, I look them up to see what they mean.

If, at the 2-hour mark, the methane level is above 20, you have SIBO.

Mine was 44.

Then it's supposed to take another big spike and then start to reduce.

Mine spiked up to 58 (the biggest jump of the entire test) and then reduced a bit and then plateaued.

Yup!

SO I emailed my gastro and was like "Hey, can we talk about these results?" and she was all, "Whoa. Let's get you in and make a plan." So I called yesterday asking if we could just wait until March when my next appointment is, and they were all, "Hold please, I'll check." They came back on shortly after and said, "Nope! We'll see you Friday at 4:30."

The good news is that treatment is easy - targeted antibiotics for three to four months and then another test after that time. I have a hunch that this is going to get rid of the whole problem. This is great news because low-FODMAPS is bullshit. I will have to eat an anti-SIBO diet for a good long time, if not forever, but it's flexible and SUPER manageable AND I CAN EAT VEGETABLES AGAIN. I had a salad the other day and LAWD did I pay for it, but it was worth every goddamn bite. (The company was pretty great too, BUT ALSO THE SALAD.)

This afternoon's appointment is going to be a dabba doo time, most particularly because I'm having a filler injection in my vocal cord this morning first. I'll be squeaky today and probably tomorrow, but then it's BELT IT OUT TIME FOR ME. Am I pretty nervous because I'll be awake for this one? Yes. Is it awesome that I'll get to drive home from it? Also yes.

I can't WAIT.

Regaining Hope

Oh, this one's a doozy. I'm going to put a warning out there that this contains graphic medical content, so if that ain't your jam, feel free to click away. I know that medical talk isn't for everyone.

That being said, I decided to get a second opinion on my vocal cord paralysis. I decided that I'm not going to accept that nothing can be done until at least two medical professionals have told me so.

When your vocal cord has been stunned, if it hasn't recovered after a year, it's basically impossible that it's ever going to. What has this resulted in? Neverending fatigue because I'm constantly leaking oxygen and also my version of talking normally is about 70% of the average human, so having to constantly feel like I'm yelling and also the mental load of -constantly- having to repeat myself. Also, having to be mindful of where I go out to eat because loud restaurants are a big no-no. Not that I particularly enjoy loud restaurants, but still. Some restaurants are unexpectedly loud and it's difficult to deal with. I also talk a lot less than I used to. This is difficult because I literally talk to people for a living. My voice is shot by the end of the day, and it's annoying and difficult. The fatigue isn't as bad as it used to be, but it's still there.

In December of 2022, I had a filler injection in my paralyzed vocal cord. Basically what this does is beefs up the vocal cord so the other has something to vibrate against. I then promptly got influenza and lost my voice for almost a month (which is another fun thing about having a paralyzed vocal cord - if you lose your voice, it can take LITERAL MONTHS to get it back), and the injection only lasts three months. There was some good stuff that came out of that (like the injection actually repositioned my vocal cord so that it was closer to where it needed to be), so even though the injection lasted three months, my voice ultimately got better in the long term, so I wanted to look at more permanent solutions. My ENT referred me to Mass Eye and Ear to talk about that more. Cool.

I saw this dude twice. Both times he said that I waited too long to address it (which I didn't - it took eight months just to get an appointment), so there was nothing to be done. So I sighed and went on with my life.

Somewhere along the way, a couple of months ago, I said to myself that that ABSOLUTELY CANNOT be the final answer. SO! I asked my PCP for a referral to get a second opinion. Did you know that Mass General has a voice clinic? They sure do! They have doctors that specialize in EXACTLY WHAT I AM GOING THROUGH. They have the swankiest waiting room I've ever seen, and they treat people like Adele, Bjork, I think they treated Mick Jagger, Julie Andrews, a whole bunch of famous people. If you're having voice issues, this is clearly -the place- that people go. It was pretty neat to look at all of the pictures.

Ok. So. I had this appointment yesterday. I'm not sure if y'all know how it works when someone looks at your vocal cords, but it's done one of two ways:

1. They numb your nose and your sinuses and stick a camera up your nose and down your throat until they get to your vocal cord, have you sing "EEEEEE" or "AAAAAAA" or "OOOOOOO" in different pitches and as loud as you can and take a look, take some pictures, and talk to you about it.

2. They numb your throat (and that sensation of not being able to swallow is...yikes, and also the numbing stuff tastes disgusting.), stick the camera in your mouth and down your throat, it's like a strobe light thing, grab your tongue and yank it out of your mouth as far as they can, they take a video, have you sing "EEEEEEE" at different pitches again as loud as you can, and they talk to you about it. It was just about the coolest imaging of any of my bodily functions that I've ever seen.

I had the second one for the first time yesterday and it was a TRIP. I usually have the first one. The numbness lasts about three hours either way, and as it goes away, I have the sneezing fit to end all sneezing fits and then I'm fine.

Basically the end result is this: There's hope.

THERE'S HOPE.

I have to fight with Anthem a little bit to get it covered, but as soon as that goes through, I'm going down to Boston to get another injection. What's super weird is that for the first one, they put me out for it. This time, this doctor won't be doing that. I'll literally be able to drive home from it. Weird, right? Super weird. Then if that works as we hope it will, a more permanent solution will be that I'll get a tiny bit of liposuction in my abdomen and he'll take that fat and put it into my vocal cord. That's obviously a surgical procedure, which is fine, but if I'm able to do this, then I'll be able to get close to 100% vocal function permanently.

PERMANENTLY.

You know how something resolves itself and you feel WAY more relieved than you expected to? This is one of those times for me. I wasn't even aware of how hopeless I was feeling about this until this appointment was done. To have my hope restored in this way and have a possible solution to a problem that has had a really significant negative impact on my life for the past three and a half years with no path forward, well, that's going to be a game-changer.

I'm so excited that I don't even know what to do with myself. I'll be planning out my belt-it-out-in-the-car playlist for the next few weeks, so suggestions are welcome! :D

FODMAPS Foibles Part One

Well, the holidays are finally done.

During that time, I found out that I don't actually have celiac. The test came back absolutely, without a doubt, negative. I was at a training when my results came in, and it was about 10 minutes before lunch, and so you know what I did? I had a huge sandwich with regular bread. I stuffed my face with so much pasta salad that I didn't even know what to do with myself. I was also left with the question, though: If it's not celiac, what the hell is it? Guess we're going to find out when low-FODMAPS starts.

Quite possibly the worst time of year to make the transition to any new diet is the holidays. So, in early December, when my doctor said to switch to low-FODMAPS, I was like "Ok. So early January, then." She laughed and was like "Yeah, that sounds about right."

Cool. Glad we're on the same page about this, doc. That being said, I did make some changes this year that I think will make this transition easier. Anyone who knows how much I love candy canes will be flabbergasted by this.

I had one miniature candy cane on New Year's Eve and that was the grand total of candy canes that I had all season. UNBELIEVABLE. There is not a single candy cane in my house right now. I'm usually eating them until at least March.

I was determined not to switch to low-FODMAPS on January 1. I'm not sure how my deep-seated hatred of New Year's resolutions came about, but it exists and I will not apologize for it. I will not ever make any changes, ever, on January 1. I simply outright refuse.

I allowed myself the space to eat as much gluten as possible during the holidays, knowing that I had to go back to being gluten-free for this diet. Did I make up for the five and a half years that I didn't eat it? No. But I did have a cookie party, lots of lasagna, and bagels every damn day. Also an entire bottle of lactaid pills in two weeks. That's how much dairy I ate. I now know unequivocally that dairy is a problem. There are lots of alternatives, so I'm going to try out every single one that I can. (Actively looking for dairy-free cheese that doesn't taste like shards of cardboard. No luck yet.)

January 2, there we went. I made my coffee with FODMAPS-friendly creamer, put in a lil maple syrup, grabbed my low-FODMAPS freezer meals, and off to work I went. I had this blueberry-almond-rice porridge and it was pretty fantastic. Then I had this disgusting maple chicken for lunch (which looked so promising in its packaging! I was so disappointed!), and then I had this pot roast stuff for dinner.

Frozen meal deliveries are how I'm going to get through the majority of the first week or two of this, because I am still trying to figure out what I'm doing. I've figured out the cereals I can eat, I've figured out that there's a brand of food specifically for low-FODMAPS peeps, and so I'm going for it. I tried their marinara yesterday and while I appreciate the effort, marinara sauce without onions and garlic is an abomination. It was disgusting. I'll finish it and I'm sure I'll get used to eating without onions or garlic, and this is only temporary, but still.

The big winner yesterday was the overnight oats. Now that I can eat oatmeal again, I'm diving in head first to all of it. I've figured out some important stuff about what I can and can't eat, so I feel ready.

After doing a little low-FODMAPS last week, just to dip my feet in, and something interesting happened.

I lost an entire pant size in two days. I literally went from my pants being snug to being able to pull them off without unbuttoning them. Apparently, yes, inflammation from IBS CAN be that bad. I'm very interested to see what will happen over the next couple of weeks. My gut is...very mad. It'll get better and I'm told this is part of beginning low-FODMAPS, but man. I'd like to get through this part as quickly as possible, please and thank you.

The most important thing, though? My shit is -back together-. I've had a little brain fog when I eat something I shouldn't, but other than that, it's GONE. I can figure things out. I can remember stuff. I can actually do the things I need to do without becoming overwhelmed. This is the most functional I've been cognitively in years. 

I'm trying hard not to be angry about this because I've been really struggling with the brain fog part since my surgeries. If someone had just told me "Hey, it's probably food intolerances, let's do low-FODMAPS and see what happens", I would 100% have been on board. I also know that trauma of any kind, which includes medical trauma, can trigger or exacerbate IBS. I think what happened was that my gut was already simmering in 2021 and had been for literal decades. Add medical procedures and bodily trauma, no change in diet, and BAM. My gut had the temper tantrums to end all temper tantrums.

I'm sure the anger will dissipate once I've discovered what my triggers are and start to consistently feel better. It's already starting to happen. Just having answers is comforting, even if it means big changes. I am also feeling less anxious in general, so I think this is actually going to be a game-changer for both my physical and mental health. I talk about basic self-care with my clients all the time, and this is part of it. I'm pretty excited.