ANA Discussion Forum
General Category => AN Issues => Topic started by: Nancy Drew on June 06, 2008, 08:11:55 pm
-
I first posted on this site when I was diagnosed. I wrote for awhile, and then I gave it up so I could coast into denial--since my AN wasn't going to grow (so I thought). Then I'd check in around my annual MRI with all of the anxiety from waiting and then the relief that it hadn't grown. Now that the AN is growing, and I am having bothersome hearing loss, I feel like I am getting carried away with this forum. Maybe it's like a form of therapy for me even though I go to "real" therapy for other issues. I guess there is nothing like communicating with people who have these ANs in their head even though most of us have different experiences and stories to tell.. I just want to say thanks for everyone's support, and I hope I don't wear my welcome out here. Not many people in my life even know that I have an AN so it is cathartic to get it all out here. Thanks so much. Nancy
-
Nancy~
I don't think you can wear out your welcome. I know I have turned into a junkie -- I think my husband is jealuos!! :D
K
-
Nancy:
Please don't feel a need to apologize for spending time on these forums. We're pleased that you find them so compelling.
With my post count I could probably qualify as a forum 'junkie'. :) However, I prefer to think of my time spent here as sharing a fairly unique medical experience (Acoustic Neuroma) and by doing so, supporting and encouraging others who have few other resources to go to that can offer true empathy - an understanding that only another AN 'survivor' can have. Because AN's often present patients with a diverse array of physical challenges - balance, hearing, facial paralysis that can include eye problems, eating issues, etc - we have forums for everything from insurance issues to physician recommendations and a free-for-all board (AN Community). To use a trite baseball metaphor - we try to cover all the AN-related bases. If that means I choose to spend some time reading and posting messages to accomplish our goal of helping AN patients learn, cope and share, I believe it's time well spent.
Now, my wife wants me to "get off the computer and come to bed" - but I'll be back tomorrow. :)
Jim
-
Nancy,
I share you'r feelings. The only reason I am on this forum is because they understand what I have gone through. The ones around us try, but not until you walk in my shoes will you understand and will listen instead of brushing you off. Thank you for reminding me also to thank every one. Thank you all!!!
eve
-
Nancy -
I echo the sentiments of everyone who has already posted. I am definitely a forum junkie - and very proud to be one :D I discovered the ANA and this forum post op but really wish I would have found them pre op. It's a wonderful place and it's very comforting to be able to connect with people who know what you are going through.
IMO one of the best things you can do is mention this forum to other AN patients - if you know any - and you can also impress upon your doctor(s) what a valuable source of support it is for patients. I am on the WWT (willing to talk) list and I always tell the people who call or email me to check out the forum. I also mention the forum and the ANA in general to my neurotologist every single time I see him - and nearly every time I email him. I even went so far as to contact the ANA and make sure they sent literature to his office when his staff told me they had run out.
I share your opinion that posting on the forum - or even just lurking here and reading what others have to say - is like a form of therapy. I know that personally it's been a positive force in my life. I also know that on days when I'm feeling a little down all I have to do is log on and I'll find a chuckle somewhere :) And on the days when I'm feeling wonderful, I try to provide a chuckle for someone else ;)
We're all in this together,
Jan
-
Thanks for welcoming me to be an ANA forum junkie. My posts are adding up. I guess I can give kudos to my AN doc for giving me the info about the ANA when I was first diagnosed. He gave me a whole package of material to read so I'll give him that. Some doctors really don't inform their patients as well as they should. Guess I'll be hanging around now that the AN is growing and acting up. The support really really helps. Nancy
-
Know just what you mean, Nancy. It's bazarre to me how addicted I've become to hanging out here...am very grateful for the forum - not sure if my husband feels the same way :)
-
Nancy,
I have to agree with everything everyone here has said with regard to this forum. I count myself very lucky I found it when I did a general search on ANs. Posting here does sometimes feel like an addiction, but to be honest I would not be where I am phsycologically without the people here. It's a great place to visit no matter how you're feeling and it's wonderful to be able to give as well as get advice and comfort. I feel like the people here have become an extension of my family and could not imagine my life without them now. It's been said before, but I'll say it again. There's nothing like talking to someone who really knows what you're going through. I'm an ANA Forum junkie and proud of it!
Wendy
-
Jan~
You definitely fulfill your desire to provide others with a chuckle (along w/ Steve & Lori)!!! Thank you! ;D
K
-
My four sons have been saying for 1yr now that I'm addicted to this forum!!! Can't argue with them. My husband grumbles sometimes, but he backs down because he's addicted to the Business Channel and the Food Network.
I have met some extraordinary people on this forum. I'm amazed at their strength and courage. Than we have LADavid and Jim Scott who could co-write the next Pulitzer prize novel and screen play ;D
This place has become my second family.
Anne Marie
-
HI Nancy-
Well, from one "foumite junkie" to another - settle in and enjoy!
I've said it before, and I'll say it again - I can't imagine how I would have gotten through the last few months without this group of people. I am blessed to have wonderful family and friends - but no one really knows about this like all of my fellow forumites. I've asked crazy questions, shared fears, and had many cathartic laughs here - and I plan to keep coming back!
Come often and stay as long as you like - this inn is always open and the other guests are wonderful!
Debbi
-
Nancy,
when a comfort level is reached with like minded individuals who can understand...... well, what can you say? :)
*looks at own current post count.... raises hand*
'nuff said :D
Thrilled you are here with us!
Phyl
-
I only found this forum a short time ago-- 1 week before surgery. I am grateful to "know" people who have had the feelings I've had and shared in some of the experiences as well. It's not every day you run into someone who has an AN or is SSD. As you said, people try to understand and God bless them for that, but there's nothing like the real thing :D
Glad you find it a positive place to be--I sure do :)
-
Nancy -
You're in good company - we're all a bunch of forum junkies. The way I see it, I can either complain to my husband about my issues or I can talk to others who might have a solution because they've had them too. I'm sure he'd much rather I blab to you guys instead of him! :D
I've gotten so much useful information and support here. This is definitely a bright spot on my AN Journey...I just hope we end up on a nice tropical island at some point...
Lori
-
Phyl -
I think we should ask the good folks at the ANA to print the posts from this subject in the next issue of Notes. In addition to your article in the last issue, it would be a wonderful testimony to the support found on the forum.
Jan
-
Lori -
I thought we were going to that doctor's private island. Just kidding!
Jan - Your idea is great! Hope Phyl thinks so too!
Wendy
-
You know what guys? Checking this AN Forum Board is like becoming a job. I feel like I need to punch in every day. My pay day is support. Thanks! Nancy :-*
-
AAARRRR Matey!!!! If it weren't for this here forum my noggin' would be in worse shape than it is now!!!!! And so would other wenches and scallywags to boot!!! I've been givin' as well as gettin' so much Headache Wisdom around here in the past couple of circumnavigations around the sun. Not to mention how to navigate the dang Social inSecurity System!!! Mostly I hang out here fer the giggles as I'm a total laugh junkie. Welcome to the funhouse and a dang great source of information for the totally uninformed!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)