The day finally came. I wasn't dreading it, actually looking forward to closing out the 6 year circle that plagued me and gave my doctors a surprise they didn't plan on. The last thing I remember from the operating room was joking with my neurosurgeon saying "Cut me Mick". Something he no doubt had no idea what I was talking about, as clearly it wasn't even his name. That phrase was a childhood staple. My father and his brother spent countless of hours building things – woodworking. Every single time they made a cut, one of them would yell "Cut me Mick"… which anytime a saw comes out those words are uttered every single time right before the sound of a saw blade is heard…again neither one wasn't even named Mick so I couldn't tell you how the name came into play.
Waking up roughly 6 hours later in recovery where I remembered my parents bickering about underwear shopping and me telling them to get the hell out with the sorest throat I've ever had would be the first memory, the second quickly followed by them looking at each other saying "Yup she's fine" and off they went.
Strapped into a hard neck collar that I would have to have on 24/7 for the next 6 weeks would be miniature hell on Earth. It hard to stay on even while I showered and slept so I ended up with 2, one I would take off after the shower to dry while the dry one was carefully strapped back on. But I didn't really worry, I was looking forward to going back to work and getting on with life now that they found the source of my issue and in my mind it everything would go back to normal. This beast had lost in my mind. I had a top notch surgeon who was well known in his field – who even taught his process to other neurosurgeons – surely this was going to be no contest.
Recovery was typical, full of pain meds and physical therapy which I was no stranger to, but I was itching to get back to the promotion that I had to leave behind a little after 2 weeks of starting it. The day finally came – Back to work and I was excited to be back. It quickly became apparent that this wasn't going to be as easy as I thought it would be.
Winter seemed to come early that year and I seemed to be a magnet for falls and stumbles – which I wrote off initially because I didn't want to hear that they were too late and that that damage already done was permanent. I was fatigued and the severity of the pain varied on the day but I continued to take my Tramadol which was what I was initially prescribed before the diagnosis and after, when it was time to go back to work, hoping for some alleviation.
By the time Spring rolled by I had already had 2 MRIs and a CT scan from falls post-surgery and then I had strange reactions to the Tramadol that could only be described as absent seizures. For instance, I couldn't find my car in a parking lot (which is not large by any means) where I always parked in the same space and sat and looked at my car for 20 minutes before it became clear to me that it was my car. To make matters worse I had vanity plates with my name on it which I stared at for 20 minutes in the chilly early spring temperatures.
I continued to be chronically fatigued a couple hundred feet to a conference rooms, walk across the large campus. So I tried working from home, which didn't fare much better as a combination of medications to keep me pain free were now in the most restricted class of medications and the muscle relaxers and anti-seizure medications that make me drowsy made it hard to focus on simple things let alone large complex global networks.
Things were not getting any better – I was repeatedly falling, stumbling, had a foot drop which didn't help matters, constant pain that would send most people to the ER, inflammation, muscle spasms into my shoulders and just for kicks, the cord damage led to another development … myoclonic jerking of my limbs – and the more stress I was under the more severe things became, and the more other levels of my neck took a beating for it.
Summer was approaching, and the latest MRI showed the cord damage had not subsided, the level above the surgery was showing bulging that hadn't been there prior. The stress of working in global IT requires many things: long and weird hours, tolerance for high stress environments, and patience of a saint. All of which my 10 prescriptions, some highly controlled by FDA regulations, a pain patch that could be deadly to others if not properly handled, and 3 days a week of physical therapy for the past year couldn't meet the challenges of my career – or any career for that matter, and it was beginning to take a serious toll on my health.
As I approached my one year post op, my existing symptoms and pain were getting worse than they'd ever been with new ones developing on a quarterly basis, my physician told me I had to choice to make – between my life and my livelihood. For someone who loved to work, who loved every single new challenge that every day would bring it was a blow to which it's still a struggle to accept my body's limitations. I knew if I continued on, that my days would be numbered. I had to admit defeat, because my son deserves his mother, no matter how bad shape she's in. Even visitation with my child was becoming too much on my body. Basically anything that was scheduled or normal was on the table – because my magic 8 ball couldn't tell me how bad the pain and fatigue would be on any given day. That meant work, visits with my son, all the housework and cooking and even grocery shopping would fall onto Mr. Coffee (which he was not happy to say the least).
All because my spinal cord exhausts my body by constantly misfiring signals from the brain – which has given me nothing but pain, myoclonic jerks, and most recent tachycardia….this was not what I had planned for my life and is my own personal hell, but at least I'm mindful enough to know that there are people out there that got a worse hand then me, and for that I'm grateful for the good years I had before these dire straits.
Even today, on long term disability, it's hard to schedule anything because living in severe chronic pain is exhausting – so exhausting that something mundane like taking a shower is an event that can require assistance.