March 23, 2017

Coping (or Not) with the Unknown

Today was a pretty sucky day. It started out fine – my regular 6am call with India, and then I dashed off to Orangetheory, where I got in a pretty decent workout. But I got out of the gym to a whole bunch of messages on my phone – things at work were blowing up, and I needed to fight a whole bunch of fire drills that all demanded my attention right now.

I managed to either take care of things or delegate them pretty quickly, and mostly pacify everyone, but doing all that left me only twelve minutes to shower, get dressed/ready, pack my suitcase for a trip to Chicago, and get out of the house. Stressful! I ended up running five minutes late, but the doctor I was seeing today on my way to the airport was fortunately super nice about my tardiness.

So on that note – it’s time I give you all an update on the health issues, right? Well, unfortunately, it’s not that simple… I don’t really have much news yet to report.

Today I had the last of the tests ordered by my neurologist, which was a comprehensive eye exam to make sure that my optic nerve hasn’t been damaged. This test came out okay and mostly normal… but I ended up so stressed during the test that I started crying right in the doctor’s office.

This Instagram pic I took to ward off the tears? Didn’t work – I started crying a few minutes later.

The other tests I had were relatively passive, in that I just got to lie there and they saw what my body did. But today, I did an extended version of the peripheral vision test where you have to stare at a spot and press a button when you see lights flashing anywhere. I was in a pretty uncomfortable position for the test, with my already-tense neck jutted forward. And because they wanted to be more thorough than the regular test, and check every spot on my eye multiple times, each eye took ten to fifteen minutes. That’s a long time to be concentrating, and trying not to miss anything, and wondering if there are lights I wasn’t seeing because omg something is messed up in my brain!

I had a (fortunately private) meltdown in the exam room after that test wrapped up, but in my conversation with the doctor afterward, I think she could tell how stressed I was. I’m not sure what gave it away – it could have been my still-watery eyes, or, you know, the fact that I had some really scary symptoms that we still don’t know the cause of. But I ended up getting this sticker before I left.

As dumb and childish as it is, the bright colors kind of made me happy.

Overall, I just don’t have any answers yet. My EEG (a brain wave scan) results came back with some sort of abnormality, but my neurologist is still reviewing before giving me the full report out. When I learned that on Monday, it got me a little nervous and anxious, but I’ve mostly been able to block out the fear as long as I’ve gotten enough sleep. (You did not want to see the mess I was last Wednesday, when I had to sleep deprive myself in preparation for the EEG.) Last night I got a decent night’s sleep, but I’ve felt really off and tired all day, so I’m attributing that exhaustion and work stress to why I suddenly flipped out about all of this.

Up until today, I’ve been honestly doing pretty well, and mostly just ignoring it. Like a dumb, ignorant teenager, I can’t quite get it in my head that something might be really wrong and that maybe it’s not true that I’m going to live forever. (FAME.)

But even if something is really wrong, there’s not much I can do about it. I’m not a smoker, I exercise daily, and I’m basically doing everything right, health-wise. If my doctors can figure out what’s wrong, I will aggressively fight it in every possible way (great article here by Diana Hardeman, who’s been a fabulous mentor for me on what questions to ask of my doctors as I learn to “become the CEO of my own health”). In the meantime, there’s no point in wallowing and wondering and worrying. I want to be out living my wonderful life as if nothing is wrong.

And with that: bedtime, so I can hopefully keep it together for whatever trials are in store tomorrow.


12 thoughts on “Coping (or Not) with the Unknown”

  1. I’m so sorry! Not having answers is the most stressful. I’ve been in a similar situation where it was like, “Even if it’s the worst possible scenario, I just want to KNOW so that I can plan!” I’m just a little bit Type A. 🙂

    Sending good thoughts your way!

  2. The waiting game is 100% stressful, it is totally okay to have some breakdowns. I also this it is okay to try and not let the what if’s occupy all of your time until you have some more answers.
    Sending hugs your way, I am thinking of you and hoping you have some answers soon to get clarity and plan a course of action if necessary <3

  3. Sending positive thoughts your way. Probably not very encouraging or helpful: two of my colleagues experienced something similar (one couldn’t speak and a few other symptoms and the other couldn’t write and other symptoms). I have been in the situation where I couldn’t figure out how to climb stairs. In all of our cases, the answer was exhaustion/stress and ignoring symptoms made it worse (I got lucky, I switched jobs). So be good to yourself!

    1. I think that IS encouraging. I was under a lot of stress when it happened, so it’s nice to think that if I can take care of myself better, I can keep the symptoms at bay.

    1. Marla, thank you so much – I sincerely appreciate it! I have a neurologist appointment tomorrow where I’m hoping to get some answers.

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