Coming to terms with your Facial Paralysis

[nancyann]

I've been on the roller coaster in my mind again re: my facial paralysis.   I just read Eve (Tator's) response re: when to return to work.  My hat goes off to you Eve for being able to get back in only 3 weeks !!!   I was still a basket case at that point.   I for one would like to know YOUR secret.
I've been having nightmares about demons for the past week, it is scaring the beejeesus out of me;  I'm thinking is it may be due to my descent in thought over the paralysis?   I do try to stay positive as I know I have options, I'm still on the 'healing path'.  I don't know what's bringing on the 'bad thoughts' I get sometimes when at work, etc.     I know my eye has been bothering me more since I don't hae a weight in.     Any thoughts on full acceptance of your facial situation is greatly appreciated.
Nancy

[1wareagle]

Morning Nancy

Hang in there, your're not by yourself on this matter. I think when you get your new eye weight you will feel better about yourself. If I can get up in front of my church and lead music with one side of my face dead, you can make it too. I know if you were not having so much trouble with your eye,  things would be a little different. I also got back to work in 3 weeks. It wasn't easy but I had to push myself.

You can do it, hang in there!
Ellis

[Jeanlea]

Hey Nancy,

What timing.  I was just reading my local newspaper online and there was an article about another person from my town who had a brain tumor removed 3 months before I did.  I sort of know her and knew about it before my surgery.  I looked up her brain tumor type.  Ir was also benign.  I was thinking that tumor might have been better.  She has no real after-effects like a paralyzed face. 

It is hard to deal with facial paralysis.  It's rotten luck.  But we do deal with it.  There are good days and bad days.  We do go on.  This past Monday I was a speaker for a small group at a conference.  Then I ended up calling out names for a raffle drawing in front of the whole group. 

Thank you for saving me from heading down a bad path today.  Just knowing that there are other people sharing the same problem with me helps. 

On a lighter note... On my recent visit to my doctor he gave me back my most recent MRI films.  I thought to myself, "What am I going to do with these?"  I decided to give them to my students (fourth graders).  They thought it was cool.  I told them this proves your teacher has a brain.  lol

Keep smiling on the inside, Nancy.

Jean

[nancyann]

Thanks guys.  Geuss I'm just tired from it all....  Waking up several times during the night with my eye bothering me - I just need to be patient !!

[stewie]

Hi Nancy,

I know what you mean about the nightmares. I go through phases myself. Things are good, and then all of the sudden some bad thought creeps into your mind and it starts to control all of your thoughts. I hate when that happens!

Anyway, try to keep telling yourself that you are healing. That things can only improve! Once in awhile I'll talk to someone I work with. They will point out all of the improvements that they have seen since my return to work. I guess I let all those things go unnoticed --- walking, driving, functioning as a whole person on a daily basis. They comment on the improvement of facial appearance; such as better tone or that they generally see a big difference. Its hard to see these improvements on your self. We see ourselves everyday. .  .and if you're like me. . . each morning when you wake you hope to see your old self looking back at you in the mirror.

I think the old self is there! She's just taking her time . . . . slowly coming back to the reflection that you know. Hang in there. . . you are improving! And in case you didn't know it, your smile shines through your communications!

Take care,
Kathy

[redgrl]

Nancy i feel you on this one. I am only 8 months out but I have good days and bad days. Wish i had more good days. I am looking at the eye weight again as my eye isn't closing as good as it was. NOw it drives me more nuts than before. Plus i get sick of the coffee girl always starring at me weird when i start talking or smiling. Makes me feel bad. Hang in there Nancy! 

[nancyann]

Hi guys, thanks for all the support....  I think I started feeling bad when a person at work was staring at me, & I mean STARING - she fell back onto the side of a chair - I ignored her (as I do all the people that stare while I'm at work), but I geuss it just got to me.   Also, I've been thinking lately that my chances at another relationship are next to nil.   What's funny is that normally this wouldn't even bother me (I've always been such a 'free spirit') but not having the option!! I told my best work buddy this today, & she just didn't get it, she meant well with the advice & support, but WE all know how people are.   Once I accept this fact I know I'll feel better.......

[stewie]

Nancy,
I recently had the experience of someone starring at me too. I was doing some promotional work and speaking to this couple when I noticed that the woman was only fixated on my mouth. It was hard to ignore her. I couldn't get over how rude I thought she was. Like I was the first person she'd ever seen with a disability!
Its very hard to muster up some confidence with these "facial issues" and then have someone pull you right back down. It can be very challenging! I guess we have to work not only on the confidence, but also on putting those types of people or situations right out of our minds.

Just wanted to tell you that I feel for you. . . .and continue to let your positive attitude take control! Like I said before, I can see your smile from across the miles! It shines through in all that you say.

Hugs,
Kathy

[TP]

NancyAnn, I totally understand. I am fortunate that I work out of my house on a computer and conference calls all day, no one to stare at me. However, when I venture out I find that I don't look at peoples face that much anymore when I am walking by them. The good news is folks remember me when I return to their establishment. Since my glasses have black tape over the left side people remember that and say - I remember you....Of course that means I must be on my best behavior! This situation has changed my basic personality. I have always been extremly outgoing but I find lately that I have no problem not talking and keeping a low profile.

As far as you finding a new relationship, from all the kind and encouraging notes you have shared, you seem like such a genuine, kind hearted, talented and beautiful lady, I am sure when the time is right you will find someone and they will understand and see your beauty!

[nancyann]

You guys are THE BEST !!!!  You have my heart, my back, & my head !!!!    The support is sooo much appreciated.   I can see I'm not alone with this,    THANK YOU ALL,    Nancy

[er]

Hello nancyann,
I just came across this thread.
I have talk to you in the past, about my facial look; I did not get to see my self in the mirror until the day I left the hospital; I was in shock to see my self. I looked like a chunk of clay that some one had just grabbed and pull the whole left side of my face down and inch. They took my gold piece out 7 months later.   It was about 8 months since surgery that my facial nerves started coming back, with a lot of firing in my brain (nerve connecting).
 The photo you see in the right hand corner was taken about 8 months ago. I am 2 years, 1 month, and 13 days since surgery. I was trying to smile for the camera but I was not able to. My son had installed the camera on my computer so I decided to put some make up on and see if it would make me feel better. In which it did. What you see the most is my right side of my face, it was my left side that was affected.
No, I cannot smile. I still have to drink out of a straw especially when I am tired, my mouth will just not form to the cup or glass. My eye will not blink, or cry. I've been to a few funerals and it bothers me for people to see one side of my face turn red and crying. I have single sided hearing. My ENT said it would be the last sense to come back; he gave me 40 % chance in it coming back after surgery. Every so often I still have to wear my patch like a pirate. Oh, and children in particular ask me why my mouth looks fun and right eye always blinks and the left doesn’t.

For my working it is a different story. I did go back to work, but I could only work for a couple of hours and when break or lunch break I would go to the lunchroom or my car and sleep, I would take an alarm to wake me up. When I am also tired my executive part of my brain quits functioning.
But I have found out if I work more than 3 to 5 hours with out a break I am wiped out. Totally!!! So I have decided to sign up for SSD with my doctors advise. And they say I might be receiving it, the neurologist they sent me too has advised it.
The long-term issue is what is bothering me right know.
There is so me others out there that have it bad and I feel silly in complaining.
eve
PS
I was er and I changed it to tator because my little 15 year old yorky had died about 3 weeks ago so I decided to call myself after him, Tator

[nancyann]

Hi Eve:  yes, I know you as er - I'm sorry about your yorky, he/she had a good long 15 years.....
I know what you mean about 'wiped out' - I get to work at 7:30am, & by 2 pm I'm ready to 'go sleepy!'      It does sound like you & I have exactly the same problems with the total facial paralysis.  Did your gold weight have to come out (like mine) because of a reaction ?   Are you going to have it replaced with platinum?  I don't like wearing a patch because I end up with a red line across my forehead from the elastic band (vanity wins again).   This past week I started taking Pilates to try & increase my energy, I've got to admit after only 2 classes I am feeling better, though I do still wipe out at work.    I had started another post re: facial paralysis survey: I was mostly curious as to whether people's nerve was cut or stretched, causing the paralysis.  I wish you all the best Eve, you've certainly been thru it.   
Always good thoughts my friend,  Nancy

[er]

Hello Nancyann

I have admired your conversations, you always seem so happy and up beat.
I really don't Know what my doctor did to me during surgery I am sending off for all my records because I have plans on moving to Needville Texas and I want to make sure I have everything in case this thing comes back. My last MRI in Feb. stated tumour gone but a deformity in its place. Doctor say it is scare tissue but scare tissue growes and that is what I am afraid of.
All my ENT stated that it took a little longer to take out because instead of falling out like alot of other patients, mines had to be easily removed so not to do damage the nerve. It took them 6 hours to remove the tumor, the doctor said the tumor ( and he showed me with his hands, by making a fist with one hand and wrapping his hand around his fist.) had grabbed my brain and they had a little problem in taking it off , the process was done very slowly so not to damage the nerves.
No on the gold. I wear it around my neck sometimes to remind me of the experience.

[amymeri]

I hate when people stare!

What I really, really hate is that my expression is a little cranky and I am usually a person with a happy expression and big smile.  That is gone forever now and its really, really hard to reconcile that I will never smile normally again.

[Pembo]

I just found this thread and as a 3 yr post op with facial paralysis I have run the gamut of emotions! Yes my face is recovering but I'm not me. I had my drivers license pic taken a few days before surgery and I often look at that smile! I'll be so sad when I have to get it retaken.

Things are still recovering. I remember the stares from strangers, I hated going out in the beginning. My self-esteem took such a big hit. Now that I'm somewhat normal, it is sad to think that people accept my weird face as normal. I'm told all the time that I look fine but these are from people who didn't really know me before.

It is a continual process accepting this new normal and knowing that I may still recover more makes it difficult as well. My best advice to those just starting on the facial paralysis road is hope and patience, two words I despise. You have to look back to see the progress and it is hard.

I am glad for this forum where I can find people who truly understand what I'm going through......