“Breathe. You’re going to be okay. Breathe and remember that you’ve been in this place before. You’ve been this uncomfortable and anxious and scared, and you’ve survived. Breathe and know that you can survive this too. These feelings can’t break you. They’re painful and debilitating, but you can sit with them and eventually, they will pass. Maybe not immediately, but sometime soon, they are going to fade and when they do, you’ll look back at this moment and laugh for having doubted your resilience. I know it feels unbearable right now, but keep breathing, again and again. This will pass. I promise it will pass.”
― Daniell Koepke
Today marks the one year anniversary of my spine fusion revision surgery (L4-5) plus an added level (L5-S1) because, why not one more level?! The first L4-5 fusion surgery, November 4, 2016, “failed” in that I didn’t heal. I spent the entire 2017 year HOPING I was “making bone” to fuse my spine that was being held together with rods and screws. I sat crying in the doctor’s office listening to him tell me I would need to have the surgery done AGAIN! And this time, I was being sent to a surgeon who specialized in “hard cases”!
The surgery ONCE is extremely painful. The second time around was even more painful. Learning to walk again; something so many take for granted, was now a struggle. But the real pain came from compressed nerves; one of my very first symptoms that something was seriously WRONG! Now I am a fairly “strong” person but nerve pain… there is no way to describe how intensely painful nerve pain is!
I was so anxious at that 3-month appointment and x-ray to see if bone was forming this time around? Although my Vitamin D levels were adequate, I was told to “take more” to hopefully help bone to form? I had a Dexascan done to determine exactly my bone density (to treat if too low). The surgeon felt my bones were “soft” when he was attaching the new rods and screws that were to hold me together. And at that 3-month appointment I was told they were sorry I was still having pain but… they were done treating me!
I’ve spent this last year juggling pain meds to “stay active” (what they tell you to be without really helping with a plan on how EXACTLY to DO that?!) I’ve done physical therapy and accupuncture trying to regain my mobility. And through it all, I still have “nerve pain” that is worse in a specific position (because that position compresses the nerves? I don’t know but I avoid that position as best as I can!)
Last January, after the second surgery, I fell. One of my dogs just bumped my leg behind my knee and down I went! Falling, in slow motion, all I could think was to NOT twist my back/spine! I landed hard on my knee… the knee we know is not that great. I spent more time wearing a knee brace; steroid injections in my knee; and finally agreed to have it replaced. It was even suggested I get BOTH knees replaced (at the same time) because they are both bad enough for surgery. At my pre-op appointment, my right knee wasn’t in excruciating pain so… I canceled the knee replacement. My concerns regarding the knee surgery were ignored especially the one about my NOT out-living the prosthesis. I most likely would have to have surgery on the knee done again before I die! Yeah, I decided to suck it up and cancel the surgery hoping I could make it a few more years before going through with another surgery!
All this time protecting my back and knee has taken its toll on my other joints. X-rays done on my right foot showed abnormal angles which was causing foot and ankle pain. More surgery suggested to “fix”. Instead, I wear a brace. And wear different shoes to change the pressure in how I walk.
And what is the “official” diagnosis for all of this? Genetic Osteoarthrits; early onset. Boring, huh? I mean, EVERYONE has arthritis, right? My arthritis is different; it’s debiliating! And it started in my hands, especially my thumbs, YEARS ago! Yeah, I can tell when we are going to have bad weather; when the barometer starts to fall, because… I have PAIN!
So today marks my one-year anniversary from that hideous surgery. I’m due for another spine x-ray. I KNOW I’m healing this time though. I had bone forming on my 6 month x-ray and even had a CT scan done at nine-months post op that showed even more bone forming. My appointment to see the surgeon who did the surgery is not until 1/29; I just hope he doesn’t ask again if I’m glad I had the surgery done? “Glad?” I just stared at him when he said this before because really, did I have a choice? Should I tell him my spine surgeries marked the end of my “old life”? That today, I have limits that if ignored result in excruciating pain. And I still have that nerve pain that started it all. The nerves “may” heal but then again, they may never heal? Like the quote above states, I just keep breathing! And fighting for my mobility and life! I know I’ll never do the things I once so enjoyed so… I’ve found new things I CAN do that I enjoy! And I make a LOT of “accommodations” to appear “normal”; the last thing I want is anyone’s pity! I just keep repeating over and over again…
“Life is not about waiting for the storm to pass.
It’s about learning to dance in the rain!”