It’s been 4 months since I’ve written an entry on here. A lot has happened health-wise, but I’ve been unmotivated to write about it. Things haven’t been improving, so I had been occupying myself by curling into one big tight ball of depression. That left me with no time, nor the energy, to spread the immense negativity I was harbouring inside to others via this journal. “It” happens. *shrugs*
On January 29th I visited my neurologist for my quarterly Electromyography (EMG) and strength test. The results of my strength tests have been consistent since August 2013, give or take some slight improvement and/or regression. That, in itself, is weird because I currently feel stronger, and in August 2013 I couldn’t even lift my right knee. So for my present state to be on par with my initial state is a little discouraging (by the way, I can lift my right knee a bit now). So all in all, my strength test results weren’t a surprise. What was a surprise were my EMG results. An EMG is (as quoted from Wikipedia):
a technique for evaluating and recording the electrical activity produced by skeletal muscles. An electromyograph detects the electrical potential generated by muscle cells when these cells are electrically or neurologically activated. The signals can be analyzed to detect medical abnormalities, activation level, or recruitment order or to analyze the biomechanics of human or animal movement.
Nervously awaiting my EMG. Although numb, my legs suffer from burning sensations and stabbing pain. Go figure.
Medical jargon aside, an EMG is basically a procedure to test ones nerve and muscle responses. A technician places stickers, which are attached to wires, on key areas of the feet. The “zapping” device has a gel applied to it before they place it on different areas of the feet and legs. The technician then administers an electrical shock to that area with increasing strength to test the muscle/nerve response. At the end, the neurologist comes in with a needle and pokes it in several places of the muscle in the thigh/leg to test the reaction. He then asks the patient to flex their feet, etc. as he looks at real time feedback on a monitor displaying a wave chart corresponding with the needle (a crackling sound is heard and increases/decreases due to the response).
Sounds like fun, right? Well, even though I am numb in several areas of my legs, I can still feel the shocks to an extent – and I can state with absolute certainty that it is not fun!
I stole a photo of my dismal EMG results.
Apparently the numbness and nerve pain in my legs has been steadily increasing, but in the last 6 months (when I discontinued the IVIG treatment), the frequency of pain and nerve decline has sped up. Since the neuropathy (in its present state) is irreversible, there is no current plan of action or treatment set for me. My medical team is perplexed as to what the cause is and how to slow it down. All they can do is just continue to monitor my progress (which they do – quarterly). Nevertheless, this prognosis update was very painful for me to hear and to accept. It was devastating, actually.
I had always dreamt that I would be able to walk (without issue, pain and/or fear of falling) again and to be able to snowboard alongside friends – among a host of other things, like; to be able to bathe myself without having a stranger aid me. To be able to put on pants (and other articles of clothing that aren’t baggy) without assistance. To be able to sit at my computer and play a video game – or even browse silly sites, like youtube – without debilitating pain after 5 minutes of sitting down (thank goodness for smartphones!). To be able to have a bit of privacy. To be able to have a social life. To be able to make a contribution – and feel like my life has meaning – in the world. To be able to do anything without ending up crying in pain after a few minutes… but I digress… (I don’t want to sound like a whiny crybaby, but that’s exactly what I’ve become lately, unfortunately).
Sitting in the corner of my room is a beautiful, untouched Roxy snowboard. I have it by the head of my bed as a visual source of motivation, but now it just snaps me back to the painful reality that I most likely will never get to use it in my lifetime.
My Roxy snowboard with Roxy bindings (and boots – not pictured) serves as a painful reminder that this will forever be just wall decor.
On the bright side (yes, there is always a bright side!), I can still walk a few steps around my bedroom/washroom – so I am not a complete invalid. I do leg exercises daily in my room to help slow the decline. That makes me feel like I have some control – some power – in my current situation. I’m still waiting to hear from the pain clinic, so I have some positivity ahead to hold on and look forward to. I will desperately cling to that to keep my spirits up because I certainly don’t want to return to that tight ball of depression I was in the last few months.
Thanks for reading (this entry took 5 days to complete, phew!). Diane.
Having to spend the day @ the hospital, I found the only way to entertain and lift my spirits was dropping a coin in the spiral wishing well. Did my wish come true? We shall see… *fingers crossed*
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