Author Topic: Feeling Sad  (Read 6664 times)

martyc

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Feeling Sad
« on: August 26, 2008, 05:28:09 pm »
Hi,
Just had to write to people who understand.  Today was my daughter's first day in Kindergarten and of course I went to see her off and meet with other parents.  I'm so glad I was able to see her in her first line in the play yard and hear her first school bell :)  It's hard to be in new social situations where people don't know me and when I talk to them or smile, they look at me funny.  I trust my paralysis will get better in time, as has happened for many of  you...so there is hope.  Just feeling the wave of emotion that comes with this recovery.  I go through times where I have so little energy and so much to do that it just makes me cry.  Today is that kind of day.  Tomorrow will be better I'm sure, but this is where I'm at today.  I really forget what I look like most of the time, but I was just sent some pictures of my family on our vacation and it was a shock.  This journey is long.  I have hope and am thankful to have the tumor out of my head.  I'm just tired. 
Thanks for letting me vent.  It helps :)
Marty

Marty

Dfcman

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Re: Feeling Sad
« Reply #1 on: August 26, 2008, 05:42:35 pm »
i'm thinking of getting a facelift because I still hate the way I loook..  When I look in the mirror its good; far away is a different story though.  its all very frustrating.
Son of Chrissmom
23 Years Old
AIM is the best way to contact me
5.3 x 4 cm tumor removed by surgery(2 times)
Dr. Arriaga and Dr. Baghai Pittsburgh Allegheny Hospital
Post Op as of 7/20/06

mimoore

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Re: Feeling Sad
« Reply #2 on: August 26, 2008, 07:02:24 pm »
Oh Marty I do understand. In new social situation I almost always felt compelled to say "Oh I only look like this because I had brain surgery" As I got stronger I decided to stop and people can think what they want.
I am hoping get back to work (I teach kindergarten). I have been so stressed because so much can be said with a smile or a gentle look and with this paralysed face I cannot do that. I was thinking that I feel so good and want to teach next week but this face and then it came to me. I have decided to go back and one of the first things I will do with my little people is this: I will talk about how my face is asleep and I am hoping it will wake up soon. Although I cannot smile I am smiling on the inside and this is how you can tell. I will ask everyone to close their eyes and listen to my voice... when I use my happy voice you can tell I am smiling (show me your smile). I am really big on building self esteem so through my words they will know more of how I feel. I taught there last year so I know lots of children at the school already know me. I know it is hard but think of what we are teaching children (and adults) be strong, be yourself and that there is more to someone than just their looks. There is a great person inside.
Michelle  ;D
Smiling a giant smile inside!!!
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.

sgerrard

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Re: Feeling Sad
« Reply #3 on: August 26, 2008, 07:59:31 pm »
Michelle,

I think you will find that kids handle it much better than adults do. They will ask you if it hurts; once you assure them it doesn't, they will forget about it and get on with the crayon drawings. I think kids are much more agile at adapting to changes around them.

You're going to do great, have a good year. :)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Kaybo

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Re: Feeling Sad
« Reply #4 on: August 26, 2008, 08:15:57 pm »
Michelle~
I was actually in the middle of teaching 1st grade when I had surgery.  I think the 1st time I went back for a visit unannounced, it really took them by surprise, but by the time I went the next week for the Valentine Party (they were expecting me) and then when I returned for the remainder of the year - I couldn't have asked for better kids.  I have some GREAT stories of things they said & did!  Kids are the best!  I have always said that the kiddos in my class will come out learning a lot more than the 3 r's - hopefully they will come out with a better understanding of PEOPLE (& their differences)!!

Marty~
I know exactly how you felt at school.  I have 3 girlies and we moved schools so the 2nd one went to a different Kindergarten than the first - I know how it is to stand around with new parents/kids/teachers at pick-up!  My last one should have started Kindrgarten Monday, but she has been sick (so sad for her!) - hopefully she will get to go tomorrow and then I will have the day that I have been dreading with no one home but me...We'll make it thru - we can be here for each other!

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!

lori67

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Re: Feeling Sad
« Reply #5 on: August 26, 2008, 09:44:39 pm »
Marty -

I know EXACTLY how you feel.  My daughter started Kindergarten this year too and there is no one from her preschool at this school.  At least the people in the preschool knew me before the surgery and they all knew about the surgery, so I didn't feel as self-conscious around them.  Now that there are all new parents, I feel like I'm just being stared at.  I am sure a lot of that is all in my head and they're not really staring, but you know...

I agree with Steve (I do that alot, don't I?) though - kids don't seem to make a big deal out of these things.  After I had my surgery, the kids in my daughter's class looked a little concerned at first, but once they realized I was okay and still the same person, they were fine.  And I don't notice the new kids in her class staring at me.  They just seem to be more accepting of differences and of course, not as judgemental as we adults can be.  I guess it's true that all we really needed to know, we learned in Kindergarten.

I hope tomorrow is a better day!
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.

martyc

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Re: Feeling Sad
« Reply #6 on: August 27, 2008, 10:04:53 am »
Hi all,
Thanks so much for your encouragement.  I like the explanation of my face being asleep.  It's really not kids that I contend with, but being more social with adults as I would normally...thus it's ME I contend with :)  Today is a new day though and it's a better one.  My husband reminded me that I'm entitled to a low day now an again.  Most of my days are hopeful and confident. 
Blessings to you all as we plow through our recoveries at our own paces!  It is nice to have a place to be honest and thoroughly understood. 
Marty
Marty

mimoore

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Re: Feeling Sad
« Reply #7 on: August 27, 2008, 10:37:05 am »
Thanks all, Your kind words are wonderful.
Marty sounds like you have a great husband. When I was really down I keep telling myself tomorrow is a new day! Lots of people here told me that in time all looks brighter and it does.
Have a sunny day!
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.

calimama

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Re: Feeling Sad
« Reply #8 on: August 27, 2008, 07:19:25 pm »
You are not alone, indeed!

I am used to being quite social, even "popular" (can i still say that at 39?), but now i don't feel quite like myself and it's tough because people who don't know me, don't know "me"!

I think kids are great cuz they just come right out and say "what happened to your eye?" (i am wearing a patch because of double vision, still, ug). The little kids are facinated with the eye patch. I am a sensation at IKEA and the park. Adults won't say anything, for fear of being rude, intrusive. But i also feel like just coming out and telling people why i look like this. No one asks, i offer it sometimes, if i think i can get away with it (so far my experiences have mostly been with moms, dads, kids at the park since i am off work). Some people are interested, sympathetic. For others it seems to go in one ear out the other. Whatever.

I guess in the end, the people who know me, love me and are supportive of what i have been through. And my hubbie and little daughter are still on my team and love me the way i am so i feel lucky for that.

I am heading back to work next week, this is gonna be tough, interesting.

Trish
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

yardtick

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Re: Feeling Sad
« Reply #9 on: August 27, 2008, 10:19:26 pm »
Good luck Trish on your return to work.  Please do not expect to go into work and pick up where you left off.  I found I tried quickly and had trouble remembering the stupidest things.  I would be so hard on myself.  I hope your co-workers are understanding and if you need a break, take it.  You have a little one to go home to and your husband, so your day doesn't end at 5:00pm.

Wishing you all the best,
Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Boppie

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Re: Feeling Sad
« Reply #10 on: August 27, 2008, 10:58:47 pm »
Marty, Just jump right in there and be the best room mother, who brings the best surprises, and helps the kids show their appreciation for the teacher at Christmas.  Those moms and kids will remember your best parts forever!  Take the offensive and accentuate the positives for everybody.  I am amazed by the things my adult children remember about their kindergarten year.

CROOKEDSMILE

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Re: Feeling Sad
« Reply #11 on: August 28, 2008, 08:49:21 am »
Marty,
My son went to Kindergarten 1 month after my surgery. I had a feeding tube down my nose into my stomach for a month and a patch on my eye and scale 6/6 Brackman Facial Paralysis. My husband and I would take my son; Rivers to school and I would make my husband walk him up to the school while I sat in the car and watched from afar. I remember crying so hard not only because my baby had started school but because I felt SOOOOOOOOO guilty that all the other little kids had their mommy's by their side and Rivers didn't because I was such a chicken. It is now 13 months after surgery and I am taking Rivers to school every day and being more involved. I feel like I missed his entire Kindergarten year and I can't ever get that back. Sooooooooo.........YOU should be so proud of yourself for being BIGGER and STRONGER than this facial paralysis thing. Your child will remember that YOU were there no matter what and trust me I will NEVER miss another moment of my child's life EVER again.
God Bless!
Angie

saralynn143

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Re: Feeling Sad
« Reply #12 on: August 28, 2008, 09:26:55 am »
I got a jolt yesterday in the after-school pickup line. Another mom tapped on my car window and handed me a brochure from her chiropractor who claims to be able to cure Bell's Palsy with cranial manipulation (healing the body so it can heal itself). She said I had been on her mind since she saw me at Open House. Many of the school parents knew about my surgery and the subsequent paralysis, but her daughter doesn't run with mine so she hadn't heard. Anyway, I was a little taken aback, although I'm sure she meant well.

My kids (5th and 7th graders, plus a college student) and their friends have been great, very accepting. And honestly, I think we are our own worst critics.

Give yourself points for being there. Your presence, not how you looked, is what your daughter will remember. Hopefully, one of these days all our faces will be relatively back to normal and we won't even remember all of this anxiety.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Debbi

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Re: Feeling Sad
« Reply #13 on: August 28, 2008, 11:34:46 am »
Well, as a member of the "pirate smile club", I have to jump in.  First, for everyone here who shared their fears, anxieties and successes - thank you.  Like you, I struggle with this every day and some days are harder than others.  I will say, that nearly four months into this, I have more easy days than hard ones.

The worst, for me, is seeing pictures of myself.  It is as if the camera captures the very worst possible view of my face each and every time.  My solution to that, of course, is to insist on more pictures.  I always feell like if I can face my fear head-on, it will diminish. 

Like many of you have said, I also find myself wanting to explain to people why my face looks like this - some care, some don't, and some really don't want to hear the story.  I keep reminding myself that I am in charge of how I feel about this all - hard advice to adhere to somtimes. 

So, I allow myself to feel sorry for myself sometimes and then I kick myself in the butt and try to count all my blessings.  My "glass" has always been half full, even in the worst of times, and it still it ... most days.

Debbi, still smiling even if it looks weird
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

martyc

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Re: Feeling Sad
« Reply #14 on: August 28, 2008, 02:04:44 pm »
I so relate with the pictures being the harshest view of myself.  I have to take pictures monthly for my doc as he is out of town, so I will push ahead with that and see if I can find a better view :)  I thought of putting one of my kids in front of my "sleepy side" and be kind of a scar face view :)  
Oh, today is a better day and I have my eyelid weight on which helps me to be able to use drops and not ointment all day.  I am still experimenting with the patch.  I feel for those of you with double vision, as you lose your depth perception with the patch.  Just another hurdle to conquer.  
I have good news on my ear pain...it's gone!  My dr. was afraid it would require surgery, but is more hopeful as the troubling cells that were there are now gone.  I am so thankful for that.  God is good!
I'm also thankful for all of you that I can relate to on my good days and my bad.  I think it's important to express both sides.
Off to pick up my daughter.  Thanks for the encouragement that I am at least showing up.  I don't want to miss out either.
Hope you can pace yourself on your first week back Trish.  My first day back was mostly to organize my office and see co-workers for the first time.  Hope  you get lots of good rest this week too.
Blessings to my new friends,
Marty
Marty