The ebb and flow of healing is a total mind F.......and I'm HERE FOR IT.
I've made quite a bit of progress in the last two weeks. I'm eerily impressed and excited about it all. I've turned into this weirdo who's scared to talk about it at the clinic...like I'll jinx myself if I verbally acknowledge the fact that I'm getting better.
Don't get me wrong people, I'm still beyond broken, but I'm healingggggg. It's a strange thing to write about but, truly ...I've gotten so used to feeling like crud, that when my body feels well my brain literally won't let me sing praises because its been programmed to know that pain is right around the corner. A euphoric feeling, quickly washed away by this feeling of impending doom. As my Dad would say, "Tay, that ain't right"....and it's not. I'm realizing that I need to be more open to holding onto the GOOD, even if I do it quietly, even if the good is small.
I had 3 new therapies added to my schedule. Neuromuscular Re-education, Shock Wave Therapy and detox foot baths. I also had several adjustments that were something similar to a mayofascial release combined with an adjustment that helps the flow of cerebrospinal fluid....am I a total kook now? This shit FASCINATES me.
I still had my regular vagus nerve adjustments, along with magnetic resonance therapy (remember that space pod thingamajig). I also got my blood work back, I'll get to those relatively boring results later. Ps boring blood work is thumbs up blood work.
Two days a week I soaked my feet in an ionic foot bath (which I'd never done before). The bath doesn't make me feel any different, but I appreciate it because I know it's doing me good!
After seeing these lined up, I'm trying to track progress but uhhhhhh ...maybe by week 12 we will see some progress?
Some people experience other movement problems, including weakness, spasm and tremor. IT ME IT ME IT ME. An affected limb can become permanently flexed or bent (contractures). In some people, the skin can become tight, dry and shriveled. The bones can become brittle because they aren't being used. The skin, muscles and joints stiffen so that the affected area cannot be moved. Some patients have less pain at this point. Once the disease reaches this point, it is extremely difficult to treat.
You see, it's been so easy for my physical therapists to write me off as a sad yet inspirational story. "Taylor puts so much effort into recovering", "Taylor, with your personality and persistence, you'll get through this and walk again." But no one put into consideration my CRPS. No therapist I've had has really delved into the mess of Complex Regional Pain Syndrome. Because I had a massive neurovascular surgery, which included a five vertebrae laminectomy, cutting through my myelin sheath and then removing a giant arterovenous malformation, I really feel like I just got written off as a sad "spinal cord injury", but I'm not. I'm a giant mess, but I truly feel that The Spero Clinic is going to figure me out and help me HEAL my pain & paralysis.
One of the first things Spero wants to do is to find where your neurological "kink(s)" or lack of connection is within your neural pathways. This is done with the "Search & Destroy" technique and it's actually conceptually simple. A setting within the NMR allows the therapist to glide a lead (with a current running through it) over your body. Pain will spike where the neural connection is lost. It was no shocker that I had pain spike at my T3 (which is was the highest vertebrae that was sawed in half to access the AVM) aka Ground Zero. I can only imagine the scar tissue that developed in my back post surgery. The search continued on....another pain spike on my abductor.
A lot of the time, road blocks in neural pathways are the result of scar tissue growing in its way....soo how do we break that scar tissue up? By using shock wave therapy, Spero therapists are able to break down the tissue, so that the connection can be made again. Its the craziest thing to feel and ask my mother, its the craziest thing to witness. The therapy, depending on how much scar tissue you have can be extremely painful. But the "hurt so good" kind. And it doesn't last forever. Once the scar tissue has been broken down, the pain diminishes and if you're lucky, you can feel the current of the NMR run deeper down your body. And guess what, I've been lucky.
(NMR on a hot spot)
(standing tall with my toes uncurled for the first time in a LONG time!)
(I was terrified to be gone from SCI-FIT for three months. I was scared that I'd regress. But NMR stimulation trains your brain and nervous system to correct movement patterns and muscle integration at an incredible rate.)
The fact that I've been able to feel NMR's current in my calves and feet is beyond awesome. I would say that its, "strange", but it's not. I truly don't think its been a spinal cord injury thats been paralyzing me. If we can continue to search and destroy more scar tissue, if we can keep opening up neural pathways and strengthen the connection, whos to say Spero can't help me walk again?
Yesterday was my three week re-evaluation. I was dreading it, but I left the appointment smiling and even gave myself a little pat on the back. I'm progressing. I'm getting better. Little by little. I've gained sensation back in my legs. How cool is that? To be honest, I'd written my sensation a goodbye letter long ago. I told her I'd miss her and would always love her, but I needed to focus on bigger things like giving pain an eviction notice. But she coming back y'all! And I happily welcome her. Thank you Spero for showing me I don't have to write anything off.
Wednesday was my best day so far. I typically have anywhere between 10-20 pain spikes a day that hit a 10 (on a scale from 0-10, 10 being the highest). My resting pain (constant) is typically a 3 (the lovely burning in feet, calves and quads/hamstrings). I kid you not, on Wednesday I only had 2 pain spikes that didn't exceed an 8 and my resting pain was a 1. WTF?! My sleep was good all week as well, only waking up a couple times a night due to pain, but I was able to fall asleep relatively quick. But then darn it, Thursday was a bit rough. I hit a handful of 8's, but Im learning that this is completely normal...and I ain't mad about it. You guessed it, I'm TRUSTING THE PROCESS.
Also if you're facing any sort of adversity right now, don't focus on what you can't do, focus on whats on the other side of that adversity. Your brain is a POWERFUL tool and will help get you through it. Chin up! Tits out!
Taylor Gilkey Laird