I think it’s about time that I did an update-style blog! To be honest, I’ve been trying to write a blog for the last month and a half, but it just hasn’t worked out. Between exhaustion from the TN event, some unresolved feels, and trying to manage life during a pandemic, writing hasn’t been my priority. However, even if it ends up being horribly informal, I feel like I have to get something out there. So let’s get into it!
The TN Awareness Event was amazing and more than I could’ve asked for. Although we had to downsize and be more cautious this year, I truly believe that we got a more poignant and effectual message across. We were able to focus on the real life impacts, rather than the cold, hard facts – the “why” instead of the “what”. I had longer, more meaningful conversations with people in-person and online. Through the video series, I met 6 new TN sufferers that were so happy to know that they weren’t alone. We had strangers finding and posing with the teal rocks that were scattered across the city. So, for a year that has been filled with so much uncertainty, loss, and sadness, the people around me sure made October beautiful.
November has been a bit of a lonelier, emotional month for me. My pain has remained pretty stable (knock on wood), but because I’m stuck at home, it’s easy for me to get into this mindset of “it’s kind of going to waste.” Everyday, I live with the fear of knowing that this stability is temporary and that the pain will get worse eventually. For the most part, I’m really good at managing that fear. I’m able to realize that letting that dictate my actions and hold me back from experiencing happiness and joy is no way to live. November has kind of thrown me for a loop, though. With Covid getting worse, I haven’t really left the house much at all. This means I don’t hear from or see my friends as much as I’d like to and need to. Jon started his teaching practicum and is working so incredibly hard, but that means I get less time with my rock. All in all, through no one’s fault, my usual supports are displaced. While October brought so much purpose, connection, and communication, November has brought the opposite.
Yesterday, I had a neurology appointment. I honestly don’t even know where to start with this! Since Covid started, we’ve been doing my appointments over the phone. This hasn’t been a big deal, as it saves us 4 hours of driving and they can just fax any medication changes to my pharmacy. So, we’re sitting on the couch waiting for the phone call and time is passing by. After 15 minutes, we decide to phone the office, but they’ve already closed for the day. 5 minutes later, we get a call from an Edmonton number (my neurologist is in Calgary for reference). A lady named Olga says that my neurologist is there, but she’s unavailable at the moment. She asks if it’s okay if she conducts the appointment and at first, I don’t have a problem with that because I know the healthcare system is swamped right now and there has been the odd time where we’ve had to work with another neurologist before. The problem was that she was not familiar with my case or TN in general. I spent 2/3 of the 10 minute appointment trying to explain things to her and politely correcting her when she still didn’t get it. Fortunately, I am stable right now and as I’ll explain in a second, I had already decided that I didn’t want to make any changes this go-round. You can’t help but think of the “what-ifs”, though. What if I wasn’t stable? What if I needed to change my meds? I don’t even know if this lady was a neurologist and I’m supposed to put my health in her hands. I want to be clear that I don’t blame the healthcare professionals for this. I have never experienced anything like this in the 4 years that I’ve been with this neurologist (pre-pandemic). I feel awful that this is what it’s come to and that this is the situation we’re in. However, I’m angry that I have to wait another 4 months for a neurology appointment and that there’s no guarantee that I’ll get to talk to my actual neurologist. I’m angry that I don’t know whose going to be held accountable for all the medical errors and inevitable deaths that come out of systems like this. I could go on and on about how this pandemic is disproportionately affecting people with preexisting conditions, but I’m going to leave it by saying that our lives are just as valuable. Please, please, please do your part to protect the vulnerable.
For my last update, I want to explain why I decided to not make any changes. While that may not seem like a decision at all, it took the entirety of my strength and willpower to make it. For the last 16 months, my goal has been to cut down on some of my medications. I’ve had 4 neurology appointments in that time and I’ve nearly begged to lower my meds at every single one. After begging, I start crying because I just want to move on with my life. However, at every appointment, my neurologist reminds me of two key things:
- I don’t have a good history when it comes to titrating my medications. While I try to convince myself that it will be different this time because surgery was somewhat effective, I can’t ignore the past. Without fail, I’ve fallen hard every time and it takes me months to recover… IF I fully recover. I risk undoing surgical progress by rushing this process.
- I haven’t proved to myself or to my neurologist that I can be stable for more than 3-5 months. This timeframe is bound to shorten if I lower my pharmaceutical defenses. That may be worth the risk in the future, but it’s certainly not worth the risk in a global pandemic. I can’t afford to be going to the hospital more frequently right now and the hospital can’t afford it either.
Even if those two reminders weren’t enough, I also have to take into consideration that we are heading into the coldest, windiest time of year AND I’m at the 4 month no-hospital mark. The mark when, historically, I’ve started going downhill.
One of the things I’ve learned over the last 7 years is that you’re not always able to balance your plans with your health. Sometimes the things that you hope for – the things you dream about, the things that you are so desperate to achieve – are not the things that are best for your physical health and long-term wellness. It is extremely hard to choose one or the other and to visualize your future in that moment. On the flip side, it’s easy to get caught up in the cruelty and unfairness of that. I’ve spent a lot of time being angry, upset, and impatient. I want to be able to think again, I want to be able to concentrate again, and I want to go back to school more than anything in the world, but I can’t do any of that if my pain levels get out of control again. Even if those things feel like they’re one step away, I don’t know if that step is going to land on sturdy ground and I don’t think now is the time to risk that. I’m doing everything I can to get through this Covid spike and the holidays without a hospital trip. I don’t want my sacrifices to go to waste.
This may seem like a bit of a negative update, but I want to say that it’s not. I was recently reminded by a good friend that everyday is a success, even if it doesn’t feel like it. Everyday is a success because we’re here. We’re alive and able to put up a fight if we choose to. Throughout the last 7 years, I’ve been confronted by my own mortality a few times. Sometimes I forget the sheer fight to live that I felt in those moments. My life has been full of highs and lows, but in those most vulnerable moments, I realized that that’s what life is. I don’t believe in the sayings “there’s purpose in pain” or “everything happens for a reason” or any of that shit. However, pain has taught me that lows are part of the process. Even if the lows suck (and they most certainly do), I believe we can use them to see the highs more clearly. So I guess I’m just going through the process. I’d love it if the process wanted to chill out and hurry up, but until then, I’ll be crying when I want to cry, yelling when I want to yell, and constantly laughing at the absolute audacity of 2020!