Synkinesis & Novocaine

Some days my face works & looks better than others. We all wake up with that "pillow face", except for you back sleepers. But the next day after I've kicked the worlds butt, my face feels funny. My right side is stiff and tired and my left feels like it's slowing falling off. My bottom lip looks and feels swollen but it's really just that the muscles aren't holding it up.

On the right side of my face I have synkinesis. It is a miswiring of nerves after trauma. For example; when I squint my eye shut, my cheek goes up like it's trying to smile. It's like they are all locked together. And it wears my face out. I'm hoping with the muscle release and Botox that it relaxes that side. At night I really have to concentrate on relaxing my face to get relief. Hence the Valium which I really hate taking. I don't want to become Mother's Little Helper dependent. My left side muscles aren't getting the nerve signal to move but I think they still get tired and look droopier on some days.

It's been 11 weeks and although I do have "good" days where people think it doesn't look as bad, I still have no movement in my left side and my tongue is still numb.

My tongues feels like the Novocaine never completely wore off. Kinda like a think coat of glue is still there. Bland foods or dry foods are awful. Including pretzels, bagels, chips, yogurt, kiwi (I can't taste at all). It's a great low carb diet except I can still taste chocolate. I think we can count that as a blessing. (Hot sauce is my friend to my mouth but not my belly.)  I'm actually not sure if surgery will restore the feeling in my tongue. I guess that's something I need to ask next week. Wow, one week from today I will have more news to share; hopefully a surgery date.

We were eating dinner on Sunday night and I had to ask if the food I cooked was good. My son said "Question; why are we having you cook if you can't taste?" My husbands reply, "Well then son, I think it's time you start cooking!" Yeah, that's not happening. I'm STILL the best cook in the house!!

(I really wanted to call this post "Stiff and Droopy" but I thought twice.)

Here's a great video about the doctor who I see next week...
Dr. Kofi Boahene and his website Facial Paralysis Restoration Website which shows some before and afters. Please take the time to watch the 5 min video. I'll be happy if I just get my mona-lisa smile back.

Resting Bitch Face

I love playing jokes on people. (I already have my April fool's joke ready for next year) 

I love laughing.  

I love smiling. 

I make it a personal effort to smile at people throughout my day. Not being able to show expression has been one of the cruelest jokes that have ever been played on me. Resting bitch face. Now when I smile at people they think I'm just giving them some kind of small little corner of my mouth movement and they are not worthy of a full on smile. My friend suggested that I get those little smiling lips on a stick and carry them with me. I'm not sure I have the dexterity or speed to pull them out at the appropriate time. Plus, people might think I'm a little strange carrying those around without knowing my entire story. Would make life interesting though. Hmmmmm. Where can I buy those? 

I thought about wearing a T-shirt saying "I AM smiling". Or maybe a big pin. Maybe I need to make those for everyone with Bells. 

On a positive note, giving the evil eye to my children is quite easy now and quite effective. 

A dear friend I greatly admire who listens to me bitch has it worse than I do. I think about what she's gone through in the last two (3?) years and I feel like a baby. She didn't get Bell's palsy, she fought a cancerous tumor located in the middle of her head. It has given her greater challenges than I could ever imagine yet she has the compassion to ask me if I need anything. Amazingly in the middle of all the tremendous health problems, she found her true love and married him on February 14. Her heart always remained open. The surgery to have my face move again is much easier than what she would have to go through just to be able to see out of her eye again (if at all possible). But her faith, the love she emits and her strength are unwavering. She reminds me that I am alive to care and raise my children, receive and give love, wake up every day to a beautiful life no matter what I look like. She understands what I am going through and has the capacity to show that sympathy even though her trials are much worse than mine. She is a saint on earth.  ♥️

When I pass you on the street, I have counted my blessings and I am smiling. 

7- Filling in Time

2002-2012 Time passes with my 1st new normal...


After giving birth I worked for a few more years doing AutoCAD for my own graphics company (hiding in my home office) but after 911 hit the work had dried up. I needed to find another source of income. They say the easiest way to get over a fear is to just do something repeatedly. I was deathly afraid of public speaking and I was 2 years into my "recovery" from my first bought with Bells and hated being looked at. But desperation breeds success and we were financially hurting. I had looked for a job but nobody wants to pay more than $10/hour part time and that was not going to make the financial impact we needed. Our commitment to me being a stay at home mom was firm so I needed to figure out something that could fit our schedule.

Thankfully, one night I would meet one of my dearest friends who would believe in me enough to take me under her wing. I had gone to one of those home-based business parties… But this wasn't pampered chef or make up, it was about adult romance products! I was no prude growing up and I've always been comfortable with my sexuality so it easy giving women in that crowd a little advice. I guess Melissa, the consultant, noticed because in the ordering room she asked me if I had ever thought of doing what she did and when she told me potential money involved, I signed up immediately. I learned how to sell "romance products". You know; the things they sell in "those stores" that only men go into and lurk around. This new job would not only save us financially, I would gain a confidence I never knew existed that would last me a lifetime and most importantly a lifelong friend. Plus my husband was completely on board. You want to sell what? Absolutely! How much money do you need?

It honestly helped me get through the last decade with my face partially paralyzed. When I was in front of people making jokes, they laughed and enjoyed themselves so much that I never felt odd. I developed my own stage persona. My tagline to show other women that they could do this as well was "I'm a curvy girl with a crooked face, if I can do this, so can you." Business took off and I recruited women from 11 different states and had some of the best times of my life!  I got to party in New Orleans too many times to count and have some of the funniest stories to share… In fact, I think that'll have to be another blog.

Meanwhile, when I wasn't doing parties at night,  I was taking care of my two children and volunteering as a PTO president. (PTO by day- toy lady at night!) I never made it a big deal in front of my children as to what I did and again I have always been comfortable with my sexuality so explaining to them about their sexuality was never a problem in our house. I guess that was another plus of selling these products. I think I kept the two lives fairly separate and I loved educating and empowering women. Now that they are teenagers, they know what my career was and they also know that it provided for them.

With two children, a career selling toys, and volunteer work I stayed very busy and only thought of my face when that stinking camera came out. But I got good at giving that Mona Lisa smile and giving it the best I could. I am still an active consultant, because I LOVE some of the products for myself... the creams!! The creams!! I know what you were thinking. (Wink wink)  But I do not do parties anymore and only sell things occasionally. I just can't seem to completely close that chapter. 

Again, I don't think I would be confident woman I am today if it wasn't for the business I went into. But I will tell you I am quite mushy on the inside with a hard outer crunch. 

6- Premonition

Do you have premonitions? Do you catch that moment where you say to yourself "my appointment could be rescheduled." I did and it was. Rescheduled for next day....the day Lukas was coming in from Germany. I was really feeling like I wasn't going to catch a break. But I know we all feel like that sometimes, don't we? I think my amount of crying over the phone to the nurse when she called to tell me of the reschedule helped me get in the next day though. I wasn't whining; I was full on crying. I get a little emotionally wrapped around the idea of hope.

My son was unable to join us as he was to meet Lukas that day and we would hopefully be back in time to pick them both up. John's Hopkins is 2 hours away and timing was everything. The night before an unexpected gift arrived at my door; it was a friend with a basket of cookies, crackers, and water for our ride to the doctor. Not only did that make it seem more real, it was an amazing gesture of friendship and thoughtfulness.

Dr. K's office felt like I was walking into a high end Hollywood surgeon's office. A woman was checking out all decked in her best looking FABULOUS having just had some injections of some sort. Am I in the right place?? All I could think of while sitting there was that I wanted to look like her. But I am not thin, statuesque and I'm not African-American with beautiful skin. She was going to miss her flight and rushed out the door. Probably to Hollywood or something like that. They gave me a tablet to fill our a survey for the doctor. "Do you like how you look?" "Does it upset you to look in the mirror?". Tears welled up and my husband took over the survey. I could not complete it and he knew the answers. He knew how I've been feeling and took the wheel.

More torture ensued; Pictures. Full on photographs of me smiling, grimacing, wrinkling my nose, raising my eyebrows. Honestly, it was all the exact same expression for each photo. Then video of the same with me speaking or should I say slurring my words. (Someone once thought I was drunk when I talked to them, not realizing what had happened to me. At that moment, I wished I was toasted) I could tell the nurse felt horrible having to put me through this but she also reassured me that I was in the right place. She gave me a HUGE hug when I left that area of the office. I'm afraid it will not be the last time I'm put through this to compare my before's. (There's that word again)

When I finally got to meet Dr. K I was in awe. I felt like I was meeting a rock star. He said he usually waits 10 mo's before doing any work on a Bells Palsy patients but knowing my situation and how I recovered (or not recovered) the first time, he would only give it six more weeks. When I tell you what he might do, it will seem overwhelming but honestly, compared to what I go through every day. I'm ready to be cut open.

He will re-assign #5 and #12 nerves to work for #7 on my left side. Then he'll cut a muscle on the neck of my right side to release the synkinesis in my face. Right now when I "smile" my right side bunches up. Then do some botox shots on my right, maybe put some weights in my lids to help me blink better until the nerves start working and maybe do a brow lift (woohooo...facelift!!!). If the botox and muscle release doesn't work, he'll do muscle grafting. Not sure how all this will all play out but I know it will be about 3 mo's after surgery before the nerves realize they are supposed to do different things. My next appointment is December 2nd and it can't come soon enough.

We did make it home in time to pick up my son and our German exchange student and were able to sit down for a meal. It was tough explaining to Lukas why I looked the way I did while having a hard time pronouncing words (in English to a German speaking teenager). F- words are the hardest. Go figure, that's my favorite go to word. B's are next and and a word with two B's are ridiculous. By the end of the day my jaw aches from working so hard to speak. And I am bloody tired of repeating myself. So, I tape my eye shut, take a pill and go to sleep dreaming of smiling again.

5- Whats the name of that doctor?

At first I was convinced that this fight with Bells would go away quicker because I was being very proactive; I was taking B12 shots, going to acupuncture appointments, chiropractor appts, doing restorative yoga, more Reiki, using essential oils, and taking my regular meds. I really thought I had it in the bag. 4-6 weeks and I'll be fine. For those of you who haven't done Restorative Yoga, it's a great way to relax and nap without interruption.

By week three I realized there was no improvement what-so-ever. My enthusiasm for alternative medicines diminished and so did my enthusiasm for medications in general. I felt like a human drug depository. My state of mind was fragile; my left eye was worse than my right now, my entire mouth was paralyzed now, my tongue was numb, I was biting my cheeks and lips when I ate, and hell, I couldn't taste food much anyway. Having residual effects on the right compounded the entire situation. I know I needed to see a specialist.

My first appointment was with a neurologist in Fairfax, VA. She gave me a thorough examination, and ordered an MRI. Did I mention I was claustrophobic? That's why I panicked in the ER and but now I had no choice. They needed to see if the nerves were under pressure still. I did the MRI totally sober of any medications because my husband stood there for an hour and rubbed my leg as this machine ROARED in my paralyzed ear around my head and I chanted Nam Myoho Renge Kyo, a Buddhist chant that kept me calm. The results were good, no residual nerve pressure. She told me she'd see me in 3 weeks and sent me on my way. We had lunch at a Mexican restaurant to celebrate the fact that we had hope, where I promptly made a mess of trying to eat food and used a million napkins hiding my un-moveable lips. I cannot move my lips up to get them out of the way of a sandwich. It's not pretty.

Now, let's back up the train a bit....

In the winter of 2015 a colleague of mine suggested I go see a doctor at John's Hopkins regarding the right side of my face. She had gone through a surgery removing Pepe ( a non cancerous tumor that she named) from her brain. Unfortunately, it included her 7th facial nerve. Apparently this doctor that worked on her has been able to re-animate her face. Yes, re-animate. Sounds so futuristic, doesn't it?

Being 50, stubborn and thinking there was no hope I told her that I'm fine the way I was. I was responding out of fear. I did not want any more facial pain and although my eye doesn't blink all the way, my mouth doesn't completely smile; I was used to my new normal and what was the point. Then this happened.

I had to collect 65 pages of medical documentation and submit them to John's Hopkins BEFORE I could schedule an appointment with Dr. K. Within one week of submittal I was on my way to the "reanimation doc". I had hope...I must have read his website a million times. I poured through before and after photo's and even included photo's in my medical records to show him all my before, before and after. I said before twice because this was my second round so there was a before before the before. I think I confused myself. My appointment was scheduled the day before our exchange student from Germany was to arrive. I got this...house was cleaned, I'll cook the day he arrives and my son was going to come with us because he is interested in medicine. All set and excited to go...the count down began.

4-What the (insert curse word here)

My summer of 2015 ROCKED!! Lot's of boating with friends, beach trips, dodged photo ops...the normal. Then on September 9th I noticed that my tongue was slightly numb. I honestly thought it was my mouth guard from TMJ that I sometimes suffer from so I decided I would sleep that night without it. Then my worst nightmare came true. I woke up the next day 9/10/15 and the LEFT side of my face was paralyzed!!

I will not mince words....."What the FUCK?" came out of my mouth many times that morning while I drove myself to the ER. I was hysterical. I was so stunned that this could happen again that I didn't even want to call my husband. Saying it out loud would mean it was real. This was not real. It could not be. The doctor's at the ER did stroke testing and I will be honest with you; at one point I was hoping it was a stroke instead. Mind you, I have NO idea how much more serious that would have been but at that moment I just didn't want to be diagnosed with Bells again.

I finally gave in to calling my husband and mother in law (known as Mom from here on in) after about an hour of the nurses asking me if anyone was coming. I'm pretty sure when I called them, they were in shock too. The doctor's had to give me sedatives, pain meds, prednisone to get me under control. They did a CT scan and TRIED to do an MRI but I panicked and couldn't do it. They drugged me some more and eventually sent me home.

Valium was my friend. I stayed in a drug induced state for a few days not wanting to come out of my bedroom or talk to anyone. I did not want to face reality. No pun intended. My friends rallied and preformed Reiki, they brought chocolates (those are good friends) and told me I would recover quickly this time. I truly wanted to believe them. And after a few days of some serious pity parties, I committed myself to healing. This was going to be a FAST turn around! I just knew it!

3-Mommy's Smile is Broken

You never realize how much our kids mimic you. They are little copy-cats. Here is my son at two...see his crooked little smile? I cannot tell you how many times I had to tell him "Honey, you can move both sides of your mouth, mommy's smile is broken, not yours." My daughter did it too. My son, now 15, told me that he's actually never seen me really smile. That broke my heart and I hid my emotions really well until I could get into another room. Then I had a really fabulous pity party that needed a whole box of tissue.

There are moments in a persons life (milestones) the define you. There is a me before Feb 2000, there is a me before Sept 2015 and me now. Yes, I'll show you those pictures but not just yet. It's still too hard. I call the dates after Bells my "new normal" because I think once you have something altering happen to you, you are never quite the same.

That's my husband of 21 years pictured with my son. He's loved me through all my new normals.

Note: Bells Palsy can run in the family, it is not hereditary but it can be predominant. My mother had it and so did my uncle and they fully recovered. One day when my son was about seven years old, I walked into the kitchen and he told me his face felt funny. I asked him to smile at me and that's when I realized it was happening to him as well. I told him "We are going to take your sister to kindergarten and then we are going to take you to a doctor". I took him to the emergency room where they found out he had lymes disease and bells palsy. He too fully recovered. You cannot imagine my fear then I saw his face… There's no way I wanted his future to be like mine. Although, even in the picture below he is pretty cute with a pretend crooked face.

2- The First Time

The day of "love", Valentines Day, 2000. 20 weeks pregnant and feeling.....Uh oh.

I can't remember if I knew what was happening because it was 15 years ago but I do remember that I was in pain, confused, as big as a house, expecting my first child and I had planned a romantic dinner with my husband for that night. Boy, can plans change quickly. I woke up that morning and couldn't move the right side of my face.

That's when I was diagnosed with Bells Palsy #1. My eye drooped quite a bit, I couldn't blink or close my eye. my mouth was useless on one side.  The doctor prescribed prednisone (that little pack thing that doesn't work anymore). I know they were afraid to give me much more than that because I was pregnant so I went home with excruciating facial pain. Like, stand in the shower with hot water pouring on your face to take it away facial pain. I drank wine and took anti-inflammatory med's and I begged my doctor to do something but he didn't have any answers for me. I was desperate.(Dude, my facial nerve was being crushed!!) About 4 day's later I couldn't take it anymore and went to the ER. They dosed me up with more prednisone which thankfully reduced the swelling and stopped the pain and politely suggested I see another doctor as a follow up.

After 10 weeks, I still couldn't blink or close my eye on it's own. You never realize how important it is that you blink until you can't. Blinking or being able to close your eye moisten's it, it protects it from projectile's. It protects it from the fabric when you pull a shirt over your head (ouch!!) or from the shampoo so you don't end up crying in the shower from that horrible stinging sensation. You become adept at either taping it shut at night and holding it closed in the shower along with your ear....Oh, I didn't tell you....Not only does your face become paralyzed but the natural dampers in your ear don't work so everything is SUPER LOUD! You don't have to yell, I can hear you.

My life consisted of sleeping, taping, sipping through a straw, and waiting. Waiting to give birth and waiting for the nerve to regenerate. I say I endured my baby shower's because every time someone took a picture, it reminded me that I could not smile and I looked (to me) horrible. Take your hand, press it against one side of your face and pull down. That's what my face looked like on it's own accord. I have not enjoyed the camera in 15 years- I've learned to dodge it, to sit in a certain position so it only showed my good side (okay, I seriously only had one good side then) and bare  the "but you look fine" comments.

On June 17th I gave birth to a very healthy baby boy. I didn't think of my face for many years although I always made sure my good side showed. Eventually my eye started to close and blink though it never did fully recover and unfortunately, the corner of my mouth never did let me show my teeth. I was stuck with a Mona Lisa smile. One neurosurgeon told me it wasn't that bad and surgery wasn't necessary. I went with it...I decided to move on and accept my new normal.

1- 15 years and counting

Not only do I hope this blog helps someone dealing with facial paralysis but it's also cathartic for me to put it all into words.

It's been over 15 yeas since I had my first case of Bells Palsy and on Sept 10th of 2015, "it" decided it was not going to be my last. Unfortunately, the first go-round did not heal all the way. So, needless to say I am a paralyzed mess right now. It's easy to drown with a spoon of soup (I'm not kidding you). FORTUNATELY, I have an amazing husband, family, friends and community who keep me from drowning......figuratively and literally.

For those of you who have dealt with or are dealing with facial paralysis......I get it. Trust me. I've tried to hide, I've tried make-up tricks and pulling my hair across my face and it doesn't quite do it. I now just have bitching resting face or a bunched up uneven grimace. Every night I dream of smiling again and waking up to a miracle cure. Then I open my one eye (because the other one is taped shut) and reality hits. The pain from pulling off the tape wakes me up and I start again.

When Bells came on in Sept, I decided that Wednesday's were the day's I was going to cry and have pity parties.  And I've had some great parties this last few months!! Today I've decided that Wednesday is my Blog day. Do I still cry? Absolutely but I keep it to a minimum. I'm human and I know other's have it worse but everyone has sh!t in there life, this is mine and it stinks just as much.

For those unfamiliar with what Bells Palsy is, let me educate you....
Bells Palsy is a virus that comes on quickly, inflames the "tunnel" in your face where the 7th facial nerve comes through to work your cheek, mouth, eyelid, lips, eyebrow...basically all your facial expression. The virus swells the tunnel, crushing the nerve and causing paralysis. Most patients, heal in about 4-8 weeks, some 3-6 months, others, like me (I'm special) have residual damage. 7% get it twice. Told you I was special. When I say "heal", I mean the nerve regenerates. If you see someone and notice that one side of the face looks droopier than the other, they probably have or had Bells or some sort of nerve damage. It's a cruel virus because it comes, leaves it mark and you are left expressionless.

I have quite a journey ahead of me because of pending surgery. (Yes, it's that bad) But I am 50 and I'm looking forward to not only smiling again but a potential face lift. Technology has come a long way and I'm ready for the next step in my journey. Please join me....

But for goodness sake's don't pity me!! Bell's Palsy is only one aspect of an otherwise blessed life.....