Author Topic: well-meaning persons  (Read 10900 times)

Kaybo

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Re: well-meaning persons
« Reply #15 on: October 23, 2008, 08:43:17 pm »
Michelle~
All I can say is that I can EMPATHIZE 100%...but that doesn't make it any easier.   :'(  Know that we understand and are here for you - good times and bad!  When you are flat on your back - the only way to look is UP!!

Hoping & praying that tomorrow is better,
K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

mimoore

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Re: well-meaning persons
« Reply #16 on: October 24, 2008, 08:28:53 am »
Thanks David and Kay,
It does mean a lot that you understand. My husband says "I hardly even notice anymore" he loves me and that is all great but it is hard when my face doesn't show who I really am. Thanks for 'getting it'. Yes I am getting movement slightly around my mouth. I had an EMG and apparently the movement around my mouth is from the other side trying to compensate and the nerves from the good side have grown over to the AN side. I really didn't even know that could happen. The EMG also showed that there is slightly regeneration around the eye. Don't get me wrong I am very happy but cautiously optimistic...no one will predict how much recovery will occur.
We are having friends over tonight for dinner who haven't seen me yet ...digging deep to find the brave face.
Thanks again and again and again for always being there for me, this has not been an easy journey.
Michelle  :)
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

lori67

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Re: well-meaning persons
« Reply #17 on: October 24, 2008, 09:56:53 am »
Michelle,

Your friends won't feel any differently about you now than they did before surgery.  I'm sure they will be thrilled to see that you came through this okay and that's all that should matter.

I have to admit, I have to remind myself of that constantly, but I think this facial CRAP bothers me more than it bothers anyone else.  I have been fortunate in that I haven't had any friends stray since my surgery - they all stick by me no matter what my face looks like - and since they don't seem to be too embarrassed to be seen in public with me, I try to remind myself I shouldn't be embarrassed.  I guess it's probably easier for me since I'm not working right now.  I'm sure I'd have a lot more bad days if I had to be around people I don't know all day. I guess I'll cross that bridge when I come to it.

I wonder too sometimes if my 2 year old knows when I'm smiling at her and trying to praise her for something well done - she seems to know even without a whole smile on my face.  I'm sure the little girl from Korea can tell the same thing from you.

Enjoy your dinner, enjoy your friends, and remember that grown ups are usually scary to 5 year olds - even if their face works!  I wouldn't take it too personally.  Just think of the lesson she learned from you - just because someone might look different, there's no reason to be afraid.

If you figure out how to pull off that hibernation thing, let me know.  I could use a good long nap! 

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

mimoore

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Re: well-meaning persons
« Reply #18 on: October 24, 2008, 10:23:01 am »
Thanks Lori,
Hey how are you feeling? I realize it may be sometime before you get movement but are you recovering well from your surgery? I have been thinking of you. Hope your having a good day. Today is better for me - thanks for giving me the wake up call gang. No pity party today! I need to tidy my house, go find a halloween costume for my daughter, go grocery shopping, get ready for my dinner.... life goes on. Thanks for making me feel better - remember I am here for you as well.  ;D ;D ;D ;D
Michelle
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

lori67

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Re: well-meaning persons
« Reply #19 on: October 24, 2008, 10:40:50 am »
Feeling good!   ;D  My incision is looking better already - still ugly, but not as bad as it was.  I think it will fade away pretty nicely over time.

My doctor was actually surprised to hear that I have some tears on my AN side already.  I only need the daytime drops once or twice a day now.  There goes the value of stocks in the eye drop company!  I keep looking for signs that something else is going to start working on that side - although I know it's way too early, but you never know.

Speaking of Halloween, I told my husband if I had a scar on the other side of my neck, I could stick a few bolts on me and go as Frankenstein.  He decided that maybe "Stroke-enstein" would be better - since I only had one scar and only half of my face is droopy.  Oh, that man just cracks me up!   ::)

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

CROOKEDSMILE

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Re: well-meaning persons
« Reply #20 on: October 24, 2008, 10:59:43 am »
Michelle,
Yep. I know how you feel girl. I just want my old life back. BUT I wasn't given that as an option so here I sit and must decide to get out and enjoy the day. I have to self motivate myself on a daily basis. I've never talked to myself so much in all of my life. Makes me feel little crazy. Pamper yourself any way you can. Read a good book. Go for a long walk and get some fresh air. Just know that we are here for you and you are not in this thing all alone. I know how bad your eye hurts, I know how bad you want to smile, I know all of that. I feel your pain. Know that you are loved by so many people and YOU ARE STRONGER than this facial thing that has tried its hardest to take us down.
One day at a time sweet Jesus (my grandmother's words)
Angie

Kaybo

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Re: well-meaning persons
« Reply #21 on: October 24, 2008, 11:07:46 am »
Michelle~
Two things:
1) It doesn't matter what your face looks like, kids can "see" you love & warmth thru the TONE of your voice and the use of your other body language

AND

2) Think how much better off the kids are going to be that have come in contact with you - they may not realize it now, but you are leaving a HUGE imprint in their little minds and one day it'll hit them (they may not even realize why) that even people that may look or act a little different are still wonderful people on the inside!!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

mimoore

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Re: well-meaning persons
« Reply #22 on: October 24, 2008, 12:09:24 pm »
You guys are the best - thanks for lifting my spirits. I know you are right, just need to remind myself of that on down days. Oh and Angie I hear ya (with one ear of course) I need to self talk everyday. I feel like the little train who could... I think I can, I think I can.... think of how much stronger we have become.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

CROOKEDSMILE

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Re: well-meaning persons
« Reply #23 on: October 25, 2008, 01:35:32 pm »
(sigh)
My mother-in-law and grandmother came to visit yesterday and they haven't seen me in over 4 months. Neither one said that I looked better. I really thought that I was making progress by looking at pics but maybe not. It certainly helps to have someone honestly give you feedback...good or bad. They just basically ignored it and asked how I was feeling. Oh. She did say....you can't tell anything is wrong unless you smile and some people smile crooked anyway. So out of fairness to her she did say something. I wonder why those around us don't see the improvements when we know there has been progress. I usually am not too bothered by this but I actually retreated secretly to my room and sobbed like a baby. I know Angie---toughen up. My MIL is having plastic surgery (cosmetic) on her eyelids next week to make her look younger and I guess she's consumed by that. Who knows.
Angie
Maybe we should post pics of ourselves on a monthly basis and then we can see the differences for ourselves! Anyone want to start a thread like that? (i hate cameras)

Kate B

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Re: well-meaning persons
« Reply #24 on: October 25, 2008, 01:39:26 pm »
This rule has served me well and probably saved me some embarrassment and other folks some hurt over the years.   If a person looks well after an illness, I just say I'm happy to see them.  If they don't look so good, I say the same thing, and mean it.   I wish more folks would resist the urge to tell someone who isn't looking too well, how 'good' they look.  It's gratutious and mostly unnecessary because we usually know it's false.  Sometimes, the less said, the better.

Jim   

Well said...
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Kaybo

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Re: well-meaning persons
« Reply #25 on: October 25, 2008, 01:40:33 pm »
Angie~
I think you hit the nail on the head when you said that she was just more concerned about HER than you!!  From what you've said, I don't get the warm/fuzzy vibe about her anyway!!  I know it hurts - I promise, I do, but YOU know you are doing better AND the most important thing, no matter what you look like, you have been there more for your family!!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

CROOKEDSMILE

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Re: well-meaning persons
« Reply #26 on: October 25, 2008, 05:28:16 pm »
welp.....in the midst of having a dinner party with friends that have not seen me in 15 months and they had a lot to say. Nice things, Thank you Jesus. But then again the last time they saw me I looked worse than the Bride of Frankenstein with feeding tube and 6/6 grade facial paralysis. Nonetheless......Nice to be surrounded around good friends and laughter and few compliments to boot.
Thanks guys for the kind words. Kay thanks for the phone call. It's always a pleasure.
Angie

CROOKEDSMILE

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Re: well-meaning persons
« Reply #27 on: October 26, 2008, 08:47:06 am »
You're a sweetie Cheri. Glad you're doing well!
Angie

lifeisgood

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Re: well-meaning persons
« Reply #28 on: December 05, 2008, 09:38:29 pm »
I love all of your comments.
Michelle, your picture is beautiful.  I am sooooo critical of my "new" smile which I've been carrying around with me for almost 5 years now.
(Hard to believe!!)  I used to have a huge smile and I am so expressive.  This week, my 5 1/2 year old who NEVEr comments on my face started
pulling on my smile and saying "smile"  He proceeded to give me smiling lessons. Since he was only 8 month old when I had the surgery, this is the only face he knows. He knows that the hearing is goine on my right side because I had "a bump removed from my head" but that's all we've talked about.
I am sure he hears everything I say to my husband regarding my face so he probably already knows that it is different.

I can expose all of my top teeth on each side which I couldn't do after surgery or for several months.  I can't pull down the right corner of my mouth.

I always wonder what people think of my face when they meet me or what old friends think when they see me. I am probably placing too much emphasis on that part.
But, it 's hard not to.

Anyway, thanks for your support.
Much appreciated.
:)
Mary
3.4cm AN surgically removed 3/04
by Dr. Wiet and Kazan at Hinsdale Hospital in Illinois.
Translab approach

mimoore

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Re: well-meaning persons
« Reply #29 on: December 05, 2008, 11:10:13 pm »
Thanks Mary - although that is the pre-surgery me... I long for that smile and my blink back... soon enough.
Michelle
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.