Author Topic: I'm Normal - a New Normal  (Read 3206 times)

Suu

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I'm Normal - a New Normal
« on: September 28, 2012, 03:32:31 am »
Hello my wonderful second family
I know that I disappeared and I'm sorry to have been gone for so long but I had to go on a trip of monumental proportions on my own so I could come here and tell you all about it.

I am now the new me.   ;D I was the new me over 2 years ago but couldn't get it through my thick head that what I am is who I am. There were a lot of things I had to get my head around so grab yourself a cuppa and see if any of you can relate........  :P

I used to ...... be a doer.
(I'm unable to fulfifll that role so I am a doer when I can be.)
I used to ...... drive.
(I don't now and I handed in my license.)
I used to ...... look different and my ears used to be the same length from my chin. 
(They aren't now so I've given up wearing earrings.)
I used to ...... hear. 
(I've lost the left ear and hearing going in my right ear now. I'm used to it and others around me need to get used to it or I won't hear them.)
I used to ...... babysit. 
(Not until the youngest is walking now. The older ones can stay if they like as long as they know how to make their gran a cuppa and (my oldest 15yo grandson is 6'3") they don't want picking up for a cuddle.  ;D ;D ;D )
I used to ...... drink from a cup or glass.
(Now everything is through a straw, whether it's a cuppa or a cold drink, out or at home, because dribbling down one's front isn't ladylike.)
I used to ...... have a shower (don't try to picture it  :P) with water running over my face.
(I have a handheld shower and put a hand over my eye to close it.)
I used to ...... not be dizzy
(The dizziness is there and I'm aware of things that aggravate it)
I used to ...... not have sounds inside my deaf side.
(I have a cacophony or the most spectacular sounds that should be put to music by Green Day  :D )
I used to ...... be able to concentrate for more than an hour.
(Concentrate on something? I've lost the art completely!  :) )

Ok that's enough.  Time for me to come clean.
I'm normal!

I had a lightglobe moment about a week or so ago and realized that this is as good as it gets and I'd better get used to the new me because the old me went on holidays and never came back.
My sense of mischief and humour (Aussies put a 'u' in everything from colour to neighbour LOL) are well and truly in tact and I use it daily.  Usually it's from a prone postition but I can be a funny bugger when it comes to my own predicament.

For anyone that's had a lot of surgeries, had a big AN removed, or simply has had a heck of a time of it post surgery, I have some advice.....
accept it, do what you can with what you have and tell the people around you what you're going through.

Now I'm going to have a good look at what I've missed out on since being on sabbatical and see if I can jump in and lend a shoulder.

4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

Kaybo

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Re: I'm Normal - a New Normal
« Reply #1 on: September 28, 2012, 05:29:25 am »
Suu-
I agree 110%...it's all how you look at things & the attitude you CHOOSE to have!

;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!

MDemisay

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Re: I'm Normal - a New Normal
« Reply #2 on: September 28, 2012, 11:23:41 am »
Dear Suu and Kaybo,

I must say I like both of your attitudes! As far as I'm concerned your attitude is reflective of a glass overflowing with gratitude and open to sharing what good humour and positive feeling you do have! God has blessed you both as he has all of us that are willing to share our stories here. Rather than complaining about how your glass is hardly filled with what you have lost.

Welcome back Suu! G'day to have you back in the saddle!

Kaybo, I've been so inspired by you! God is in your good works in sharing that clip with us, thank you.

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

PamJ

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Re: I'm Normal - a New Normal
« Reply #3 on: September 28, 2012, 11:49:46 am »
Hi Suu I could relate to everything on your list especially the drinking through a straw.  On Wednesday I had a Ponto Pro bone anchored hearing aid fitted and it is beginning to put my life back together and I can now hear on my deaf side.  Life is good again.
March 2011 - Acoustic Neuroma translab surgery
July    2011 - Tarsorrhaphy surgery
June   2012 - BAHA abutment surgery
July    2012 - Tarsorrhapy reversed
Sept   2012 - BAHA (Pronto Pro) fitted
Sept   2013 - Diplopia Surgery
April   2014 - Platinum chain surgery

Jim Scott

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  • 1943-2020 Please keep Jim's family in your hearts
Re: I'm Normal - a New Normal
« Reply #4 on: September 28, 2012, 01:03:43 pm »
Hi, Suu ~

Thanks for your message of acceptance of your 'new normal' and the forthright attitude you've been able to muster to deal with your AN-related deficits.  My father used to call this 'rolling with the punches' (he'd been an amateur boxer in his youth).  Whatever we choose to call it, acceptance of what is and then living life as best we can, making whatever adjustments necessary, is definitely the way to go.  Your message has been well-received and much appreciated.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

LakeErie

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Re: I'm Normal - a New Normal
« Reply #5 on: September 28, 2012, 06:25:34 pm »
Hey, Suu, am glad you are back. I was hoping you were all right. I didn't see anything in your post about the vocal cord issue you had after the surgeon failed to protect ( his words I believe ) the vagus nerve. We had some of the same voice problems along with Tod. I hope you are improving in that regard. We discussed before the lengthy series of operations and treatments you'd undergone, so I am glad to read your post today. Thanks.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

Suu

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Re: I'm Normal - a New Normal
« Reply #6 on: September 29, 2012, 03:51:16 am »
Thankyou all for the welcome back home.  :D

LakeErie - my voice is still husky and I lose it when I've been laughing or talking a lot so I lose it frequently LOL I'm on a permanent minced diet that is now second-nature. I've had to give up cake and sweets but have also lost 10kg and keeping it off so that's a positive.

Jim - we use that term over here too. I'm rolling into walls though LOL

PamJ - I've never heard of a Ponto Pro bone anchored hearing aid but will look it up so I can understand it.  I was offered the option of a BAHA but my doctors said I'd been through enough and see if I can handle being SSD. Im handling it well but the people in my life need to now.

Mike - you have a wonderful way with words and I love reading your posts.

Kaybo - I am so glad that the gang is all still here!

Off to catch up again.
Lovenhugs to all
Suu xx
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12