A ‘Shock’ingly Good Time.
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.
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!
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.
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.
hahaha long time no doubt!
…although high school memories are etched in stone in my brain for some reason…instead of loosely sketched like everything else from life. I’d love to chat. I went through a VERY isolating few years with my condition as well…and still do in many ways…I am sure we would have a few things to talk about :) If your up for it send me a message at email@example.com
no worries if not…I subscribed to your journal and will watch for your next update :)
I just read your entire blog… Thank you for sharing. What an ordeal. I teared up at some of the more intense parts…your writing is EXCELLENT…I was captivated and in awe/shock at your experience. The last post was quite awhile ago…I hope your doing well.
I have had ten years of pain and am on disability…Its not on the level of what you had to go through…but I can relate on a few levels i think…and I appreciated
reading your section on disability misconceptions. I know for sure that people think I should be out there and work…but it’s really not possible.
I hope you write some more posts…and I am knocking on wood that there have been some positive developments since February.
Hey Ryan, it has been awhile!
Thank you for taking the time to read my journal. I am sorry to hear you have had your own problems throughout the years, but it is always nice to know that there are others out there who understand.
In the past few months both good and bad have happened. I just have not been feeling up to writing for a while now, but I will update soon.
Thank you again and keep in touch!
Its very hard to read this and I can only imagine how hard this whole experience has been for you. I really wish I had some superpowers to heal you so you could do all the things you said you want to do. But all I can really do is let you know how special you are and how strong I think you are and to tell you to keep your head up and a positive attitude and to make the best out of everyday as hard as that may be, because although you are facing hardships in life, you are still alive and there are always new blessings to be discovered! now go find them! <3
Thank you so very much for your constant positive comments and energy. Thank you even more for taking the time to read through my drivel and then leave a comment. I really, really appreciate that. So, thank you. Again. :)