I’ve got to say, it definitely doesn’t feel like it’s been 3 months since the “Great Head Snip of 2019”. On one hand, it feels like it’s been much longer; I often reflect on how much I’ve accomplished since surgery and it generates this allusion that the surgery happened many months ago. On the other hand, the few bad days that I’ve experienced bring me back to how vulnerable I was such a short time ago.
3 months post-op is an important milestone. As I’ve mentioned in my previous posts, it’s the point at which we should know how successful surgery was. My nerve, while still not completely healed, has had time to calm down and think about it’s hurtful actions, haha. For me, getting to 3 months was especially important because that’s when my last surgery failed. The sheer anxiety I’ve felt over getting to this point has been astronomical. I put in a lot of work to mentally prepare for this surgery and for the possibility that it might not work. However, I don’t think one can truly prepare for that. I know how devastated I would’ve been if this surgery hadn’t have made an impact on my pain. 3 months ago, I was at my wits’ end, physically and emotionally. I was having multiple pain attacks per hour. I was taking insane amounts of “as needed” medication on top of my insane amounts of daily medication. I needed WEEKLY infusions at the hospital just to have some quality of life – to be able to get out of bed, clean myself, and eat. Working, going to school, hanging out with my friends – hell – even going outside wasn’t an option. I felt isolated, lonely, and like I lacked purpose. I learned that being alive doesn’t mean you are living.
Surgery was General Kenzie’s last stand and General Kenzie f***ing rocked surgery. Sorry Grandma – love you!
Healing hasn’t been a linear process and it’s one of the scariest things I’ve ever done. Some days I’m still stuck in bed, too scared to eat or brush my teeth. I’m still on a ton of medication and I will continue to be on a lot of medication for the next 9 months (and possibly the rest of my life). Penelope the Power Port will stay implanted in my chest for another 3 months at the very least. I still have to visit my neurologist four times a year. I guess, on paper, it seems like my life hasn’t changed that much… but it has! Despite all those things, I’ve been able to accomplish so much over the last 3 months. Whether it was going on hikes, conquering busy weekends, moving out, or going grocery shopping – I did it all without even one hospital trip. These are things I couldn’t even dream of doing before surgery. I no longer walk the line between living and not living.
I’m so happy to say surgery has been about 80% successful at this point. It’s not the 100% that we hoped for, but it’s enough for me. I mean, any percentage of relief would’ve been enough for me. I meet with my neurosurgeon on Monday to further discuss the surgery. If any important information comes from that, I will definitely share it with you guys.
In other news, we have a huge TN Awareness event coming up on Saturday. This is something I’ve wanted to do for the last 3 years, but I’ve always been too medically fragile to execute it. With the help of so many people, we were finally able to put an event together. Over the years, many people have asked me what they can do to help and I’ve never really known what to say. I don’t need money, I don’t need material things, I don’t even need your words of love and support (although, I appreciate the heck out of those words). What I need is education and awareness; I need people to know and understand the words “Trigeminal Neuralgia”. The more people that know about this disease and what it does, the closer we get to improved research and the ultimate goal… a cure. Whether you’re able to attend a TN awareness event or not, all it takes is 5 minutes out of your day to google this condition and tell a friend about it.
This will be my last monthly update post, as things are gradually becoming steadier and less interesting – which is a good thing! I will probably do a 1 year update when the time comes and I’ll always let you guys know if something wild happens. I’m hoping to still write monthly blog posts, but I’d like to get back to more structured pieces. If there’s anything in particular that you guys would like me to write about, please let me know!
As always, I’m so incredibly grateful for you all. I wouldn’t have been able to f***ing rock surgery/healing without you. Again, sorry Grandma!
Love you guys,
Wow! Just stumbled on this disease through a casual acquaintance, and your blog by clicking on a random link. You are a brave and inspiring young lady. Stay strong – you have good things ahead of you.