Answers and Dairy and Gluten, Oh My!

So, I've been on this epic search for a gastroenterologist. I had one a couple of years ago that was...ok, but she didn't really listen when I was talking about the gastro issues I was having. All she wanted to talk about was my first EGD/Colonoscopy and how I need to take Pepcid every day. (I didn't want to do that. I'd take it temporarily to ease the damage from the GERD they found, but I wanted a longer term solution that did not involve medications.) Her solution? "I don't know, figure out your GERD triggers" with a shrug.

Cool. No information about how I can go about doing that? SUPER HELPFUL.

So I just carried on with my life. Had a couple of colonoscopies over a couple of years, then this year I was due for another EGD/Colonoscopy because I'm supposed to get a colonoscopy annually, and an EGD every three. Except, I couldn't get in. I started trying to get one scheduled in May, and they were booking out a full year no matter how many times I said I was due in October.

Then July and September happened. Multiple ED visits. No answers. I finally got in with my PCP and she was like "We need to get you into a gastro right away." They were able to fit me in quickly!

Then the gastro just talked at me and the end result was the same: Shrugging with a side of "Just figure out your triggers."

What are GERD triggers? I know how to tell if something triggers it, but do I eliminate all GERD triggers at once? One at a time? What the fuck am I supposed to do with that? She had no answers. She was also more irreverent with me than I'm comfortable with when I'm meeting with a doctor for the first time, so no thanks. BUT she ordered the EGD/Colonoscopy that I'd been trying to get since June. I couldn't get in with MGH until Christmas Eve and I was suffering, so hard no for that. I was able to get in with another practice in October.

The only word that comes to mind when I think about the results I was given?

Yikes.

Barrett's Esophagus. Multiple ulcers. Damage from GERD. Colonoscopy was the best one yet though! And, I got pretty teary when the doctor was giving me the results because I finally had answers. Everything I'd been going through since July, I finally could point at the cause.

So I tried to get these results back to my regular gastro, and it was the biggest shit show I've ever experienced. There was no communication, no coordination, nothing. At that point, I was like "That's the ballgame. Time to try someone different." So I talked to my PCP and after four weeks of wrangling, I was able to get into the MGH network for a new gastro. (I was told that the gastro that I saw originally was in the MGH network, then I was told she wasn't then I was told that she was and then I was told that she wasn't again. MGH is going through a thing right now and they're super disorganized. A merger of some kind I'm told, but regardless. My frustration was unending.)

So! I went to this new gastro last week. Wearing this shirt. I've been waiting my entire life for this moment.

Let's be real. This was the true test. If she laughed at this shirt, she was my new gastro. Screw answers. She needed to have a sense of humor. I don't know how she wouldn't, talking about literal poop all day. (Some really don't!)

She came in, took one look at me, and cracked up laughing.

Then she talked to me about IBS. Key points:

1. I probably have it, and if it's not IBS, then it's Ulcerative Colitis

2. I'm to go on the FODMAPS diet for three months and then start to reincorporate things

3. It's very likely dairy so I should start eliminating that immediately even though I'll otherwise be eating normally the first week of it to see how things go

4. (And this is the big one) It can cause a false positive on a celiac test.

All of my celiac biopsies have come back negative. You know why? I'm supposed to be eating gluten for eight weeks before it and I've been very strictly gluten free for the past five and a half years. So, the alternative? Another blood test. "It's more sensitive than the biopsy, so you don't have to be eating gluten for weeks before it and it'll pick it up even if you have a small amount, which everyone does."

Cool cool cool.

The celiac tests were negative.

Every single one.

I was at a training when the test results came in. Lunch was like a half hour later.

You bet your ass I devoured a sandwich. I absolutely destroyed that thing and also had a shitload of pasta salad. If I could have just taken the whole bowl of it and poured it into my mouth, I would have.

You know what I had for breakfast yesterday?

Overnight oats.

ACTUAL OATS. REAL ONES.

DO YOU KNOW HOW MUCH I MISSED OATMEAL.

So, ALSO, I'm already starting to feel better, day four of being dairy free. I had a bagel yesterday, but I took a lactaid pill before I ate it, and I seemed to do ok with that, actually.

If I can eat gluten, I'll be ok. I've tried gluten-dairy-egg free before and it does not go well. There are tantrums involved. Big ones.

I'm also relieved, because I cannot, cannot, cannot do low-FODMAPS and be oat-free at the same time. I'm sure it's possible, but I'd decided that it's not. 

Is going dairy-free (and quite possibly onion and/or garlic-free) for the long term the answer I wanted? Sure isn't. But if I can manage gluten-free for five and a half years, I can manage dairy-free, especially since there are pills out there to help so if I decide I want to cheat, I can without major consequences.

Stay tuned for FODMAPS shenanigans - there are sure to be some! For now, I am going to basically go knit until my hands fall off.

Overcoming Burnout

So, often the first sign of burnout or compassion fatigue (which I affectionately refer to as burnout's less oppositional cousin) is the loss of the ability to be surprised or shocked by things. I've been experiencing that since at least when I was working in community mental health, but it was something that I thought came with the territory. I just shrugged and moved on with my life and didn't miss it because I felt more regulated so I, in my mind, thought that was a good thing.

Nope!

I was able to keep a straight face (most of the time) when people sat in front of me telling me horrific things. I literally had no outward reaction, and honestly, it was pretty rare that I had an internal reaction, either, after a while. That was a bit concerning, but again, I just figured it was part of the territory.

I started to get the inkling that it wasn't normal when I left community mental health and when I would talk to my supervisor, her flabber was consistently gasted when I talked to her about my clients. I was told continually that my clients might need more care than I could give them, which was absurd; these people that I was seeing were so in my wheelhouse that it didn't even occur to me that anything could be different or easier.

Then I started my practice, and even the most egregious shit, I would shrug and say "yup! Comes with the territory. Sounds about right." And it continued this way for...years. Several of them.

Then I started going through all of this medical stuff (today is, in fact, the three-year anniversary of that emergency cerebral angiogram that caused me to be out of the office abruptly for five days and for my neuro team to unabashedly freak out. Thinking back, probably one of, if not the most frightening week of my entire adulthood. I remember one of my clients telling me that she thought I died and I remember thinking "What? Of course not. Why would she think that?" Now I get it.), and I was going through all of this scary stuff and starting this business and having surgeries and I was like "Meh. It's all right. I'm going to just keep putting one foot in front of the other. I'll get through it."

At the time, I literally had no feelings about it whatsoever. When I get in front of a doctor and tell them about my medical history of the last four years, they have a MUCH stronger reaction to it than I have ever had. My therapist was like "Um. You ok?" and was SHOCKED when I was like "you know? Yeah! I actually am."

If someone came to me for therapy and told me what they were going through and it matched what I'd been through, I'd be like "Let's talk about you taking time off from work and see how feasible that is for you right now if you're open to talking about that."

About a year ago, I became worried about this. Am I just processing all of this stuff extraordinarily well? What the heck is going on?

Then I started to make all of these changes. I hired an AMAZING admin staff. I hired a fantastically, amazingly competent clinical director. I put a structure in place that allowed me to actually detach in a healthy way. These things are the specific things that I can point to that have decreased my burnout, and I knew they would, even though it was really scary to do both of those things. Then something magical happened. MY BURNOUT ACTUALLY STARTED TO DECREASE. I wasn't lying to myself this time. It was actually, literally happening. I started being able to take time off from work for things that were not medical. I started going to more trainings that were actually compelling for me instead of just the ones that I thought I wanted to go to. (I have one today, in fact!) I started to get interested in things again.

It's been on a steady decline for about a year and a half, and a much quicker though still steady decline for about the past six months. This year has been a real lesson in letting go and letting things unfold, and genuinely, what a gift I have given myself. 

You know how I know that my burnout is decreasing?

My gob has been unabashedly smacked four times in the past two weeks. I didn't even recognize that it was shock at first - that's how long it's been since I actually felt it - and not only did I welcome it in, I felt such relief that I actually felt it. I'm actually allowing room for my actual feelings about things instead of just letting it sit in there and rot. I've been through really tough stuff over the past half decade of my life (not just medical stuff - I still had...you know...a life to live) and I haven't allowed for my feelings around any of it.

Luckily I have amazing support. Luckily I have a very good therapist who puts up with every single one of my shenanigans. I am a very firm believer in the idea of "Everything in due time", and apparently, this is the time for this phase of healing from burnout. This finally feels like something I'll come back from. As a result, I feel more present in general, I'm less avoidant of things, and I'm feeling better. Also, anyone who tells you that they can bounce back from burnout quickly is either lying to you, lying to themselves, or both. I get that there's some white-knuckling and a healthy dose of "Act as if" that needs to happen in order to get through certain phases of the healing process, but it often takes literal years.

(It's helpful that I think I'm through the worst part of these most recent medical shenanigans. I'll know more on Tuesday, but I had some rough results from my endoscopy recently that require follow-up procedures and Big Diet Changes. Hopefully nothing too scary, but I'm hopeful either way and problems that I've had for most of my life are in the process of getting solved. Oddly, in spite of the shenanigans, I feel closer to pre-2021 Ryan than I have in the past three and a half years.)

Also, I'm knitting fun things, and I've learned some new stuff, like how to knit a sock starting at the toes instead of the cuff, and I'm SUPER excited to see how it comes out.

I'm also going to teach my dogs how to talk.

More on this later. There are talking buttons involved. They may use it to manipulate me, but what else is new. When given the option to either cave to my dogs' will or not, I will cave every time.

Medical Hostage-Taking

You know how my biggest self-care this year was to give myself some peace from the entire full-time job that is managing my medical care?

Yeah. About that.

It continues.

Also I left the Emergency Department against medical advice for the first time in my entire life on Friday, and I still feel like a TOTAL badass.

So, woke up last Sunday, so eight days ago, with a familiar pain in my side. It felt starkly similar to the Great Gastro Event of July 2024, except way less severe. I thought to myself, "Well that's inconvenient. We'll see if this is A Real Emergency or if it goes away like it did like 75% of the way last time."

Nope.

Monday I woke up and it was a little worse. I went to work, had a normal Monday, but cancelled some of my afternoon so that I could go to urgent care. Care to wonder where they sent me?

My nearest emergency department to get an abdominal CT scan and figure out what was going on. Sigh. Fine.

So I go, wait for FIVE HOURS, and then I'm like "fuck this" and I left. They'd taken my vitals, done some bloodwork which came back mostly normal but a little wonky, and an ultrasound of my upper abdomen, which is not where the pain was. I decided that the easiest way to get a CT was through my PCP.

Nope!

I got a gastro referral from my PCP when I saw her the next day. I called, and even with an urgent referral, you know how far they're booking out? December. Nope! She also put me on a liquid diet at that point to calm down my digestive system, which worked for the day and a half that I did it.

So I called my PCP back (and keep in mind that she was new at this point) and they put me back into the Mass General pipeline to get a gastroenterologist.

So I waited for the referral to go through.

And waited.

And waited.

Then I got referred to the ED again by my PCP when the pain was getting worse and also I had no appetite. There was a clear ramp-up happening here. So on Thursday, I went again.

There was screaming child after screaming child after screaming child, followed by people just pouring in. Also they wheeled someone in who was vomiting all over herself in the waiting room and parked her right next to me.

Five hours later, same result as last time: They'd done some bloodwork and sent me back to the waiting room to sit and knit. No thanks! I went home and tried a different way: seeing a doctor through telehealth. She told me to go back to the ER and wait for a CT scan. So I did, waited four more hours, and then went home again.

The disruption to my life at this point was massive, and no one was helping me unless I was willing to both be held hostage by a medical facility and expose myself to all manner of illnesses, including COVID, for which I am at high risk of severe illness if I catch it, and numbers are HIGH in my area right now. So the next day, I did a few things:

1. I fired my new PCP. It was a record for shortest time I've ever had a PCP.

2. I called Anthem and asked them point blank how I could get them to not be stupid about my PCP so that I could go back to my old office. We had it figured out in 30 minutes.

3. I hopped on Mass General Urgent care, at which point I was referred to the ED for a third time for something that I knew while it was serious, was absolutely not an emergency.  I was also trying to find a way to get a CT in a non-emergent environment. No dice. He referred me and gave me strict instructions to stay this time because it could be something super serious. Sigh. FINE.

So I went to a different ED this time, this one in the Mass General network, which he told me would likely have a shorter wait time but he couldn't guarantee it. Fine. I drove the hour down to the nearest Mass General facility.

At hour four, the lady came around and did my vitals again, and I got a little ranty. Things like "It wasn't even my idea to come here" and "I don't even need a bed. I just need a CT. I can go over the results with my PCP."

I finally got in, and then I waited. They took my blood, did a bunch of tests, did a pregnancy test because THAT's such a concern given that I haven't had any reproductive organs for the past three and a half years. A couple of hours after that, I got the CT that I needed, and then I waited. They told me that it would be about an hour before the results popped into my chart. So I waited. Two and a half hours later, I called a nurse and told her that I was leaving and could they take my IV out please.

"You're aware that you'd be leaving against medical advice."

"Very."

"Well, you'll have to sign a form."

"...Ok. Please go get it. I'm leaving."

Then THE DOCTOR came in.

"This could be something serious. You could have appendicitis."

"Well if it is, I really appreciate the breakneck sense of urgency."

"I know it's hard to wait. This is just how the system works. I'm really sorry."

"You apologize as if you're not complicit."

"I'm sorry...what?"

"You apologize as if you're not complicit. You think that if all ER doctors stood up right now and said that this situation is intolerable from the perspective of patient care, something wouldn't be done? Because I think if you did, something would've been done yesterday. If my results aren't back by 8pm, I'm leaving. I know this is not entirely your fault, but I'm still Very Angry and I'm not waiting anymore."

"I think you should stay. I can get you some medication for your anxiety if you'd like."

Um. What?

"I'm not anxious. I'm tired, I'm starving because I haven't eaten a full meal in five days, I was told to come here and not eat or drink anything before coming here, and so I haven't had anything to eat or drink for 24 hours, and I'm frustrated. Anxious, I am not. Also I'm leaving in 30 minutes because I've been here for nine hours and am no closer to an answer about what's going on. I'm all done."

Seeing that she was absolutely not going to convince me to stay unless she brought me in test results, she scurried off. At 8:09, I buzzed the nurse, signed the form, they told me it was a bad idea to leave, took out my IV, I acknowledged their opinion, I hopped in my car, and I went the fuck home.

Then I had an english muffin and some eggs and went to bed. It was just about the most delicious thing I've ever eaten.

My results came in at 9:45pm into my portal, 10 hours and 45 minutes after I entered the ED. Let me be clear that had I thought it was something serious, I absolutely would have stayed. But this is something I've experienced before and have been for literal years at varying degrees of severity. I need a gastroenterologist to help me figure out the digestive issues that have plagued me most of my life but been written off as anxiety when I know it's not, not an emergency department visit.

Here are the lessons that I'm learning.

• Just because the system is broken doesn't mean that I don't have a right to a voice in my care. It also doesn't mean that I have to accept or participate in it, and I have a right to advocate for better treatment. 
• DOCTORS DO NOT KNOW MY BODY BETTER THAN I DO. 
• Doctors DO NOT get to tell me that I am experiencing a Hot Button Medical Emergency when I know I am not and then force me into a position of waiting for care for what has now equated to 24 entire hours and then STILL not gotten the care I need. If I'd had a bursting appendix (which, spoiler alert: I don't), even if I'd stayed at the ED that first day, it would have turned into a Very Real Medical Emergency because they made me wait so long. 

I've learned some things through this experience about how to get the care I need also. I'm always afraid that I'm going to push too far or be just a liiiiiittle too much of a pain in the ass and get myself either dropped from care or get myself in trouble somehow (and believe me, given that I was in Massachusetts, I was more than a little concerned that the doctor was going to file a 5150 on me to hold me there for psychiatric reasons because I was leaving AMA while potentially having a medical emergency. I also knew that this herculean wait was on my side in this way because she couldn't concretely prove that I was actually having a medical emergency). But, what this has taught me is that I need to be a bigger pain in the ass if I'm going to get the care that I need. I'm generally pretty agreeable if I can trust that the doctor sitting in front of me is acting in my best interest, and I have not once been convinced of that through this entire experience.

Why is being spicier always the answer for me? The second I decide to be spicier, without fail, I get what I need. There's a lesson in there, I'm sure. Maybe that will be my bullshit New Year's Resolution for 2025.

I get that EDs are flooded. I get that medical teams are strapped. I get that it's SUPER hard for emergency departments to effectively care for patients with the shortage of doctors and nurses. I also understand that none of that is my problem - it's the problem of our broken medical system, and it's not my responsibility to fix that. It's up to the people that make the decisions and advocate for policies and practices that directly affect patient care and they are.not.doing.their.jobs.

What's so perfectly poetic about this is the amount of public education that is out there about when to go to urgent care, when to wait for your PCP, or when to go to the ED. I tried with all of my might to stay out of the ED, and was continually pushed there for a problem that I absolutely knew was not an emergency and said it to literally every medical professional I came in contact with, even the mean receptionist at the first hospital. If I'd just been able to get an order to get a CT during regular business hours, this entire problem could have been avoided, and I tried HARD.

Sigh. This is literally the last piece of the puzzle in the weird constellation that is my medical care, and then I feel like the dumpster fire that is my medical care will be out. Not smoldering; out entirely.

And also, if you want to make an omelet, you've gotta break a few eggs. I created a little (ok, a lot) chaos on my care team in the short term in order to make things easier for myself in the long term, and I have to be ok with that happening every once in a while.

Pathological Demand Avoidance

Let's talk PDA for a moment, shall we?

No, not that PDA.

This PDA.

You know what one huge thing that I've been doing for myself for the past year and a half or so? Learning about ADHD. Not that I didn't know a lot about it already, but when I got the diagnosis after having it for almost 43 years, my motivation to know more about it got deeper in a really important way.

That's when I really started to dig in and learn about things like Pathological Demand Avoidance and Rejection Sensitive Dysphoria, both hallmark symptoms of ADHD as it presents in women, as it pertained to me instead of trying to constantly intellectualize it.

I have to say, this one blew my mind. I've been doing this my entire life.

Basically what it boils down to is this, at least as it pertains to me:

I have this list of things to do. It may be a large list, it may not be.

None take a ton of time or are super demanding of my overall coping or any other kind of skill objectively, yet I can't do any of them. At first I thought it was The Impossible Task and for sure in a time in my life, it definitely was, but absolutely not anymore.

Upon reflection the last few times this has happened to me, there's one thing on that list that taxes my capacity. I'm never conscious of it, but I have to sit and look at my list and tune in HARD to my internal feedback.

When I find that one thing is beyond my capacity, whether it's that it's too hard for me mentally at that time, or I just don't have the patience to do it, I name it. I acknowledge the stuckness without judgment as well as my avoidance of LITERALLY EVERYTHING ELSE.

Once I have been able stop myself and stop the judgment of myself (an equally important task), I figure out how to do the task in a way that is not overwhelming, I do it, then I feel better, get myself caught up easily, keep myself caught up, and then I get blocked by something else.

This has been happening to me a lot over the past few weeks, and I finally figured out what it was this time. I was behind on notes, I was behind on cosigning, I was behind on administrative work of every stripe you could think of. Then I sat with it, and you know what it was?

You're going to think it's dumb. It both is and isn't.

I had a boatload of checks to deposit and because using the app and making online deposits is such a giant ass-ache, I didn't want to do it. No joke, the last time I tried making a deposit via the app, it took me almost an hour to deposit four checks. I absolutely hate it. I get so frustrated that I become flooded, and I hate feeling that way, so I avoided. And avoided. And avoided.

As I realized this was the task I was avoiding, I realized that there was a different way. The closest branch to one of my offices is about 10 minutes down the road and I had a free hour the other day (because I clearly wasn't doing anything else), and so I was like "You know what? I'm getting it done. I'm going to the branch in person."

It took two minutes.

The most important part of this was that I did it without an ounce of judgment. I didn't sit there and beat myself up that I had eighteen checks to deposit. I didn't sit there and make fun of myself. I actually patted myself on the back for finding another way and getting it done. And let me tell you, the size of that dopamine flood...

I think I've stumbled on a hack for myself, and you know what? I've shared it with every person I know who has ADHD in the hopes that it can help them too. 

Taking the time to educate myself about my symptoms has been a game-changer, and it has made me more mindful. I refuse to be the neurodivergent person who says "Oh, I can't do this because I have ADHD" or "My ADHD is why I'm like this." No. Do I need to heal from some stuff that has been caused by my ADHD? Absolutely, and that's a work in progress and probably always will be. But I absolutely outright refuse to use it as an excuse to avoid my responsibilities. When you're neurodivergent, it's not about just throwing up your hands and being like "WELP GUESS I'M GOING TO NOT FUNCTION LIKE A NORMAL HUMAN FOREVER AND EVER BECAUSE I'M DIFFERENT." It's about finding how we fit into the neurotypical framework (which shouldn't exist, by the way, because neurotypical is the exception and not the norm...soapbox for another day) in a way that works for us. Will my way work for everyone? No. But the beautiful part is that I don't expect it to. It doesn't have to generalize to other people. It just has to work for me.

Ok. Now to go do some knitting because now I actually can because my to-do list for the day is completed. I have a sleeve to finish and then I'm done the bulk of a sweater that I'm knitting. I'm so stoked about it. (I'm also trying blocking for the first time with my knitting...we'll see how it goes. Yay for new things!)

Going Rogue and the Best Birthday Gift Ever.

Friends, it has been a couple of weeks.

I had a...gastrointestinal episode that put me in the ER on July 3 into July 4. It was rough, and I was discharged with no answers, only anti-nausea meds and a bland diet for a day or two. It's either a kidney infection or colitis. I still don't know on July 16 at 6:30pm.

While the worst of it has subsided, the issue itself has not.

July 11, I had an appointment at 3pm because my PCP is not one of those who follows up after a person visits the ER, so that's a cool new thing I found out through all of this.

ANYWAY. I toodle into the appointment, and they were like "Oh hey, your insurance lapsed."

...what? No it didn't, but because I refused to self pay because my insurance is current, they turned me away.

Cool. I call my insurance, Anthem Blue Cross Blue Shield in case you were wondering and wanted to put them ALL THE WAY ON BLAST BECAUSE THEY ARE TERRIBLE AND I AM NOT EVER GOING TO BE CONVINCED THAT THIS GLITCH WASN'T SOMEHOW RETALIATORY BECAUSE I'M A STRAIGHT UP ASSHOLE TO THEM FOR A LITERAL LIVING and Rob got involved, and they eventually got it figured out.

So, the next day, also known as my 44th birthday, they call me back to reschedule.

For the end of August. 

The conversation went like this:

Medical Scheduler: Oh hey! We see that you got the insurance issue straightened out. Let's get you rescheduled. We have appointments next Thursday at the same time that you were supposed to be seen this week.

Me: No. I cancelled an entire afternoon of clients for an appointment I didn't even get to have, and I'm not doing that two weeks in a row.

MS: ...Ok. So. Then we have the end of August available.

Me: I'm sorry. What? Six weeks from now?

MS: Yes.

Me: Then no.

MS: But you visited the ER, yes?

Me: Yes.

MS: And you're still having the issue?

Me: Sure am.

MS: Then you need care. This needs to be addressed.

Me: Sounds like you all have a breakneck sense of urgency in six weeks to get that done. No thanks. I'll go to the ER again if it flares up again.

*click*

Friends, I'm not sure what happened in that moment, but I had this huge wave of insight and in that moment, going fully rogue on my medical care was the only viable option.

What came out of that was no more medical appointments in 2024. I had nine and I either cancelled or moved eight of them.

Annual skin check in August? Nope. Reschedule to March Medical Vacation Extravaganza.

Annual laryngology appointment and accompanying throat scope? They've already told me twice that my vocal capacity will not exceed 70% of what it was and that because I waited too long except oh wait I didn't but I wasn't able to get an appointment for eight months, I'm no longer a candidate for surgery. Do I need to hear that a third time? Sure don't. CANCELLED.

Dermatologist number three to do a face biopsy to figure out this rash once and for all? I've lived with it for 25 years. If it's lupus, tough shit. No one on my medical team gives a shit about it enough to give me an appointment less than 7 months in advance, so neither do I. CANCELLED.

MRI to check a cyst on my kidney that has caused me low-grade back discomfort for the past few years at least, and the follow-up appointment with my PCP about it? It's not going anywhere and I'm getting 3 MRIs during Medical Appointment Vacation Extravaganza, so nah. CANCELLED.

Annual colonoscopy and ensuing Lynch Doctor Appointment? I tried to schedule and they were scheduling thirteen months out and I'm due for it in October. Also, there is LITERALLY NO WAY that I'm filling my gullet with colonoscopy prep and then driving down to Boston. Also, the appointment is after my Lynch appointment at which we go over said colonoscopy. NOPE. NOT FIGURING OUT THAT CLUSTERFUCK. CANCELLED.

Also, I'm so unbelievably tired of the constant reminder that I'm a ticking time bomb for colon and digestive cancers. I'm trying denial for a little while instead of acceptance and seeing how that works out. I imagine I'll be able to ride this wave until my PCP gets back to me about the message that I sent to her about all of it. I sent it on Friday and have yet to hear anything, so maybe longer - when I see her in January will likely be the time.

My point is that I get all of this bloodwork, all of these ultrasounds, all of these MRIs, and I've gotten a grand total of bupkis for answers over the past year of my life, and I don't feel any better and no one is listening. I'm literally not going to waste my time and I deserve some peace.

I've felt so free since I cancelled those appointments that I don't even know what to do with myself. What it taught me is that sometimes going rogue is the best self-care possible. I've wasted too much of my 40s on this shit. No more. So, for my 44th birthday, I got myself an epic birthday present: peace. Peace is what I gave myself.

I have autonomy, I have options, and I don't have to be held hostage by this medical team that is not the least bit interested in giving me answers or helping me figure anything out.

Instead, I'm going to go live my life instead of existing between appointments or working too many hours.

T-minus 15 days until vacation. I can't wait.

Suspish. I'm very suspish. Also I'm ready for no more migraines.

So I had like this epic ten-day (but likely more...more on that in a minute) migraine. I was basically like a human vampire. It was super sunny outside and when I was in my office that has windows, the blinds were CLOSED. Minimal lighting always. In my office that doesn't have windows, I conducted business as if I was living in a cave. Light could not be in my direct eye line, and so that made for some dark sessions and supervisions. If I could have held sessions in the pitch dark, that would have been ideal. The sensitivity to light was brutal. There was one day that I was sitting on my couch wearing sunglasses and crocheting.

It was more than that, though. Just this...sense of malaise. I felt like absolute shit.

What makes me suspicious about this? I finally got in with my headache doctor and we were able to have a conversation about what the actual fuck is going on here. I'm tired of having to go to urgent care to get a shot. I'm tired of getting migraines that send me to the ER every few months. Taking my triptan three times in one week is not a good idea and it turns out resulted in a rebound migraine, because that's what happens when your pain is out of control and you take that three times in one week and also the fucking triptan doesn't work, as it turns out.

At least I found out the trigger. I had a dentist appointment over April break, the first since before brain surgery. What's relevant about this is that after my brain surgery, I haven't been able to open my mouth all the way, ever. I used to have a super poppy jaw (thanks TMJ) and I have not had said popping in my jaw since December 14, 2021.

Guess what you have to open your mouth ALLLLL THE WAY OPEN FOR AN EXTENDED PERIOD OF TIME for. My jaw hurt for four days. Day two was when the migraine started.

No cavities though, and my dentist called me boring and said I need to floss more. I have one cavity and one fractured tooth that I can keep controlled by wearing my invisalign retainers at night because I grind and clench.

I wonder why.

BACK TO MY SUSPICION.

I am at this headache appointment after the most genuinely hilarious Boston drive I've ever had in spite of having a debilitating migraine and if I'd had five pairs of sunglasses I would have found a way to wear all five if it would have made my world darker. I seriously laughed out loud when I was stopped so close to a car that our bumpers were nearly touching AND SOMEONE STILL TRIED TO CUT ME OFF and then literally 30 seconds later walked by someone walking EIGHT TINY DOGS ALL AT ONCE. At our appointment, she's like "Well obviously first on the agenda is to get the symptoms under control. Here's some predisone. Then I think it's time for prevention. We're going to give you a new emergency pill. It's another triptan, but I want to try at least three different ones to say officially that they don't work.  You're also going to start taking a daily dose of magnesium and a beta blocker." (Fun fact about me: I LOVE BETA BLOCKERS. I had a weird heart thing about five years ago and my doctor at the time put me on one for a little while to stop it and YOU KNOW WHAT I HAD NONE OF? DEBILITATING ANXIETY. HEYOOOO. YES PLEASE.)

So my migraine is gone, but it's Barfy Grumpfest 2024 over here until I'm off the prednisone on Wednesday.

Here's the suspicion: I had no idea my light sensitivity was as bad as it was until I didn't have it anymore. I was able to have the curtains open. I no longer needed to avoid garlic or silver. You know what's great? THAT. FULL CONFIRMATION THAT I AM NOT IN FACT ACTUALLY A VAMPIRE.

Is it possible that I've been feeling light sensitivity for longer than I've been admitting? Have I been having an aura-free migraine for weeks?

Very possible.

But for now, I revel in my migraine-freeness and hope that this new plan works and I can have some time where I both am pain free and don't hate everything that moves or breathes in my presence.

The Progesterone Chronicles: Medical Rage

The scene: My appointment with my new OBGYN, who I acquired after my OBGYN-Oncologist decided suddenly one day without warning that he didn’t want to prescribe my HRT anymore because I don't see him for anything. I get it, but also it was annoying to just randomly get that phone call one day. (So I’m already cooking coming into this appointment, just for context. It took three weeks just to schedule an appointment because my PCP doesn’t feel comfortable prescribing them and then going back to said OBGYN-Oncologist, telling them this, and his office saying “well, we don’t know then” and then ME being like “WELL CAN I JUST SEE SOMEONE ELSE IN YOUR OFFICE THEN PLEASE I ABSOLUTELY DO NOT UNDERSTAND WHY IT TOOK THREE WEEKS AND TWO CUMULATIVE HOURS OF PHONE CALLS TO SCHEDULE ONE APPOINTMENT.”)

This is after two and a half years of feeling like -absolute- shit with minimal improvements and no answers as to why, much less how to fix it, no matter how much I talk about it to my medical team. We're talking multiple naps a day, going to bed earlier than I want, waking up later than I want, and sleeping all day Saturdays. The fatigue has made me withdrawn and angry because I can't get out of my own way enough to do things that I want to do. I’ve gotten two and a half years’ worth of shrugged shoulders as to why I’m barely functional, along with variations of the following:

Yeah, pituitary suppression sucks. Just gotta live with it.

It’s not adrenal insufficiency.

Your hormones are fine.

It’s probably your vocal cord paralysis.

You just worry too much about this stuff when all you really need is patience and time to heal.

Try changing your diet and see if that makes a difference. Here’s a referral for a nutritionist.

Have you tried MBSR? You just need to lower your stress.

That’s the context we’re dealing with here. My doctors have hit all of the Medical Gaslighting Greatest Hits without a single fucking solution, while I'm over here questioning my entire life or if I should just give up and go on disability because I can't function. That's a legitimate question I've been asking myself over the past six months or so. ANYWAY. Continued dialogue.

New OBGYN: We can for sure put you on progesterone, and that’s going to fix everything you’re describing. Why didn’t you ask sooner?

Why didn’t I ask sooner.

Why didn’t I ask sooner.

Friends, the rage I felt swallowed me whole in that moment. I get that question a lot. A LOT. I got it from my neuro team, who were SHOCKED that I’d never seen any neuro doctor before at all in spite of having migraines for 20 years and a brain tumor so large that there is no way it was in there for less than a decade and a half. I got it from my neurologist when I told her I’d only ever taken either Tylenol or a barbiturate for migraines, or the shot in the butt when it got so bad I had to go to urgent care or the ER. I got it from my OBGYN-oncologist when I told him I was so relieved to no longer have periods so painful that they woke me up from a sound sleep. I got it from my endocrinologist who found the cancer. I get it from my PCP every time I wait until day 10 of being sick before coming in.

They all have these shocked looks on their faces as if they’re not complicit in this system that gaslights women at every turn, even when they find a problem.

I tried what I’ve always successfully done: Bracket and pivot. Bracket and pivot.

Except I couldn’t.

So, my response: You’re nice and I like you, and you’re about to have to deal with me for the next 10-15 years. I feel like I want us to start off on the right foot and so I’d like to give you some feedback, if that’s ok?

OBGYN: I mean, sure! I don’t get asked for my consent for feedback very much.

Me: Ok. That’s ridiculous and I’m very sorry about that, and also I’ve heard that question a million times and I absolutely hate it. I have been banging this drum HARD for the past two and a half years AND I WAS EVEN PROACTIVE AND ASKED ABOUT IT WHEN I WAS BETWEEN THE TIME OF MY HYSTERECTOMY AND GETTING MY THYROID OUT. Do you know how many doctor’s appointments I have in any given year? A lot. Do you know how many of them I see as an opportunity to bring this up and so I do? One hundred percent of them. I talk about this issue with any medical professional who gets in front of me. To ask why I didn’t talk about it sooner assumes that I’ve made no effort to make it known, which is entirely untrue.

OBGYN: Ok! Noted. And good point. It's nowhere in your chart that you've talked about this.

Me: I’m not surprised that this isn’t in my chart. If I was a doctor, I’d also have a hard time wording “patient reported persistent low energy, fatigue, and hypersomnia. Gaslit her out of conversation because I have no answers. Will continue to monitor.”

(She admittedly chuckled at that one.)

Yes, I monologued at a brand new doctor. Yes, she got the brunt of my reaction to the constant medical gaslighting. Do I feel bad? No. My medical rage had to come out somewhere, and who better than a medical professional who was in the very middle of a gaslighting attempt, rather than an unwitting person who doesn’t deserve it? Some would argue that she didn't deserve it either, and I see the point, AND ALSO maybe she shouldn't assume that her patients don't do their due diligence.

So I trotted out of there with a progesterone prescription. I started taking it a couple of nights later because I didn’t want it to interfere with the cortisol testing that I was having done. I started it Wednesday night and everything went fine overall. Thursday night I woke up with…let’s call it gastric distress throughout the night, and through most of the next day. I was eventually able to rally and get to work, but wow.

In between episodes of gastric distress, I cleaned my house. I got paperwork done. I functioned like a fully normal, grown-ass adult. I did laundry. I got myself going with minimal effort. I felt normal. I was totally floored.

Then I forgot to take it but also had a “can’t get out of bed” migraine. I think my body has finished its current revolt, so we’ll see how the next few days and weeks go. In spite of the fact that I felt like absolute shit for a few days, here’s a list of things that feel WAY worse:

1. Being constantly gaslit by my doctors

2. Questioning whether or not I can even function enough to practice

3. Questioning whether or not I should just give up and apply for disability

4. Strongly considering just giving up on getting medical care at all if the only things that happen are my time gets wasted and I get gaslit for the ten minutes I’m in front of a provider

5. Being angry literally all the time because I had a brain tumor and thyroid cancer that got missed for a long time because my doctors didn’t listen or were outright dismissive (yes, I'm looking at you, Dr. "I don't know what blogs you read") when I told them what I was experiencing and nothing has changed

6. Wondering what I’m doing wrong to feel this way when the actual answer is nothing and I’m powerless against a truly awful system that isn’t designed to genuinely help me and instead is invested in keeping me sick because that’s where the money comes from

Yup. I’ll trade ALLLL of that mess in immediately if not sooner for some gastric distress but feeling hugely better in general, please and thank you.

Also, instead of rage-quitting all medical treatment (which was a legitimate option at one point of peak frustration last week), I instead moved every single Boston appointment to the same week every year, so I’ll be taking a medical vacation the first week in March annually for at least the next ten years or more likely permanently. The last one I need to change is my Lynch dude, and if I can bag my annual colonoscopy in that same week (this probably won’t happen, but a girl can dream), AWESOME. Get it all done at once. This not only lowers my stress about my appointments overall, but then gives me one big huge dose of medical gaslighting instead of a bunch of little ones spread throughout the year, which I think will hugely improve my mental health if I don’t have to just bide my time between appointments and have that gross toxic hope that I’ll get a different answer. It also will help me feel a lot more normal, which is something I've needed for three years and didn't know it until I had the realization that this change was going to help with that. (Also a huge perk is that if I'm covered in ultrasound goop from my ears to my chest or I'm in an MRI machine, I'm unreachable, so that might be the first legitimate time I've taken off and set boundaries around work since my brain surgery.)

Speaking up helps. I’m really starting to come into this idea that I get to stick up for myself and it’s both ok and I’m not going to spontaneously combust if someone says or does something not ok to me and I say something. I don’t have to explode but I also don’t have to let it go.

Ok. I’m going to go for a walk now because I have the energy to and I feel like a totally normal human for the first time in three years and three days. Happy belated hysterversary to me.

Managing Medical Rage

15 days ago, I started to feel congested and achy. “Here we go,” I thought to myself. I’d had a client come in who was stuffy. It got a little worse over the next few days, and then I got a fever.

For people who have had a thyroidectomy, fevers can be downright dangerous. There’s a reason that people who have thyroid problems also have body temperature problems - the thyroid is the organ that works with the hindbrain to control your body temperature. Mine, when things are normal, runs around 96 degrees, usually high 95s. So when I get a fever, not only is it VERY uncomfortable, there is also nothing to be done about it because I have no thyroid to be like “hey. It’s getting a little hot in here. Maybe have a little hormone and take a fever reducer and go to bed.” So fever reducing by medications doesn’t work because there’s no organ to tell my brain, “hey. She just took some fever reducer. Ease up, will ya?”

Two Saturdays ago, I was feeling tired, but ok. I went and ran a few errands and while I was out, my energy totally crashed. I was about 10 minutes from home, waiting in line at the coffee shop, and had to go home. Like immediately. That hadn’t happened in a while - to the point where I was running errands by myself again and I had started to regain trust in my own body to be able to go out and do a few things, so it was totally unexpected. (In the past, for about a year and a half post-thyroidectomy, Rob and I would have to run errands together so that when I invariably crashed, he’d be able to drive so I could sleep in the car. Yes, it was that bad.)

This felt familiar, so I got home prepared to relax and take a nap. Rob got home from the Penguin Plunge and we started to make plans and I said, “yeah, just let me take a nap,” and then proceeded to sleep for 15 hours. I woke up on Sunday feeling worse, and then on Monday, I went to urgent care the first time, knowing that they’d laugh me out the door if I went before being sick for 7 days, and even that was pushing it.

I knew I had a sinus infection. My teeth hurt, my ears hurt, I couldn’t stop sneezing and coughing, and I couldn’t move my eyes without it hurting quite a bit. I wasn’t having trouble breathing yet, but I knew that was next.

The doctor that I had was so dismissive that he didn’t look in my ears or even listen to my lungs. He just said, “yeah, you gave a virus that’s not COVID, RSV or the flu, but it’s going around. It lasts an average of 18 days. Go home and get some rest.”

COOL.

So, rest I did.

And then I rested more. During this time, in addition to the other shit, I lost my voice. (It still hasn’t returned.)

And then I cancelled my weekend because I both didn’t want to get others sick and didn’t want to cough my way through a show Rob and I had plans to see. I felt a little better, but I was Not Functional.

Yesterday came and I was able to get to work, but then I had the worst coughing fit yet, so I went to urgent care again.

The doctor listened to my lungs and was like “I’ll get a chest x-ray to confirm, but you have pneumonia.”

PNEUMONIA.

The medical rage is real, friends. I recently restarted EMDR to reprocess…just all of 2021… and my therapist was like “Ryan. Your medical rage is valid. You had migraines for 20 years that no one looked into and if they had, they would have found a BRAIN TUMOR. It doesn’t get much worse than that. Also you had concerns about thyroid stuff that no one listened to and it ended up that you had cancer, which would not have fully been found if you didn’t argue about whether or not to take your whole thyroid. YOU had to do that because almost every doctor in your adulthood has failed you. This is a systemic problem. It’s going to keep happening. I’m not sure EMDR will help with that part.”

Maybe she’s right. But I have to try because if I don’t, the rage that I feel about how I am treated by medical professionals literally feels like it’s going to swallow me whole sometimes. I have countless stories of “well if the doctor had just listened the first time, then this wouldn’t be a problem” throughout my lifetime, and so I need to be able to bracket my own reactivity to it and simply put, effectively start yelling.

Starting with calling patient services and making a complaint about that first doctor.

New Year's Resolutions

I hate New Year's resolutions. I feel like they set people up for failure, and the statistics say that they are not effective anyway and are usually abandoned within the first two weeks of the year. I think  the goals we set ourselves up for both are not realistic for us and only serve as a vehicle of shame.

Yes. I genuinely hate them.

I started my 2023 off with with one question: how can I be more compassionate to myself and to others? I started 2024 off the same way.

2023 was a rough one to start, and while I didn't have any resolutions, I definitely needed change. Because we are always the last ones to know it, looking back, I was definitely starting on a burnout spiral. Over the past couple of weeks, I have definitely done some reflecting on 2023, and overall, I think I did some pretty amazing things for myself. I'm not sure what I wasn't doing to help in my recovery from my surgeries, but I was definitely missing something. 2023 was my year to get that figured out, and figure it out I certainly did. It was a huge year of change and growth for me personally, probably bigger than most of my adult years thus far, and while the year certainly had its ups and downs, I learned more about myself this year than ever. Has it been chaotic and messy and totally beautiful? Yes. Some highlights:

• I started taking Ritalin in May, and I went from needing to carve out time in my schedule to nap every day and sleeping all day every Saturday to being a functional human without having to sleep all the time.
• I finally advocated for myself enough and got myself the mental health assistance that I have needed for my entire adulthood (and likely most of my childhood) for my ADHD.
• I found my favorite gluten-free donut places. There are three. There is one I realized recently that I cannot eat at actually, but still.
• I started eating eggs again and while that particular journey has not been fantastic for me in the digestive realm, I am better in just about every other way possible. Vitamin B3 is a thing, y'all. Definitely not the same in pill form as it is from just eating a damn egg or three or five.
• I got myself a headache neurologist, who finally gave me a concrete plan for the migraines that I've been having for 20 years and it is working. I did not have a migraine for six months this year, which is the longest stretch I have ever had in my entire adulthood.
• I was finally deeply reflective about my personal and professional boundaries and the impact of not honoring them and took immediate steps to rectify the gaps. Are there still some? Absolutely. But I am feeling better, which tells me that I am very much on the right track. As a result, I feel safer than I ever have in my whole life on many fronts.
• I've had many professional accomplishments this year, but by far my biggest was acknowledging that I cannot run my very quickly growing business alone. I not only hired more targeted admin help internally within my business, but I surrounded myself with a network of colleagues and friends who are doing the same things that I'm doing and got the support that I needed from people who get it. I now have a beautiful network of colleagues and friends that I am really proud to call my people. I also feel really proud of the work that I'm doing.
• Probably the biggest thing though, is that if something was happening and I was in a position to advocate, I did it. Around a year ago at this time, I testified in front of a committee of the New Hampshire house about a transgender bill, I fought with Medicaid about reimbursement rates and won, and most importantly, if something was really fucked up, I didn't just let it happen, and I didn't care about the audience. Even if they were in a position of power, if they were doing something that I felt was really wrong, I said something. This was really huge because I spent my life being silenced, and I just realized that I don't want to live that way anymore, so I stopped.
• I believe that I hit peak burnout in early October. I was at a conference, I lost the entire first day to work stuff, and this was when I realized that I had a big problem that needed immediate addressing. And so, that's what I did! I made sure to go to a couple of really cute yarn shops before I left, I left the conference early, I took a week off of work, and during that time, I addressed it immediately. It resulted in such a drastic drop in my workload that I didn't actually know what to do with myself for a little while, but I'm adjusting.
• I also finally realized my own emotional exhaustion on many personal fronts and took concrete steps to address it. I went back to therapy, stopped doing things that were causing said exhaustion, and as a result I feel a lot better.
• We adopted a puppy. Has our life descended into chaos as a result? It sure has. But I would not trade either of these dogs for the world, even if Ruby and her wildness was the reason that I broke my hand two weeks ago.

2023 also had a little bit of a rough end when I broke my hand the Wednesday before Christmas, so it was a nice bookend to the way that it started, but I think it was the Universe's way of telling me to keep going. Keep leading with compassion, and keep the fires of self-compassion burning. Were there things that I could've done better? Always! But I feel more in a position to look at those things without shame and do better than this time a year ago, and that ain't nothing.