Myelomalacia

So after my wonderful trip to the Emerald City, I was finally granted the MRI from the Insurance companies.

For the first time they actually had to redo a set of images as the myoclonus even in its tamest tends to give me trembles. While I wasn’t expecting the worst, I knew it was the best. Sure enough C3/C4 finally went from bulge a year ago to blown. Something I expected… just not this soon. What was worse is the damage got its label as a myelomalacia at C6 – and by all accounts it not good – it’s essentially a piece of cord that’s essentially short circuiting constantly on hyper drive.

This explains my extreme fatigue and pain I wouldn’t wish on my worst enemy (not that I’d have one anyways, just not my cup of tea), the myoclonus jerks and trembling hands that reminds me of my ex husbands late great aunts bout with Parkinson’s, my bladder issues, all of my clumsiness and inability to walk unassisted by a cane to keep the stability and prevent as many falls as I can.

Although the wizard remains optimistic as it hasn’t spread, story is not progressive as of yet, and hopefully it will remain that way, as it’s kept in the back of my head that myelomalcias can ascend upwards, so in essence once it hits C3/C4 it will paralyze my diaphragm and I will be unable to breathe on my own. While no new compressions, c3/c4 herniation is touching the outside sac that the spinal cord resides in, as well in part of my fusion.

So essentially squeaking by the neurosurgeons table for now. Both the neurologist and the spinal pain management doctor recommended to go see the neurosurgeon, which I’m really not inclined to do until we get closer to that, just yet anyway. If there isn’t compression he won’t want to operate and I’m not going to waste that talented mans time who is well known in the neurosurgeon community here, in Chicagoland.

But it would be wrong to admit that the fact C3/C4 has finally blown and is still quite possible to compress the spinal cord is not exactly giving me the warm fuzzy feeling. I keep thinking stable is good. I can live with a stable myelomalcia, and I can live with additional fusions if and when the time comes.

Until that day I will continue to go to my various physical therapy, my counseling to keep my head on straight, along with my meditation that I’ve been slacking on, sticking to a strict medication schedule (Currently managing 11 prescriptions as of today) and while I’m sure I will fall short of all my New Years goals due to set back after set back, I’m still hoping to finish a quilt, a craft that I had just started to getting into before the house landed in Oz.

That is my hope. And hope is all I have that can’t be taken away, even though its simply not possible to have some days that it feels horribly hopeless being trapped in a body that you no longer have full control of, but I will continue to wrestle those days as they come along.

I found this on YouTube and if you’re interested on learning more, take a peek at this quick video.

Feel My Pain – Myelomalacia

First Year – Survived

Today marks a full year since I've had to walk away at the pinnacle of my career to focus on my health. How I survived not working is still hard to even ponder, considering I was always a high energy high spirited person. Even when I'd only had my preemie son home for a mere 3 weeks I didn't feel guilt about going back to work – after all, it was my one constant in my life that got me through all the trials life puts you through.

What's even more astonishing to me is the fragility of our bodies. Working in IT for over 15 years definitely kept me on my toes – and my brain to good use. Now I use that brain to figure out how many pages of paperwork I can fill out before I have to take a break – paperwork for sakes! Forget about cooking and cleaning and even getting the mail – any of which could spend the entirety of even a good days energy level. Logically it makes perfect sense – my spinal cord is working overtime trying to send constant signals through a damaged section to everything below the neck and the body is tired, always so very tired, and constant pain is exhausting.

In hindsight I do have to give myself credit. After surgery and 3 months post op recovery I returned to work and fought like hell thinking I could make my brain to tell my body that I had other plans, even though I knew the odds were not in in my favor, I was still going to fight for a job that I had spent 15 years earning without formal training or college. I made it there the old fashion way of moving up through the ranks by hard work.

I was going back to my dream of designing complex systems for a large company on a global scale – which meant 530-6 am conference calls or 10-11 pm conference calls so I could coordinate Asia and Europe on any number of high viability projects I had on my plate. It sometimes meant long hours and constantly on call, non of which is anything new in IT, but I excelled under pressure.

But in the end I had to make a choice – continue to keep stressing an already weak body which would no doubt would have sped then progression of the disease or swallow my pride and wave my white flag and try to give my body what it desperately needed.

The hardest decision tends to be the right one. Hopefully the next year will bring me more peace and keep my hope up that one day I will see better treatment options thar will lighten my purse that has half of pharmacy in it.

2017… Here We Go

So, the new year is here and maybe for the first time in my adult life I’m setting “real” goals for the year.

  1. Get Out Of The Damn House! This would include venturing out, look for Yoga and Aqua therapy classes in an attempt to not go insane from the incredible whirlwind the last 18 months has taken me on. The idea is…if I look better, I’ll feel better. At least it sounds good on paper.
  2. Socialize and stop living under a rock! Again, that’s more to do with the cord injury.
  3. Finish a quilt – Again, one of my projects “interrupted”
  4. Write! It’s good for the soul and the way to get out my two cents….and even if 1 person gets a giggle or learns something – WINNER WINNER CHICKEN DINNER!
  5. Keep my head up when things don’t go my way. I need to remind myself that it’s not the destination but the journey. The destination is the same for all of us when we cross the threshold to the next realm. Might as well take the scenic route and enjoy the view.

Now that I’ve settled on some changes – time to put it into action…. why is that always the hard part….UGH!!

-Rikki