A place to vent

[msuscottie]

We're gonna need you to clean that up a bit Deb   

[Sue]

Just want to say that I appreciate the good work done by our "hosts" aka Mom and Dad, and I appreciate that there is a Forum that we can all turn to for information and also as a place to articulate our frustrations and fears.  It's good to write things out and let off a little steam.  Thank goodness we can do that.

Correct me if I'm wrong, but I think that quite some years ago there were some problems on this site insofar as personalities and opinions regarding treatments etc. that got out of hand and caused some sort of ruckus. I'm thinking that there are watchful eyes now to help avoid those kinds of blowups that can cause hard feelings and ultimately damage the Forum. 

Is this some of the reason, Mom and Dad? 

Sorry, I'm in a hurry, gotta go....I may have not stated this exactly right.

By the way.....HELLO RAYDEAN! 

Sue in Vancouver USA

[matti]

Not sure this is really a vent, but may be more classified as "a day in the life with single sided deafness".  I was a lttle early for my meeting this morning, was sitting in my car reading and kept hearing someone's car alarm going off. Having SSD I had no idea which direction it was coming from, so kept on reading. I noticed a guy waving at me, so I wave back and then continue reading and listening to someone's annoying car alarm. Another minute or two pass and same guy comes up to my window and says "you must either be deaf or can't figure out how to turn off your car alarm".  I turned 10 shades of red and could do nothing but laugh

Cheryl

[Mark]

Every once and a while there is a thread that inspires a lot of dialogue and this is clearly one of them. I generally stay out of these exchanges because I never feel there is a lot to contribute as the subject by it's nature lends itself to articulating one's personal perception which is valid for them.

I was somewhat surprised and disappointed to see some of the criticism pointed at Joef and Phyl as moderators. I think they have done a wonderful job maintaining this board and creating a good environment for all of us with AN's to interact. Being involved myself currently and in the past with support and not for profit groups, I also have a tremendous amount of respect for those who dedicate their time in that way. I haven't met many folks with a surplus of time in today's world. So, my hat's off to both of them.

So, at I'm sure some personal risk, I'd like to offer my perspective on a couple of issues that seem to pervade this thread.

1) Moving a thread to another category is NOT censorship, it's organizing where it is either a) connected with similar subject matter or b) more easily found by others seeking that type of commentary. With the exception of vile or generally offensive language situations, deleting a thread IS censorship. I don't see where that happened in this case. There is no secret password to the AN Community category that restricts access and the new posts are visible to everyone. It is out in public to anyone who wants to read it. I don't follow the logic where censorship has occurred at all.

2) I understand the need to vent and / or connect with others who have faced or are dealing with similar challenges related to an AN. It is a major purpose and function of any support group and absolutely should be a component here. On the other hand, I believe that members of an open access, public forum such as this have an implied obligation to assist and provide information to the newly diagnosed people in an objective and balanced way. By definition, vents and rants are deeply personal expressions of frustration or other emotions of an individual. Unfortunately, I have seen many instances where posts written in that state of mind make statements about one treatment or another in general or misleading terms based on that one person's experience. In my view, that is a disservice to those seeking good information in their own journey. It's not about sugar coating or hiding any of the truly worrisome outcomes that we all know can happen. It is about making sure they are couched as a personal experience and not necessarily representative of the norm. I may be in the minority with this thinking but I truly spend time here out of sense of trying to help people with information. I recognize that some folks are here for their own personal issues which is absolutlely fine, but I would suggest that if what your posting is purely emotional that perhaps it does belong in a PM as was suggested. Please be aware that what you post here is very PUBLIC. New readers don't always know how to differentiate between what is common occurrence and what is one individuals issue out of thousands. I think forums like this can be effective in meeting multiple needs of people and I think PM's and categorization of threads are useful tools to integrate the diverse needs of the group.

While I'm sure others will disgree, that's my 2 cents

Mark

[krbonner]

Not sure this is really a vent, but may be more classified as "a day in the life with single sided deafness".  I was a lttle early for my meeting this morning, was sitting in my car reading and kept hearing someone's car alarm going off. Having SSD I had no idea which direction it was coming from, so kept on reading. I noticed a guy waving at me, so I wave back and then continue reading and listening to someone's annoying car alarm. Another minute or two pass and same guy comes up to my window and says "you must either be deaf or can't figure out how to turn off your car alarm".  I turned 10 shades of red and could do nothing but laugh

Cheryl

I hope you don't mind me saying this, but that is hysterical, Cheryl!!  And I really needed a laugh right about now.  Sounds exactly like something I would do!!!   

Katie

[Captain Deb]

OK, folks,  now that I've read all of this thread I'll put my 2 doubloons in as well.

So this thread got moved. Boo hoo.  I'm sure it was discussed among the forum admin, 2 moderators and the director.  These people, sans the director, are unpaid volunteers who give their precious time and energy to create a positive place for us to get the help we need.  And this isn't exactly a "public" forum.  It is bought and paid for by the ANA, without which, most of us would have had sugery or radiation by our local small-town yayhoos instead of finding the centers of excellence which, in some cases saved our very lives. If moving this thread has created a more positive place for newbies, so be it.

It now lives in the same category as the Good Morning thread, which is another place for us to blow off steam using imagination and humor. At one time the GM, as we regular posters call it,  was threatened with extinction, but was saved by input from the people reading it and posting to it.

Personal attacks (flaming) around here are really inappropriate and have happened in the past, but the flamers either have left voluntarily or have had their butts shipped on outta here. I believe we were asked to tone it down due to it's location in an information finding area.  Rather than having to spank anyone, they shifted it to the community section, where toning down is not necessary. Fine by me.

That's my story and I'm stickin' to it!

Capt Deb

[Windsong]

You know, the word "vent" is one i always understood to be something one did to vent something like that which comes out of a laundry drier hose for example, or , well you get the picture. Interesting what the dictionary says:   "an opportunity or means of escape, passage, or release.... "(quite different from a rant I think) or  " an opening for the release of pressure". It's also a "slit" or "fissure" ( from the French... fendre to split.....

In any case, I think hearing one has an An, then finding out the treatments available and if one even has a choice of treatments for that An, then having the treatment, and  moving on from whatever that was....(dealing with after effects; altered things in life; change in so many things or maybe very few or none at all) .... well all that does mean that no matter how serene we are in hearing about this and dealing with it that some pressure does build up somewhere and there may not be places to "vent" that pressure.  Certainly not at work;  or with strangers one meets during the day   ;   ;  family is perhaps too close to it or not "there" to begin with;  significant others are so close to it all along that they may not want to hear more... and so on. Thus, what better place to  "vent" than here on an An board, one which has on its home page "An Discusssion Forum" as it's Banner line,  and when one reads down the various listed sections, also has all sorts of places to speak specifically about things....like hearing/balance/ and pre and post and so on......?maybe we should have a Vent section ( it would be a healthy thing) or even "Side Issues That Crop Up Now and Then"

It's great to see that we have a place to do this here, as the reality is that it's the little things that can often be that straw someone spoke about (and those straws are things one wouldn't be dealing with pre An) and venting is good for blowing that straw off so the pressure gets removed nicely and calmly and easily and everyone can get on with life. And smile after and feel OK.....

Great we have this board....
semantics gets tiring after a while though....

all the best to everyone.....

[ppearl214]

(Cheryl, you need to set that car alarm on vibrate, hun!  )

*slowly walks up to microphone, trying to dodge tomatoes and eggs being tossed at me..... stands in front of microphone, taps on it with finger 3 times.....*

Testing, Testing.....

Ahem... hello all... I am Phyl, Cruise Director of the PBW and ANA Web Policewoman and I am here to officially vent regarding my AN.

*clears throat*

I started my AN journey just shy of 2 years ago.  I had already been diagnosed with pancreatic cancer (curable, not the kind that kills you in 3 months).  Complications arose and I had to have a head MRI... well.... lo and behold, I was diagnosed with Chiari 1 Malformation AND and AN.  Now, I was the one working out in the gym 6 days a week, power walking 4 miles in 47 minutes every morning, even in the snow.  I now walk with a cane due to the Chiari 1.  I can't tell if my balance issue is due to the Chiari or AN.  I can't tell which is causing the vertigo.  I hated the fact I had to tell my family, esp. my folks, that they had ANOTHER daughter diagnosed with a brain tumor, after losing my sister to brain cancer.  I am tired of not feeling well. I miss my workouts. I miss my power walks.  I dislike the fact that I have gained 30 pounds (just over 2 stones for you Brits! )  I want my old body back. I want to be healed of all that tries to fail me.  I hope this "booger" in my head dies and dies fast.

*wipes lone tear from face*

So... nuff said.  I have had my vent, I appreciate you all listening... .oh, and btw, for those of you that have said kind words about me... not only do I thank you, but your money is in the mail.... (truly.. thank you).

I thank you for listening to me....please vent on.

*smiles at everyone and walks off stage*

[BB]

I FEEL FOR YOU AND ALL YOU HAVE GONE THROUGH. YOU MUST BE SUPER STRONG  TO ENDURE ALL YOU HAVE HAD TO.  YOU APPEAR TO US ON THIS FORUM SO POSITIVE.  I THANK YOU FOR ALL YOUR HARD WORK THAT YOU HAVE DONE HERE. IT TAKES A SPECIAL PERSON TO BE ABLE TO DO WHAT YOU DO.  THANK YOU FOR LETTING US IN ON YOUR HARDSHIPS, AS IT HELPS US TO KNOW YOUR JOURNEY AND WE CAN RELATE TO YOU BETTER, AND WISH YOU TO WELLNESS.  I DON'T THINK ANY OF US ARE  MAD AT ANYONE, WE ARE MAD AT OUR SITUATION.  FOR ME IT'S ALMOST ONE YEAR MARK, AND I HAVE NO HEALTH INSURANCE NOW.  I CAN PAY FOR THE MRI, BUT THEN WHAT, IF IT IS BACK.  IS THERE ANYONE HERE WHO DOES NOT HAVE INSURANCE? I SEEM TO BE LOSING FAMILY SUPPORT, AS MANY THANK IT'S TIME, IT'S BEEN A YEAR, TIME IS OVER FOR YOUR PROBLEMS, YOU SHOULD MOVE ON NOW, ANY WAY BACK TO YOU.  I WISH YOU LOTS OF WELLNESS TO COME YOUR WAY TOO. PRAYERS TOO, IF YOU ARE OK WITH THAT. THANK YOU AND THE THE OTHER'S FOR ALL YOU DO FOR US, EVEN WHEN YOU HAVE TO PUT UP WITH US ON OUR BAD DAYS.   

[Captain Deb]

I can relate Phyll--the year I turned 50, I was walking around on the beach on St John in a tiny bikini and was a 5 mile a day runner, a size 4, and had arouind and 15% body fat. Now, 4 years later, on the beach I feel like a whale and won't even take off the shorts and I'm online shopping for a bathing suit with a  skirt! It is a total drag not being able to excercise due to exertion migraines and fatigue from meds. My self-esteem and self-image suffer greatly with my extra 20 pounds (I'm a shorty and it really shows.) The weight bothers me, but the loss of muscle tone bothers me more. I feel my cardiovascular system is suffering and I won't live long enough to see my grandkids grow up.


Whooooooooooooeeeeeeeeee!!!!  That felt good!!!

Thanks for listening with your  good ears!

Hugs,
Capt Deb

[BB]

CAPTAIN DEB, I WAS JUST OFF TO THE STORE TO TRY TO FIND A SWIM SUIT TO HELP COVER THIS WEIGHT I'VE GAINED TOO..  A SKIRT OR LONGER SHORTS, SOMETHING TO HELP HIDE THIS BODY.  HOPE YOU FIND SOMETHING AND HOPE I DO TOO.  I MAY NEED TO COME BACK AND VENT ABOUT THIS SITUATION. WISH ME LUCK.   BB

[Gennysmom]

I can tell you all with certainty that the weight thing gets you down, after my surgery I gained 20 lbs.  When I was well enough this last January, I joined WW, and have gotten those 20 off by diet alone, as I can move but wouldn't of called it "exercise" in my past life.  It was like the weight of the world was lifted off my shoulders when I no longer had "post-surgery" weight.  A huge mental block was lifted as well, and I feel like I'm just that much further along in my recovery, just because I have one less noticeable trace that I've had surgery.  It's worth the effort if you can find the strength to accomplish it.  Finding strength these days, I know, isn't as easy as it sounds.

[Windsong]

I too can relate to the bathing suit bikini, weight gain , loss of exercise mobility etc., the 20 lb that felt heavy despite carrying it well enough on small bones, ok height at 5'6, having a cane... even went thru the wear skirts etc.... then due to other med issues decided to fine tune what i already thought of as a healthy diet....plus "talked" to myself about the fact that i might not be able to fix things health wise in certain areas regardless of what i did, but I could "control" food intake, how much/what etc. and thus embarked on a regime that i hoped would take it all off plus make me healthier all around.... Also, I reminded myself every day that this was to be a life style change and so not a crash diet, learn to remain patient, and slow and steady wins the race to use a cliche.... i spoke with someone who was on a hypoglycemic diet (what/how did they eat);  i already knew the WW use of points or flex systems;  i read up again on the whole carbs/ fats/ protein issues etc. I knew that the fish/fowl/fresh fruits/ veggies. no choc/alcohol/ sugar/candy etc made a difference for me with fibro and crps;  i knew from a guy who was a living example that tai chi had let him walk again with bad arthritis and eventually dump his arthritis meds and move up levels in fancy tai chi moves  etc.;  So basically I embarked on a combination of all of that and watched the pounds come off a healthy two pounds a week on average. I told myself the extra 20 did not come on overnight so it won't come off overnight and in two and a bit months it did come off....
It is wonderful to not have that weight on the shoulders. Think of holding a ten pound bag of potatoes in each hand... heavy huh?

Also it was great fun to go out and buy new clothes  (side bonus was decluttering the closets)

Ceecee has spoken of probiotic yogurt and that was something i always have eaten but now i stepped that up too...oh and breakfast became oatmeal and fresh fruit/berries every day (my cholesterol is good lol)

So even without big exercise it can be done as already said here.

I may not be back to downhill skiing or high impact aerobics or treadmills and weights and i doubt i ever will be due to spinal/ muskuloskeletal limitations, heart and so on, but oh it feels good to be thinner again and  know that what i eat is so much better......

Hope this encourages anyone else.

If you start now, just think, by mid August the 20 lbs should be off!  (without much effort! portion control and balanced eating, with more smalls meals a day being better than 2-3 bigger ones)

Happy losing!
W.

[nancyann]

Does that mean I have to give up a Brandy Alexander ?  How 'bout if I use 'fat free' ice cream    lol.....then crying out loud !!!!

[Ellenmn]

Ok ladies I really didn't think about the weight thing much but know I'm worried. I have struggled with weight for years and I finally found a program that worked and have lost over 50 lbs. It's not really a weight loss program but a Life style change. Learning when to eat the different food groups and the portions. But this also included excerising. The thought of putting it back on is really depressing.