Act 1: The Beginning: Diagnosis
Like hundreds of thousands of people every year, I got Herpes. It was the early 90s, and I was devastated. All I knew about Herpes was what I’d read in the scare articles in magazines and on the news – that it was a horrible “social disease” and I was branded with a Scarlet H for life. It was not just a physical betrayal, but an emotional and relationship betrayal as well. Triple-whammy! Life had been great, and now I had this incurable nuisance of a virus! I cried, ranted in anger, and went through the range of emotions that many people do when they get an unwanted and unexpected diagnosis, particularly one with the stigma that an STD carries.
Back then, there was little information available. The world wide web was in its infancy, limited to usenet groups, university intranets, Compuserve, and a young AOL… There was no Google, and Yahoo wasn’t even Yahoo yet. Research wasn’t easy back then. There was the American Social Health Association’s Herpes Help Line, their books, and sponsored live local groups. Great stuff, but somehow, it wasn’t enough. I wanted to connect, to learn, to understand. And wanted it to go away.
Act 2: Hope in the Chatroom
So I found my way to the Health Channel on AOL, where there were discussion boards and a Tuesday night Herpes Support chat. The chat was run by a kind and well-loved guy whose online handle was “Earthstar.” There was a group of regulars, and new people every week seeking information, support, and hope. I began by lurking, and a few weeks later, started to participate.
I had gone through the initial outbreak, had several more, and had started to experience non-stop pain and numbness from the buttocks to the back of the knee. It was non-stop annoyance, pain, and aggravation. I also couldn’t find ANY information about the pain I was experiencing. The doctors had no answers, and a few of the doctors I went to gave completely inaccurate information. Even though the chatroom provided lots of help and good information, I wanted more. I had a thirst to know as much as possible about Herpes, and to solve the riddle of the aching pain in my legs. Let the research begin!
Act 3: AOL Chatroom Facilitator
Meanwhile, I had become a regular helper in the Herpes Chatroom. When the Lead facilitator needed some time off, I made sure the chats were monitored and the participants supported. Earthstar had created “macros” – lines of text with basic information about Herpes that could be typed into the chat window with a single keystroke. Those lines of information formed the foundation of the document that was to become HerpeSite.
I lived in a major city with several top Universities and would spend day after day in the Medical Libraries, looking up Herpes in the microfiche records, scanning and copying journal articles. I found references to “Post Herpetic Neuralgia,” primarily in relation to Varicella Zoster Virus, and reactivations of Chicken Pox and Shingles, but only a few minor offhand references to PHN in Genital Herpes. Finally I found a journal article written by Dr. Steven Sacks, a leading Herpes researcher, that referred specifically to Genital Herpes and PHN. I even called him to get his opinion on our my situation. Finally, there was acknowledgement and an answer from a respected knowledgeable source! I put the research together and created a document that we sent to anyone who asked for PHN information.
Eventually, Earthstar had other obligations arise that made it necessary for him to give up the Facilitator position. I was asked to step in and be the lead Host. I ran the chats, monitored the discussion boards, ensured that AOL’s TOS was observed, and helped people find information and support. It was gratifying to be able to help alleviate someone’s angst with some information and words of encouragement. I’d been there, and was happy to pay it forward.
Act 4: A Website is Born
The chats grew as more people joined AOL. AOL instituted Hosting training, gave Chat Hosts official AOL screen names, and increased the number of chats. We were joined in our Hosting and support duties by several others, including Terri Warren, RN, a leading Herpes practitioner. We were an all volunteer support team, spending many hours each week setting up and running chats, monitoring discussions, and answering emails. A labor of love, for sure!
The chats became so busy that the “macro” lines of text we used to deliver basic Herpes information in the chatroom weren’t enough anymore, so I created a document with all the information from the macros, and more, and uploaded it to our AOL member FTP space, under the screenname “herpesite.” The original URL for this site was http://members.aol.com/herpesite, which we gave to new group members as a resource and starting point for the basic information and support links.
HerpeSite has been a referenced resource in medical websites, peer-reviewed journals, and Herpes websites ever since. I eventually purchased the domain name herpesite.org as an adjunct to the main site.
Act 5: Changes and The Need to Accept Ads & Affiliates
For many years, HerpeSite did not accept advertising. When I started HerpeSite, the internet was an information resource, and I rather liked it that way! It’s so disappointing to go to website after website expecting to get real information, only to find out the “info” is nothing more than a shill for some product. I wanted to make sure that the information we provided on HerpeSite was pure and unaffected by advertising, with no hint of commercial influence or “payoff.”
There have been long periods of time where I just couldn’t spend time on the Site due to pressing obligations and the need to make a living, and quite frankly, there have been times when I felt that to stay focused on Herpes just perpetuated it in my life. So, in the mid-2000s, HerpeSite was often neglected and left without updates for months and even up to a year at a time. It sat on the web as a friendly resource for people, and I didn’t do much updating since much of the information in the original site was still accurate anyway.
In 2007 and early 2008, I received several emails from people in need, and realized that there were still many people seeking friendly yet accurate REAL information and support from a non-commercial source. So, I resumed conducting regular research and updates. Then, the members.aol.com/herpesite site was ended abruptly in late 2008 when AOL discontinued the Hometown program and eliminated members FTP space for web pages. This new development meant that many of the resources that had linked to us were no longer valid, and unfortunately left THOUSANDS of links to the site irretrievably dead. This prompted a major reorganization and redesign of the site, and I vowed to add even more resources and information than ever before.
Act 6: Renewal
So there it was, 2009, and with a renewed energy and commitment to helping people through the Site, I added a helper… and we realized that accepting ads has become a necessity if we were going to continue to grow it with more research and regular site updates and upgrades. Honestly, the ad revenue is not big bucks, it’s trickles of pennies. But it helps with hosting fees and reference library subscriptions and cups of tea while we sift through information to find the best of what’s out there to bring to you. We try to be selective about our advertisers, and offer access to products and services that can enhance the lives of our visitors. Most of the products and services advertised are ones we’ve tried, use, and believed in long before the ads and affiliate links came along. (If you have a question about any of them, please feel free to write!)
These days I’m healthy, happy, and free of outbreaks. I’ve always had a passion for helping others, and the HerpeSite Team feels that Herpes has given us the opportunity to do that in some small way. HerpeSite has been a stalwart friendly resource for many people all these years, and one of the few original resources that had any information at all on Post-Herpetic Neuralgia from Genital Herpes. We plan to keep the site alive and current and growing for many years to come. We’re grateful to all those who’ve contributed their time, effort, and heart at the beginning, and to those who will contribute in the future.
Act 7: The Server Crash of 2012
So, once again we got busy making a living, and thought that HerpeSite was going along just find in the meantime. Little did we know that for almost two months at the beginning of the year, the site was down. Completely offline. Our hosting company had NO explanation. (But oddly, instead of a “Page Not Found” screen, there was an advertising landing page that they put up and from which they no doubt collected a few bucks until we figured things out!!!) Anyway. ALL the files and backups were gone except for a few old old versions on a harddrive in the basement… so we’ve just decided to use it as an opportunity to redo the WHOLE thing. There are new pages, a new design, and a new commitment to spending serious time every week on research, updates, and just making sure things are up and running well.
Thank you for visiting, and for giving yourself the gift of hope. Herpes does not define us as people, no matter what the media may still say about it. (And that’s our next campaign, to eliminate the stigma in the media!) We’ve been through it, and we really do know that life not only goes on, but it gets BETTER!
Best wishes to you, and please stay in touch!
Laurel Grey (aka “Cree”)
HerpeSite Founder & Webmaster since 1994
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