Thursday, June 25, 2015

Bell's Palsy Update: Day 1,095

Let's start this post on a positive note, courtesy of the folks at Blue Mountain cards (http://www.bluemountain.com):



Happy? Good. Remember that feeling. 'Cause it's going to get worse before it gets better.

Sigh.

Three years ago today, I experienced the worst day of my life.* After a few frightening hours, I was diagnosed with a neurological condition known as Bell's Palsy, which in my case affected the left side of my face. If you are just joining me on my adventure...or have forgotten how it all played out...you can revisit my original post on the subject and read forward, starting here: http://adsit2.blogspot.com/2012/06/there-good-news-and-bad-news.html. Go ahead...I'll wait.

Fast forward to 2014. At the two-year anniversary, I wrote about my realization of how I had moved from "recovering from Bell's Palsy" to "living with the residual effects of Bell's Palsy" in this post, written one year ago today. I specifically mentioned my "new normal" in this one:  http://adsit2.blogspot.com/2014/06/bell-palsy-update-day-730.html. Yeah.

Well, here it is, June 25, 2015. So, how do I like Normal, now that it's no longer new? Truthfully, not much more than I did then. Because of the lingering effects of synkinesis (explained very well here:  http://www.facialparalysisinstitute.com/8/synkinesis.html), I still have to take Neurontin (generic name: gabapentin) daily to manage the unpredictable and painful muscle spasms in my left jaw, although I still cannot take the dosage level recommended by my doctor. He first said 1200 mg/day...which practically made me catatonic; down to 600 mg, which was still too high; down to 300...and finally down to 150, which still makes me drowsy but which allows me to function better. Thank goodness, because I don't think I can cut the pills down any further! 

My speech patterns remain the same as this time last year, with stress or excitement causing me to stutter over certain sounds (b, p, f, m, and s) and struggle with certain words (specifically the word "specifically"...;-). I also still involuntarily wink my left eye when eating, drinking, or sipping through a straw, or when I try to smile really big. Nothing has changed there. 

The other things that haven't changed are (1) how often I hear "oh don't worry about it. No one can tell." And (2) how much I still want to respond "but I can tell." And (3) how very fortunate I know I am because some people with Bell's suffer much more lasting nerve damage for many more years, and/or much greater visual evidence of synkinesis.

So, pretty much same song, third verse. At least on the Bell's Palsy front.

[Digressing a bit. Otherwise, healthwise, I'm currently sitting here in my lounge chair with my left foot on an ice-pad. Why you ask? Because I have sustained another repetitive motion-type injury, and I'm following doctor's orders to "ice, elevate, and limit use."

What now? Well, after looking at the X-rays of my foot, Dr. W said "non-displaced acute sesamoid stress fracture of the great toe." Never heard of it? Me either. Treatment: restricted activities (limit walking and standing with weight on left foot, no stairs, no climbing ladders...as if!), elevate when possible, ice several times daily, anti inflammatories, wear thick-cushioned shoes, no barefootin' it even from the bathroom to the bed(!), and STOP HYPER-FLEXING MY FOOT WHEN KNEELING & TENDING TO MY RAISED BEDS (the probable cause of the problem). Here's a link to more info if you are curious: http://www.footeducation.com/foot-and-ankle-conditions/sesamoid-stress-fractures/

I'm really beginning to wonder whether a friend of mine is right-on-the-money when she asked "is there a little black rain cloud hanging over your head?" Either that, or whether I'm right in thinking "who knew gardening was such a dangerous sport?"! Geez-Louise! At this rate, I'm going to work my way through the Physicians Desk Reference in record time.]

Ok, back on topic. I figure I can continue to sing this same Bell's Palsy song, updating my posts year after year...or I can try something different. If you know anything about me, you can probably guess which one I have chosen.

I am pleased to post that, in writing this update, I did follow some of those links, just to test them. Lo and behold, I discovered that Dr. Steenerson's Atlanta Ear Clinic...where I received fabulous treatment years ago when dealing with the acute phase of benign positional paroxysmal vertigo (BPPV), also offers neuromuscular facial paralysis retraining for Bell's and synkinesis patients. Read more here: http://www.atlantaearclinic.com/facial.htm.

How fast do you think I made THAT call? Hooray! I have my first three appointments on the books, starting in August.

My fervent hope is that, this time next year, when I write my Bell's Palsy Update — Day 1,461, I will finally be able to put that period at the end of this chapter in my life.

Until then, would someone please pass me my ice-pack?

====================
* So, how can I think that the day I was diagnosed with Bell's Palsy was worse than the days that my parents died? Probably because both of my parents had suffered prior to their deaths (Daddy from aplastic anemia, and then being in a vegetative state for seven weeks; Momma from lung cancer for several months), the day that each died was a blessed release from their pain. The day I was diagnosed with BP was the day the world shifted for me...without my permission. 

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