Author Topic: Things that help us cope.......Everyone help me out here.  (Read 15909 times)

CROOKEDSMILE

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Things that help us cope.......Everyone help me out here.
« on: October 22, 2008, 10:14:16 am »
I woke up this morning thankful that I had this forum to come to when I got out of bed. It is now a morning, afternoon and nighttime ritual for me as I check in with my support group family. Being 37 and a somewhat attractive lady (before surgery).... with two small kids and dealing with the ramifications of facial paralysis caused by surgery has changed my life somewhat.....or should I say ALOT. We all have different ways of coping and I think that it is important for us to share with those going down the same path as us so that maybe we can help someone along the way. Here's a list of things that come to mind that has helped me the last 15 months. I would love to hear from others as I can also use all the help that I can get in continuing to cope with post op complications.
1. ANA Forum
2. Prayer
3. My kids and husband
4. Laughing......good medicine for the soul.
5. Facial Therapy
6. Heat packs to face and neck/massage
7. Playing the piano
8. Working in my garden
9. Reading inspirational books
10. Long walks
11. Quiet time with my family
12. Meditation
13. Last but not least.......Martini's (in moderation of course!)
« Last Edit: October 22, 2008, 10:16:53 am by CROOKEDSMILE »

lori67

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Re: Things that help us cope.......Everyone help me out here.
« Reply #1 on: October 22, 2008, 11:24:46 am »
I'd agree with all of them!  Except the piano thing - no one would be thankful if I played the piano.

I'd add:  Good friends, caring doctors, a good sense of humor and lots and lots of eye drops!

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.

Soundy

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Re: Things that help us cope.......Everyone help me out here.
« Reply #2 on: October 22, 2008, 06:09:08 pm »
In no particular order....

Reading

Friends

Kids

Husband

Hot showers

Hydrocodone

This Forum and two others I frequent

Scouts

School Volunteer Program that keeps me out of trouble and my mind working

Satellite TV between 2 and 4 in the morning ... there is always something on and for what ever
reason, watching TV puts me back to sleep about 8 times out of 10 ...

Ability to laugh some things off...

Did I mention hydrocodone?
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

MAlegant

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Re: Things that help us cope.......Everyone help me out here.
« Reply #3 on: October 22, 2008, 10:01:42 pm »
This forum, definitely.

My husband and son

My job and colleagues

My friends

My dogs

Music

Various drugs

Running

Perspective

And last but not least, a sense of humor

Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Jill Marie

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Re: Things that help us cope.......Everyone help me out here.
« Reply #4 on: October 23, 2008, 12:33:07 am »
At first this post will seem like it belongs somewhere else but I promise it will fit here when I'm done.  While at work today I experienced a "Bad Eye Day", makes me laugh when I think how some people whine about having a "Bad Hair Day".  Boy, would they have a rough time dealing with our issues.  Anyway, it was one of those days where my eye was dry & or irritated or the ointment was globbing onto my eye lashes and running down my cheek.  In otherwords my mind was always on my eye instead of my work.  Then a customer asked if I got poked in the eye or if my eye got scratched as it looked like it was watering.  As I worked on their invoice I told them my eye doesn't water at all so I use ointment.  He asked if my tear duct was plugged and I said it was something like that.  Sometimes when I say more the people asking the questions clam up and seem uncomfortable so I keep my asnwers short.  Today I decided to take a stab at giving the customer more info. and seeing how it turned out as perhaps it is me that's uncomfortable with the subject.  After I paid them I told them that I had surgery for a tumor in 1992 and that lead to my eye not tearing.  They asked if I was ok, if the tumor was benign & how I found out about the tumor.  I told them I'm fine, and that the tumor was benign & that I lost most of my hearing and went to find out why.  They asked if I got my hearing back, I said no, but I got to keep the use of most of my face in trade.  They smiled and said see you tomorrow! 

After lunch my throat started bothering me and my head felt a bit fuzzy so I feared I was getting a cold or the flu, got a flu shot yesterday but perhaps it was to late.  When I got home I decided to take a nap as I still didn't feel to well and I was tired of dealing with the eye.  When I got up my husband was home and he said the World Series was about to begin so he would be spending the evening watching that.  I had wanted to take the dogs for a walk as it was a beautiful Fall day, which was the other reason I took the nap, hoped I would feel up to it then.  Somehow the dogs new I wanted to go for a walk as they kept prancing and dancing all around my husband so he knew they were ready for a walk, he told them NO!  That's when I got the energy to head on out.  I grabbed my walkman & the dogs and a way we went. 

We headed to the neighbors house that always has an excellent Halloween display, it's so good that the dogs growled at some of the creatures in the yard.  One of the tomb stones said, Elvis Presley, live with it!  Then we headed to were there doing new road construction, no cars allowed so we were free to go anywhere we wanted.  The dogs stopped to smell the new fall leaves on the ground as I looked around to see all the beautiful trees decked out in there golden colors.  We walked through a new housing development and I couldn't help but notice how all the houses looked pretty much the same, as we approached our home I was able to appreciate that ours was different as I am, and that's ok.  My husband usually walks with us but tonight I'm glad he didn't as instead of talking I was busy looking at the trees, paying attention to what the dogs wanted to do and where they wanted to go and most importantly doing what I WANTED to do when I wanted to do it.  Enjoying the simple things!

The baseball game was still on when we got home so I decided to check our email, I was surprised to find an email from our youngest son who is in the Army and stationed in Germany.  The subject was, Thanks Mom, that made my day right there.  Then I read the email that said he had gotten one of the packages I sent him last week.  He's headed for Morroco, Africa Monday and I had mailed him 2 boxes of food so that he would have something good to eat while he's there, the food & air and living conditions always make him sick when he's there.   He found out just after I mailed the packages that he would be leaving early and we were afraid they wouldn't get there on time so it was really good to hear he already got one of them. 

This morning I told myself that I was going to post  a "Venting" post when I got home, then my day got a lot better so I decided to make a "Bad Eye Day turns good Day post, then I saw this post and decided I would add to the things that help us cope list. 

1. Husband that still kisses me good morning & goodnight even though my kisser doesn't work like it use to
2. Sons that treat Mom like they always have and need her help so she focuses on them and not her problems
3. Boss that gave me my first job 13 years ago, despite my eye & hearing issues
4. Love to garden, will carve 5 to 10 pumpkins this weekend
5. Long walks to the store with my husband and 2 dogs
6. Long walks to the fast food restaurants so I don't have to fix dinner
7. Yes, this forum, where I can share my thoughts and know the reader understands what I'm saying & feeling
8. Throw a pity party now and then
9. Post on the cookie recipe spot, it's nice to have places to share the good things in life
10. Listen to music from the 70's and listen to my Mom & Dad's albums
11. People that are ok with talking about Tumors and the problems that go with them
« Last Edit: October 23, 2008, 12:45:53 am by Jill Marie »
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Tumbleweed

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Re: Things that help us cope.......Everyone help me out here.
« Reply #5 on: October 23, 2008, 02:14:29 am »
In no particular order:

1. Music
2. Exercise -- especially outdoors
3. Meditation
4. My wife and mom
5. A new puppy (or any pet, existing or new)
6. The solitude and beauty of wilderness
7. Rewarding work
8. Helping others
9. Healthy diet
10. Lots of sleep
11. The support of friends
12. This forum
13. The accessibility and caring of "my" medical team at Stanford
14. Always having the next vacation or other special outing planned (always having something to look forward to; when one trip is done, start planning the next one immediately!)

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

saralynn143

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Re: Things that help us cope.......Everyone help me out here.
« Reply #6 on: October 23, 2008, 06:52:28 am »
Keeping really busy helps a lot. My father-in-law passed away two weeks ago and I am helping my mother-in-law deal with many details. (I am a stay-at-home mom am available most often.) I am also trying to relocate my parents to the community I live in from their home of 35 years two hours away. My dad is having a rough time recovering from heart surgery which is complicating matters.

My kids still at home are in seventh and fifth grades, with many activities. They have been so great. My face has never once bothered or embarrassed them. My husband has been great too. He even said I still have a beautiful smile (bless his fibbing heart).

Time is also a key element. At first I was very preoccupied with my paralysis and how it was going to change my life. Nearly five months down the road I realize that life is still going on. Not that I want to look like this forever, but it is what it is.

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: Things that help us cope.......Everyone help me out here.
« Reply #7 on: October 23, 2008, 07:48:45 am »
Great thread!  I feel like I have so much to be thankful for, not even sure where to start...

Wonderful husband who still tells me I'm beautiful (even with my crazy looking smile)
Loving and supportive parents
Loving and supportive friends
Terrific doctors
The cats and the dog, who love me no matter what I look like
Beautiful, crisp fall days
Eating well
Chocolate (dark, of course!)
Being able to laugh at myself
Being comfortable "in my own skin"
and last but not least....
ALL OF YOU GUYS!!

Debbi
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

Kaybo

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Re: Things that help us cope.......Everyone help me out here.
« Reply #8 on: October 23, 2008, 07:59:15 am »
GREAT topic, Angie!  I first saw it yesterday but wanted to post when I had more time to think about it!

1.  FAITH
2.  Dave
3.  my beautiful Curly Girlies
4.  Extended family (they are all so wonderful and supportive)
5.  Incredible Friends!
6.  this forum
7.  LAUGHTER
8.  flowers!!
9.  exercise (really the ability to do anything I want - if I want it bad enough!)

 ;D    ;D    ;D    ;D    ;D    ;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!

CROOKEDSMILE

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Re: Things that help us cope.......Everyone help me out here.
« Reply #9 on: October 23, 2008, 09:00:20 am »
Oh Forgot to mention my crazy pills.......Lexapro.(antidepressant)
Angie

MaryBKAriz

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Re: Things that help us cope.......Everyone help me out here.
« Reply #10 on: October 25, 2008, 09:34:21 am »
I love all your lists. I ditto them.

There are sooooo many things to help us cope and the lists you all made - made me appreciate that. We can lose sight of the blessings and when I read the lists that is the word that comes to mind. I will add 2 things - I love also beautiful sunsets and calm peaceful places. MY GREATEST help is my husband who is not only a ROCK but patient and loving. He reminds me "we are going through this together", so I never feel alone.

Mary 8)
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

LisaP

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Re: Things that help us cope.......Everyone help me out here.
« Reply #11 on: October 25, 2008, 12:34:13 pm »
I've just rejoined the forum after experiencing the death of my brother on Oct 16h, whom I was very close to.....what got me through this year with his illness and my dx was

1. my husband
2.  my children
3. my family
4. my faith
5. my friends
6. my job
7. and this forum

thanks
all

LisaP
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

leapyrtwins

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Re: Things that help us cope.......Everyone help me out here.
« Reply #12 on: October 25, 2008, 07:09:04 pm »
Humor  ;D
 
Friends, family, colleagues, fellow forumites  :)

My docs - two exceptional men  8)

Faith

Hope

Trust

Music

The prospect of meeting other ANers @ the symposium

The hope that someday Steve WILL knit me that green hat  ;)

Jan

« Last Edit: October 25, 2008, 07:10:50 pm by leapyrtwins »
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Kaybo

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Re: Things that help us cope.......Everyone help me out here.
« Reply #13 on: October 25, 2008, 07:19:31 pm »
Jan~
I hope that the "hope of Steve knitting you a hat" gives you many YEARS of comfort!!!!!!!   ;D

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!

leapyrtwins

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Re: Things that help us cope.......Everyone help me out here.
« Reply #14 on: October 25, 2008, 07:24:31 pm »
Funny, Kaybo, funny  :D
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways