Author Topic: Things that help us cope.......Everyone help me out here.  (Read 15910 times)

Kaybo

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Re: Things that help us cope.......Everyone help me out here.
« Reply #15 on: October 25, 2008, 07:26:15 pm »
just helping you to be realistic...
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!

sgerrard

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Re: Things that help us cope.......Everyone help me out here.
« Reply #16 on: October 25, 2008, 10:09:39 pm »
Jan~
I hope that the "hope of Steve knitting you a hat" gives you many YEARS of comfort!!!!!!!   ;D
K

That can be arranged.  ;D

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.

leapyrtwins

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Re: Things that help us cope.......Everyone help me out here.
« Reply #17 on: October 26, 2008, 02:31:09 pm »
Promises, promises, Steve.

The weather is changing here in Chicago; my BAHA is getting cold  ;)  :D

Sorry for the hijack, Phyl  ::)

Jan
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

wendysig

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Re: Things that help us cope.......Everyone help me out here.
« Reply #18 on: October 29, 2008, 11:12:00 am »
My kids, who always make me laugh and feel loved\
My husband, who can be unreadable  but will always be here in the end
My family - brothers, sisters, nephews, nieces
My AN family, whom I could not get through this without
My friends
My cat, Oscar,  who gives me unconditional love and doesn't care if I don't hear him as long as I feed him and give him attention
Dr. Choe - an exceptional doctor and remarkable  person
Dr. Chen - Clearly,  also a wonderful doctor
Knowing this experience has made to stronger
Feeling the AN journey has made me a better person

Wendy


1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

konnie

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Re: Things that help us cope.......Everyone help me out here.
« Reply #19 on: November 04, 2008, 08:04:52 am »
cheri
that was well said.  My sister in-law and brother-in-law  have an autisic son after reading your paig i can understand why she is feeling the way she is...
I think she still dreams of Italy and can't move past that... her son is now 11 years old and i think he is doing great.
 he didn't even speak at age 5.  now you can't shut him up.  he is very intellagent, very likable, and very handsome...
i try to keep reminding her of all the positive but she still sometimes thinks of all the things he can't do.  not having a big wedding or having grandchildren seems to be the hardest.
if you do not mind can i print out your paige on raising a child with disabilities and show it to her... I think it would be very insperational.....
Konnie
AN 4.0cm @ time MRI (7-28-08)
Surgery 8-6-08 @Hinsdale,IL by
 Dr.Wiet/Dr. Kazan
Symtoms: sinus infection,numbness on leftside of face, hearing loss left ear & morning headaches

Debbi

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Re: Things that help us cope.......Everyone help me out here.
« Reply #20 on: November 04, 2008, 02:57:45 pm »
That's a wonderful bit of wisdom from Erma Bombeck.  A good friend of mine just found out that the darling baby girl they brought home from Russia two months ago has cerebral palsy - I am going to share this with her.  She is already making many new plans for her precious daughter, only now they include things like equine therapy and perhaps leg braces.  She is still, however, a beautiful and amazing little gift.  It's just in how you look at it, isn't it?

Debbi, pondering the many meanings of life...
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

konnie

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Re: Things that help us cope.......Everyone help me out here.
« Reply #21 on: November 04, 2008, 04:27:45 pm »
cheri
where have i've been Erma Bombeck i remember my mother reading her news colums , she gave my mother some comic relief raising 4 smalll children at home..
 she was a wonderful lady.  and gave great advise....
thank you for the reminder...
konnie
AN 4.0cm @ time MRI (7-28-08)
Surgery 8-6-08 @Hinsdale,IL by
 Dr.Wiet/Dr. Kazan
Symtoms: sinus infection,numbness on leftside of face, hearing loss left ear & morning headaches

msmaggie

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Re: Things that help us cope.......Everyone help me out here.
« Reply #22 on: November 08, 2008, 08:41:42 pm »


I just saw this thread and love the idea of the focus on the positive.  My glass is nearly always half-full, so I can usually find something that makes me happy.

In no particular order,

dark chocolate, preferably taken with red wine  :D
afternoon naps
a crisp, juicy apple
old moves, esp. with Cary Grant
good friends
a good book-maybe an English murder mystery
brisk fall weather
my family and times we are all together
Friday evenings and Sat. mornings
a purring cat on my lap
comfort food, like hot soups and stews
friends you can commiserate with...like on this forum!

Maggie
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

CROOKEDSMILE

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Re: Things that help us cope.......Everyone help me out here.
« Reply #23 on: November 09, 2008, 02:23:29 pm »


RIVERS CADE AND TANNER EVANS......MY TWO SONS.

sgerrard

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Re: Things that help us cope.......Everyone help me out here.
« Reply #24 on: November 09, 2008, 02:39:28 pm »
RIVERS CADE AND TANNER EVANS......MY TWO SONS.

Yup, that works. An inspiring pic.

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.

epifania74

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Re: Things that help us cope.......Everyone help me out here.
« Reply #25 on: November 16, 2008, 04:41:43 am »
The things that helped me through would be

My husband
My son
Family
Alot of prayer, yes alot of prayer.
Tumour size 6 cm.  Operated Feb 2007
Central permanent Tarsorrhaphy  x2 performed Feb 2007 and May 2007
Radiation March 2008
Right facial palsy and total loss of hearing in right ear.

martyc

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Re: Things that help us cope.......Everyone help me out here.
« Reply #26 on: November 27, 2008, 11:24:38 am »
So much to be thankful for this year, in spite of trials.

My relationship with Jesus
My husband
My three kids who want my face back, but love me just the same
My work that helps me to give back
chocolate chips - Trader Joe's milk chocolate :)
coffee
Good support system of Dr.'s
PBS shows that are relaxing...Rick Steves, English mysteries
Monster slippers
Great friends
Ebay
A trip to Disneyland this week!
A forum where other's understand!
Blessings to you all on this day of Thanksgiving.

Marty

tc

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Re: Things that help us cope.......Everyone help me out here.
« Reply #27 on: December 10, 2008, 02:45:40 pm »
I too am having a bad day, thank you all for you insights, it really helps.
Tam
TAM

JudyT

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Re: Things that help us cope.......Everyone help me out here.
« Reply #28 on: December 11, 2008, 12:21:45 pm »
This surely has been an uplifting of my spirits........to read all of these wonderful thoughts. I am a widow,68 years young, 4 years out from CK (Stanford/Dr. John Adler) and experiencing the same issues. "meltdown" goes with the territory I think. I am surrounded by a loving family and super friends and this incredible site. My issues/remedies are much the same as those mentioned here. Extreme balance issues,headaches, vision, loss of hearing,sinus like symptoms,numbness on left side of face/slight drooping and such. Balance/headches/tinnitis are my greatest hurdles. I was very fit and worked out 6 days a week before all of this.........Very active. All that has changed now but I have managed to insert other things to fill the gap. My grandchildren are my joy....after raising 3 boys...I now have 4 beautiful grandaughters.16...13....11...10 and a very handsome/loving granson 14. They love to cook(with Nanny's help) hear me play the piano....come to their various activities...11 year old is an accomplished equestrian(drassage) far beyond her years..16 Jamie loves to practice driving skills in the pasture as I look on.....they all have their special talents and I am soooooooo blessed and happy to have them so close to me, I write, paint, make topiaries (I can sit!) read....I bought a KINDLE on amazon and I can increase the font size for easy reading....meditaion/prayer....yoga (fabulous relaxer) treat myself to manicures,pedicures,waxing (those terrible lip and chin hairs)eyebrows.....makes me really feel good about me and I took a leap of faith and am having a new home built in a gated community....with a social director that is fabulous. My sons are refurbishing a golfcart so I can be very mobile in my new digs.  I try hard to be upbeat but do have those times when it overcomes me....it's sort of like the grieving process...a loss....never to return. When my husband of 38 years died in 1995....having never lived on my own I had to re-invent myself....it has been a journey of discovery.....this remiinds me I CAN do it and I will do it.....even through the "meltdown" times.....my faith and hope bring me through the rough waters as do people on this site. Thank you all for the honest sharing and support. Keep it up.....we all need each other. Judy in California

stoneaxe

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Re: Things that help us cope.......Everyone help me out here.
« Reply #29 on: January 02, 2009, 02:06:17 am »
On the days that are bad and my thoughts start to drift to why me I remember a day shortly after I was diagnosed when I was particularly depressed. I was sitting in the waiting room at the hospital getting ready to have the BB's implanted in my skull that are used for the targeting scans to direct the proton beam during surgery. A young boy perhaps 9 years old was wheeled into the room...obviously in a fight with childhood cancer...no eyebrows or hair....thin as a rail. We struck up a conversation. He sensed that I was feeling pretty down I guess because he started to try and cheer me up. Here I was in my mid 40's having lived a great life feeling sorry for myself while a 9 year old with a potentially terminal illness tried to console me. I vowed from that point on never to say "Why me?" The thought still occurs to me but I never dwell on it.

Since then I've built on that. I realize how lucky I am. I used to think how great it would be to win the lottery...I didn't realize I already had. I was born into the most prosperous nation the world has ever seen. A place where personal freedom is guaranteed. I live amongst a small percentage of people that relative to the majority of the people on the planet today are fabulously wealthy (I'm just a middle class hard working guy) and if you consider all the people that have lived before us it's astounding how we live. Kings of old could only dream of the riches we take for granted (Cars, TV, Music, Travel, Art, Ben &Jerry's....the list is endless). I had wonderful loving parents. A great family growing up. Some of the best friends a person could ask for. I found my soul mate at 17 and married her when we were 23. Together we've raised two extraordinary daughters that have brought us so much happiness. I've resurrected my love for the ocean BECAUSE of my AN. My new found passion for surfing leaves me feeling alive like nothing I've ever done before....Life is Good!

I've come to believe that without contrasts we can't truly appreciate life. Would you know what white is without black? or pleasure without pain?

Things that make me smile.

My wife
My daughters
My family
My friends
A warm day with glassy waves
Being on the water in a wild nor'easter
Any day on the water actually
A beautiful sunset
Woodworking
Landscaping
My dog
So many other things too....

When life hands you lemons...make lemonade!
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
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