ANA Discussion Forum
AN Community => AN Community => Topic started by: stoneaxe on April 08, 2009, 10:37:52 pm
-
I came to the forum just with the idea of sharing my story of what standup paddleboarding had done for me in a place where it might do the most good. I'd thought I'd come in post a bit and move on. I didn't feel like I needed much in the way of support. I was thinking if I could help a few others it would be great. My life is pretty good! Little did I realize just how much good it would do me to talk to people who truly understand what I've gone through, what I'm going through still. Even my wife who is the rock I lean on everyday can't fully understand how frustrating this thing is.
I hadn't known of the forum prior my new years eve post I wish I had, especially back when things weren't going so well...it would have been great to find such caring understanding folks back then. The wealth of information coupled with a compassionate delivery makes all the difference in the world. Witnessing the strength of others that are struggling with much tougher issues than my own inspires me everyday to do better, to work harder. Thanks so much for being here.
-
Bob, I'm so glad that you found this forum and funny that you came to give support and you found support as well.
I myself have found invaluable support here and have even made new friends IRL because of it. I can only hope that I can "pay it forward" in a way that would honor what I've gained here and more. The members here are so willing to honestly share their experiences, it doesn't get more real than that. So, I'd also like to say "Thanks so much to all of you". I'm afraid you're stuck with me. :)
-
Bob, What wonderful words you have said. I agree 150%.
And i know it is hard to express - like the words are just not enough...
I love that movie, Pay It Forward, Anissa!
I believe everyone who contributes to the forum, past, present and future have/are/will 'pay it forward.'
God Bless the forum.
Sue
-
Add me to the list of those who appreciate what everyone does here. I was a wreck when I was first diagnosed with an AN. I found much courage and strength from everyone here to face my fears, and so much knowledge; I knew I could survive anything. It means the world to know we are not alone and can talk to people who understand. I too hope to be able to pay it forward in any way I can. My husband Richie will probably like to post his own experience too (he had to go back to work this week, that’s why he hasn’t been around too much), but I know having everyone’s support meant the world to him too.
Scarlett
-
The ability to read how others who have 'gone this way before me' have done and what they experienced has been incredibly helpful for me in my journey. When one makes that turn from one recovery obstacle to another and can find out that others have gone through the exact same thing and you can read their advice as to how they delt with it is both reasuring and helpful. Somehow even a painful stage is not so bad when you know, 'it's not just me.'
Add me in for the group thanks!
Neal
-
I have to agree that the ANA forum is the greatest. Facial paralysis is a rare complication following microvascular decompression for hemifacial spasm, which is what happened to me. Before my surgery, the HFS forum was a great place to hang out. Afterward . . . well, people were very nice, but there wasn't much information to draw on. Here there is a whole section dedicated to facial issues. And, since facial paralysis is much more common following AN procedures, many more people who understand what I am going through.
Once upon a time, I was asked to leave an Al-Anon meeting at a hospital because my then-husband had been using drugs, not alcohol. Never mind that they are related addictions, and never mind that the hospital did not host Nar-Anon meetings. I have never felt so abandoned in my life. Here, I have been completely welcome, and sometimes I have to remind people that a different disorder that brought me here.
Now I am an expert on two rare neurological disorders. Beyond the personal support I have gained here, when a HFS forum member posted that her nephew had been diagnosed with an AN and asked if anyone knew about neurosurgeons specializing in AN, I was able to direct her here.
That was my first opportunity to pay it forward. I hope that I never have another, simply because that means someone else will be suffering from an AN, but if I do, I'm so glad that there is a place like this to direct people to.
Have a great Easter weekend, everyone.
Sara
-
Thanks so much for being here.
no, thank YOU! It's folks like you that make it all the worth-while here... so, thank YOU for being here! :)
See ya at the brunch!
Phyl
-
from Phyl: no, thank YOU! It's folks like you that make it all the worth-while here... so, thank YOU for being here!
I second that emotion too (I'm getting very emotional, and wordy for me today ... already posted another emotion in the NE Brunch! Must be the extra caffeine & chocolate I've been inhaling today ... )
I don't post too much (shy), but it is wonderful to have all the folks that do post on this forum, both for info and support. I know I've missed thanking people before, or giving my own support when needed, but Sara is right. To "pay it forward" means a lot - new friends, new family!
Thanks for being here!
Elaine
-
Bob, Steve, Anissa, Donnalynn, Sue, Scarlett, Neil, Sarah, Phyl, Elaine, et al ~
I heartily agree with the contention that the people who post make the forums valuable. Folks just like you - as well as many others. I think we're all trying to 'pay it forward' every day and to see this outpouring of appreciation for the site/forums is very moving - as well as encouraging. Thanks to everyone. :)
Jim
-
I am so grateful for this forum. For me it is a life line and a community. We laugh, we cry, we pray and cheer each other on. My husband and sons tease me so much about my so called "addiction" to this forum. Its a good thing they do know how much everyone has helped me deal with my problematic facial neuroma. All of your battles have enlightened me so. What I really love about this place are the success stories and how encouraging they are to my soul.
This community is virtual but the kindness and good will is heart felt. I have suggested to my family doctor to look us up in his spare time, because he was afraid all the postings would be negative. The only negative thing around here is the odd tap on the knuckles when someone hijacks a thread. ::) Not that I would do such a thing....hijack that is!! ::)
I want to thank you all also for being a very, very important part of my life!
Thank you,
Anne Marie
-
Without the ANA, there would be no forum, which is why I'd like to suggest to all those who find it as helpful as I do that you become a paying member of the ANA - if you aren't already.
Membership is not mandatory but the ANA could not do the great things it does without financial support. The ANA uses membership dues and contributions to pay for the informational literature they send to newbies as well as doctor's offices. If it wasn't for the ANA's literature that I picked up in my neurotologist's waiting room after my AN surgery I would have never heard of the ANA - and my life would be a lot different than it is today.
Money from dues is also used to publish Notes and pay ANA office staff, which among other things includes a liaison for the local ANA support groups. And then there is the care and maintenance of the ANA website and this forum - which as we all know doesn't require us to pay a user registration fee.
Membership dues are, IMO, pretty minimal and they're tax deductible. Especially in these hard economic times I think it's up to those of us who have been helped by this forum to help support the ANA and what it stands for.
I would have hated to make my AN journey never knowing others who had walked in my shoes - and I can't imagine not being able to help those who come after me. Helping the ANA grow and thrive is very important to me and hope it is to others too.
Jan
-
Jan, Thank you for all that information!
In the back of my mind, i probably knew what the dues are used for, but this detail really makes me aware how much 'good' those dues can do!
I appreciate all you do on the forum as well - you, Steve, Jim, Phyl, et al.
Take care.
Sue
-
Amen to what Jan said.. That's one of the reasons why I am a member also. I also highly encourage anyone else that uses the forum to any degree of regularity and found the ANA information they picked up through their doctor helpful to become a member. Like Jan, I would have probably never known about the ANA except for the ANA Information that was given to me by my doctor's office. The rest, shall we say, is history. I shudder to think what my life would have been like without the valuable insight, advice, answers, etc.. that I got from this forum when I needed it the most. In a disposable world where most things that we spend our money on are fly-by-night and don't provide much long lasting value, this forum stands out as something tangible with tangible benefits to a lot of people.
Okay, so I'll parachute off my soap box once again... (thanks for giving me a shove Phyl!) WHHEEEEEE!! :)
Regards,
Brian
-
Ok... in the words of our fearless PBW leader... "gawd, this is getting schmaltzy!" :)
such a love fest! Geesh!
But, I 2nd Jan's comments and thank her for sharing all she shares (incl her love and good ear on the WTT!) :) But, don't tell her I praised her. She'll never live it down :)
Oh, btw, my Pooter, the soap box is now shorter in height. Feel free :)
Phyl
-
Hi Bob and all the others,
Thanks for sharing and reminding us all how we can both contribute and help others as well as receive help and encouragement for ourselves.
And I agree with Anne Marie - I wish doctors could see what a positive place this is. Some do seem to have the misconception that the only ones hanging around here are those who are negative. I think being scared and needing to vent, etc, is what we're here to offer support for, but I find the forum incredibly positive, encouraging and helpful. I do intend to write my doctors to tell them just how helpful the forum is and the value of passing this info along to other AN patients.
Keri
-
Keri -
I think it's a great idea to tell your doctors just how valuable the forum is. I've told my neurotologist so many times, he's probably stopped listening :D I also mention the ANA just about every time I see him, because I want him to tell all his AN patients about it.
As patients who have been helped by the ANA, and by this forum, I don't think we can tell our doctors enough just how positive our experience has been. There's just nothing like connecting with a group of people who can relate to the whole AN experience - and while a doctor can tell you his experience, unless he's had an AN, IMO it's just not the same thing.
Jan
-
Well said Bob! This forum and the lovely people here have been an instrumental part of my recovery!
Hugs Michelle :-*