Making Waves: My nervous system is VERY NERVOUS

Hey Friends,

A lot of changes are coming my way, and I feel ready to share some of it with you.

Firstly, Britknee, Johnknee, whatever you want to call my right prosthetic knee, still sucks. It just sucks. I don't know what else to say. It's been over a year since I received my right total knee replacement; hence, the typical healing process is mostly complete. I suffer from a relentless deep pain in my knee that causes me to clench my teeth daily and increase my botox dosage for a very deep frown line in my forehead. My knee is so stiff and sore at night, it wakes me up mid-sleep and I have to pick up this heavy limb and roll it over just so that I can change sleeping positions. It feels like a dead appendage attached to my body.

I've now seen 3 orthopedic surgeons who all say that everything is fine. The prosthesis is stable. There are no loose parts, and there is no infection. 20% of total knee patients are "not happy" with their prosthesis, and I just may be one of those unfortunate people. When I researched the statistic on dissatisfied patients, I read about patients complaining of inability to kneel and difficulties returning to their previous tennis form. My expectations weren't that high. I just wanted to have less pain than I did prior to the surgery. I had hope that this 12-year knee pain journey would end.

I have a theory. I was able to access my OR notes and immediately saw that my right knee prosthesis is larger than my left. I understand that it's the surgeon measures and uses specific techniques to determine the appropriate size for each patient, but I hypothesize that the right prosthetic is too large for my body. It's much stiffer and unable to extend fully; whereas, the left knee is much more lax and "normal" feeling. The left knee, by the way, is great!

Regardless, nothing can be done now. A revision is a big, risky surgery. More bone would need to be resected. The risk of infection increases. It's not an option, currently. This is my knee.

How disappointing.

I wallowed in this for a good while. I felt the same grief that I experienced 12 years ago when I was originally diagnosed. I am grappling with feelings of regret. I've had days (weeks!) where I've beat myself up over making a bad decision. My confidence has taken a major blow. I've experienced feelings of hopelessness and despair. I've even experienced moments where I felt like I was no longer adding value to this world - now that's a scary place to be! It's been really rough. But you know what? Life just keeps moving on, with or without you. So I've decided that it's time to transition from grief into action mode (with moments of grief sprinkled in...you know, for good measure).

Firstly, I made a decision to wean off of the painkillers that are making my brain foggy. The main one is Gabapentin. Given that I've been on and off of various dosages over 12 years, weaning off of gabapentin has been challenging. The first few weeks I suffered from serious withdrawal symptoms - nausea, dizziness, sleep and mood disturbances, and serious agitation. I couldn't drive in traffic without losing my shit every 3 minutes! (Girl, you live in the Caribbean!- the driver in front of you is either driving 20 km under or over the speed limit. You've known this for almost a decade!) The good news is I'm down to an itty bitty dose and feeling cognitively clearer. The pain has increased, but you can't win 'em all, hey?

In addition, I've reached out to my pain specialist and am receiving guidance from a pain psychotherapist. I know the pain is "in my head," and I don't mean that in a condescending way. It literally is IN MY HEAD. My brain is trying to keep me safe after years of post surgery "survival". My nervous system is VERY NERVOUS, and is in an overprotective setting, meaning that it is producing very painful responses to what may be fairly normal stresses. My brain has changed over the last 12 years as the pain has become chronic. Luckily science has shown that the brain and nervous system can be re-programmed. My very nervous nervous system can be reversed. My cousin recently sent me a meme about being "chalant" as opposed to being nonchalant. I'm definitely striving for nonchalant, although I'm not sure if my DNA will allow that! I think science is super cool, and I love this "brain training" angle, as it gives me back some control. Given the feelings of helplessness I've been experiencing, I think that diving back into this, putting the work in, and expecting a good outcome is a solid plan. It's helped me in the past and I know that actively completing assignments and exercises is good for me mentally and emotionally.

Lastly, I've made a significant lifestyle change. I've resigned from my position as the speech-language pathologist with the department of education in the Cayman Islands. This was, and has been, a tough one. It literally took me 3 hours to hit "send" on the resignation letter! The last year has been incredibly physically challenging for me. The students that we're working with in mainstream schools have become much more complex over the past few years. Many of the students on my caseload are diagnosed with Autism Spectrum Disorder. I've really enjoyed working with my kiddos, and I've learned so much from this population. I developed a better understanding of the brain differences in these children, and how we need to make the shift from treating "deficits" to fostering acceptance and providing support to let these kiddos' strengths shine through. This is much different than what we were taught many moons ago. Learning is cool.

But...I digress.

Working with my kiddos; however, requires much more physical strength and endurance than my knees can handle. I've found it challenging getting up and down off the floor, crawling, lifting, and occasionally chasing run-away students who are in harm's way. There have been days where I've returned home from work and collapsed. It's hard to admit that your body just can't so it anymore - especially at age 44!

There were a host of other factors that contributed to my decision to resign. But this isn't the forum for that (my co-workers are nodding and smiling. Haha!)

So...I have one week of work left. I have mixed feelings and am presently experiencing an unexpected emotional response to leaving this job. It's a tough gig with its own set of challenges, but the team of specialists that I've worked with over the past 10 years have been extraordinary. I can't express how enlightening it's been to basically work with the United Nations team of specialists. Our therapists hail from all over the world: Africa, UK, Europe, America, and various Caribbean countries. I've learned so much professionally, but mostly I've learned about life, in general. As a middle-class (let's face it - privileged) Canadian, I arrived 10 years ago pretty naive. Although I had lived around the world with Evan's hockey career, I had never worked with people who had such vast experience living and working in various parts of the world. I learned about the power of a passport (I had no idea that some passport holders can't just travel willy nilly!) I also learned about the adversity that many of my co-workers faced to get to where they are now. Can you imagine growing up and fearing for you life on a daily basis? While I was over here complaining about splitting my life between two houses during a divorce! Perspective-taking is an incredible life skill that really helps you grow. How many people in the world are given this opportunity? I'm really grateful for that. I have learned A LOT from this team.

Also...the office has always kept me close to Monty, and elicited so many Monty memories. In fact, I swear I glimpsed him and his backpack out of the corner of my eye yesterday when I made a little thank you speech. I feel his presence around me, and I'm fearful that I'll lose that connection once I'm not physically there. Sounds like a topic for my psychotherapist, hey?

No worries though (but...ALL the worries!) I will be staying on island and continuing to practice as a speech-language pathologist. More on that later. Soon come!

In the meantime, I'm in this weird transitional period where I'm preparing to close one chapter and move to the next. I'm trying to soak up all the things that have brought me joy over the past 10 years, including daily laughs with my work wife who has been my ROCK for the past few years, reminiscing about the good, bad, and the ugly, and embracing the love and thoughtfulness that my colleagues have been showering me with as we part professional ways.

"Every new beginning comes from some other beginning's end" - Lucus Anneus Senneca, or more recently, one of my favorite 90's songs, "Closing Time" by Semisonic.

So there's the update!

Cheers