Author Topic: Mourning the "old" you... embracing the "new" you  (Read 20818 times)

sgerrard

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Re: Mourning the "old" you... embracing the "new" you
« Reply #30 on: February 05, 2009, 09:40:50 am »
I am beginning to wonder if there is such a thing as normal?

Hi Golden,

There is at least such a thing as a new normal. It is not quite the same as the original, but once you get used to it, it works.

Welcome to the forum, I hope you will stick around and chat with us. There are lots of discussions on the issues you have described, some of them might be useful to you.

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.

Mickey

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Re: Mourning the "old" you... embracing the "new" you
« Reply #31 on: February 05, 2009, 10:19:01 am »
Hi Golden! Please don`t give up. Try to get into a specific lifestyle consisting of good nutrition (vitimins minerals and herbs) exercise, long walks, arobics, resistance training and mental actives that stimulate positve thinking, chess crossword puzzels. good movie, etc Try and start there and progrss into whatever endeaver comes your way to make your life more better. It can`t hurt! + stay in tune with this board and organiztions like ANA. The body has a way over time to heal.  Wishing you the best, Mickey

Syl

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Re: Mourning the "old" you... embracing the "new" you
« Reply #32 on: February 05, 2009, 11:53:00 am »
Golden:

For me the best way to deal with my issues ( balance, hearing loss, headaches, etc.) is to take it one day at a time and one issue at a time. First, I went to physical therapy to help improve my balance, I walk 2.25 miles almost daily--also for balance. Then I got a hearing aid to see if it would help. Now, I am seeing a neurologist to help me with the headaches.

Even after physical therapy, I am not 100%. The hearing aid helps, and it has helped me realize how far gone my word recognition is in my right ear. But it's great for directionality--I never thought I would get that back.

Little by little I am scratching these items off my list of issues. It's not that they've been resolved and I'm back to my old normal. What this is doing for me is helping me move on. I'm getting closer to accepting the new me knowing that my issues have improved  and knowing that I have done my best to resolve them. Along the way there have been new issues that arise and some that I didn't expect to get resolved that do get resolved.

Then there are times that I remember that the new me is not that bad off. Before my surgery I bought a few scarves in case I needed them after surgery. I used them once or twice, but I really didn't need them. Then I forgot about them. A few days ago my sister told me a friend of hers is a cancer patient and wears a hat that she borrowed because she doesn't have the budget to purchase her own. I was more than glad to pull out my scarves and donate them to her. Most importantly, I was happy that I never needed them.

Hang in there and take it one day at a time.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

MaryBKAriz

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Re: Mourning the "old" you... embracing the "new" you
« Reply #33 on: February 05, 2009, 12:47:47 pm »
Welcome Golden,

You are amongst a group that understands. All the things you are dealing with many people here are dealing with and will understand. What we all have in common is we have walked in similar shoes. Family and friends no matter how supportive, helpful, loving and thoughtful cannot fully understand the strange reality we live in. Just recently I have started accepting my new normal I realized I needed to go through the stages of grief. The amount of time that takes is individual for sure.

In addition to life's normal requirements, my feeling is start by doing things you can do and you enjoy doing. After I some experimentation with different interests I started finding things that challenged me yet I could conquer. I am building on that and getting better and better. This helps my attitude immensely. I have some of the old me but it has been altered to fit the new me. I would try not to stress too much about trying to do it all.

As for life's routines,  I just try to prioritize and realize what doesn't get done, who will care in 100 years? It has been hard to let go of some of the control of my life and life's path that I used to have. I really try to stay one day at a time. If things are bad, one hour at a time. I try to stop and reflect on the really amazingly good things in my life that I used to take for granted. For instance, on days I feel only a little imbalance I feel the freedom of being able to have more balance and am thankful for it.

Hopefully, something in what some of us says gives you ideas, comfort or just the feeling of not being alone. (SUCH a blessing all in itself!).

Take care,

Mary
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

MAlegant

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Re: Mourning the "old" you... embracing the "new" you
« Reply #34 on: February 05, 2009, 07:03:39 pm »
I'm still pissed off at the new me, so not exactly embracing much, but, here is a quote that a friend sent me right after surgery:

It is in the quiet crucible of your personal, private sufferings that your noblest dreams are born; and God’s greatest gifts are given in compensation for what you’ve been through.
-- Wintley Phipps

Hang in there, all my AN friends.
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.

nancyann

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Re: Mourning the "old" you... embracing the "new" you
« Reply #35 on: February 05, 2009, 07:18:22 pm »
Marci - from Wintley's lips to God's ears; wonderful things happen if you're open to them....
Always good thoughts,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

golden

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Re: Mourning the "old" you... embracing the "new" you
« Reply #36 on: February 06, 2009, 09:54:27 am »
Marci,
I know how you feel. I guess you expect that after you have the AN removed you should be better because the tumor is gone. I was raised that when you fall off the horse you get up brush yourself off and get back on. Well unfortuantly, that is not the case. I tried that but, I now know I have to clean the dirt out of my mouth first before I can even attempt to climb back on. How do you go about that? I do not know. Everyone is different in thier recovery. It has been 21 months post and I am angry along with alot of other emotions. It does make me feel a little better knowing that this forum exsist for AN patients and people can relate to me and what I am going through and I am not alone. Good luck on your journey to recovery.

JudyT

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Re: Mourning the "old" you... embracing the "new" you
« Reply #37 on: February 06, 2009, 10:12:10 am »
Dear Faith40.......What an inspirational post.......I printed it out so I can read it as often as needed. I face most of the issues you do (4 years out from CK) my life has totally changed......from a very active one to a very slow pace. I live in the countryside so am now kind of isolated as my home is really not on the way to anywhere...........it's a beautiful view though. I am 69 and a widow and live in a very nice home......it's much to big now that all the kids are grown and gone. Your words on scripture were awesome for me...........soooo encouraging and uplifting...............Thank you for this very touching and meaningful post. Keep it up please!

Judy T

arkansasfarmgirl

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Re: Mourning the "old" you... embracing the "new" you
« Reply #38 on: February 06, 2009, 06:42:18 pm »
I really mourned my pre-surgery self for the first time today.  I was asked to be on the board of directors for the AR Ag Council and today was the first meeting I attended, so I was meeting a lot of new people.  I would normally be very self-confident and outgoing in that situation, but I found myself feeling very shy and awkward because I couldn't smile.  I had to struggle not to cry, right there in the middle of that room full of strangers.  The SSD was a pain, but not really that big of a deal.  It was feeling like I couldn't connect with the people I met that made me so sad.

I wonder what the older lady who walked into the bathroom while I was pumping breastmilk thought about me...  <evilgrin>  She may not have even noticed my face, over the horror of seeing me with my shirt hiked up and hooked up to the pump.  ;-)

Vonda

MAlegant

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Re: Mourning the "old" you... embracing the "new" you
« Reply #39 on: February 07, 2009, 10:27:50 am »
Vonda,
I like the distraction method that you've used.  I'm sure that lady never noticed anything but the breast pump.  Do you think this would work for those of us past our childbearing years, with no babies in tow?   :P

I've also had to get used to a new me in public.  Because of the numbness and distorted feeling in my mouth, the new me has to work very hard to speak clearly, not spit, dribble my coffee or wine, etc.  The old me (a classically trained singer) was very proud of the way I could speak in public even whilst drinking and eating.  Not to mention good diction and all of that. I work hard at this every day at work (where talking to people is a major part of my job) on the school board (even harder but I haven't quit yet), and in social situations.  I don't like it but there it is.  I don't have a choice.  Well, I suppose I do have a choice.  I could live my life under a blanket but I just refuse to do that. 

Best,
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.

Soundy

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Re: Mourning the "old" you... embracing the "new" you
« Reply #40 on: February 07, 2009, 08:37:32 pm »
Speaking of speaking ...

I can't talk as clearly as in my words are jumbled and out of order and I toss the word refrigerator
into the conversation no matter the subject ...  :D ... it bothers me when talking to people I don't know well ...
friends and family have gotten used to me and my knew speech ...

I have developed this habit of talking to myself , singing and repeating tongue twisters ...I do this when I am
in the truck alone or at home alone...I figure practicing would  help me talk more clearly to others  ...


this was fine and dandy until on of my 28 year old twins came into the house and I didn't here him...I was in the
living room talking up a storm and he was in the hall peeking in listening... I caught him out of the corner of my eye
and like to have had a heart attack... he thought I had flipped my lid ...told him nope ...just practicing ... I don't
think he was convinced that I hadn't lost it ... I think I need to take his key away from him...he said he knocked but
I never heard him ...

living in the sticks I now keep my door locked ... my old dog that died last April warned me if anyone was coming
toward house ... we moved Jack from the barn to the house to bark for me ... he barks at possums passing through
at night but wags his tail and invites any people that show up to come into the yard...  >:( ... this is a part of the
new me I don't like ...I am not exactly scared here by myself but kinda uncomfortable sometimes because I don't
hear as well ...



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

nancyann

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Re: Mourning the "old" you... embracing the "new" you
« Reply #41 on: February 07, 2009, 10:03:56 pm »
jeez, Soundy,   that would have scared the bejesus out of me ! ! -   All of a sudden seeing someone in my home - WHEW ! !
As far as speech is concerned,  I do make an extra attempt to speak clearly,  it is hard work but worth it.

Always good thoughts,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Soundy

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Re: Mourning the "old" you... embracing the "new" you
« Reply #42 on: February 07, 2009, 10:14:55 pm »
All my grown kids have a key ... so any could sneak up like he did ...well he didn't sneak up but I
had vacuum on and just didn't hear him ... the girls startle me from time to time and they live here  :D
I need to hang some jingle bells from ceiling by doors so I get a warning jingle

And I guess I will continue talking to myself for practice

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

Jeanlea

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Re: Mourning the "old" you... embracing the "new" you
« Reply #43 on: February 08, 2009, 12:16:33 am »
This is an interesting thread.  I'm 3 1/2 years post -op now.  I've gone through the stages of grief and have finally arrived at acceptance.  Leaving the hospital with a drooping face led to a lot of sadness.  I knew it was a possibility going into surgery, but only a 4-5% chance.  The same for facial numbness.  Lucky me, I got both!  I have had some good improvement in my face over time.  It's still not back to "normal", but I can accept my new normal.  I've become more patient with myself.  In the past I would get anxious about arriving places on time.  Now I do my best to still arrive on time, but if I'm late, hey I'm late.  It's not the end of the world.  I have single-sided deafness, but my TransEar helps a lot with that.  I've adjusted to my eye.  On days when I'm feeling lazy I put ointment in in the morning and am good for the day.  I'm extremely thankful that I didn't get headaches.  I wish I could wave a magic wand and make everyone's headaches disappear. 

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD