Well, it’s been exactly one month since brain surgery! I’ve been getting lots of questions and requests to do an update and I think that this is an appropriate day to do one.
To get right to it, things have been up and down. I definitely didn’t expect my healing to be linear, but I also didn’t expect to have such substantial highs and lows. It’s in my nature to be optimistic and to show you all the great things I’ve been able to do since surgery. Every part of me wants to give you guys the happy news – the comfortable news. So many people have been rooting for me over the last 6 years and while I know they want me to be honest, I don’t want to let them down. I don’t want them to feel sorry for me anymore than they already have. Alternatively, I don’t want to be upset and vent about my problems anymore than I already have. My brain is telling me to “just be happy because it could be worse.” That thought process is really troubling and invalidates my totally valid feelings because no matter how good your life is, you’re still going to have bad days! For these reasons, I haven’t showed the lows; I haven’t showed my bad days, my anxiety, or my pain.
Pain. I’m still in pain. I’ve talked previously about the weird nerve phenomena I’ve been experiencing – crawling, tingling, numb feelings accompanied by a tight, stiff face. However, these feelings changed about 2 weeks ago. What was once just uncomfortable has become painful. It’s the same TN pain as before surgery, but less intense and less frequent. I’m struggling with my feelings around this. Yes, it could mean that the surgery didn’t work as well as we wanted it to. That being said, it could also be something that eventually goes away when my nerve heals a bit more. We won’t know the final results of surgery for another 2-ish months, which is both anxiety-inducing and comforting. Having to wait and just hoping the pain calms down has not done wonders for my mental health. Nevertheless, knowing that there’s a chance that things will level out and that I can keep moving forward is really encouraging. I also just want to quickly say that I am VERY grateful that the pain has lessened and is more tolerable.
On the topic of mental health, a big part of my journey has been learning how to cope. It hasn’t been easy and there are certainly some days that are harder than others, but I’m proud to say that I’m actually doing really well! Previous to surgery, I worked really hard on becoming mentally prepared for this adventure; I don’t think you can go through an experience like this without having some anxiety, so I wanted to have a plan beforehand. Some of you may not know this, but after my first surgery failed, I spent some time in an inpatient psychiatric unit. Even before the pain came back, I was an anxious wreck. I had spent so much time focusing on my physical health, that I had completely neglected my mental health. That error almost ended my life and I really haven’t been keen on repeating that whole experience! I’m so, so happy to report that with the help of my family, therapy, and the occasional Ativan, I’m managing my anxiety really efficiently.
So while there has been a lot of lows, it would be silly of me to not recognize the highs. In my last post, I mentioned all the things I had accomplished in my first week post-surgery. If you follow me on Instagram, you’ve probably seen that I’ve done even more since then! I’m really starting to develop a love for the outdoors and hiking in particular. Although my face is still a bit sensitive to wind and temperature changes, I’ve been able to go out in the rain, wind, and heat and still enjoy myself. As I approach the 6 week mark, I’m getting very excited to have my surgical limitations lifted. I can’t wait to go on more elaborate hikes, get back to the gym, and start driving again. Oh, and did I mention that I’m moving out in September?!? For the last 6 years, moving out seemed like it would never be a possibility. Being able to do all these new things is overwhelming, yet so exciting! I have to remember that I just had major surgery and I still need to pace myself. Lastly, I see my neurologist later this month and if all goes well, I will hopefully get to lower my medication. So things are looking up!
Like always, I am so grateful and appreciative for the constant love and support. Although I may not always WANT to show the bad sides of life, I know that I CAN show them and that I will be supported through it. You guys have the ability to make hard times tolerable and I will forever be grateful for that.
Love You All So Munch,
Thanks once again for letting me join you on this journey. I know I’ve said it before. And I’ll say it again. Not all superheroes were capes.