What am I up to now? (3-Month Updates Onward)

Just for fun, I'll keep recording how my symptoms are and give y'all the big updates about what's going on in my life these next few months. I figured I'd have this post cover updates from the day after my 3-month office visit and onward!

Here is the headache key again, where unless otherwise noted, "pain meds" on this diagram means 400 mg ibuprofen :)

POD 98

We got a good bit of snow this day (for the south), so I went out and made a snow(wo)man. I actually got pretty tuckered out rolling her through the yard. Everyone say hello to Sally! 

POD 100

Happy 100 days post-op everyone!! I celebrated with cake, delicious Mexican food, and an episode of my current favorite show Severance!

POD 101

I went to the gym and ran an entire mile (on and off) as my warm-up, which is crazy. After my workout I actually felt great, which is a welcome change. Once I started getting sick in summer 2023, I felt worse every time I worked out. A "quick run" could lead to a debilitating spike in my head pain that lasted days. But this day, my hair was up in a high ponytail, I was exerting, and I felt amazing! I’m going to try not to push myself too much just in case, but I’m overjoyed.

They also had this super sweet display up by the front door of the gym. I've never seen a rare disease awareness display before, so it was really cool to see on such a big day for me. My dad added my name. 💜

POD 103

This was my first day going for a run outside!! The weather was perfect, it was 60 degrees and I ran about two miles on and off. After that, I did 30 minutes of walking on the treadmill to get my neck PT in.

POD 104

I got my wisdom teeth out on this day since I have been meaning to get it done before going back to school and my neurosurgeon cleared me for everything! Brain surgery really makes recovery from everything else feel like a breeze! 

Note: Days 104-109 are color-coded based on how much head pain I was experiencing, not how much ibuprofen or acetaminophen (abbreviated: apap) I was taking since I was primarily medicating for my tooth extraction not head pain.

POD 109

This was the first day I did what felt like a full home workout routine! I ran two miles, walked two miles, and did a mini abs, biceps, and triceps circuit which was so fun!

POD 117

This was my first full solo day back at school! My dad came up with me a couple of days before to help me reset my apartment and give it a little refresh so I could get some of the previous sick vibes out of there. I have things on my wall now, it looks like someone's permanent residence instead of a girl who moved directly from a dorm into an apartment (which is absolutely what it was when I first moved in). This is me after returning from my first grocery store trip. We stay crushing these iADLs!!

POD 118

This was my first day back on campus since leaving for brain surgery! The last time I was here, I dropped off my OR scrubs in the middle of the night because I didn't want to explain anything to anyone I knew. 

To get used to being on campus, I scheduled a few appointments this day. I had a bit of a biological reaction at first, but I have hyperhidrosis even when I’m totally mellow, so that didn't knock me off my square. A very welcome surprise was I mainly felt excited to be back instead of afraid. For the longest time, I felt like I didn’t really belong at school because I was hiding how sick I was, and I don’t like hiding anything. 

As a chronic oversharer (see: this entire blog), hiding that I felt like I was dying was like dragging this massive weight behind me that was attached to my skull. I dragged it through every social interaction, every patient visit, every everything. My sickness cheapened every experience so much that my life didn't feel like it was mine anymore. 

Being back now, I have the same giddy feeling I had when I first toured the school after getting accepted. Especially after running my typical loop (which I thought I’d never do again), and visiting all my favorite places (which I also thought I’d never do again). My life is mine again. 

POD 119

I had Basic Life Support CPR training since I was due to complete it before resuming rotations. It’s a super basic clinical skills training (as the name would suggest), but completing it felt huge for me because this was my first clinical experience since surgery! Just a few months ago I didn’t think I’d be doing anything clinical ever again, so another win!

POD 133

This was my second day of orientation training for my rotations! It was hosted downtown and took four hours, which I would have had a dismal time doing pre-surgery. These past couple of days have been a lot of running around and getting things squared away for returning to school in May, and it honestly feels really good to be busy again. Even in moments where I have gotten temporarily overwhelmed, I remind myself what a privilege it is to get to worry about such goofy stuff.

Instead of the things I could have worried about if there were certain complications with my surgery, or not even having the mental capacity to worry if there were certain complications after my surgery, I get to worry about getting a good score on my silly training exam. I’m going to keep this mindset as much as possible during rotations. I am here to learn, have fun, and gain new skills. All this (living independently again, being back at school, even just sitting by a window and being able to tolerate sounds again) is an insanely surreal opportunity that I was almost certain I’d never get to have again. 

POD 134

When I was super sick, there were days I could barely get up to eat. If I did, most food was canned, frozen, and/or from a box. In recovery, I also ate so many saltine crackers to help with my nausea that we were purchasing them in packs of 500. Since it was difficult for me to look at this stuff and I was dreading eating them anyway, I donated it all because I wanted someone who didn't have that same adverse reaction to them to actually enjoy them. This felt like the end of an era and it is so exciting to think that in this new phase of my life, I’ll be out of bed long enough to cook meals and go to work! 

POD 140

This was the first day I started looking at study materials again for school! I started on some Step 2 UWorld questions and made some Anki cards based on my incorrects. 

Exciting but sorta alarming news: It feels like I’m studying with someone else’s brain. I could remember a concept that I reviewed a week later. I would do a practice question and sometimes could remember learning that concept during Dedicated over a year ago. I could mentally picture some charts or diagrams I learned from my second year of med school. 

A year ago, I could review topics thoroughly (with practice questions and exam review and notecards) for hours and not remember ever learning that subject the next day. So it’s absolutely insane that my brain can do this stuff now. I always knew my brain worked in an unorthodox way, but I just developed workarounds and used humor to make it seem like less of a big deal. No one has any idea how much I did not know what was going on in the first 24 years of my life. 

There have been more times than I can count when people have had to tell me something more than once because I didn't remember and they would get offended and tell me I wasn't listening to them. But the most frustrating thing is that I was listening, I just wasn't recalling. I heard them when they spoke to me, but I couldn’t retrieve that memory once I had it. Or maybe it was never encoded in the first place. I would write things down on scrap papers and tape them to the inside of my kitchen cabinets so I would see them a bunch and hopefully not forget them (~50% effectiveness on this one). I would transcribe the main points of casual conversations in my Notes app so I could ask a person how that thing went for them later on, and I would forget that note even existed right after I wrote it (<50% effectiveness). It was almost like there was a cork separating my brain from my spinal cord. Surprise!

I tried to tell people it was never personal, my brain was that way with everything. I needed a GPS to get to the grocery store on the same route we had driven for over 15 years in my hometown. Memory match card games and those icebreakers where you have to remember details about the people you met were the stuff of my nightmares.

My brain is still mine, and I still probably do not have a memory anywhere near as good as most of the population. I am still probably going to forget most things, but I feel like I have a way better shot at remembering things now.

I’m not going to push myself too hard with studying to make sure I enjoy this time off before getting fully back into the grind, but it makes me feel less worried about rotations by getting my feet wet with questions again. Plus, it’s really fun to feel like I am in control of my brain.

POD 144

This was a HUGE day for me! This was the second day of a two-day music festival and I was fully present the entire day! It was in the high eighties and sunny for a good bit of the day, and I was outside for over 9 hours and standing almost the entire time with really loud (fantastic) music. 

I felt pretty sick the night before because I definitely overexerted and didn’t hydrate enough. So I brought some Pedialyte and drank over 3x as much water. I had a headache throughout the day but ibuprofen really helped (which it never did pre-surg) and I had so much fun (my favorite performances were Lil Wayne, J.I.D., EARTHGANG, and J. Cole).

Fun side note: I was able to remember my festival locker number and combo after only viewing the info once, which I never could have done even at my healthiest pre-surg. Brain fog can go screw!

It is so cool to start testing the limits of what my body can do again. To live life so fully and able-bodied less than five months after my surgery is surreal, this day goes in the wins column too!

POD 155-158

I visited one of my best friends in Rochester! This trip was long overdue, we'd been talking about it for 6+ years. Even though this whole break from med school wasn’t in my initial plans, it has enabled me to do so many fun things I never could have otherwise. Getting to do everything we wanted to do without my symptoms holding me back was so amazing!

POD 162-163

I got to have THE coolest experience with Bobby Jones CSF, they invited me to their annual Think Tank at the AANS Conference in Boston!

Since the first event was a welcome dinner, I caught a super early flight that morning and made it a full-day Boston trip! 

The fact that I could plan and execute any of this is absolutely insane to me. The little things like not forgetting anything when I packed, being able to use a GPS to get somewhere, being able to walk any and everywhere I wanted with no physical limits, looking at my computer screen long enough to make this itinerary. These are all things I feel so lucky to be able to do, and I had the time of my life!

I did a walking history tour and saw the Mapparium and Isabella Gardner Museum, explored downtown, and spent time at the Seaport District!! With almost 10 miles of walking and setting my own Ubers and itinerary, it was so crazy to be so independent.

POD 168-172

I went to see one of my absolute best friends in LA!! This was a great opportunity to see what my body could do. We:

• hiked up to the Hollywood sign and checked out the Griffith Observatory
• pedaled swan boats and went to Thunderbolt in Echo Park

• visited the LACMA and La Brea Tar Pits
• drove the Topanga and Malibu canyons and explored Malibu
• hung out at Venice Beach
• explored Marina del Rey 
• rode the Ferris wheel and West Coaster at Santa Monica Pier

It was so amazing not having my body holding me back when I was there. I didn’t think my body could do half of this stuff even now, and a year ago, my body could not have done 5% of it. This was a much-needed reset and a once-in-a-lifetime adventure!

POD 174-180

These past couple of days have been rough. I was going to write something more eloquent, but I figured it was more real to share the notes I made to myself chronicling my symptoms with you all:

I called my dad and broke down after my episode in the shower because I wanted to escape from my body. My body was failing me so severely again that I didn’t know what to do. 

In talking to my dad, we agreed the goal was not to solve everything, it was to survive the day. So I made a plan to go to the urgent care and update my neurosurgeon telling him everything. 

At urgent care, I was able to get some ondansetron and meclizine so I've been taking those for symptom management. I am also taking Zyrtec D in case this is an inner ear thing. I’ll let y’all know when my neurosurgeon gets back to me and will keep y’all posted with what we decide to do. 

I think part of why this hit me so hard is I stopped thinking of myself as “being in recovery”. I have had 140 good days in a row pretty much, so having 6 bad ones in a row really threw me. 

I’ve been a little hesitant to make this update honestly because I feel like it’s a total buzzkill, but you all have been nothing but honest and real with me so that’s what I want to do with you. Just telling you the good things is not realistic and I want to share my life with you all exactly as I experience it.

I am starting rotations again tomorrow, but I’m going to just take it day by day. Instead of worrying about what I’ll be able to do in a month or even a week, I’m going to think to myself “What can I do today to reflect on the day and feel like it was as good as it could have been?” and today that is cleaning my apartment finally since there is so much stuff I have been wanting to organize and haven’t been able to since I haven’t been feeling up to it. If I can do something, I’m going to go for it at that moment because I don’t know how long I’ll feel that way, just like I have been doing.  Even if we had an MRI and found out right now that I should get surgery again, I’d still feel like I should have more bad days before running the risk again, so I’m going to focus on what I can do in the next few hours instead of the next few months. 

POD 181

Today was my first official day in the hospital on rotations!! I'm working on anesthesiology for the next two weeks!

I loaded up on my meds and left for work at 5:30 AM. Honestly, everything went a million times better than I expected. The anesthesiologist is the nicest doctor I have EVER met in my entire life. But my favorite part was talking to patients before their procedures and trying to help them feel a little more comfortable. It was also so cool to see so many different cases (burn reconstruction, cardiac catheterizations, VATs, outpatient endoscopy visits) without having to scrub in or stand for prolonged periods. 

It feels good to contribute and be part of a team again, and I feel so lucky that the anesthesiologist I'm working with is so amazing. It was also crazy to be working with the same meds and comfort measures I had given to me a few months ago, it made answering questions easier! I'll check in again with y'all at the end of anesthesiology to let you know what I think, but I really enjoyed my first day!

My body is having a bit of a tough time, but since these are elective rotations the hours aren't as grueling as some other rotations. So I think if I take it one day at a time I'll be able to keep up until we're able to figure out what's wrong with me and/or these symptoms pass. Also, to let my symptoms know they can shove it, I went on a run because I felt good enough to in that moment, so I did it. I am so glad I did.  I hope you all are taking good care of yourselves!

POD 191

This was the last day of my anesthesiology rotation and I’m going to be honest, I can see myself doing this for the rest of my life. 

Getting to be one of the people who I needed before my own surgery is so deeply fulfilling. Everyone on the team was so kind and incredibly passionate about their job, while also being very plugged into their family’s personal lives, which is the dream for me. Being a doctor who also gets to pick my kids up from school and be at all their extracurriculars is something I thought I'd have to let go of once I saw how crazy the lifestyle is for most specialties. But it seems like if I’m willing to work really hard, which I am, I can put myself in a good position to achieve this!

Thankfully, my symptoms got better as the week progressed. My neurosurgeon and his team got back to me and told me they don’t think my constellation of symptoms last week was due to Chiari. I’m honestly a little skeptical about that, but I am very hopeful, so I’m choosing to agree with the logic instead of mounting an emotional response that all of my symptoms are back. 

I’m working on pediatric neurology next week, which I think I’m also going to love. I’ll keep y’all updated!