Friday, August 18, 2017

No Wrinkles

I have been a bad blogger and I have been a bad patient.  I think I got tired of focusing on my Bells Palsy results and needed to step away. So, I took a full time job last November, stopped seeing my doctor and here I am a year later, pretty much where I left off.

I can give a slight smile with my lips, closed. My eye's close at night now but I think they pop open sometimes when I'm really tired. Not sure...haven't asked anyone to look at my eyelids in the middle of the night. My lower lip is tight and being pulled down a bit. I should go for Botox injections to relax it but I am scared of losing any control of my mouth. Some days when I am stressed or tired, my face gets tight and it's hard to pronounce words.  I could go for muscle transplant but I seriously have to decide if I want to go through any facial surgery again and have a muscle cut out of my thighs. My thighs need all the muscles they have now!!!

Honestly, I'm tired. I know I need to do something and move forward but my doctor is literally a 2-1/2 hour drive away and now that I have a new job, every day I take off, I feel guilty. My old body (52) isn't bouncing back like I'd hoped it would. Although everyone says they could never tell I have facial paralysis, I know that when I laugh, my teeth do not show and I look toothless. Like an old lady without her dentures. Sad, I know. First world problem? I guess. But not being able to smile and show my happiness absolutely SUCKS. Seeing other people's toothy grin just pisses me off. Not being able to bite into a sandwich because you can't get your lips out of the way SUCKS. There are other things I cannot do with my lips anymore but I won't go there in case someone little is reading but I think you get my point. That doesn't suck.. HAHAHAHA!!!!

I wish I had better news or a more uplifting blog today. I am hoping that all of you reading this are feeling more confident and get your face back, completely! Maybe some amazing surgeon will create a tiny robot that could go into our faces and make our nerves work again. The ONLY benefit of having residual facial paralysis is that I probably won't develop any wrinkles. I can't really move my eyebrows; so no worry lines for me and at least it's FRIDAY!!

Love & Light my BP Peeps!

Wednesday, September 14, 2016

1 Year Post BP

I must apologize to my readers. I have not kept up my blog; for a couple reasons.

After a few months of recovery, summer hit and honestly, it was time to play with my family and friends. I felt that I had missed so much life from Sept-January. I missed throwing my annual Halloween party, Christmas was a blur and Jan/Feb was painful. I also just needed to walk away from my reality. I did not want to be the "woman with Bells", I just wanted to be me.

I can say that I had an absolutely wonderful summer; vacationed A LOT! Had family come to visit, went to Cancun, Disney, Nags Head, NC, camping for my husbands 50th....we played and played hard. I also took on two part time jobs. Neither of which required me to be in public speaking positions which I felt were too much for me because of the weakness in my lips. Not to mention my self consciousness about my face.

Honestly though, I could never really escape the mirror. The mirror, as my uncle said at a wedding this Sept, is the one thing that should smile back at you every day. That hit me hard. Very hard. Because although I can move my lips into a slight smirk, I still cannot lift my upper lip and smile with my teeth.

You have ALL said how "wonderful" I look and I appreciate that. I have had improvements. But I want my stinking lip to move! Do you know how hard it is to eat a pastrami sandwich without moving your lip out of the way? Please, try it. Try it today with your lunch. Bite into your food and DO NOT move your upper lip. Then get out a TON of napkins because that is what you will need. It sucks. Will it ruin me? Hell no. But it sucks. Eating sloppily sucks.

I have an appointment at the end of October for a follow up. My doc might shoot my chin up with Botox to get rid of the bells palsy dimples and maybe relax the wooden feel of my mouth. I am going to ask him for a lower lip tuck because my aperture is gone (in other words my lip has no muscle control) and a eye-lid tuck so I can wear makeup without it ending up on my lids EVERY TIME. I am sick of my husband saying "honey, wipe your eyelid". Not that I don't appreciate him looking out for me but seriously. It gets old. Waterproof mascara my ass.

9 months since surgery and my ears still itch from being cut (so if you see me with my finger in my ear, that's why) and my neck is still slightly numb. I get some sharp tingles in my face every once in a while and I can only hope that it's a good thing. I stopped having to tape my eye shut in early spring but when I'm really tired, I wear an eye mask to keep them closed at night.

Recently, I saw some results from a gracilis muscle transplant. That's where they take a muscle from the thigh and put it in the face to replace the atrophied muscles. If you asked me in Jan/Feb if I would ever go through facial surgery again it would be an emphatic no. Now I am considering going through this one. It MIGHT get my cheek muscles moving again. I cannot do a "blowfish" and food gets stuck on the side of my mouth because my cheeks don't move. You would never realize the slight movements your face/body does all day to help you live until you do not have them.

September has been especially tough. I get scared that BP will come back. I think , "It's  been a year - HEAL ALREADY!" I get frustrated and take it out on my family. Hopefully after October I will feel a little better about my appearance which sounds soooo superficial. Maybe that's the lesson I'm supposed to learn this time around. IDK. I don't want to hate people that show their teeth but when I see a huge smile, that's all I think about. But please, for god's sake, don't stop smiling around me. I'll be okay - it's just a phase of life I have to go through. I have things that many other's don't and I have to remember that. We are all blessed in different ways. Just not all the ways WE would like to be blessed - I guess it's not our choice.

Okay, back to my day...I hope you have a beautiful one. <3 I'll try to blog more often.


Thursday, January 28, 2016

Leave the Lump Alone

Today I got to see my doctor for my  official post-op visit. The first visit, right after surgery, was to take out the sutures. This one was to measure progress.

I can actually say that doing the videos and the pictures was a little pleasurable because I know that I look much better. What a difference five months can make! I didn't tear up, I smiled for the camera. Knowing it wasn't perfect. But damn it, it's a smile and it's MINE!

Now, did I mention the 1/2 grape size lump on the side of my cheek? I probably should've called the doc but it wasn't particularly painful and I figured it was swelling. Well, it's not swelling; he put  something in my cheek to help protect the nerve while it healed. "Should I massage it?", I asked. An emphatic NO came from my surgeon. It will dissolve! Leave the lump alone. And so I shall. 

My doc believes I will be able to move my upper left lip eventually and get my eye function completely back. Because of my progress he's going to wait on Botox and then in three months decide (and probably schedule) a lid tuck and lip nip. I have a puffy part of my lower right lip that never resumed it's position after Bells 15 years ago. I want it fixed. I've come this far; why not. The lid tuck will give me eye lids again (Bring on Ipsy's eyeshadow!!!....Ipsy is a monthly makeup mailing thing and I've been saving the makeup for that one particular day when I feel I am ready for it again. I'm hoping that's 2016)

I'm still taping the eye shut at night. I was hoping to only go through one roll. I'll be optimistic and think 1-1/2 now. Oh and get this.....the one day that the tape comes off at night, I get an eye infection, is the day of the BLIZZARD in Virginia, and I break my glasses. REALLY??. So I just sat REALLY close to the TV for a few days. I have a feeling though that there were a lot of us saying "REALLY??" this past week. (Melt already!)

Actually, life it starting to normalize; especially now that I CAN DRINK FROM A GLASS!!!!! I bet there were a few "Yay's" there from my Bell Tower Buds. It's the simple things that keep us going from day to day; a little eye lid twitch, the face tingles, the day you don't drool when you drink. Although I know some people who drink and then drool. LOL!!! Anyway....wishing you many simple pleasures and thanks as always for your love and support.


Friday, January 15, 2016

Four Weeks Today

Surgery was four weeks ago today. I'm really happy with the progress. I can smile! My lips on the left side are still pretty paralyzed but as you can see my cheek is rising! My eye is coming back slowly but surely although I am still taping it shut at night. The sides of my face are definitely still tender and actually kinda stiff and numb. I would really like a back massage but there's absolutely no way I could put my face in that hole in a table. Who likes to really do that anyway…

I get a lot of tingles like I'm getting stuck with pins but that only means the nerves are receiving and sending signals! It's weird because my face will get a pain in it and I will go to touch it and I can't feel my touch but it makes the pain go away. Does that make any sense at all? They said it will take a little while for the numbness to go away because my skin had to be separated from my face. (Eww.)

 I have a follow-up appointment on 27th of January where I might get some Botox injections to relax the right side a little more. It all depends on what the doctor and I think. 

I am putting make up on again, I am dressing up again, I am feeling more confident which all brings tears of joy.… 

Crap, there goes my eye make up! 

PS- it took me a long time to decide to actually post this photo because you may not see anything wrong with it but I do. But it's important for me to put it out there for those of you who are hiding in your bell tower.


Wednesday, January 6, 2016

Bell Tower Survival Guide

Bell Tower Survival Guide

Since I've had Bells Palsy twice, I thought I'd give you some sage advice while you are healing....

1. You are your own worst critic. 
People don't see you the way you see yourself. Be kinder to that face in the mirror. Give yourself a break and get lots of rest. (Yes, I know that's asking a lot but it's important for healing) Remember, you are allowed to cry and hide just for a bit. Then you need to pull up your big girl/boy pants and get on with life. It sucks. Facial paralysis really sucks. You'll survive though, believe will go on.

2. Get some really good eye tape! 
More than likely, your eyelid is paralyzed open or does not blink fully. Your eye will tend to pop open at night while you are sleeping so it’s important to tape it shut. This will prevent infection from a dry eye. I have tried numerous types of tape. Very sticky tape will take the skin off your face every morning but weak tape will not last through the crocodile tears and the crying jags you will go through. I’ve posted a picture of the tape I have found most successful.  I’ve also found that an eye mask is helpful. Slit the eye mask open on one side and stuff it with a little cotton. This will create enough pressure to help the eye stay closed while you sleep.

Definitely USE THE EYE TAPE IN THE SHOWER! There is nothing worse than getting soap in your eye every time you wash your hair. (Okay, there are worse things, but you know what I mean.)

Love this particular foam tape! I picked it up at a local pharmacy. Sticky enough but not hurtful.

3. Know the difference between eye drops.
Most of us suffer from an eye that either doesn't blink or barely does. Your eye's can become irritated and dry. Especially when you are focused on reading or staring at a computer screen reading my blog. For this reason, it's important to have good eye drops. There are two types of drops; ones with preservatives and one without. You can use the preservative drops twice a day; more than that and you can develop crystallization in your tear ducts which can cause other issues. You can use the preservative free drops multiple times. They come in little blister vials. Personally, I liked Systane. Unfortunately, they are not cheap but you are worth it. Keep a few around so when you lose one (which I have plenty of times) you are good to go. Pat your eye instead of wiping; it'll keep you from stretching the skin. 

4. Time to break out the glasses.
If you have contacts, get glasses. Contact lenses just don't work well when you have Bells. Your eye dries out faster now and wearing contacts will just irritate them. So just suck it up and get glasses. Go for the librarian look ladies! Gentlemen; glasses make you look smart too!

5. Straws are your friend
Who knew the simple act of drinking out of a glass was so important. Bells paralysis can make drinking in public embarrassing. Stock up on straws! The thinner the better. Fatter ones are hard to navigate with paralyzed lips. Put them in your car, purse, pocket and be ready to whip one out even when wine/beer is served. I recycle mine and rinse them out at home. Worse than soap in the eye is drowning while drinking. It's hard to drink without the use of lips- be careful out there but enjoy a drink, you deserve it!  NOTE: unfortunately, eating soup can also be a problem. Your lips won’t form around the spoon. Take your time and be prepared with napkins.

6. Have patience the first 3 month’s but then get aggressive with treatment
If you don't see any improvement and your doctor isn't helping, step it up. Personally, I went to see an Otolaryngologist and that's the only doctor who knew and understood what I was going through and how to help me. Do not accept "There's nothing we can do." from your doctor. Find another one. Synkenisis (the “popeye” face bunching) can be relieved. There are doctor’s that specialize in facial re-animation. I hope for your sake it never gets to that point. But if it does, you have resources.

7. Smiling from the inside
Here’s the toughest one; not being able to smile. The simple act of showing emotion is stymied. For some of us, you cannot move your lips at all, for others, only one side rises. Psychologically, it’s probably the hardest part of having Bells Palsy and the most devastating. As you know through my blog, my son used to mimic my crooked face when he was a toddler, which threw me for a loop. For most of you, your smile will return, in time. For those who suffer severe nerve damage, you have options for reanimation. It’s a slow road to recovery either way. REMEMBER, you see your face every day. You don't notice the changes as much as someone who only see's you every week or so. And some may never realize you have a problem. I can only tell you that over time, you will recover or embrace a new normal and that life will go on.

8. Join a support group
If you feel yourself retreating into your bedroom for more than a few days, it's time to get help. No one talks about it but there is a deep psychological side to this disease (?), virus (?) whatever it is. I know it's hard to face the world. I'm with you. There are many support groups on Facebook or blogs like these. We are here for each other. Reach out and know you are not alone.

9. Hug yourself!
For me, it's a new normal. After this many years, my face will only do so much. For the majority of you, you will recover fully. Either way, love yourself and the skin you are in. We only go around once, you might as well do it laughing, loving and living!

What helps you get through the day? Please post in reply's.

Coming out of my Bell Tower after 15 years. I'm about 1/3 of the way down. (tall tower)

Your Bells Palsy Sister,


Wednesday, December 30, 2015

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.


Wednesday, December 23, 2015

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!!!