Author Topic: I think I Am Going Nuts ...  (Read 10047 times)

Jim Scott

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Re: I think I Am Going Nuts ...
« Reply #15 on: July 04, 2009, 11:07:31 am »
Jim

From me to you... thank you for sharing such an insightful and honest and heartfelt response to Soundy, as it resonates within me as well. Please give that wonderful wife of your's a BIG huggle for me (but don't squeeze too hard, ok? ;) ).  I know both of you have your good days and not-so-good days.... and I know you both know my mantra (day by day, inch by inch....)..... here's hoping today is a good day... and for Soundy and for everyone here!

Phyl ~

Thanks for your kind words, they are truly appreciated. 

Sharing our burdens - physical and/or emotional - with our spouse, children and friends (the true friends, not the 'fair-weather' kind)  is crucial to getting through any difficult time in our lives.  I hope Soundy can find a way to help her family and friends realize that she is only human and can use some help once in awhile.  She shouldn't have to ask, but it seems as if her family doesn't know what to do and her friends are oblivious to her limitations.  As an independent person, she doesn't want to ask for 'favors' or be treated as 'special'.  I can easily relate to that, as I'm sure you can.  However, we all need a little help sometimes and if you're naturally independent, it's hard to ask for it.  I know this from experience.  Fortunately, my wife has what the bible calls 'a servant's heart'.  That doesn't mean she's a doormat for people but that she has an innate desire to help others.  She's been an example to me and of course, I try to reciprocate.  It's a very healthy mutual dependence that I hope I've conveyed to Soundy - and anyone who cares to read my previous post.  That you got something from it is a real bonus. 'Inch by inch, it's a cinch.  Yard by yard, it's hard'

Thanks again for your thoughts.  I'll give Tina that big-but-gentle hug.  Have a great holiday!

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.

CHD63

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Re: I think I Am Going Nuts ...
« Reply #16 on: July 04, 2009, 11:21:52 am »
This is a hijack .......   :-[  Jim and Phyl, you both are truly inspirations to not only me but to many others on this site, as well.  Thank you for being here on a regular basis!!

Clarice

Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Soundy

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Re: I think I Am Going Nuts ...
« Reply #17 on: July 06, 2009, 11:47:43 am »
To Jim a big thanks ... your post was insightful and you hit alot of nail heads ...almost like you know us ...

Bo is great and he knew he couldn't make me not drop Day Camp so he pitched in as always to help me cut
a wood parts for the wood project and alot of other things ... he is my balance and keeps me from going completely
overboard but even so I wear myself down due to my have to do everything personality...

sounds odd but as an child we as me and siblings were not allowed to have emotions after about 5 years old ...my
dad was hardcore military and we were his soldiers and soldiers don't cry or laugh much evidently ...so people don't
always know how I am feeling or how I am  until it is a crisis ...old habits die hard

the girls help me with personal stuff like getting me a drink or going to the truck to get something I left theree... they
watched their aunt die slowly over 7 years ... they don't remember her other than bed bound ...she died about 3 months
before I had surgery and I didn't tell them about it until about 2 weeks out... from dealing with Kathy they learned
some lessons in life kids don't need to learn so young ... but it taught them to be kind to others in need and some
days early one  they smothered me in their efforts to help ... but they are more balance and are a blessing most
days  :D

I am too independent for my own good but having taking care of myself form about 16 on until now don't know how
to not be ... Bo is a nurturer in another way and tries to help me too much I guess you would say and I tell him to
stop ... then when I ask something of him  he doesn't know if he should do it or not ... I confuse the poor guy and
know it ... he doesn't leave a room without coming to where I am and touching me ...a hand on my shoulder , a quick 
squeeze of the  hand , a kiss to the top of my head whatever  and always an I love you ... this amazes my sons who
say they never saw their dad hold my hand or kiss me and never heard a kind word from him until I told him I was
leaving and he was trying to make me stay ...

I know I am the problem and with help from people on the outside looking in like you Jim maybe I can work on myself
and make it a better place for all of us ...

strangely the anniversary tattoo has calmed me ... it gives me a permanent thing that tells me as of Thursday Bennie
was dead ... the drawing the old me and I need to invent a new me ... for most part I am fine with the new me and then
get overwhelmed ... and like I told someone ... I think the anniversary thing and having these little anniversary crashes
are kind alike someone getting nuts when they turn 30 or 40 or 50 and freaking out a little ... I just need to change
what the day means to me in my mind and maybe it won't clobber me again next year ...I recall doing the same thing last year at one year mark ....I have a year minus 4 days to work on it  ;D

as to Fly Lady ...she lives in an icon on my desk top and I read her and put some of her suggestions in use ... sometimes
the amount of stuff she tried to convey is overwhelming... but it is humorous to read through even if I don't put it
all to use


You want to hear something funny (or maybe it's not funny ) ... I have a super man shirt (no cape ) that I wear on
off days to boost my spirits ...maybe I think I am super woman ... maybe I should chuck the shirt ...




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

moe

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Re: I think I Am Going Nuts ...
« Reply #18 on: July 06, 2009, 02:23:18 pm »
HI Soundy,
Reading through your posts. I feel for you girl.
I have said repeatedly, "I'm so glad my kids are grown "(for the most part). The youngest is 16. I can't imagine having to do the kid thing with the wonky headedness and other fun symptoms.
I'm having a hard enough time taking care of myself!
So yea, I've been there. Start one thing, stop that and start another, etc...... I wonder how things get accomplished but somehow they do.
Very frustrating.
I also have a dry erase board on my kitchen fridge. It's a MUST. I can jot things down that I can't forget to remember (?) and then I smear it off when I'm done!
Good luck with your family meeting or speech or whatever...
They will need frequent reminders BTW. or lists or something.
 From my experience, I get the help/understanding, and then we fall into the "I need mommy/wifey " trap again and it's like a little cycle that keeps repeating!
Peace to you,
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Jim Scott

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Re: I think I Am Going Nuts ...
« Reply #19 on: July 07, 2009, 03:23:26 pm »
Hi, Soundy ~

I'm so glad to learn that my words were of some help to you.  I can totally relate to your independent mind-set and the unemotional facade that you feel compelled to present, even when it isn't always appropriate.  I've experienced some of that, too.  Fortunately, my wife was able to tolerate my immediate post-op moods.  I would snap at her when she asked if I needed anything and her asking if I was O.K. would send me into a snit; of course I was O.K.!  I'm always O.K.!  Stop asking me if I'm O.K.!!!  Fortunately, I got past that 'stage' and my usual charming demeanor returned.  ;)  Of course I probably tried to do too much, too soon, post-op but that was my fervent desire to regain my independence rearing it's sometimes-ugly head, I guess.  I survived and eventually found - and accepted - my limitations.  Frankly, it's a lot easier when you're my age, retired and don't have small children to raise. You definitely have a more difficult situation as well as needing to control some of your instincts that end up making things more difficult....but you already know that.

Your husband, Bo, sounds like a great guy.  Most wives with husbands that truly love them tend to forget that their man would literally die for them, if necessary.  They sometimes put too much emphasis on whether he washes the dishes or finishes a chore list.  I doubt you fit into this category because you seem to recognize your husband's sincere efforts to help and comfort you.  I think he 'gets it' but as you noted, he needs either a definite signal or just direct words as to what it is you want.  Of course, you want to be your old self without all the physical problems.  He likely realizes that and of course he can't fix the problems, which is very frustrating for a loving husband.  I'm in that situation.  My wife doesn't have (and never had) an acoustic neuroma but she deals with a host of physical problems on a daily basis.  She gets weary but never gives in to them.  Well, almost never.  I can't do much about them but I let her know that I love her, not just with words, which are important but sometimes too easy, but by sharing the load, as it were.  I do all the 'husband' stuff; from taking care of the car to killing the stray spider or moving something too big or heavy for her.  I also do all of the house cleaning, most of the dish-washing (no machine) and a lot of the laundry - but she folds the bedsheets.  By agreement, my wife (Tina) does all the cooking (I'm helpless in the kitchen) and food shopping.  It's a co-operative thing that developed over time - and she appreciates it.  It's a lot easier now that I'm retired and of course, it's a tangible way of showing my love and concern for her - and does not go unnoticed. 

I believe that men and women are simply wired differently.  Not that one sex is right and the other wrong - just different.  That can make it tricky to communicate on some things.  I suspect that opening up as much as you can to your husband would be a relief for him.  I doubt he really wants a 'Super-Woman' wife.  He just wants you to be as happy as possible and to help when he can to make your load a bit easier.  Sure, you have responsibilities and can't just sit around all day.  I can't imagine you would want to, even if you could.  That isn't who you are.  Still, you don't have to justify your existence by being constantly busy and helping everyone all the time.  I'm sure your kids just enjoy having Mom around, and, well, being their mom.  To a child, parents, especially mothers, are their whole world (until they reach puberty, at least).  We can all remember just being around our mom and/or dad and loving it, even if all they did was sit in a chair and read (my mom) or take us with them to some boring place to pick up something  I was happy just to be with Dad.  I seriously doubt kids have changed much.  They still just want moms attention and to know she is there for them.  That doesn't require a lot of activity volunteerism, just you being around and paying attention to the kids.  You probably do that, anyway. 

I think you realize that you must learn how to say 'no' to friends and acquaintances seeking your help on activity events without feeling like you're a slacker or letting people down.  You've endured serious surgery and have ongoing physical challenges.  You also have a husband and children to care for and they should always be a priority in your life as well as taking some time for yourself before volunteering for jobs that are physically demanding and time-consuming.  When my wife is asked to volunteer for stuff she knows will be too much for her, she usually says something like "I'm sorry, I just have too much on my plate, already".  End of discussion.   She is inevitably pleasant about it but her 'no' is 'no', not 'maybe'.  Most of our friends know of her physical problems and that she is a big help to me in my duties as head of our church benevolence ministry.   Of course, that helps.  I know some folks in our acquaintance think that I won't let her take on some jobs.  That isn't really true - she makes her own decisions - but it does keep people from expecting my wife to take on anything that is asked of her, even when it's for a good cause (aren't they all?)     

As I've stated, I'm pleased that my comments have been helpful to some extent.  I don't pretend to have any 'special knowledge' - I'm just an uneducated former radio disc-jockey - but I'm happy to offer whatever I can if by doing so it eases your burden a bit and possibly helps you to re-set a few priorities and re-think some impulses and behaviors .  We can all change what we need to without changing who we are if we have the motivation to do so.  If anything I've offered can help you do that and make things easier for you (and your family) I'm more than satisfied.   Here's looking forward to better days!  :)

Jim 
« Last Edit: July 08, 2009, 11:51:41 am by Jim Scott »
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.

moe

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Re: I think I Am Going Nuts ...
« Reply #20 on: July 08, 2009, 11:34:47 am »
Dear Soundy and Jim,
Great thoughts, Jim. Good advice too!
 With an acoustic neuroma and all it's challenges, I have also learned to just say NO. But then I don't have Sound's personality so it's easy!!!
People cannot understand no matter how hard you try to explain.
That's why we have this forum....

No I don't thing I'm going nuts. I KNOW i'm going nuts! Woo hoo! Meds help tremendously.......
And Soundy you have a great sense of humor through it all.

I have these funny stickies with cartoons and sayings.
One of them says.

I don't suffer from insanity. I enjoy every minute of it! (pic of a stressed out woman).
I love it!

Hope today is a good day.
Maureen :)
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty