A place to vent

[linnilue]

I moved the topic to AN Community , I hope no one was lost in the move!  I do ask that we tone things down a bit or move this to offline PM's .. as Phyl stated,  we don't be a downer or scare newbies off! we all need to vent once in a while.. but like at the office .. I close the office door first     

I prefer open doors.....

I wouldn't be on the net reading about Ans except that I want to know things, all things.....

I don't eat candy either.

Touche'...

[nancyann]

Well, maybe I'm a little off (nothing new) - but I don't care where a post is placed, if I'm interested in the subject I read it.  Things like 'moving a subject' or having my words 'censored' (when inappropriate for a G-rated forum)don't bother me.  Nikynu, I apologize if I hurt your feelings - alot of times things that bother others don't bother me, sometimes it's a good thing & sometimes not ( look at the mess I'm in from NOT doing research, etc.....)   Always good thoughts to all on this forum, Nancy

[linnilue]

No offense Nikynu, but I don't see a problem with just 'moving' this subject to the appropriate site of AN Community.  Lighten up my friend, we've got bigger issues to fry.

  I'm not sure I understand what you are saying?  If we have bigger issues to fry then why can't we fry them in front of the general population?  You, my friend may want to rethink this ambiguos statement especially if you believe that we/I have bigger issues to fry.

[nancyann]

What I mean is I don't see the point of getting angry over where a subject is placed by one of our moderators - I try not to 'sweat the small stuff' - but if this has you in a tizzy, blast away ! (the subject is "RE: a place to vent") Nancy

[BB]

OK, DID WE HIT A HOT TOPIC?  I HAVE BEEN MORE OF A READER OF THIS FORUM, THAN A WRITER.  THAT'S JUST ME, BUT WHEN THIS SUBJECT CAME UP, IT HIT REALLY CLOSE TO HOME. I COULD RELATE SO MUCH WITH WHAT EVERYONE HAD TO SAY, AND IT HELPED ME TO KNOW THAT I AM NOT ALONE WITH THE THOUGHT'S I AM HAVING OR PROBLEMS I AM HAVING.  I AM ALMOST ONE YEAR PAST SURGERY.  I DO GET VERY DOWN AT TIMES AT MY PROGRESS.  SOME DAYS I FEEL GREAT.  MOST DAYS THERE IS ALWAYS SOMETHING OUT OF WACK. SOMETIMES JUST NO ENERGY.  JUST AS NEW PEOPLE ARE JUST DISCOVERING THEY HAVE A AN, WE WHO HAVE BEEN THROUGH SO MUCH ALSO NEED HELP AND ADVICE AND ENCOURAGEMENT AS TO WHAT IS NORMAL AND WHAT IS NOT.  NOT THAT ANY ONE WOULD KNOW FOR SURE, BUT THERE IS A LOT OF VERY EDUCATED PEOPLE, AND PEOPLE WHO HAVE REALLY RESEARCHED THEIR STUFF.  I THOUGHT I DID, NOW I AM QUESTIONING MY DECISION ALSO.  IF I HAD HAD SOME OF THIS INFO, I WOULD HAVE ASKED THE DOCTOR MORE QUESTIONS, WENT THE EXTRA MILE THAT I THOUGHT I HAD.  LIFE IS PRECIOUS, BUT I THINK WE ALL GREIVE OUR OLD SELVES AND WHAT WE USED TO COULD DO.  I HOPE THIS PROCESS WILL PASS, OR WE ADJUST BETTER TO IT.  I'M A LITTLE SURPRISED AT THE RESPONSE OF MOVING THIS SUBJECT.  IT DOESN'T MAKE ANY DIFFERENCE, BUT WHAT DOES IT LOOK LIKE TO TRY TO HIDE IT.  JUST MY THOUGHT.  I DO APPRECIATE EVERYONE ON THIS FORUM.  WE ARE ALL IN THIS TOGETHER.  THE GOOD, THE BAD, AND THE UGLY PART OF THIS AN THING.  THIS IS WHERE A LOT OF US ARE AT RIGHT NOW.  SO BE IT, LET US WORK THROUGH IT.  THANKS

[Jeanlea]

I like this thread.  It helps so much to know that there are others with similar problems.  I had a larger tumor and surgery was my only choice.  It was pressing on my brainstem so it needed to be done quickly.  I went into the hospital with the brightest of spirits.  I truly thought I would come out the same as I went in.  I knew there could be complications,  but I didn't think I would have any.  Well, I came out almost the same as I went in.  Just lost a balance nerve, hearing in my left ear, no more feeling on the left side, no more movement on the left side, my vision has never been normal due to all the lovely lubricants I have to keep in my non-blinking eye.  My left side is a bit weaker than the right, too.  But each day I go on like I'm the same as I was before.  People tell me I've taken this all so well and have a positive attitude.  If they only really knew how I feel some days.  It's nice to come to a place where people really do understand.

[GM]

Well I feel I should say something since I started this...mess?

I originally started this post because I was coming up on my annual MRI...which I hate by the way...and I had no one to talk to about this.  My wife worries when I talk about my AN, my family wonders why I still "have it" since I had GK, and the people at work don't have a clue...nice bunch...but clueless.

I figured I had the right spot since it stated:  "AN Issues - Feel free to talk about anything AN related in this board"    I felt that since I have a AN...and I feel this way because of my AN...it's AN related...make sense?

I understand that newbies can get scared...hell...aren't we all scared at times?  That headache, the eye twitch, wondering if we'll be able to support our families with future income...sounds pretty scary to me.

You run the site therefore you make the rules, but to "one-side"  a conversation is like continuing to teach that the world is..."flat."

Gary

[Raydean]

In the past few month i had wondered if there was till a place for me on this forum.  I am thankful that I still have a place here. 

Since this is a vent thread I'll start with what was Chet's biggest vent.Surprisingly it wasn't any of the medical conditions, or even the Doctors.   He absoultely reacted to the term "horror story" in reference to someone having a poor outcome.   Persons  with outcomes seldom refer to themselves as a horror story, nor did he see himself as a horror story,  what was, was. A horror story is something you watch on late night TV, or a  scary novel, it wasn't someone's life.  It's kinda funny now because if you only knew how many times that I censored and cleaned up his replies when the term "horror story" came up.

I think Gary came up with a fantastic and appropriate thread.  We all need a safe place to vent.
Looking back over the years it wasn't the big stuff that happenned that caused a need to vent, but the accumulation of alot of little stuff.  Big stuff, adrenalin kicks in and we go in overdrive, but that small stuff sure  adds up, you know the straw that broke the camel's back.   I would hate to see anyone leave the forum, be it a newbie or postie. because of having to watch how every post is worded in fear of offending or scaring  I believe that the vast majority of posters show responsibility in there postings.  It's important to remember that while each of us has the AN in common, each of us has a different different story to tell.  each person's perspective is valid. 
Each AN journey is as individual as the person that hosts the tumor.  What makes the forum  special is that we all fit no matter where we are on the journey, there's room for all.  It would be a disservice to both the newbie,  postie  and AN community as a whole if only the positive was allowed.


Hugs to all
Raydean
 

[er]

GM’s comment, the eye twitch, wondering if we’ll be able to support our families with future income is a big issue.  :(And I do agree with him. I do know that everyone is different. If I had to do the surgery again, yes, I would do it. My life is important and I do enjoy being around my son’s and their families. But we are here to support each other. I wish I could hug every one
Eve

[Jill Marie]

As I read EACH post I find myself wanting to reply, to tell you I agree with how you feel about being able to Vent, I understand your frustrations with the medical community, your work & your friends.  I made a few notes about some of the posts so I could reply so hear goes:  Gary -thanks so much for starting this thread; Lainie -  Let's hope that we can get back to venting about our medical issues instead of venting about not feeling it's ok to vent: Gennysmom - I understand the problems of adding medical ailments on top of our daily issues, I figured having a tumor change my life should be enough for one person, guess I was wrong; Lori - let's hope that our worries about our job being in jeopardy is just over worrying because of our medical issues, I often find myself over compensating for what I can't do as well as others as I don't want them to feel like they have to do more because of my limitations.  They don't see it that way, don't judge yourself harder than they do.  We all have strength and weaknesses.  TP - Yes, here we can see ourselves experiencing the same things others do, here we are NORMAL! 

Our youngest son is in the Military and he told me one of the hardest things for him is to talk to friends and family about his life now as we don't understand the Military language or the way they do things.  Then when he's with his comrades they don't understand what his life before the Military was like.  They best thing for him is getting to talk to friends and family members that have joined the Military as they can speak his language and understand both sides of his world.

We have that same opportunity here, we understand what it's like to have a Tumor, but we don't know how the rest of our lifes are, if we truely let in both the good and the bad then we can get to really know one another! Jill

[Dealy]

Gary-As far as I am concerned-you need no apologies. When I first found out I had another tumor-NF2-after being-so I thought free of these monsters after 18 years-I searched the Internet for answers. Got on a small group where Gary_GM was a member also but they all had GK. I was the only NF2 and the only one comtemplating FSR. Still I figured Radiation is Radiation and these people-Gary included helped me so much After FSR I would dream that things would surely improve now and I would be on the fast road to recovery. The smaller group stopped replies and I felt I still needed input and too talk and relate too people that may have AN's and if I am lucky another NF2. Well I hit it on this forum. If I had found this before I may have decided on another route-especially considering CK. However-that is water under the bridge now because I got FSR with the info I had at that time and have too live with the consequences good or bad. I found only one person on this site that I would consider offensive and that person is no longer here.We all share one thing in common-an AN. Some have more other's less to deal with. When I had my first tumor in 1988 that was surgically removed-their was no one too talk to or relate. I came out fine and forgot about my AN and SSD. If I would have had this site -perhaps I would not have been MR. STUPID. I never had an MRI after my first surgery in 1988-thinking this was gone and I would never see another of these again. My surgeon back then told me ever 5 years too have an MRI. I was more concerned about saving money and hoping too forgot I ever had a tumor called an Acoustic Neuroma. Well I found out they can return-whether surgery or radiation and now being an NF2-well I never even gave that a thought in 1988. People-this is a lesson I learned the hard way. I am now paying the price for my stupidity and being naive. Information is the most vitial component to making a decisive decision. I have learned more on this site than I have when I scanned the Internet myself for 3 months. Love you all-Have a good day. Ron

[Maude]

I am a newbie and am going to my specialist in about an hour. I have three things to share 1) a personal vent, 2)on the site in general and 3)  a comment on the moving of the discussion
1) In December I went to our college president's home for a christmas event. As I was leaving, I realized the front stoop had one step but no guardrail. Knowing my balance problem, I spread out my arms slightly to get my balance but was unsuccessful and tripped down the stairs anyway. My president shook his head, laughed at me as being the ultimate klutz and told me , you throught you would trip and so you did. I was humiliated and told him, no, it was my ear. That moment, while small compared to the vents of after treatment, keeps ringing (no pun intended) true to me. I know regardless of what happens in the next few hours (wait and watch again or follow a different treatment plan), I will have a personal journal that is fraught with joy, sorrow, anger, and fear.
2) I appreciate the place to vent my sorror and fear (for today). I also understand everyone has different levels of anger, fear, joy and fear depending on the day and the person. I have read all these vents and can see each person's journey. It is scary, it is overwhelming for a newbie but no more so than the literature. There is a human element here that touches my heart. I know and feel for each person's pain and frustration.  3) having spend 10 years of my life as an award wining journalist I can say that our freedom of speech has not been compromised. I think the moving to a different venue is correct because it is a private reflection shared among those who really understand. It is still public and non censored. Freedom of speech comes with responsibilities as does this forum, there are clear guidelines. I find it the most open and supportive venue for me (remember I am a newbie, I reserve the right to change my mind later on). I thank the association and the members for providing this opportinity. While sometimes the "warts" in warts in all are unpleasant; they are real. I hope not to dwell on the warts for I am already struggling with my own downward spiral of discontent.

[linnilue]

Dear Gary,  You did not start a "mess."  This is a site devoted to an patients and their issues.  It is full of very important information right form the "horse's mouth" if you will.  I am amazed myself at the response.  I believe this is about "free speech" and if  the moderators choose to move it because "they" feel that it is too raw or scarey for newbies, that's where I have a problem.  In my opinion that is censorship that is unnecessary since the information is factual and unbiased.  I think that that is what everyone is looking for since most of us don't get the real picture from the physicians.  We look to each other for the truth and that is why I am upset that this thread would be buried in a place that is difficult to find.  I had trouble finding it once it was moved and therefore a "newbie" would have much greater difficulty.  Wasn't that the purpose of the movement?  To sort of hide the thread because of the truths of the information.  I don't think that that was fair.  We are all here helping one another every single day and to move a thread because of it's "scarey" content is not fair to anyone.  Venting is extremely important and  I think we all deserve the right to be listened to by those who KNOW.  If you read through all the entries the common thread is that you can feel very much alone with these tumors but on this forum we share with each other the knowledge that we have all experienced firsthand.  This reminds me of the recent policeing that has been happening on the major news channels.  I am glad you vented Gary, keep on doing it, everybody keep on doing it.  There is nothing distasteful in anyone's responses.  I feel like we are writing for the rights of free speech which is at the core of this site.  

[Gennysmom]

You guys are all just amazing.  What warms my heart to this thread is that the more I read, the more I feel connected to you all because I can tell by your voices that while specifically different in your stories, we all have so much in common....something I don't really feel in new non-AN friends.  It brings to me a feeling of community and normalcy, something I have lost in this journey.  We all struggle to find the "new normal" and this is the one thread that I have felt closest to the "old normal" with, if that makes any sense.  To lose this feeling because of policing would just be one more loss and the proverbial "straw that broke the camel's back" for me....let's leave us be and stop all the losses and chalk this up to a great gain.  Hugs to you all.

Kathleen

[Captain Deb]

OK Here's my vent.
I &*%$ hate these  @*&%$ headaches I  *@#$% wake up with in the  #$@%^ morning.  I $%#@ hate not being able to *&%$ hear the  $%#@ TV unless it's &*%$ turned up so  *&$% loud it gives everybody else in the $%#@ room a $%&* headache! I'm %$#@ mad as &*%$ at my local neuro who waited for  three $%*& years to refer me to someone who could actulally &*%$ help me with the *&%$ headaches!  I hate @#$% spending $250 a month on @#$% meds! And I really hate the $%#@ Social *%#$ Security people who've #$%^ put me off for @#$% four years as a #$% tax-payng citizen for 40 *&@# years, and won't give me my $%#@ money!

But I #$%@ LOVE you guys!!!!

Capt  @#$% Deb
cussin' like the true $%# sailor she be!