Author Topic: A place to vent  (Read 63906 times)

marg

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Re: A place to vent
« Reply #390 on: October 05, 2008, 11:57:18 pm »
Donnalynn,
   Glad there is so much support for you... it is plain to see that this gal  is a bully !  I hope she is not one of your group of 7 and if she is I hope another member of your group sets her straight.  It's hard enough when someone says something unthinking '  Lask week I told  a woman I work with at school that I hated my school pictures (we were looking at them and it will go in my class picture - I teach 2nd grade).  Her comment was "well if you smiled more it would be better"  I told her I can't -with my facial paralysis that's as much as I can manage".  I think we both felt bad..... and of course I felt more like I don't want to laugh or try to smile because it  makes me look worse.  Anyway, .....


Sue and Jan thanks for the nice words..... My husband told me late last night that dinner experience "is NEVER" going to happen again - ah yes, my knight is back on his horse !  :) ..... he just forgets what it is like for me until I explain it again.
marg
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !

Omaschwannoma

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Re: A place to vent
« Reply #391 on: October 06, 2008, 04:27:33 am »
marg,

Wanted to say before you give up on going out to dinners try using an ear plug, I use one for these situations and makes it much, much better hearing those at the table.  I used to use the "swimmers ear plug" then bought a "musician's" ear plug as this is a custom fitting one and has three different filters that cut out a little, some or all noise.  I chose the middle filter as I still wanted to hear the people next to me talking.  Try using a plug, and not the foam ones, they don't stay in and they don't do a good job cutting out the background noise.  Hope this helps.  Don't want to see more SSD people give up their socialness (is this a word?).
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

yardtick

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Re: A place to vent
« Reply #392 on: October 06, 2008, 09:41:19 am »
Donnalynn,

You do not need a person like that in your life.  She has issues and insecurities and she's taking them out on you.  Actually I feel sorry for HER.  She must be so unhappy and miserable in her life, all she knows is blackness and nothing about the brightness and will of the human spirit.  This is your lot in life and you are dealing with it.  You do what you want and what makes you feel good.  I say good for you for taking the time to care about your appearance.  Surround yourself with people who care about YOU!!!  Scarves and all.   

Your Canadian AN SISTER,
Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

wendysig

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Re: A place to vent
« Reply #393 on: October 06, 2008, 01:06:47 pm »
Donnalynn,
I amazed that someone who considers herself a friend could say such mean, vicious things to you.  You were right to lose the "friend" -- she was not a friend at all.  I have to agree that I'm sure you are beautiful as you look in you picture and as you are on the inside.  If other people don't see that then that is thier loss and I pity them.  I also wanted to say again how sorry I am for your loss.

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!

msmaggie

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Re: A place to vent
« Reply #394 on: October 06, 2008, 01:49:09 pm »

I'm with Steve, Donnalynn.  With friends like that, who needs enemies? I am sure you look just as cute as your picture.  I'm appalled that someone would choose a time like that to unload on you.  Shame on her!

Mags
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.

MAlegant

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Re: A place to vent
« Reply #395 on: October 06, 2008, 07:11:18 pm »
Donnalynn,
First let me say how sorry I am that you lost your friend.  Now let me echo Steve when he said "keep the scarves, lose the (nasty) friend".  The problem here is hers, not yours, and people that treat other people that way are so full of self-hatred that it just has to spill out.  I'm sorry you were the recipient.  I may have had to hit that woman.  Probably best you didn't, but still... >:(
(scarf loving) 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.

Kaybo

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Re: A place to vent
« Reply #396 on: October 08, 2008, 02:21:03 pm »
Donnalynn~
Thank you for sharing all of this so that others might benefit...it is like I said on the phone, you are not giving up, just a little break.  You shouldn't have to prove anything to others and if they don't accept & suuport the "new" you then you probably don't need to waste precious time having them in your life!

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!

Jim Scott

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Re: A place to vent
« Reply #397 on: October 08, 2008, 04:16:37 pm »
Marg:

As another AN 'survivor' that lives with SSD and it's challenges, I completely understand your frustration.  Fortunately, my wife is very cognizant of my SSD and, when we're out, always remembers to sit on my hearing side.  Still, noisy environments will always be tough for us SSD folks. 

Last year, we attended a dinner with 4 other people at a small restaurant that, unfortunately, had a live band.  Once the band started playing, my ability to hear anyone at the table was down to, maybe, 5%.  I compensated as best I could by leaning over or to the side to hear people across or next to me.  It was a fairly effective strategy but still, the effort was tiring and the noise continually aggravating.  My wife was very sympathetic and the people we were with were aware of my SSD and talked loudly to me and/or leaned toward me as I leaned toward them so I could hear. When your dinner companions are oblivious to your SSD and diminished hearing ability and your spouse seems insensitive to your plight, that has to be very aggravating.  I trust your husband will be more sensitive to your SSD in any future situations like the one your related.

In defense of spouses and friends I have to mention that if our spouse has had a partner with normal hearing for years, it has to be a bit difficult to shift gears and suddenly be aware of our hearing deficit, then make the necessary accommodations in every instance.  It has to be even harder for friends, especially if we don't see them all the time.  They forget.  Remember, they hear just fine and very likely knew you when you had full hearing, too.  They need to be more sensitive to your SSD but education takes time to implement.

I hope this won't happen again but then, I also hope we'll all win Lotto someday.  ;)

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.

Jim Scott

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Re: A place to vent
« Reply #398 on: October 08, 2008, 04:27:42 pm »
Donnalynn:

I'm glad the many positive posts have encouraged you.  This is a very difficult situation but I have to concur with the majority opinion that - for whatever reason (and who really cares?) - this woman was no friend and obviously held some misplaced resentment toward you.  Unless she decides to make a very contrite and sincere apology real soon, I would no longer count her as a 'friend'.  I would ignore her as much as possible and certainly take her off your Christmas card list! 

Seriously, a similar thing happened to my wife some years ago and she was very upset, just as you were.  We analyzed the woman's probable motives, concluded from the evidence that she was miserable and unhappy with her life and clearly jealous of my wife (Tina).  This woman very likely considered herself superior to Tina (she wasn't) and couldn't understand why she didn't have the happiness and contentment my wife enjoyed, so she lashed out at her, for no real reason beyond pure envy fueled by her arrogance.

She later proved us correct but I won't bore you with the details.  Suffice it to say that this was obviously hurtful to you but that you seem to be self-possessed enough to rebound, drop this woman like a hot potato and realize that her bitterness shouldn't govern your happiness.  I'm sure it won't. 

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.

Omaschwannoma

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Re: A place to vent
« Reply #399 on: October 08, 2008, 05:15:26 pm »
Hey Donna, remember the "old" saying look for the silver lining in the dark cloud?  Well, your deciding to leave probably will open a great door to you that wouldn't have been noticed had "she" not happen in your life!?
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

marg

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Re: A place to vent
« Reply #400 on: October 09, 2008, 10:49:26 pm »
Donnalynn,
     I think what I came to realize was that I was building a 'new normal'.  It took me a while to accept it but as time has gone by I am getting more used to the things that I deal with on a daily basis.  I play in a bell choir group and had to take a break for a while after surgery.  I play again now but it is challenging as I can't hear the people on my left and heaven help me if I  lose my place when we are playing...... I can't hear the person on my left whisper what measure we are on ( and there is no one on my right to whisper in my good ear) but my friends are understanding and extend much grace.  I do have to remind them that I am deaf in my left ear (sometimes as Jim said it is harder with the people who knew us before we were SSD) but because of their support it is worth the extra effort.  I notice that even though the tinnitus is still much louder after practice.....it doesn't bother me as much either .
     I think it is great that you are taking a break for a while to  evaluate what should be in your life now.
marg
p.s.  I have a harp that a friend let me borrow just before I found out about my acoustic neuroma ..... and it still sits there waiting for me to play it.  I haven't found anyone who teaches celtic harp in my area .  I am still hoping to get a chance to learn..... wish you lived by me.  :)
« Last Edit: October 09, 2008, 10:52:22 pm by marg »
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !

lori67

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Re: A place to vent
« Reply #401 on: October 13, 2008, 05:53:45 pm »
Marg,

Ever think maybe it's not tinnitus?  Maybe someone is still actually ringing bells in your ears?

Good for you talented folks though.  I have no musical ability besides turning on my ipod.

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.

marg

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Re: A place to vent
« Reply #402 on: October 13, 2008, 09:57:33 pm »
Donnalynn - thanks for the offer of music.  I will PM you when I can get my head above water to have time to learn to play (right now I am trying to learn the new subject matter areas we were given this year to teach in 2nd grade, and I'm still trying to clear out the things we had to bring to our house when my mother-in-law died in August).
     Lori - you know  maybe it is bells in my ears....... if so I would be more than willing to donate them to my bell choir ....... It certainly would be no hardship to give them up  ;D

marg
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !

hannie

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Re: A place to vent
« Reply #403 on: October 22, 2008, 07:46:04 am »
be prepared for a big 'ole vent!

I got a letter today from my surgeon postponing my next appointment with him..... again.  >:( This is the fourth time he's done this - twice because he's gone on holiday! gggrrr! i know he's entitled to a break but cant he book it before he schedules people in his clinic!? i'd booked time of work and rearranged my classes (several times) to get people to cover, my boyfriend had done the same and now he's cancelled again and we need to rearrange everything ... again!! i dont understand why the treatment i'm getting from the doctors is so vastly different to everyone elses experiences - maybe its using the NHS - i'm not paying them so they don't feel they need to go the extra mile for me.

i just feel really alone in this as the surgeon basically said to do some research and let him know what treatment i want him to do. hw refused to advice me what he thought was the best treatment option. i'm worried of making this major decision and feel like he's not giving me any support in this. I was really looking forward to seeing him with a big list of questions and getting things straight in my mind. now he's cancelled again and i have to wait til after christmas to see him. i was hoping that i would have made a decision by then and be able to relax a bit over christmas. i have so many questions about his experience, waiting lists, the location of my tumour, size, prognosis etc.. he hasn't told me anything beyond giving me a generic handout. I've done all the research but without knowing his experience and the size and exact location of the AN its difficult to make an informed decision.

the worry and sleepless nights are really starting to get to me and i feel really demoralised.  :'(

gggrgrrrrrrrrrrrrrrrrr!!!

ok rant over. *and breathe*

hannie

MAlegant

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Re: A place to vent
« Reply #404 on: October 22, 2008, 09:57:54 pm »
Hi Hannie,
Sounds like it's time to divorce your doctor and speed date a few more.  So sorry.
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.

 


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