Vestibular Migraines and New Information

Last week's chaotic good?

My ENT appointment.

As I mentioned before, I have been occasionally experiencing total hearing loss in my left ear. It lasts a few days, is sometimes a little painful, and is always accompanied by dizziness, but not to a debilitating degree. I talked to my neurosurgeon about it since it's been happening since my brain surgery. She wanted to get an audiogram to make sure that it was nothing to do with my hearing (and it isn't - but then again, I was not experiencing one of these episodes during the audiogram.)

As with all chaotic good lately, I didn't have to look for it because it presented itself immediately. I was in my appointment with my ENT, and he asked what was going on. You know my answer?

"I unapologetically use Q-Tips to clean my ears. This is not that." Good thing he was wearing a mask, but I'm 90% sure that if I had seen his entire face, he would've been scowling. I definitely heard a heavy sigh and when I called him out on it - as in, "I heard that heavy sigh" and he laughed - he said, "I don't have to tell you how dangerous that is for your ears." My response? "Nope! But that also won't stop me. Also I was cleaning my ear out with a Q-tip yesterday, and I hit something and it was so painful I had to sit down for a minute and almost blacked out."

He did a...we'll call it thorough exam of my ear canal. All the while talking in general about Q-tips. He definitely wanted to get the point across that under no circumstances should I be cleaning my ears out with them.

Message received. Still doing it. Just did it this morning, as a matter of fact.

We then had a rather humorous conversation about cranberry juice and I told him that if it was Meniere's disease, I'd choke it down every day if I had to. I effing hate cranberry juice. I also made the point that when I called him about this issue a few months ago and was told to drink said cranberry juice, that was hands down the weirdest medical advice I'd ever gotten, and he chuckled and was like "yeah, I get it."

During this discussion, he asked me some very thought-provoking questions and took a more thorough migraine history than any doctor I've ever had (yes offense, neurology team). I was confused why he was asking these questions, and so I asked! You know what he said? "Migraines don't just go away, Ryan. Your body changes, as yours has drastically over the past two years, and they shapeshift. But they don't just go away. I think you are having vestibular migraines."

I hadn't even put it together, but the pattern fits. I get them about as frequently as I was getting migraines before my brain surgery, and while the pain isn't there and the light sensitivity isn't either, I have a hunch that he's right based on the symptoms he rattled off about vestibular migraines.

Do I like this theory? I absolutely do not. I thought I hadn't had a migraine in four months, yet I'd had this problem about 11 times in that time period. His solution is a tricyclic antidepressant, oddly enough, but it's also used to prevent migraines. So, we're going to try that for a little while and see what happens.

In other news, this week's chaotic good was that my voice healed from the botox and the flu and the gross. I definitely belted out Lizzo in my car yesterday on my way home from work and I'm so stoked that I can't even. I won't overdo it. Yeah, that's a lie. This is the first time I've had a full voice in a year and a half, and I'm taking it for a ride until the filler wears off in a month and a half or so.

There's also my hair (which is so ridiculous and I currently look like Gilda Radner, but I absolutely love it) and the fact that there was a bat in one of my offices yesterday, and life has been full of shenanigans that are funny even when they're not funny.

This chaotic good thing is going to work out just fine.

Chaotic Good

I don't make New Year's Resolutions. I think they're bullshit and from what I see from my vantage point, what ends up happening is that people who can't follow through with them, which is most of us, are left feeling less than when they give up the ghost on a goal that was likely unrealistic, but they couldn't admit that to themselves.

Instead, I set intentions. I start to figure out what I want to manifest the coming year.

Do you know what one of my favorite things is? Chaotic good. It's when someone is trying to do good, and the outcome is good, but hoo boy, the route to that good thing is...chaotic. Or maybe the good thing creates chaos. Either way, chaotic good is my jam. Anything that will flip the table on me and snap me into a better frame of mind is worth paying attention to, because that's hard to do in general.

So, my primary intention? Find the chaotic good.

Some examples, you say? Of course! My very first one, and it happened on like January 2:

I found this tea that I am absolutely WILD about. Chocolate Hazelnut decaf tea by my favorite tea company (Stash, if you're wondering. No this is not a plug for them, because that's not the purpose of this story, but in case you want to try some pretty amazing tea, there ya go. They have like a million flavors.), and you can order a gajillion of them on Amazon. So I ordered a box of 100, knowing that I was going to blow through it because hyperfixations, and I expected it to come maybe in 10 boxes of 10, or 5 boxes of 20, or some other neat way.

Nope!

What I got was this:

One hundred tea bags, packed like that. I laughed so hard when I opened the box that I needed a minute to not hyperventilate.

I still randomly laugh about it from time to time when I walk past it, because how do you even put tea away like this, so let's just keep it in the box since I drink like six cups a day of it anyway.

I also tried amigurumi last week, and it came out not terrible! My first project was a narwhal. I named him Eddie and his fins are uneven and his horn is HILARIOUS. I'm trying a unicorn next.

Also, the business that I run is chaotic good. Do I want to throw things at least once a day? Yes. But I also kiiiiiind of live for it. It's also gained the kind of financial stability that I've been hoping for over the last three months or so, and I went from "Am I going to make payroll this week?" to "Yes I can Pay Myself Fully and Consistently and I won't Bankrupt This Business" kiiiiind of abruptly, and I'm pretty relieved about that. We're also on an even keel at this point around how the day-to-day operations are happening; just gotta hammer out a few other very tiny things, and we're good to go. I'm trying hard not to manifest an office in the Lakes Region, because I DO NOT NEED a fourth office, and that's working at this point. The thought pops into my head daily, but I'm not going there right now. Three is enough at this point in time and I have no intention of opening any offices for at least three years, thank you.

My most recent chaotic good is my favorite, and they just keep getting better. Are you ready?

Seriously, hold on to your hat.

Snoop Dogg made a Youtube channel called "Doggyland" and it's full of kids' songs and affirmation videos for kids. 

I just.

I was scrolling social media like I do, and up popped a video of a parent lip syncing to one of his affirmation videos. I was stunned for a minute when I realized that it was, in fact, Snoop Dogg, and the video mentioned that he has created a ton of content like this. Feel free to click on that link and enjoy.

I also think I had chaotic good yesterday? I tried float therapy. It's sensory deprivation while you float in warm salt water for an hour. Did I come alarmingly close to a panic attack and have to leave after 30 minutes? Yes. But it's also given me something to work on, and that's definitely...something.

Anyway. Over the next few weeks, I'll have less of a mental capacity to look for chaotic good, which tells me that I have to lean in and work harder to find it. Follow-up-palooza is happening in February and March (and starts right on February 2 with an audiogram to figure out why I randomly lose hearing in my left ear from time to time since the brain surgery and will likely end with an endocolonoscopy in April), and I become a pretty insufferable human during follow-up-plaooza. I try to give myself some grace - Brain MRIs are stressful. Thyroid and lymph node ultrasounds are stressful.  Getting poked a million times to get blood taken or get contrast is stressful. Driving in Boston during morning rush hour is stressful. Of course, the self-validation is nice, but it doesn't lower my anxiety level. Self-care is literally the only option to help me during this time.

So, I decided that since my brain MRI is the week of February vacation, I'm taking that whole week off. Rob and I are going to see Hamilton that week too, so why not just lean into it and make my two days off five? Follow-up-palooza means ramping up the self-care, and I like that I know that and I'm not fighting against it finally.

I've also realized that self-care isn't supposed to be something that I fight against, but I have continually again and again and again. I mean, it's not torturous, or at least it doesn't have to be, yet I have historically resisted like someone's trying to get national secrets out of me or something. And I wonder why I get sick whenever I stop? Really?

I'll learn one of these days.

Better vs. More Functional

Awesome Neuro-Oncologist: How are you doing?

Me: Physically? Better than I have in 20 years. I lost chronic pain that I didn't even know was there, my energy is starting to get better, and I feel amazing. Mentally? Not so much. I'm super easily overwhelmed, and I can't seem to have enough of a capacity to do everything that needs to get done in any given day and as a result, I'm totally frustrated and overwhelmed for a good 80% of my day every day. How do we fix that?

ANO: ...you're six weeks post surgery tomorrow, yes?

Me: Yes.

ANO: Why are we having this conversation now? We're a few months away AT LEAST away from being concerned about you functioning at full capacity, if not years.

Then she said something I liked even less:

"Just because you have a medical brain injury, it doesn't make it any less of a brain injury just because someone went in with a scalpel and did it intentionally in order to make you better. It takes a long, long time to recover from what you just went through. Patience is how you fix that."

Me: Well, I'm not sure I like that answer very much.

ANO: Um. Ok.

(I have a startling amount of doctors who care not at all about how much I like their answers to my questions. This both displeases me and is super awesome.)

From where did this conversation spring?

I went back to work last week - full time, a bunch of supervisions, a bunch of clients, and 29 total hours of clinical work between those two groups of people. That does not include administrative work, emails, and feeling like I've been hit by a two-by-four and needing a nap in the middle of the day.

To say that it was overwhelming would be the understatement of the universe. I took a one-hour nap last Thursday and woke up to 15 emails and 7 text messages, and this happened whenever I was in session as well and started first thing Monday morning. Every time I was away from my email and phone for more than 30 minutes, I could count on at least 10 pieces of communication between my email and text and client portal.

I'm starting to realize how much lower my capacity is since this surgery, and I think that I've been fighting against it to the point where I haven't allowed other people to even form a whisper of an expectation about my capacity. Others, I think, have this expectation that I was just going to bounce back, and I have physically, but mentally that hasn't happened, and I hadn't clued in ANYONE to it until literally this week. Seriously, I mailed out two packages that have been sitting in my car for the past week, and that was such a huge victory that I can't even express it. Before, I would have just gone to the post office on my way to work, and it would not have been a big deal, but I couldn't for the life of me bring myself to get there until today. Every time I would think about doing it, I'd get overwhelmed and I couldn't do it.

This is very, very problematic. I've set a very, very bad precedent for myself because after my first two surgeries, I bounced back VERY quickly. Not so with this one. Do I look physically fine on the outside? Yes. But, the difficulty is that I become SO MUCH more quickly overwhelmed that I'm experiencing what it's like to shut down as an adult. It happened a lot when I was a kid and I thought I was past it, but I have learned over the past six weeks that I am most definitely not.

This is very difficult because my game face needs to be on more than ever, and I just can't get it there. I'm annoyed and irritable, I'm overwhelmed, I'm antsy, and I'm fighting against what my capacity actually is.

So, what I need to do is be more vulnerable so that people can check their expectations. It started with this conversation with my doctor. I had to be truthful about what I was experiencing, because honestly, my own expectations need the most checking here. What that conversation led to was that I should only be working part-time until further notice. Those are three big words, "until further notice", and I hate them with the fire of a nova. I want LITERALLY more than anything is an end date for this effing nonsense. When can I know that this will be done? Give me a date. Give me a timeline. I know I can go forward into murky territory, but this is not even a little what I want. Give me all of the medical appointments. Give me all of the PT or the speech therapy or the OT. I'll go every day if it means that this gets done sooner.

And yes, I've reached the bargaining phase of all of this bullshit. What can I do to make this go quicker and just be done? The answer is radical acceptance. This is where I am. No, there is nothing that I can do to change that, and the only thing I CAN change is how I respond to it. I literally have no choice but to meet myself where my capacity is. Will it get better? I hope so, but I'm not sure. I'm really not sure, so I have to plan for the idea that it might not.

My brain is currently fighting with itself - it's wavering between being frustrated because why can't I just respond to that email or scan that document and send it, it takes two effing seconds, and the rational side of my brain, which says that I have 11,000 of those requests on a regular basis and my capacity is lower because I just had brain surgery 5 weeks and 5 days ago, have some self-compassion already, JEEZ. It's the internal wrestling that's difficult and frustrating, and I absolutely, unabashedly hate it.

An Open Letter to Primary Care Doctors Everywhere

Dear Primary Care Doctors,

If there is one thing that I've learned over the past year, it's one thing:

Do better.

Just do better.

What does this mean? Read charts before you see your patients. It's a part of good medical care. I know that if I took on a new client and someone sent me records, I'd want to see them before that person ever set foot in my office because I wouldn't want them to have to rehash things that might be really difficult. Granted, I'm a mental health practitioner and so I deal with some of the most sensitive stuff that anyone can bring into a practitioner's office, but still. The premise still stands. Good care means knowledge about your patient.

Medical trauma is a thing. While it doesn't show up anywhere in the DSM, for sure it causes PTSD for people. It's not for me currently, but I'm still in my own medical trenches and because of my own mental health history, I'm definitely on alert for symptoms, because my risk of developing it due to medical trauma is high. Having to talk about all of this in detail could have potentially been retraumatizing for me if I were not able to manage as well as I have been.

I hadn't seen my PCP since this time last year for my annual checkup. My hysterectomy had just been scheduled, and I knew that thyroid stuff was coming, but I didn't have any idea what was to come in 2021. For all I knew, I was going to have the hysterectomy and that was going to be it. I hadn't yet had the ultrasound of my thyroid that put my endocrinologist on high alert and had her immediately commit to me having my entire thyroid removed when we previously had just had a discussion about me having half removed. I hadn't yet had any kind of conversation about a meningioma. In fact, the last time I spoke to anyone in my primary care office was in May, when I was called by a nurse who told me that I likely had a meningioma and that I needed to see a neuro-oncologist. I didn't so much mind that, because at the time, I trusted that someone would be following my chart at some point before I saw anyone in my primary care office again.

I was mistaken.

I had my annual checkup this past week and I was forced to rehash everything, because this doctor clearly had no clue what had been going on for me medically. She was surprised when I brought any of it up, as if it was new information. The Lynch Syndrome diagnosis. The endocolonoscopy. The hysterectomy. The thyroid surgery. Thyroid cancer and radioactive iodine. The emergency cerebral angiogram three weeks before my meningioma resection due to a 12-day headache. The menigioma resection, for which I was still on medical leave at the time of this appointment. I was off kilter for the rest of the day after this appointment, and I find myself still bothered by it. I know that my PCP office had access to all of my specialist records, because I signed releases about 15 different times. I know that in my chart, there were notes about these surgeries and medical procedures. What I've realized is how frustrated I was that I had to talk about all of this. The person that I saw tried to be as validating as possible - "Wow, you've been through a lot this year." Yes. I have. And it wasn't helpful for me to have to talk about every bit of it in this appointment. Follow-up questions were appropriate. Disbelief and surprise that I had three surgeries and two medical procedures this year was not.

There has to be a better way. Please find it.

Sincerely,

Me and all other people who've been through a ton of medical stuff.

No Thank You!

Hmm. Maybe I should wait to do that until after my surgery.

Hmm. Maybe I should wait to make those plans. My surgery is coming up.

You know what?

Fuck that. Absolutely, unabashedly, fuck that noise.

In other words, NO THANK YOU.

I'm not sure when I decided that I wouldn't wait on things. At first I hesitated because I didn't want to make the decision and then not be able to follow through. And then I hesitated because I had a temper tantrum about not being able to make plans for anything at all ever. And then at some point I just...decided to stop waiting.

This has been a long year and I was tired of waiting for my health to improve before I started working on my bigger goals. I just couldn't wait any longer.

And hoo boy, do I have some bigger goals.

I was talking to someone today about boundary setting and incorporating three words regularly into their vocabulary: No Thank You. In this particular instance, they were feeling parented by a peer, and I introduced them to the "no thank you" of it all. If this person decides that they want to give you advice when you didn't ask for it and didn't want it? No thank you. That literally needs to be your only response.

If someone tries to invade your boundaries? No thank you.

(It's not mean. We just think it is. And, if it feels like shit, then that means we're doing necessary boundary work. It's a good thing.)

I decided to try it with myself. Why do I really want to wait on these things? 

Maybe I should...

No thank you.

I'm not doing enough of...

No thank you.

I have to make sure that I don't forget this or that, or the Very Bad Consequence will be...

NOPE. NO THANK YOU.

I'm not doing as much as I should be and I'm going to be totally unprepared to not work for four weeks...

No thank you.

In other news, I think I'm going to have to wear a post-surgery turban. One of my friends suggested that there is funnier headwear, and I agree, so I'm going to try to make it hilarious.

Maybe I'll have people sign it like a cast.

My point? Shit's getting real, kids. On several fronts.

By activating my inner "No Thank You", I've found myself to be ready for every single bit of it.

Maybe I should make sure that all of my electronics are charged so I can bring them to the hospital and make sure that people can get in touch with me.

No thank you. Rob's going to do that and he has already volunteered to do that.

Maybe I should make myself a to-do list for when I get bored while I'm out.

No thank you. Napping will be just fine. You have a team of Very Capable People that can do all of these things, and if they can't, then they can wait. Seriously. THEY CAN WAIT.

Maybe I should make a plan for exercise so that I can start doing that as soon as possible. That marathon ain't going to run itself.

NO THANK YOU. You're getting a treadmill delivered after Christmas, and it will be walking only for at least three months. WALKING ONLY.

Maybe I need to eat better in this time so that I can prepare myself better for surgery.

No thank you. Use this panic time to eat whatever the heck you want. Eat healthy after, which is also what your doctor recommends. And yes, you may go home and make that second box of mac and cheese today. Do it up, friend.

It's amazing how much inviting in No Thank You has also invited in self-care. I'm kind of floored and in absolute love with this idea.

More to come. Stay tuned!

Adversity as an opportunity

Friends, my meningiomectomy is coming. (I'm not sure if that's what it's actually called, but that's what I'm calling it.)

Marvin is getting evicted, tentatively, December 15. I'm ready. This is the last thing in the unending tirade of medical bullshit that has come my way this year. And, if Marvin is benign, this surgery is curative. CURATIVE. After this is done, all that's left to do is recover and to heal. And to have a Ceremonial Burning of the Medical Paperwork of 2021. Let me tell you, I have A TON of it. Like, a ream and a half of paper. Of course, I have to have another colonoscopy in January, and then there are the every-three-months follow-ups for a few years with my endocrinologist, but I will not be in a doctor's office three times a week come this time in four months. If I am, I'm going to strongly consider quitting my job and being an arsonist as a next career move. (JUST KIDDING. I AM NOT A SAFETY RISK TO OTHERS, I ONLY MAKE VERY INAPPROPRIATE JOKES.)

Anywho, with, y'know, brain surgery coming, it's given me a fun opportunity to delve into the world of hairstyling. A fairly significant portion of the left side of my head is going to be shaved, and while Rob thinks that the best course of action is to shave my entire head, I'm not so sure. I don't want to freak out my clients, we'll be going directly into wintertime, and I don't want to wear a hat everywhere, so there's a lot to ponder. Pinterest has some very interesting wormholes in the world of hair, let me tell you. I so rarely take care of my hair - I go to the hairdresser maybe once every four to six months - and so I've got a lot of pondering to do about it. My hair is curly, which adds another dimension to it, but I think I'm finding some really, really fun stuff.

Of course, I say that I'm going to sit with it and figure out what I want and be methodical, but given that I have an impulse control problem, I'm likely going to the hairdresser tomorrow. Yeah, I'll be going into the office on Tuesday with all of my hair chopped off. I've wanted a new hairstyle for a while, and I'm super stoked to change it up a bit.

I've also decided that the thyroid cancer has not spread. I'm having a total body scan in a week and a half to see where the radioactive iodine is concentrating, and it will show no spread. It just won't. The surgeon took two lymph nodes and one of my parathyroids in the thyroid surgery just to make sure, and they were all negative for metastasis, so the chances of that being true are pretty good. My geiger counter came in the mail today, and I've been having a hilarious time holding it up to things and seeing if they emit radiation. I imagine I'll find it less entertaining when I have to hold it up to myself and it dictates whether or not I'm able to leave the house, but I digress.

Also, my hate amalgam is ruined. RUINED. KYLE IS A REALLY NICE DUDE WHO IS JUST TRYING TO DO HIS JOB. To add insult to injury of the death of this hate amalgam, my therapist was all "How about you just feel the anger that you feel, Ryan?" PFFT. WHAT DOES SHE KNOW OTHER THAN THE MOST INTIMATE DETAILS OF MY LIFE AND MY DEEPEST THOUGHTS AND FEELINGS THAT I WOULD NEVER SHARE WITH ANOTHER PERSON EVER. I mean, this is a great opportunity to be able to actually delve into my feelings about all that has happened over the past year, so there's that, but I'm just so MAD about it. Everything is annoying, and I am Most Definitely Not In A Place Where That Can Be True. I'm trying to run a business and bring on new clinicians and be supportive of my clients and navigate all of this medical stuff. My feelings can take a number. The reality is, my feelings are currently the Karen in the Deli Line that's all "I don't have time to wait for this! UGH" and has a temper tantrum and everyone just wants to shut her up and just lets her cut to the front of the line. There's a lesson to be learned there, which is that my feelings need their turn in the front seat for a little while so that they don't jump on the hood of the car, but I don't want to learn it. I just don't. There's a big part of it that's fear - if I open up that well of rage, will I ever be able to close it again? I was able to practically cement it shut in years and years of therapy and trauma work, and I didn't expect to have to let it out again, but here we are.

Who knows. Maybe I'll pick up boxing. Punching things feels like a good idea and a good way to get out some powerlessness and frustration and rage, and it's WAY more productive than what I'm doing currently, which is nothing.

A Rant About Ableism

Recently, one of my doctor's appointments was made without consulting with me. I was called by the nurse that made the appointment (and yes, it was the real-life Kyle) who just called and told me the appointment time. No negotiation, no "pick from a list of these times". It SUPER bothered me at the time. At first, I wrote it off as just being bothered by everything lately, because I am, and so just add this to the pile, but it continued to stick. I couldn't let it go. It was for my radiological oncology appointment - my first one. I called to change the appointment, but I couldn't without messing with the timeline for treatment, and the conversation yesterday (after trying three times unsuccessfully over the past week and a half to get this appointment changed, I finally got someone on the phone) went something like this:

Me: Hi! I'm scheduled for an appointment in early September, and I need to change it.

Scheduler: Ok! We can get you in for a consult in mid-October.

Me: I can't wait that long without messing with the timing of treatment, which has to be done within 3-6 months of my diagnosis, and I'm already 6 weeks post-surgery, so I'll figure it out and just keep that time. Also, can I ask? Why was this appointment made without consulting me in any way?

Scheduler: That's just how we do it.

Me: You should change that practice immediately. My very busy life does not center around this diagnosis and I'll have to change my whole schedule around to make it. Moreover, who says that's a good practice? Why is that policy in place?

Scheduler: Well when works better for you? (Do you see how she turned it around there and didn't answer my question? Her tone also suggested that I was being entitled about it. Nope!)

Me: I don't understand how that's relevant, but mornings work way better for me.

Scheduler: Ok. We'll remember that for the future. In the meantime, we'll see you on September 9 at 1:30.

I had a meltdown of nuclear proportions about this. I was so pissed that I didn't even know what to do with myself. Once I was done melting down about it, I sat with it. Why such a strong reaction?

What I realized is that the reason for this is because they have me by the balls, and they know it. I had another doctor's appointment at that time and had to cancel it, and I also had times that I needed to see my clients during that time and I had to shift it all around. 

The thing for me is this: they deal with cancer patients all day. There's a sense of powerlessness that I've felt about this that I've never felt before. I'm in the middle of a time in all of this medical stuff where I need to be able to have some semblance of control over what's happening to me and my schedule is where I find it in spades, and it was taken away from me in a blink. Is this objectively a big deal? No. To anyone who isn't going through this, of course it's not. But, I can imagine that for other people going through similar, or even more severe things like this, they may feel the same way as I do. The person on the other end of the phone doesn't know or realize that, and neither does Kyle. Neither does anyone who has never been through it. There's a privilege that comes with not having to grapple with something like this that I think a lot of people don't realize.

What I also realized was that this wasn't just about the appointment. It was about the powerlessness. I felt a big piece of grief yesterday that I've been pushing away for awhile, and it has to do with my utter powerlessness to stop what's happening except to accept it and go through the motions of being treated, and there are many things about which I don't have a say. It's so surprising how some of this stuff bubbles up, and what can push on that button unexpectedly.

There's also a piece of this that isn't about me at all. When you have multiple medical things that you're juggling, it's its own full-time job. For someone to just swoop in and assume that you can make it work and figure it out, it goes beyond rude. It goes beyond disrespectful. Due to the nature of my work, I know a lot of people who are managing multiple medical things; I've heard time and time again the frustration of trying to manage schedules and "Oops I have two doctor's appointments at the same time, I can't believe I did that, and so now I need to use my triage skills and figure out which one to keep and which one to reschedule", and from a patient care standpoint, the idea of just scheduling a time for someone without their input is so deeply ableist. It hits two ways: The first is that medical organizations, by doing this, show you that they operate under the assumption that you can't or won't do it yourself. The other is that if you can't make it work, that's just further proof that you can't manage it on your own. The power differential between doctor and patient is only further reinforced that their time is more important than yours, and they have you by the balls, so you are the one who has to make it work. Patients are screwed either way and are treated like they don't know what they need in terms of their own care.

This is changing how I practice clinically, without a doubt. My availability is drastically changing due to all of this medical stuff, and while I don't have control over that, I'm definitely putting more of a priority on letting my clients have more say over when we meet when I'm able to do that. I think that the more say we can give someone when they're going through something hard, the better. Also, the more we can give them the space to say "I need help with this" to the people who are there to help them, the better. Make it safe to ask for help and to change things up a bit in the most basic of ways, and I think people underestimate how much easier that will make people's lives.

I understand that doctors be doctoring. I understand that I'm not the only patient. I understand that they have schedules to keep and patients to treat, and there is a limited amount that I can do about that. All I want is a shred more of understanding that I need a say, too.

At least that's what I'll be telling the patient feedback department when I call them later to start the advocacy train rolling about this.