Despite my best intentions, I've not been able to sever myself from the myriad of message boards/discussion groups (some highlighted on the right sidebar) I belong to. I knew severing myself from the internet would be a daunting task, but I didn't think it would be that difficult when it came to the message boards.
When I was first diagnosed, they were helpful. It's how I learned I likely didn't have CLL (my original diagnosis), and that my original doctor wasn't as dedicated as I would have hoped. But now I get little or no information of value.
I've tried imparting some of the knowledge I've gained over the past 11+ years to some on the message boards, but I've never been the most tactful person, and some people actually take offense to some of my insights. So I rarely if ever participate anymore.
So why I keep cluttering up my computer with information of so little value is beyond me?
They do provide the rare blog post idea, and I have found the Multiple Myeloma message board to be helpful when it comes to understanding Edie's disease (which I find way too complicated to fully comprehend) and available treatments, but not much more.
There are, however, two websites I do still find helpful, and provide valuable information, for those in similar situations to mine, without all the extraneous bull*$#@.
The first is Lymphomation.org. Karl has spent a great deal of time putting together a website dedicated to Lymphoma, providing information of value to everyone. He also keeps me up to date through his forum, and daily mailing of current news.
The second is Non-Hodgkin's Lymphoma Cyberfamily. It's basically the same idea as Karl's group, it's just less varied, focusing more directly on NHL.
Between the two, I prefer the former, but you are free to disagree.
When I was first diagnosed, they were helpful. It's how I learned I likely didn't have CLL (my original diagnosis), and that my original doctor wasn't as dedicated as I would have hoped. But now I get little or no information of value.
I've tried imparting some of the knowledge I've gained over the past 11+ years to some on the message boards, but I've never been the most tactful person, and some people actually take offense to some of my insights. So I rarely if ever participate anymore.
So why I keep cluttering up my computer with information of so little value is beyond me?
They do provide the rare blog post idea, and I have found the Multiple Myeloma message board to be helpful when it comes to understanding Edie's disease (which I find way too complicated to fully comprehend) and available treatments, but not much more.
There are, however, two websites I do still find helpful, and provide valuable information, for those in similar situations to mine, without all the extraneous bull*$#@.
The first is Lymphomation.org. Karl has spent a great deal of time putting together a website dedicated to Lymphoma, providing information of value to everyone. He also keeps me up to date through his forum, and daily mailing of current news.
The second is Non-Hodgkin's Lymphoma Cyberfamily. It's basically the same idea as Karl's group, it's just less varied, focusing more directly on NHL.
Between the two, I prefer the former, but you are free to disagree.
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