And just like a flick of a switch — A story about my disability and how it changed my life

No thanks, I can do it myself. I’m independent. Strong willed. I never ask for help because I don’t need it. I finish what I start. My way is always right. Even if it is a two person job, I find a way to accomplish the task on my own. I don’t depend on others because there isn’t a reason to. This was the only way I knew how to live my life…. that is until 6 1/2 years ago.

Who knew a simple numbness and tingling on the top of my foot would change my life forever. You know, that annoying “foot falling asleep” feeling? It had finally become consistent now and I caved in and went to see my primary care physician in July 2008. I explained what was going on but he never once looked at my foot; instead he asked me to humor him, and that’s when he pressed on a spot on my lower back and I nearly fell onto the floor. Never in my life have I felt a pain like that! And just like a flick of a switch my life changing venture began.

After a neurologist performed an Electromyogram (EMG) and Nerve Conduction Studies I was referred to a neurosurgeon. I was scheduled for an MRI which determined L5-S1 had a bone spur pinching my nerve causing the numbness and tingling, part of my vertebrae was growing inward instead of outward, inflammation of my facet joint, degenerative disc and a large amount of arthritis. My regimen for the next year was physical therapy and pain management: injection procedures and medications for nerve pain — which most of the time made me sick, dizzy or not myself at all, and never really helped with the pain anyway. The numbness and tingling at this point had gotten worse and was now traveling throughout my leg, so surgery was necessary. In September 2009 I had a non-invasive surgery called Foraminotomy and when I woke up the numbness and tingling was gone, hooray!! It was such an awesome feeling to wake up and immediately notice a difference! At my post-surgery follow-up however, I now had shooting pain going down my leg and leg weakness. Next step; begin aquatic therapy and schedule another MRI for safe measures. This time my MRI showed I had conjoined nerve roots in L5-S1… what the heck is that?! Glad you asked. Conjoined lumbarsacral nerve roots (CLNR)  is an anomaly of the lumbarsacral nerve roots and are composed of two adjacent nerve roots, which share a common dural envelope. No surgery, since the neurosurgeon doesn’t think this is the main cause of my pain and that both nerves are most likely working nerves; and we wouldn’t want to remove that!

I continued with aquatic therapy and after 3 months it was time for my evaluation. I was not improving and still in pain and now I am no longer able to have aquatic therapy — thank you insurance company — my insurance would only cover it if there is significant improvement and let’s just say my progression was slow. So off to; you guessed it; another MRI and let’s throw in a CT myleogram for safe measures. Let me stop there and tell you that was the scariest worst experience of my life and I only pray I never have to have another CT myleogram again! Okay we meet with the neurosurgeon to discuss the results and he says he noticed my vertebra is inverted in another area of my back, similar to the one that was shaved down; but since isn’t causing any problems yet; we’ll just keep an eye. So back to the pain management physician for the next round of treatment: acupuncture, prescription methadone for the nerve pain and continue limited PT exercises to be done at home a couple of times a week, if I’m up for it. September 2013; no more acupuncture, I’m slowly being weaned off methadone (praise God) and I’m off to see the next neurosurgeon who has me get, another MRI… results: surgically there is nothing he can do but he did find a linear tear and had me fitted for a back brace. Oh boy, this was a true moment for the phrase “Calgon, take me away!” I mean what else can be wrong with my back but not fixable!

Fast forward to today — 5 neurosurgeons, 3 pain management physicians, 1 surgery and multiple medications later — I’m still the same. Pain that radiates down my legs; debilitating back pain; inability to stand or sit for long and sometimes short periods of time; restricted lifting – no more than 10 lbs. and cannot lift ‘said’ item with arms stretched out in front of me, to the sides or above my head without instant pain. There are many days that shaving my legs in the shower or even putting on a pair of socks are nearly impossible without being in agonizing pain. I even had to call my husband to pick up the kids and I while at the store, because I was literally frozen in one spot in so much pain I couldn’t move. Talk about life changing; my life now became: missed soccer games, missed school concerts, missed gatherings and parties. No more yard work and although I never enjoyed weeding anyway, I really miss mowing the lawn. Having to depend on my husband or children to carry the laundry baskets up and down the stairs for me. Relying on them to clean up after dinner because I stood too long preparing the meal. Having to use a cane or lean on to a cart, when out of the house. Doing what was once a simple task or chore accomplished in a day or less, is now stretched out to weeks at a time depending on how I feel…. I can no longer depend on myself.

How do I cope? Hmm, there are days where I ask myself that same question… It is so easy to get caught up in the “I hate my life” “why me” scenarios; and in the beginning there were a lot of times when I did just that. Let’s just say that if it weren’t for my children needing their mother, my husband standing by me through every step and my family and friends supporting me; I probably would’ve crawled into a hole somewhere and waited to die. Now I know that sounds extreme but in all honesty that is how it felt! To this day, between the inability of being fully independent no longer, to the excruciating pain I am in most days, to letting my family and friends down because I am physically unable to attend something; it can sometimes be hard to swallow. Some nights, I’ll lay in bed crying because of the pain or the guilt I’m feeling and I can sense myself heading into a dark path…. that’s usually the point where I stop myself and say snap out of it. It amazes me sometimes how quickly I allow my faith to turn my thoughts into something positive. I’m learning patience, acceptance, how to ask for help, beauty in everyday things, finding joy in the simple messes of life, and learning how to let go and let God. “No one is in control of your happiness but you” ~ Barbara De Angelis, this is a quote that is also a constant reminder to me; the only way I will be able to live each day to the fullest and make each moment count, is if I make it happen; period. Prayer has been my escape route from myself… when the darkness sets in, my prayers go up. I wake up every morning, and I thank God for the new day ahead and for the new outlook he has given me with my disability. I feel enlightened and ready to face the world; or at least the staircase to make some coffee. I now experience life in a whole new light and it’s good, it’s humbling and it’s mine. I’m not going to lie to you and say it’s easy, in fact it can be down right hard as heck; but I push through and move on. I’m happy.

Have you had something happen in your life, that changed it just like a flick of a switch? We all have a story to tell and the version of our life depends on our outlook… I’d love for you to share your story with me.

Blessings ~ Danielle

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