Tuesday, February 20, 2024
Managing Medical Rage
Tuesday, January 2, 2024
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.
Monday, October 30, 2023
Professional Self-Care
Thursday, March 23, 2023
Wow.
Tuesday, February 7, 2023
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.
Sunday, January 29, 2023
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.
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.
Wednesday, January 26, 2022
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.