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!)