A place to vent

[mindyandy]

I'm thinking about you too. I cant wait to hear back from ya. HUGS...............MORE HUGS!
Mindy

[Jill Marie]

Nancyann, I know I'm too late to tell you this before your surgery as I hope you are sleeping peacfully right now, but I just want to say that I too will be thinking about you tomorrow and can't wait to hear how you are doing.  We all have our fingers crossed hoping this is the best Christmas gift you will get this year!

Marg, I'm so very, very glad that your wonderful husband, your knight in shining armor, met you at the doctors office.  Just as I hoped, it looks like you will have a very Happy Thanksgiving! 

Soundy, you posted a while back about being an Army brat and watching them go off to Vietnam, I remember that all to well myself.  Thankfully a lot of the Vietnam Veterans now wear hats that say they were in Vietnam so I get a chance to THANK them for what they did when they come into where I work.  I hope all 5 of your cub scouts make it home.  I love what the Girl Scouts are doing with the cookies, it really lifts the spirits of the troops when they see that those back home really care.   Our son has one more mission then should be headed back to base & hopefully home for Christmas! 

Happy Thanksgiving to all, Jill Marie

[Brendalu]

Prayers and good thoughts, Nancyann!  Warm wishes and all the rest. 
Hugs,
Brenda

[Cheryl R]

   I think I have been handling starting to lose  all of my hearing as good as one can but today it is really getting to me to not hear Christmas music well.       Music has been garbled for a time now so I hardly listen to the radio anymore.              The music from Charlie Brown Christmas has been my most favorite at this time of year and I would listen to it almost every day and it sounds so tinny now.                                     I know I am fortunate to still be  "normal" in so many other ways but today I am mourning  what  has been  an important part of the Christmas season and one I will really miss.           I am not sure if the cochlear implant in the future will let one hear music well if it does work.
                      Thanks for listening!                           Cheryl R

[nancyann]

Cheryl R:  I cannot imagine what you & others who are in your situation are going thru.    I have single sided deafness & don't know what I would do if I started losing hearing in my good ear.   I hope there is something out there for you to retain/strengthen the hearing you have left.   In this day & age you'd think there'd be something available.... I hope you find it soon. 
Putting good thoughts out to the universe for you,    Nancy

[marg]

Oh Cheryl,   I do have hearing in my right ear - but right after the AN surgery and  for about a month - all music sounded garbled and tinny  in my hearing ear ( brain trying to sort thinks out I guess)  I couldn't stand listening to the radio or any music - just cried when it was on.   I'm so sorry about losing all of your hearing.... and there is a grieving process when something like this happens ... and it will never be the way it was again.  
        Although I can hear music 'ok' now with my right ear and am adjusting to being SSD ...  I had something happen about 7 years ago that was my first huge health issue.  I was outside when  a  large chlorine leak  happened from a local mill and I lost my ability to sing ..... and for a while  to talk without extreme pain and loss of voice.  I can talk 'ok now' ( I use a mic. system in my classroom so I don't strain my voice) but my ability to sing has never come back.... I was a voice major in college  and sang at weddings, funerals, in choral groups and I taught voice lessons too..... I was depressed for over a year and it was a long grieving process for me...a vital part of 'who I was' ... was gone forever.  Cheryl - it is okay to grieve, be angry , cry and vent.... get it out !!!  I hope you have supportive family and friends to help you through this very tough time.  I found the first year the hardest of the change when I lost my voice ...especially at Christmas as I sat on the side lines instead of being up with my friends singing.
    With this AN diagnosis, treatment decision, surgery  - unexpected loss of hearing ( I had an 85% chance of keeping my hearing) and recovery.... I found a wonderful counselor to help me through.  That might be helpful for you too.  I send you my love and prayers.  Next year shouldn't be as tough...you will have been through it once and you will know you made it through once.... you can do it again.
Margaret

[4cm in Pacific Northwest]

Margaret,

You are a wonderfully postitive woman.

Thank you for your above post...

Hugs...

4

[marg]

You are so welcome..... we all need to be here for each other  4  .... and you are too.
Margaret

[Omaschwannoma]

Cheryl,

I "hear" you, but "feel" your emotions more and my heart goes out to you.  You are allowed to show your unhappiness, anger, frustrations, etc.  This surely is not easy for you and I can tell your doing your best to cope.  I too am losing the hearing in my only serviceable ear, albeit it's mild on the high end, and can't compare to what you must be coping with, but I can relate in a small way.  Vent on girlfriend!  Remember Cheryl, you are NOT your ears, you are much more than that.  Do not define your happiness by what you cannot "hear", rather by what you can.  And it is possible to "hear" without the ears! 

[Cheryl R]

Thank you to everyone  with your support.      Hearing loss is such an invisible disabilty and it is hard right now when I am around people.      Anyone that knows me very well knows I am losing my hearing but they have no clue what it is like.    Being around any noisy area throws me off and it is frustrating to know there are conversations going on and I have no clue what is being said.  I can only talk to people if I am right by them so am still working for the time being.    It is the small things that really are rather minor like not being able to enjoy the Christmas music that are bothering me more than the whole big picture of how life is changing.        Life is all day by day any more.
Thank you Arushi,   I so enjoy your dog updates as having met you at the symposium can picture you with your doggy friends.    You are so small and dainty so 2 bull mastiffs would be quite a challenge.         
Marg, how hard it must have have been for you to give up the singing that sounds like was such an important part of you.    I can not even imagine how hard it was to be forced to give it up.
Nanacyann,you have been in my thoughts with hopes  of a good outcome from your surgery. Since i have been thru facial problems too and good results from my nerve graft I know how much it means to just look normal!           
   Jeff, you have been such an inspiration as I have told you before and am glad for every new
challenge you are overcoming!             Snow is not easy with balance problems so that is super for you to be able to handle it now. 
                                    Thank you to everyone,                Cheryl R
     As

[GM]

Any venting for the new year?

[yardtick]

YEP,
Why does an employer allow you so many sick days and it is in the policy and procedures and than when it is time for your review they penalize you if you should use some of your sick days?  I'm spitting mad over this.  I lost major marks over this and as a result my increase wasn't as high as many of my co-workers.  As I was having my review my manager kept saying "We understand Anne Marie you have a medical condition and as a result you get terrible headaches and your hearing is an issue.  We understand you have many Dr appt because of your condition."  Yeah right    Understand my behind!!!

Okay I vented,
Anne Marie

[Static]

WHAT???  You were actually penalized for taking sick days you were allotted and they know you actually needed them because of the AN situation and your "condition"?    What kind of horse**** is that?  Vent, I think I'd have to stick my foot up someone's arse!  You have alot more patience than I do.  I seriously think I would have gone a little ballistic on someone  if it was me!   I'm annoyed at them for you too!  What the heck is wrong with people these days.  Doesn't anyone have any compassion anymore?   

[marg]

Anne Marie was anything said like.....the reason you didn't get a larger increase (like the others) was because of  your use of sick days (that you were alloted) ?  If you didn't go over your sick time I don't think an employer can penalize you for use of sick time provided.  I think I would check it out at a higher level.  How can they  penalize you if you are staying within their guidelines?
   What a crummy deal !!!  If you are being finanicially penalized because you're not doing you job as well as the others - that is one thing but if you are being penalized because of your medical condition that is a whole other issue and one you should be able to pursue. 
   
Margaret

[OMG16]

Just a small disclaimer before I begin to vent.  My son does not have an AN (he has brain tumor with some of the same issues) and his complications are very rare.  Newbies do not be afraid as everyone is different and most surgeries go well.

This is very hard for me to say so I will do my best.  We were told after surgery that we could not say anything to anyone.  Now after the fact we are told we still can not be specific.  So I will try to vent but in some cases I will have to be vague.

We did all the right things and still ended up with a questionable surgery.  We only found wonderful things out about how our son's surgery would go.  Had I known that the research is only as good as the researcher and how they can get away with a no major complication or fatalities in their data if they some how relate it to a previous or unrelated post op complication then they do not report it.  This is not true in all cases it is only true that I know of in our case.

So my son has suffered severe complications and still has the brain tumor.  We were told half of it was removed and a MRI taken days after the surgery show none of it had been removed.  I am angry that doctors sometimes don't tell all and sometimes they do not tell you the truth.  With information we have power and we were not given that courtesy.  I am angry that some of the AN members are being told that their surgery was a success when they have post op complications.  We were told that our son's surgery was a complete success.  I am angry I gave my trust freely and did not question this going against my gut feelings.  I'm angry that no one could say anything to us about what had happened due to they had been quieted (very vague here).   I am very grateful for the Doctor that gave us the records that he though we should have before they  were "lost".  This is the only Doctor that we have experienced this sort of thing with so please do not take this any other way that venting.  We have encountered so many caring and helpful providers before this and afterwards also.  We do not trust blindly anymore and that is a good thing.  We talk to his providers now and explain what we expect from them and what they can expect from us.  They have been more than understanding.  I hate to see the posts where providers tell members that it is a non issue or do not even give the courtesy of a returned call.  To me that is unacceptable and am sorry that this happens.  That just increases the stress of an already stressful situation.

I sometimes wish we had the pre surgery life back.  Then I think about what my son goes through each day with a smile on his face.  It does get easier everyday and most of the time I am not angry, sad, frustrated or overwhelmed.  Our life now is better than before surgery.  This has made us realize how lucky we are and we all are better people because of it.  I do miss not being able to just go and get my hair done without getting someone to stay with my son.  We no longer have the freedom we took for granted.  I now need to work full time due to the finacial strain it has put on our family.  I am very greatful that I am allowed to work at home so I can be home with him.  We no longer own our house due to the bills that go along with having a tumor.  I am sorry that my son can not experience college like all of his friends that started this year.  He can no longer drive.  He has social and cognitive issues that create a huge social barrier with people his own age.  The upside is he does not realize this most of the time.  Also while my friends are dealing with an empty nest we do not have to go through that.  This is selfish on my part but still a great complication.  I'm worried that the tumor will grow and cause additonal problems.  I'm angry that he can not use one side of his body, that he has headaches, nausea, vomiting, dizziness and visual problems to name a few.  I wish I could find a support group for him as the ones we have attended have been adults and they were even talking about adult relationships freely which we did not think was appropriate for a 16 year old.  I'm sick of being tired trying to do it all.

I do not want to scare anyone.  I only needed to vent and tell our story.  I didn't even realize it until I started reading this post.  I wish I had the information I now have before surgery.  We were told by a Counselor that we were chosen(so to speak) for a reason and that maybe it is to help other people and prevent them from having to go through what we have gone through.  If anyone needs anything just let me know.

Captain Deb I am sorry that you have such severe headaches and can not get the disability that you have a right to.  Phyl I admire you very much as you have been through so much and give huggles freely when anyone needs them.  I feel as if I know you being a guest for almost 3 years.  If you need to edit/delete this post I will understand so please do so if need be.  To the rest of the forum I look forward to getting to know you through your posts.

To end on a postive note I am very thankful for wonderful supportive Providers that he has had and does have.  I am blessed to have a Husband who loves me even after all of this and after 26 years (high school sweethearts).  I have a very supportive Family and friends who seems to know just when I need help the most and step in without me even asking.  Last but not least I am thankful for this forum.  This is as far as I'm concerned the best.  16