Author Topic: Do you ever feel nobody understands you and what you are going through!  (Read 8254 times)

MLB57

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Re: Do you ever feel nobody understands you and what you are going through!
« Reply #15 on: September 16, 2006, 05:30:17 am »
Dear Ratthebrat,
  I had a 1 cm rt AN removed retrosignmoid approach in 2001 (is re-growing and will have gamma, but that's another story)... My grown children have accepted my linitations because they know the whole story and aren't in denial.. but I think maybe your boyfriend can't believe you really are hearing=impaired. as you are young. I am 57 and have a dear friend my age (girl, not boyfriend) who just doesn't get it that I have trouble in situations I'm not familiar with--driving unmfamiliar places for example--as I have lost my "directional hearing" and don't always know where s ound is coming from and my neck muscles are tight and added to the swishing noise I have it's really hard for me in unfamiliar situations. It is true unless they have walked in  our shoes that they can never completely understand, however after a while the pained look on your face should expalin--my "pained" look is one of frustration and in the beginnning I tried to hide the fact I had trouble hearing but now I just tell people straight out that I do and they are usually okay. Is your boy friend insensitive with you and/or others in other ways? If that's the way he is you may need a serious talkw w/him--or have
him accompany you to an MD visit...
  Bes wishes--this is tough enough and we all need our loved ones on our side...  ::)
1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

Sefra22

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Re: Do you ever feel nobody understands you and what you are going through!
« Reply #16 on: September 16, 2006, 05:56:34 am »
Sometimes I get frustratrated because I don't feel that the people in my life really understand. When I first found out about the AN, I told everyone about it before I even knew myself how serious it was. I acted like it was no big deal, so that is the first impression they got. I console myself however, but reminding myself that EVERYONE has their own problems. I have a friend whose father is dying of lung cancer, another whose  mother just died.  Another friend is dealing with post traumatic stress from being in Iraq. My brother who has a rare form of arthritis, and is constant pain.  I feel for them, but I admit I can't TRULY understand what they are going through. And I think that's how they feel when it comes to me. I think it human nature to want people to understand, but I consider myself lucky to have people that care about me.
Lisa from Portland, Maine age 46
Diagnosed June 2006
15mm X 17mm AN right side 80% hearing loss
GK March 14,2007 Dr. Noren, Providence RI
1 Year follow-up MRI shows "slight shrinkage".
2 Year follow-up MRI shows "No Change".
3 Year follow-up MRI "stable".
BAHA surgery 4-22-09 BP100 Sept. 2009

pattibobatti

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Re: Do you ever feel nobody understands you and what you are going through!
« Reply #17 on: September 16, 2006, 06:12:25 am »
boy, you guys are good in the morning!!

very accurate thoughts,

I think I  am going to get some coffee before I put a thought together. 

Pattibobatti
17 mm AN removed 1-16-06
  retrosigmoid
  paralysis, cornea transplant,avascular necrosis

   'Are we having fun yet?'

Boppie

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Re: Do you ever feel nobody understands you and what you are going through!
« Reply #18 on: September 16, 2006, 03:59:56 pm »
My daughter just signed the final papers for a divorce.  So sad for all of us in the family, but we haven't walked in her shoes.  She complained that her best girlfriend brings over videos about comic divorces.  I relate my daughter's hurt feelings to my own. 

A friend says "You are doing so well with only one hearing ear. Why do you need a hearing aid?"  Well intentioned people say, "You are doing so well, I hardly know you have a problem."  Well, darn I work on it 24/7!  As Windsong so aptly put it, we have to walk in another's shoes to know how they really feel. 

We must forgive one another for clumsiness. Having been on this end of NEEDING EMPATHY, I hope I can remember to have appropriate responses for others in the future. 

I have gotten through the bad times of adjustment to hearing loss and surgery.  I am greatful to have a good life, family and supportive friends.
« Last Edit: September 16, 2006, 06:13:22 pm by Boppie »