Smiling More!

I've definitely had some improvement over the last week!! I'm honestly not sure I should've had surgery over the Christmas break because it has been crazy around here and getting rest has been a challenge. (Did I mention that between Christmas and New Year's I also have a child's birthday to celebrate?) But I'm getting through it. My husband, family and friends have been a great help – along with my kids. I felt a little selfish for a few days knowing that it was Christmas and I could not do all things for my family that I usually do but sometimes you just have to take care of yourself.

The only issue I really had is the cut around my ear is still pretty nasty looking and I actually thought I might lose part of it. They assured me it would stay on. Gain a smile, lose part of an ear. It's all relative. I've also had some pretty good bruising on my neck. I think the clerk at the Walgreens might've thought that I was choked or something because she acted really odd. This actually looks better than it did a few days ago. I almost want to wear a little button that says "just recovering from surgery". 

 ( I'm NOT  going to show you my ugly ear. but I did have my husband take a picture of it so I could see what it looked like and send it to the doctor. EW!) 

Last night I thought, "OK, I'm going to try sleeping without taping my eye shut". I lied there for less than 1 minute before I realized that I saw the clock light and my eye was open. Luckily, I found some amazing tape that doesn't rip my skin off every morning. It'll happen, eventually. 

My tongue is still a little numb but I did not have an operation to correct that because it is too deep of a cranial issue. I think the taste buds are coming back a little bit each week. Although, I'm not sure if being able to taste carbs again is a good thing!  

The best news is is that my friends say my eyes look happier and I can tell that the right side of my face is more relaxed and there is movement on my left side. I went out today grocery shopping and for the first time in four months I felt that I could actually just give a little bit of a smile to people passing by me. 

Here's me – no make up. A little tired from my daughter's birthday festivities but I'm hanging in there. Each week gets easier and the swelling goes down more.

I think next week I will post a little survival guide to having bells palsy. There's some things you always want to carry with you when you are going through this. I do think there needs to be more research as to why this happens to people, why the recovery is so different for everybody and help for the psychological effects that it has on a person. Thank goodness for support groups.

Happy New Year!!! May 2016 be healthy and happy! Counting my blessings, and there are many.

Ox 

The Reveal

There will be a slightly graphic picture. Not that horrible but if you don't like the site of stitches then squint as you read. 

I will honestly say that the first day after surgery I questioned my sanity about having this done because my face and body hurt so much. And I know that sounds selfish considering how badly I wanted the surgery. But when you are in that much pain, you will question your sanity. Today (4 days later) I am much happier and not in pain and would highly recommend it. I'm still tired and my face is still swollen but I'm slowly returning back to my normal. I'm thinking that in a few months I may even have a newer normal.

Here is a post operation picture. Pretty much right after I took the head wrap off. I think my face expanded by three or 4 inches when I took it off. It was holding all the swelling in. I looked in the mirror and I was a little shocked at first. No, I am not giving you a picture straight on because that is just a little bit too revealing.

You can see that I have about a 3 inch incision on my neck and that's where Dr Boahene did the muscle release for the synkinesis. There is also a cut right on my hairline by both ears where he did the nerve transfer and nerve testing. In front of my right ear there is a Steri-Strip with a stitch that is holding up a nerve out of my face which Dr Kim actually ended up snipping today. It relaxed my face a little more and helped with the bunching up.

You can't really see the stitches on either side of my ears. But I could tell you that when they took them out today I felt every bit of it! Thankfully, I had my sister-in-law Donielle's hand to squeeze really tightly while she assisted the nurse. (And thank you to my "Uber driver" Donielle,  who spent seven hours with me today getting me there and back in some of the crappiest traffic!) 

Now for the reveal.....

There is still a lot of swelling in my face (it's given me and very big second chin! ) but  I am SUPER happy with what I am seeing!!!!!! The right side of my face looks so much more relaxed and it feels so much better. It's not like a balled up fist anymore. The left side is getting movement back in my lips and in 3 months either the new one will take over or my seventh facial nerve will have regenerated more and show even MORE movement. In January I might have some Botox injections to even things a little more. The more movement I get in my left side will help it not pull to the right.

For those of you who suffer from Bells (and I know there are many because I see you on support groups) Don't take the word of just one neurologist go seek out someone who can help you. They are out there!!! You want to see an otolaryngologist.  I know without another major surgery (muscle transfer), which I probably will not have by choice, I will not get my toothy smile back. I'll be honest with you, I'm 50 years old and I'm not sure that I want to go through that much more pain, I just want to show a happy face. So when I can give you a nice even Mona Lisa smile then I will be EXTREMELY happy and live a very peaceful life and I will enjoy having my picture taken once again. 

Merry Christmas, happy holidays, happy new year and love to you all!!!! Thank you for all the meals, constant concern, gifts and visits. Your belief in me and my family has held us up so that we could get through this. I am ready to celebrate a New Year!!! 

Ox

Mia

I look like Jacob Marley

Do you know who Jacob Marley is from a Christmas Carol? Well, that's  me...

Surgery started at 1 and was almost 6 hours long. That's probably is why I was so nauseous after surgery. I was full of anesthesia. They actually took video tape of me before the surgery saying and doing certain things so they could play it on a monitor while he operated. 

My surgeon and I agreed that the eye weight wasn't necessary because as of this week it's blinking better. I was a little worried at first that he wasn't doing it but after waking up this morning I thank goodness he didn't. I don't think I could take that on top of what he did. As it is, I cannot wear my eyeglasses (ears are covered)  so I put my contact lenses back in. If he had operated on my eye I basically would be blind until this head wrap comes off. Maybe I'll let imy daughter decorate it today. I think it needs some ornaments.

On the left he did a nerve reassignment, which included testing the 7th facial nerve. It is sending signals but as a back up he gave it a bit of another nerve. In about three months we will either see the new nerve take over or the older nerve regenerate itself.

On the right he did a neck muscle release which apparently is a good 4"-5" cut on my neck. I can't tell how big it is because of the head wrap. Then they tested the 7th facial nerve on that side and found 2 branches that were causing the facial stiffness. He cut one but left the other pulled up above my skin with a suture. He wants to see what the first cut did before he decides to cut another. We definitely wouldn't want any more droopiness. 

Unfortunately, I woke up in recovery sick to my stomach, no, let me rephrase that. EXTREMELY sick to my stomach and I ended up there for four hours. My son suggested that I stay overnight in a hotel in Baltimore after the surgery. I thought about that but I really wanted to wake up in my own bed this morning. Even though the ride was a rough hour and a half, I was pretty out of it and I am happy to be home right now.. 

My throat still hurts from the intubation and medications are kinda doing their job but it is nerve pain. It needs to chill.  It's hard to talk but I'm sure the next few days things will get better. I can honestly say that it  is definitely more painful than I thought it would be.

My daughter greeted me with a get well poster and some hot green tea, they tucked me in and took great care of me last night. Right now I am the queen of the palace.  Hmmmm.... I might have to stay in pain the whole week! The kids ARE home!! 

I'm glad I can share my story with you. I'm glad I made it through surgery. I definitely thought about that. I could not say enough about how well I was treated at Johns Hopkins. The entire experience; caring and concern from the staff was amazing. And they are so stinking efficient. My recovery nurse took care of me nonstop for four hours and was so calming the  entire time. 

OK guys, meds are setting in and it's time for this girl to rest. Enjoy your day!! I will be watching some stupid TV but HEALING!  

Oxoxox

APPROVED!!

My insurance thankfully approved my operation after a peer-to-peer consultation with my surgeon!!!! My anxiety is gone! Whooohooo!!!! (Now I'm nervous)

Surgery is this Friday, at Johns Hopkins in Baltimore. It is a five to six hour outpatient procedure and we will let you all know how I'm doing as soon as we are able.

I cannot express enough how amazing my family,  friends and this community has been supporting me throughout this. I have had plates of goodies dropped off, offers of fundraising, and continual concern for my health. I love you all very much and consider myself one lucky lady. 

Cheers to a New Year of smiling and health!!!

Mountain in the Road

I'm going to make this brief for two reasons. If I think about it too much I will completely fall apart and that won't serve me emotionally or physically. The other reason is because I only have so much information to go on anyway....

My surgical coordinator called me and said my health insurance has denied my surgery because they believe it's cosmetic. They are going to do a peer to peer consult and hopefully their decision can be changed. They told me 90% of the time it is.

Would this surgery help me cosmetically? Of course. BUT, I cannot blink my eye to moisten in. I cannot see out of it clearly most of the time because of this. I have to tape it at night to keep it closed and healthy. I cannot eat food properly or speak clearly. I am in facial pain on the right side from the sykenisis which has only gotten worse because the lack of the left side working and it's compensating. My jaw hurts after I talk for just about and hour. I can only look at a monitor for so long before my eye goes blurry and burns. This will keep me from a full time income and potentially affect us financially.

I'm not sure what I will do if they say no. My head swims when I think of it.

...so there you have it. I go into the weekend not knowing if I'll have surgery next week or not now. After all the excitement, I feel like I've been punched in the gut.

Back in limbo.....

Let's face it…

It's time I showed you what I really look like. It's hard for me to publish these but it's important because I know it's hard for people with facial paralysis to face the world every day. It's difficult not being able to simply smile, or having to repeat my words because they can't be understood or use a TON of napkins to wipe my mouth because my lips don't want to keep food in. Some people say, "You look great today!" and I do appreciate that but it's most likely that I learned how to contour my face with makeup. It also could be that I've been using my eye cream to tighten my lips as well. Really, I do. When you're in this position, you will try anything to try and look right again.

Again, this is not for sympathy, it's only for your understanding. Some of my friends have never known me before all this happened. Some thought I was born that way. I'm not sure if it's ever affected the way people treat me or befriend me. I would hope not- I know that I could never judge another based on appearance. Especially after going through this. My compassion for people has only deepened.

This is a picture of me, obviously much thinner but before I ever suffered from bells palsy. Showing my teeth and being kissed by my dear husband. Shoot, we were young! (mid to early 20's - he has put up with me for a long time!)

This was just last summer with my Niece where I could give a Mona Lisa smile. I could live with this!

You can see how the right side doesnt quite exactly go up so I would adjust the amount that I'd "lift" my left. Knowing I'd never have a toothy grin was acceptable to me and although I have problems with my eye weeping I never considered it annoying enough to see a doctor about it. I think many of us put up with inconsistencies in our bodies that we could probably fix but except them and move on. You would probably would never have known anything was ever wrong if you saw me at this stage in my life. (Edited: BWAHAHAHA!! I just realized the face my husband is making in this pictures. Too funny. God I love him! )

This next picture is very hard for me to post. But I have to put it out there so not only can you compare the progress over the next year but also show myself that it's OK to be who I am.

I took this picture this morning with a full on "smile" . This is as much as I can move my face.  Like the doctor said we need to loosen up one side and tighten up the other and bring back the symmetry. Now that I look at this picture I really should've gotten those stupid little smiley faces on a stick. Is it too late to ask for a stocking stuffer? 

Part of me wishes I could be put in a coma over the next six months so that I could just wake up and see results. I know it's going to be a long process. But I am so glad that I will be starting this journey of healing next week! 

Crap, I forgot to ask the doctor for a nose job while he was in there! Oh well. 

And here we go!

December 2nd could not come soon enough and getting there that day was nerve racking!! Putting it bluntly, the weather and traffic sucked. What should have taken 1-1/4 hours took 2-1/2 hours. Needless to say, we were late but my doctor's practice was amazingly accommodating and said they were just glad I made it.

I had a feeling the first thing they would do is update pictures and sure enough they did. Thankfully, I was mentally prepared to give them my Mona Lisa smile, grimace, big smile, etc and I didn't get emotional. Unfortunately, as last time, the "look" was still the same and I could tell in the nurses face that she knew nothing changed over the last 6 weeks as well.

My 15 year old son, who is interested in medicine came with us this time. It was the three of us (my husband as well) in the exam room trying not to fiddle with the gadgets. For some reason there is a sink that reminds me of a hair washing sink with a sprayer. I'm not sure what that would be needed for but my son just had to test the sprayer!! I'm thinking, please just don't let the doctor walk in right now. After meeting Dr. Boahene, my son said he could see himself doing this. I think he just liked all the cool things in the room.

The doctor noted a little more tone in my left side and I know I could feel just a twinge of movement on that side of my chin but no movement. He had me smile and smile again...and again...and again....and again to see how my face was working. The right side is all bunching up and the left side is droopy. As he said it in laymen's terms; we are going to tighten the left and loosen the right by taking a good nerve from my face and connecting to the muscles on the left, and then pull some nerves through my face on the right and see what is causing the stiffness and cut it. Then weigh down the eye lid so it blinks. Yeah. When he mentioned the "pulling the nerve through a small hole in the face" is when I cringed. He assured me it would hurt, but I would be asleep and not feel it. (He has a sense of humor as well)

Now let's say it in doctor language: he's going to do a masseter nerve transfer to the anastomsis facial nerve, then suture nerve, (put a) platinum weight (in my eyelid), neuroplasty & transposition cranial nerve, suprafical parotidectomy, ectropion repair, resection platysma muscle and a select neurectomy....I can honestly say when I read that my head swoons and I get light headed. Can't imagine why.

Believe it or not, he said I should be recovered in one week and on my feet in a couple days. It is an outpatient surgery that lasts about 5-6 hours and as a Christmas present to me, he will do it on 12/18, the day before he goes on holiday. (Now I'm tearing up)...This means I will be able to blink right away and that my right side won't feel like a strained muscle all the time and that in 3 mo's my face will start to move. I'll repeat that one   more   time....my face will start to move! And he will help me regain symmetry and a nice natural smile. Okay, I gotta go....I can't see through the tears of joy.

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.....