Wednesday, June 25, 2014

Bell's Palsy Update: Day 730

Subtitle: Living With My New Normal

Two years ago today, my life took a sudden and irreversible left turn, veered off-course, and headed down a bumpy side road to my New Normal...which isn't a town in Illinois. The left side of my face appeared to be sliding off my skull, giving me the appearance of having suffered a stroke. I was diagnosed with a condition known as Bell's Palsy...and nothing has been the same since.

[If you need a refresher course, begin at this post and read forward:  http://adsit2.blogspot.com/2012/06/there-good-news-and-bad-news.html ]

You may recall the Urgent Care doctor said "this may last 15 days, a month, or the rest of your life." At the time, I chose the first one...like I had a choice in the matter. Unfortunately, it seems I actually got dealt the latter. Looks like I got a modified version of a life sentence. Sigh

While the nerve (AKA: cranial nerve #7) has regenerated and the feeling and most functions have been adequately restored to the affected side of my face, I continue to deal daily with some lasting effects: jaw pain, spasms (especially when I am tired or stressed), involuntary/uncontrollable eye tearing and movements and sensitivity to light, and some lingering speech and vision problems. These can all be attributed to a condition called synkinesis, which you can read more about here, if you wish: http://www.facialparalysisinstitute.com/8/synkinesis.html

My own good doctor had encouraged me to take a longer view of the recovery period. He said that it can take "up to two years" for patients to recover from other neurological events (such as a stroke...which thankfully, I did NOT suffer), so why not give it the complete 24 months? Tink! Pop up timer is out, Doc. Recovery period is over. It's official: I'm no longer recovering from Bell's Palsy...I'm living with the effects.

Truthfully, it could be worse. Many who live with BP for life never get feeling and function back to the point that I have. And many who do get "feeling" back, get it in the form of constant and excruciating pain. I'm one of the lucky ones here. The pain and spasms I have seem to be well-managed by a daily dose of a nerve pain med called Neurontin (gabapentin). That, and a Biotin tablet, are the only meds I need, thankfully. I have ordered my new prescription lenses for my sunglasses (following the last cataract surgery), and those should help immensely.

But, that doesn't mean I am happy with this New Normal. I hate when my words (particularly those beginning with P, B, F, S, or a double-consonant sound) get trapped and then tumble out in a tangle. I hate that my left eye winks involuntarily when I eat, drink, or sip through a straw...and nothing I do can control it. I hate that my left eye is so sensitive to light and tears up with regularity. I hate the jaw spasms...which hurt, to put it plainly. I hate that I am so sensitive to medications that I just have to give into the effects of the gabapentin every night...and it takes a couple hours in the morning for me to "get going." 

People are trying to be kind when they say things like "oh, I wouldn't worry about it...you can't really tell there's anything wrong." But I can. What I am experiencing feels wrong to me...it doesn't feel normal to me. I remember Normal from two years ago...and this ain't it. My New Normal. Have I told you how very much I hate the term "New Normal?" 

Ah well, it is what it is, as Ziva, one of my favorite characters on NCIS, says. Meaning: just deal with it!

Or, in my case...just live with it.

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