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bartony

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Reply with quote  #1 
I would like to apologize for my last thread being deleted.  There were many caring and helpful members posting valuable information for me.

The thread was locked, something I didn't do, and seeing no one could post further in that thread, I hastily deleted it.  Didn't think it would do anyone any good if they couldn't post any longer.

I do apologize for that hasty action. 

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Tony


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aQuieterBreeze

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Reply with quote  #2 
Is the thread you deleted the
Neurologically Overwired one?

That thread had some excellent information in it - for you and others that may come across it ....
I wonder if Dan has a backup copy ?

There was a post I wanted to quote some info out of ...where Rob had mentioned some steps that would be helpful to you - as some of those steps would be helpful to anyone with these challenges ....

Thanks for letting us know you deleted it.
I like what someone running another board used to do - when he would need to delete a thread, if I remember right he kindly sent copies of it - to all who had posted in it. When threads are deleted, we loose our own posts as well.....
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Marilyn

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Reply with quote  #3 
I take the blame for that thread heading south.  It was my fault for posting on a day I didn't feel so great.  I made a decision; if I can't be nice I should be quiet.  Once again, I'm sorry.

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bartony

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Reply with quote  #4 
Not your fault, Marilyn.  I don't have good days at all anymore since losing my wife.  You did nothing wrong.  I'll take the blame as I think half the internet is over the fence at me anyway.  I've not done anything to suite anyone since losing my wife.  Just please God, that's all that really matters.

 

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Tony


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aQuieterBreeze

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Reply with quote  #5 
To Marilyn, Ben, John and Tony,

There is a cached page of the deleted thread available via a google search - but the latest post shown is over a week ago ....
and unfortunately I did not notice any of Rob's or DrNagler's  insightful posts in it at all. And mine are also missing.
Tony, so are your posts and replies....

Rob,

Do you have a copy of your post, in which you mentioned some steps to Tony,  that would be helpful for rebuilding his tolerance to sound?
The specific part I am thinking of was about using hearing protection less, using broadband noise, listening to music ,and getting out into environments that he can tolerate, without having to use  hearing protection. You mentioned that all of those things, (and perhaps some others?) could be helpful .....
and you phrase things so well, And because of that,   that was something I had thought of quoting, or quoting part of - in a post for someone else on the board, as someone was looking for tips .....on coping with these challenges.
And in my view those were some VERY good ones.
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Marilyn

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Reply with quote  #6 
No, I don't have a copy of that Rob's post, Breeze.  I remember it.  It was good information.

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aQuieterBreeze

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Reply with quote  #7 
Tony,
you mentioned -
I don't have good days at all anymore.........

Sometimes it can help to take things, one step at a time - and focus on finding something to bring us  a smile,
and enjoy it - to "be here now" and not focus on the things we can not change,
and to enjoy the beauty found in each day - as it truly is a gift,
and it is there, whether we notice it or not ....

It can  help to quit focusing on the things we can not change, and focus on those we can ....
and sometimes thinking about things differently, can be Very helpful
Wishing you much better days and peace of mind ....
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bartony

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Reply with quote  #8 
That sure is a great post, QB.  That is so true.  Lately, though I've been feeling rough and run down.  I have an appt. (moved up earlier) with my general Dr.  I may be down on some vitamins or something.  I think that was my thinking when I said that.  I felt oversedated and drugged this a.m.

But that is really good and guaranteed, I won't delete this or any other threads! 

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Tony


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DrNagler

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Reply with quote  #9 
Here is the thread that Tony deleted:

http://www.tinn.com/100415DeletedThread.doc

smn

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Rob

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Reply with quote  #10 

Not one single one of you are walking my walk.  I can't walk yours either.  We are all different in our makeup, thinking, feelings. 

 

That’s true.  But if you ask for support, then you’re basically saying to folks “although you aren’t walking my particular walk, and although you may think and feel differently than I do, I am asking for your help and would like to hear your suggestions.”  So, while it’s a given that none of us can experience things exactly the same as someone else, there is, hopefully, some area where we do relate, sympathize, or understand – or even have similar experiences – and surely that is why you felt that you could reach out here when you needed help and support.  And I'm glad you did.

 

How soon you all forget just how much I am going through re: the loss of my soulmate.  

 

Do you really believe people aren’t mindful of your recent loss?  I think the opposite is true, Tony.  People on this board and on TSMB are very aware of your loss and they feel bad for you.     

 

I also deal with it plus the loss of a loved one, plus phonophobia, plus fear of myoclonus becoming worse if I go without hearing protection.  I am pulling out the stops and leveling with everyone.  

 

I appreciate that.

 

Those menacing thumps and booms are worsened when I try to hear without hearing protection, don't ask me why.  

 

Here’s why:  Your ears have a new “normal”.  By wearing hearing protection as much as you do, you have effectively reset your ears’ response to all sorts of sounds which otherwise would not be a problem for you.  Your auditory system is oversensitized and the only way to do something about it is to reverse course and let your ears behave like ears. 

 

I can not stand that, and feel suicidal when it ensues.  

 

Then I suggest you do something about it so that you don’t feel so extremely awful.  This is the point folks are trying to make, in a nutshell.  Nothing will change unless you take specific steps.  Is it going to feel good to take those steps?  Of course not.  It’s going to feel terrible and unnatural and you're going to instinctively resist.  But you have two choices.  Continue to feel extremely bad or make some radically different moves than usual.  Which, in my view, means lose the earplugs, find a new home for your pet so you can live normally in your own home, spend time in as many places outside your home that you can on a regular basis, listen to music everyday, learn some basics about managing tinnitus and decreased sound tolerance from a professional, read the book you bought on tinnitus management and do the exercises like you're in church, and enter treatment with a psychotherapist as if the rest of your life depended on it.    

 

I have more than just hyperacusis to battle.  

 

Yes, you do.  And your challenges are very serious.

 

You don't fully understand the wide scope of my makeup and problems.  You never will no more than I can fully know your makeup and problems.

 

That’s not the way it works here, Tony.  Nobody is required to fully understand each other.  We do the best we can.  You’ve asked for support and people have given it to you.    

 

I don't appreciate being judged one bit.  Telling me I don't want to get well is very rude and I don't like it one bit. 

 

There’s no question you want to get well.  Unfortunately, wanting something and taking the steps to turn that wanting into doing are not the same.  Wanting something – wanting it badly – is the first step.  But if we don’t turn wanting something into acting upon it, then unfortunately it doesn’t matter whether we want something or not.  For the record, Marilyn wasn't judging you.  She was trying to help you move from a position of being stuck.  She was trying to help you. 

 

The only reason I post here anymore with a new problem is I am trying to find out if anyone else experiences the weird ear symptoms I do, and what you have found to do, to help those problems.  I'm not looking for sympathy or "POOOR poor Tony!"  

 

You want to know what you can do about these problems, and that’s understandable. 

 

I wish like most of you here, hyperacusis was the only thing I was having to deal with.  

 

In fairness, perhaps you too are not in a position to make judgments about what others here deal with in addition to hyperacusis.    

 

I am battling several things, one being fighting my way back into wanting to live without my wife.  

 

I would consider you to be a fortunate man for having had that time with someone you love and who loved you.  Yes, it stinks that your wife has passed.  But compared to some, who either never had the experience at all or who shared a life with someone for far less time than you did, you are very, very fortunate.  Grief blocks that out for a while, but eventually not even the grief over an enormous loss can change the fact that you shared something with another person and she with you.  And one day, those memories will begin to seem like allies again.      

 

I made a mistake.  I posted here.  

 

That is an awful thing to write to folks who have repeatedly reached out to help you.  You didn’t make a mistake.  You’re looking for answers.  You want to feel better.  The best the folks on the board can do is to point in a certain direction and say "look there".  The rest is up to you.

 

I can't promise I won't again if I have a symptom that I want to see if anyone else has and what they have been told about it.  This is an open board, and does not discriminate against anyone.  I am as welcome to post here as any of you.

 

Where is this coming from?  When you ask for support here, or anywhere for that matter, it’s important to realize not everyone is going to put things in a way that you can tolerate hearing.  That doesn’t make their suggestions any less valuable.  And it may be that you can’t tolerate what they’re saying for your own reasons – reasons that have nothing to do with your wife’s passing or with other people, but with your history, the way you feel and think, and all the stuff that is so hard to look at.  From what I can tell, what happened here is that folks were trying to move you out of your comfort zone and you’re not ready to move there.  And that’s fine.  But you’ve got to give credit to people for trying to help you, even if it is tough to hear some of their suggestions.  Suggestions which you solicited.     

 

I may never recover from losing my world, my very life, my beloved wife.  I may. I don't know.  

 

Everyone respects that you’ve lost your wife and the grief is terrible.  I can’t think of anyone who has responded to you with anything less than real empathy and fellow feeling.  But your reaction to some of the things that were suggested in this thread is identical to your reaction at other times long before your wife passed away.     

 

I have not judged any of you, not knowing your entire circumstances and living under your roof.  Please grant me the same courtesy.  

 

Change is very hard.

 

Rob

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cbBen

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Reply with quote  #11 
At least start with the muzzle.  Your bird will understand; your health is at stake and it's the only way you can feasibly keep him around.  You are risking setback and increased suffering with every screech.

Good luck!



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Marilyn

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Reply with quote  #12 
A dear friend of mine recently lost her husband of 50 years.  She went through a phase in her grief where she seemed stuck.  She even had suicidal thoughts; life seemed too overwhelming.  At the urging of friends and family she went to her family doctor who prescribed an anti-depressant and counseling.  My friend is doing better.  She has the benefit of visiting her daughter in another state, as well.  The loss of one's mate is hard. 

Tony, I'm glad you're a part of a loving church family, and a grief group.  You are to be applauded for being a part of those activities.  You are also going to see the neurologist about your finger twitches later this month.  I hope you will mention loosing your wife.  Perhaps stress through grieving has caused these twitches? 

I went through a lot of grief and anger last year when we almost lost our son because of a medical error.  Post op, he went into cardiac arrest.  Thankfully, they immediately intubated him.  He was completely asystole 21 minutes.  It is a miracle he survived. Also a miracle he didn't have brain damage.

What ensued from this simple day surgery was a 30 day hospital stay.  He got a hospital acquired staph infection, had to be on antibiotics that caused nephrotoxic kidney poisoning.  He also developed a 5 inch blood clot in his right external iliac vein.  The vein is totally blocked and gets limited blood circulation through his capillaries.  You might say I am still in grief over all his losses.  Also, a year of dealing with medical bills and insurance...seems there are lots of errors, and never in my favor, lol.  Spending hours on the telephone with doctor/insurance while having category 4 hyperacusis was hard.

My son missed school all last year because of his weakened heart from the repeated defibrilliation during cardiac arrest and numerous health problems that followed.  He's such a great kid, he never voiced a word of complaint.  He's still recovering from the emotional trauma of it all.  With my ear condition being undiagnosed, at that time I overused ear protection.  Every doctor visit was an ordeal for me.  Believe me, there were many! 

The isolation of having a rare ear problem is also hard.  People in general don't understand hyperacusis.  It's just hard for them to wrap their brain around it.  That's okay because I may not totally understand the depths of a problem they have.  I'm thankful my husband and immediate family care and are supportive of me.  Do they totally understand?  No.  I don't expect them to.  That's why it's nice to have the support of this message board, where people understand hyperacusis because they are living through it and recovering.

To me, life is full of losses.  My theory is; people go through grief when we loose something that affects our quality of life.  It may be a person dear to us who has died, our health, finances, or whatever.  There's a grieving process, and you're in the middle of it.  We know you are hurting, and as Rob said, people reach out to you here on the message board. 

My point the other day was, when we ask people for advice,  I will honor that person's time and emotional energy in caring about my problem by doing my best to take the good ideas and implement them.  I've said all that to say this:  When I got cranky with you the other day, yes, I was frustrated.  I want to see you get better.  Also, every person who posts here is going through some kind of unseen battle. 

What's the saying?  Lord, make me a potato, not an egg?  When I'm thrown in hot water, so to speak, I want to become tender, not hard.  I hope all of us here can turn our bad life experiences into something good.  We can always reach out to someone who's hurting.  That's good medicine in itself!

(Sorry this is so long.)

Editing to add:  Seems like that's what Dr. Nagler posted a month ago when I came in on this discussion.  He advised you to get out and volunteer somewhere.  That's a good idea.  People need you, Tony.  Win/win situation.




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bartony

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Reply with quote  #13 
Whatta crowd!  Not Rodney Daingerfield, just ol' me.

I want to thank DrNagler for finding the deleted thread.  I need to print all that off and this one too.

I appreciate the pep talk from Rob and everyone.  I do take every word seriously and to heart, believe it or not. 

I will be doing my best to follow through on everything suggested.

God bless all,



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Tony


John 3:16-17
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Marilyn

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Reply with quote  #14 
That's great, Tony.  I wonder what volunteering is available in your city?  Do you have any ideas?

Possibly elderly people who might need someone to buy their groceries?

In my town, there's a place for the needy to get used clothes or household items.  Volunteers sort the donated items.  It's a good social time for them, as well.  Seems there's lots of visiting, laughing, and coffee drinking among the volunteers.

When my son was in the hospital, my husband and I stayed at a Ronald McDonald House.  Volunteers came and mopped the kitchen, unloaded the dishwasher, etc.  The RMcD House was a life saver for us. 

You have so much to offer people.  People need you.


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bartony

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Reply with quote  #15 
Excellent ideas, Marilyn, but I can't afford to buy my own groceries, much less someone else's.  I need something to bring money in to see doctors and pay the thousands of dollars owed to those I have already seen.  I'm almost the "elderly" in need myself, financially.

I thought I was going to get to cancel that over $200 neurologist visit next week, I had been doing so much better, but today, I've got that occasional rt. frontal lobe vibration in my rt. forehead ever so often again.  Nearly driving me nuts.  I'm paying a high light bill today.  I don't know where the money is coming from to see that Dr. next week, and it not the first of the month.  At least my fingers aren't vibrating and twitching, one bright note about it.

My bank account is dropping lower with each new first of the month, though, and I'm uncertain as to how long I can continue to live where I am.  I hope to offer others something, but right now, I need to be doing better and on my feet financially.

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Tony


John 3:16-17
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DrNagler

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Reply with quote  #16 
Tony, are you saying that you do not have the time to help out in your local homeless shelter one night a week or help deliver meals-on-wheels one day a week? There are SO MANY people in need. It's hard to believe that with a little imagination and effort you can't find SOME place to help out a few hours a week.

smn
http://www.tinn.com
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aQuieterBreeze

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Reply with quote  #17 
DrNagler,

You really know how to make someone smile -
(as when i saw your post last night saying you had rescued that thread - I certainly did!)
Thanks for taking the time and whatever effort was necessary to save that thread.

There were some posts in it that are very meaningful to me
I was thankfully able to reconstruct it - in a text format, since the.doc file would not open properly on my computer.
(my version of Word is old)
If you have a way to make it available in.pdf, would you please post it on your site, or send me a copy?
As I may have better luck with the pdf file - and then the formatting would be retained ...
It looses a whole lot when copied to text. ( as I had to open it as a text file to do that) But I am grateful to have it.
Thank you
and thanks to those who posted in that thread ....

Marilyn,

I was able to read your post - and grateful for the opportunity to do so (thanks again to DrNagler)
and I hope you do not feel it is necessary to take a break, but if you do - that is OK too.
Thanks for being so open and letting us know where you are coming from with respect to your own challenges....
and how the board can affect you.
You have a lot on your plate, and from what you have posted on the board elsewhere
(as well as in your thread today)
I know it's not just these hearing challenges, though they can be difficult enough.
And even with what you are going through  -- you continuously reach out and try to help others, sharing what you have learned and are learning, and for that you have my thanks.
There is no doubt in my mind that you will get better, things can get a whole lot better - and you are taking the steps you need - to find improvement.
That is what it takes, for me it did not happen on its own - waiting for time to pass and hoping to get better, may have actually made things more difficult - for me (as I had a Lot of setbacks, some very long lasting) .... but finding a path that can lead to improvement, and taking that path has made important and wonderful differences for me. It's not always easy - but can get easier.....and the path can get smoother.
I am sorry for what you have been through, with these challenges and otherwise -
May you find healing and happiness as you continue on your path - and thanks, for crossing paths with all of us -
we are all "richer" in a sense - for having you here.
Peace and blessings  to you and everyone here,
And wishing you and everyone here  - rainbows after storms,
aQuieterBreeze
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DrNagler

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Reply with quote  #18 
QB, I'll post a link to a pdf version within 24 hrs.

smn
http://www.tinn.com
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aQuieterBreeze

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Reply with quote  #19 
Thank You!
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Marilyn

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Reply with quote  #20 
Excellent ideas, Marilyn, but I can't afford to buy my own groceries, much less someone else's.

Hi Tony, I didn't mean for you to pay for their groceries.  I meant could you find a sick person or shut-in who could give you their grocery list and cash to buy their groceries at the same time you purchase your own?  Just an idea.

Breeze, Thanks for your kind words.  I hope my post didn't sound like I was complaining.  I was just sharing some of my lemons...we all have some.  Hopefully all our lemons are being made into lemonade.  You make the message board a great place to be.







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bartony

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Reply with quote  #21 
I see, Marilyn.  There could possibly be someone in that shape.

Thanks-

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Tony


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DrNagler

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Reply with quote  #22 
QB, here is the thread that Tony deleted in pdf format:

http://www.tinn.com/100415DeletedThread.pdf

Hope this helps.

smn



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aQuieterBreeze

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Reply with quote  #23 
DrNagler,

Thankyou! That is MUCH better!

Also, though I do not post there, I do browse the TSMB and noticed  you were asking for suggestions for your website in a post of yours , on the TSMB.

When I read that what came to my mind was a section that has recommended reading -
such as excellent books on tinnitus and hyperacusis may be good to include,
if such a section is not there already.

It's been awhile since I looked through your site, but when I have, I have found  the information on your site helpful and appreciated it being there.

Thanks for putting your time and energy into helping (and  trying to help) people with these challenges.
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aQuieterBreeze

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Reply with quote  #24 
Thanks Marilyn!
Many people make this a good place to be, for several reasons.

(I'm working on a longer reply, and will post it in a bit, but wanted to say thanks for your kind thoughts.)
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DrNagler

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Reply with quote  #25 
QB wrote [in part]:

Also, though I do not post there, I do browse the TSMB and noticed  you were asking for suggestions for your website in a post of yours , on the TSMB.

Well, I just this minute made the first very important and long overdue change.  It is now no longer "Dr. Nagler's Tinnitus Site."

Check it out:

http://www.tinn.com

Actually the whole thing needs a lot of updating and cleaning up.  I certainly want to work on the Hyperacusis and TRT link - since my ideas in that regard have changed a lot.  It will become a Hyperacusis and Desensitization piece.  And then there's the whole misophonia element, which I never included on the site at all.

So, Everybody, please send your thoughts my way- either on the board or via e-mail to nagler at tinn dot com.  Thanks.

smn

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Marilyn

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Reply with quote  #26 
Breeze -
Dr. N - Your site was one of the first I found during the days after I learned I had hyperacusis. What I liked about your site was the ease I had in understanding what I was reading.  You make it easy for a layperson to understand  the medical aspect of tinnitus and TRT.  Your illustrations are descriptive and easily understood.  I'm looking forward to the new information.  Thanks.


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aQuieterBreeze

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Reply with quote  #27 
Hi Marilyn,

You mentioned-
Thanks for your kind words.  I hope my post didn't sound like I was complaining.  I was just sharing some of my lemons...we all have some.  Hopefully all our lemons are being made into lemonade.

Knowing what others are dealing with at times, in addition to these challenges  can sometimes help give us a better understanding . And you've been though a lot.

Your are right we all have our own situations to deal with. And as difficult as these challenges are and can be,
being able to improve our tolerances to sound is one of the good ones. In my view it's a blessing of sorts that we can actually improve.  There are many things in life that happen that are hard to change or do something about, (except perhaps change the way we think about them, or use what have we learned to try to help others) And with these challenges though we can't  turn back time and make it so they didn't happen, to us  -
to realize they are something we really can do something about, in my view is really important.
(and if we could somehow get the word out to help keep hyperacusis and tinnitus from happening to others in my view that is really important as well.)

I wondered at first with your comment if you were referring  to your post in that deleted thread, which i was  commenting on, as you had mentioned going through some hard times with these challenges ....
and no - it did not sound like you were complaining, Just being honest and these challenges can be difficult-
you have come a long way already, and i know it's not always  easy . (And if you are referring to what you mentioned in this thread - as I mentioned above - sometimes knowing what someone else is dealing with can give us a better understanding.)

When it comes to these challenges -
It used to be so easy for me to notice a "good day" when it came to how i perceived sound - and how sound affected my hearing/ears ....because good days were so few and far between - it seemed like everything soundwise was so difficult - now the more difficult days stand out more, in part because they are the ones that are fewer and farther between....though I still have a long way to go, and this time of year is always more challenging ...... winter is quieter.
The more i am able to tolerate, the less prevalent setbacks are, the more it takes in the way of sound to cause them , and they sometimes fade faster than i ever would have thought possible - restaurants and other things are still a challenge, but it all gets a bit better as time goes by. As I keep working on it in ways i have found to be helpful.

Among other things,  something that has helped alot for me is to use hearing protection as little as possible,
but in doing that - it does not mean i do not protect my hearing/ears in other ways - when necessary
it means i let most of my power tools in the kitchen sit idle (with the exception of the dishwasher and disposal )
the dishwasher is something i used to have to leave the house in order to run-
and if i was too tired to drive someplace, i would have to sit in the car - with muffs on.
then i could be in the back room with muffs and the door closed
then without muffs and then, with the door open a bit - now i sit in a nearby room most of the time when it runs .....
without hearing protection.(If my hearing /ears are too sensitive at the time, I'll go to another room and close the door if necessary)

I like the idea of spending time in environments we can tolerate without the use of hearing protection -
thinking in that way has also been very helpful for me - if one store was too loud -I would leave, and shop elsewhere -  or go back at a quieter time - though i will take muffs to some places such as loud appliance/electronics stores.....

I think to allow sound in that we are able to tolerate is very important ..... and also knowing some things are still too difficult - and where the boundaries are, and that they can change, and it's OK to test them, in ways that are appropriate for us to do so.....for me it's best to test them a bit at a time, as if i overextend by too far it is more difficult .....
but there are ways through these challenges, and that is something to be grateful for.


Though our situations are a bit different,
in part because I never used hearing protection to the extent you mentioned
like you, it took me a very long time to understand there was something I could do-
but even though it took so long to realize that - once we start doing what we can, (using appropriate methods to help rebuild our  tolerances to sound) we have seen  improvement - and that leads me to realize a bit of what IS possible ......
and that is wonderful. In my case I have noticed A LOT of improvement, in some respects more than i ever thought or would have dreamed possible at one time (for me anyway).....though I still have a long way to go.

There are ways through these challenges, and realizing that and taking appropriate steps in the right direction, really can help alot.

Wishing you better days with everything you are dealing with,
and a time, for you and everyone here, when you will look back in amazement - and notice how much more you are able to tolerate in the way of sound.

To notice how much different things sound,
at times makes it seem like what some of what i went though  before was a bit like the Twilight Zone.

Things can get much better.
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Marilyn

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Reply with quote  #28 
Hi Breeze,
Thanks for sharing that.  It's great to hear how far you've come from your early days of H.  I like your attitude!  I'd love to hear more of your story and strategies to improve your sound tolerances. 


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This message board is for informational purposes only. It is not intended to substitute for any medical advice. MANDATORY BOARD ETIQUETTE: 1. No personal attacks. 2. No profanity or use of inappropriate usernames. 3. No self solicitation of goods or services. 4 No discriminatory remarks based on race, gender, or religion. 5. Prohibitive postings include the following: discussing or suggesting the intent to end one's life, moderating or actions made by the moderators, and/or revealing personal information (full names, address, phone number). Rule infraction may result in either a warning or ban, depending on the severity. Kindness matters.