Dear ANA Board and Forum Administrator,
As an AN Survivor, I would like to commend the administrator and the ANA Board on what an outstanding job you are doing in providing this forum for AN patients and their families. When I was diagnosed in November 02 I found this forum in its old format and there I found the information I needed to seek treatment at House Ear Clinic in January of 03. This site empowered me with the information I needed to find such a center of excellence, and I can't say enough good things in this letter about the level of care I recieved there.
After treatment, I continued to post on the "old" forum untill my post-op headaches made it impossible to deal with 40 or 50 emails a day, which was about 9 or 10 months post-op. I still sought help from the information collected on the ANA site. This February, I decided to "look up" the forum once again, as my really bad daily headaches had subsided somewhat and I could once again sit in fron of the computer for more than a few minutes at a time.
That is when I found the new format, which allowed me to pick and choose which threads to read, the ability to start a thread on a topic which interested me or with which I needed help, and the ability to send personal messages to people. It's a cyberspace lifeline for me and still is to this day.
With my headaches and SSD, my social life in this small mountain community had come to a screeching halt. Through this forum, I have made new friends here that will be with me for the rest of my life, I hope. It has allowed me to communicate, cry, laugh, and play, all without having to leave the comfort of my own home, which,for this AN Survivor, has made a huge diffence in my quality of life. A small few of us have become very close friends and communicate regularly by phone, even participating in a weekly conference call. We have shared laughter, tears, and even gifts and "care packages" for those of us going into treatment.
The bottom line is, even though I get a great deal of satisfaction in sharing my experience, limited knowledge of AN issues, humor, life stories and hope for future good health with my fellow AN Survivors, both pre- and post-treatment, the bottom line is I come here for ME. Thanks to several communications I've had with people dealing with post-op headaches, I am now seeing a headache specialist at a headache clinic who is treating me with non-narcotic medication and trigger point injections. My small-town GPs and a neurologist had formerly just wrote me a prescription for more narcotics and sent me on my merry way. As an artist, I found it difficult to do my best work with a clouded mind. The information I found by communicating with others on this forum may not have "saved" my life, but certainly has added to its quality.
I have lead a very interesting life--I lived in the Virgin Islands for 20 yearas where I worked as a charter sailboat captain, (one of the first women to do so), freelance artist, humor writer, and itinerant musician. I went to college at age 42 , earned an art degree and married my favorite professor. I work and live in a beautiful mountain community in North Carolina and have a home and studio overlooking a lovely river. I freely share many anecdotes of my pre-AN life with many of the people I have met here on the forum.
Recently, I have been under attack for, and I quote "turning the AN forum into a chat room." I must say, that I am just not that powerful. There are a small handful of us that regularly post on a particular thread that has become a sort of "chat room" and area where we can be a little wild and crazy, yet stay within "nettiquette guidlines." Unlike a chat room, there is no anonymity involved, we all know each other quite well and speak on the phone regularly. No profanity is ever used, and I have never seen a cruel word writen about a single soul. It is harmless play and most of the people that participate in the forum happily ignore it. But for those of us who do post there, we find a great deal of laughter, hilarity, and good clean fun as we poke fun at each other and ourselves. Occaisionally some of the humor leaks out to other threads, which for the most part, is also happily ignored. Many of us here find that laughter is the best medicine!
Again, from the bottom of my heart, than you for giving us this venue to help us help ourselves.
Sincerely yours,
Deborah J. Purves aka Captain Deb
P.S. Now please do something about these spammers!
