Since my diagnosis in 2001, I’ve been a member of several online communities. I was at MS World for a time, but I quit because of their silly rule that you couldn’t share links to websites. It’s impossible to effectively communicate with people anymore if you can’t direct them to important websites. I wonder if they still have that rule.
During the CCSVI heyday I spent a lot of time at This Is MS. For a while I dabbled in PatientsLikeMe. I very much enjoyed the folks over at Kurmudgeons Korner, but I let that relationship fade. Someone recently introduced me to a site called MyMSTeam. I signed up, but I have done nothing there yet. I’m probably forgetting a couple of forums as well. I’m still active at only two sites today. I am an administrator at Primary Progressive Multiple Sclerosis – PPMS, although admittedly not a very active one. This is a Facebook page which shares tons of valuable information on our little corner of the MS world.
MyCounterpane is a beautiful website built by Kate Milliken. If you have MS and you haven’t checked out Kate’s creation yet, I recommend you do that sooner rather than later.
Most of my online interactions, however, occur through the network that has formed around this blog. Every week I receive a few comments on my posts, and a ton of emails. I have wonderful discussions with these folks.
I don’t know what I would do without my online MS friends. But here’s the sad truth. I would gladly never communicate with any of you again, I would even be willing to forget that I ever met you, if I could go back in time and not have contracted this horrible disease in the first place. I love you guys, but I wish I had never needed you, nor you me.
But no such time travel is forthcoming, so thanks to all of you for helping me enjoy this shitty ride a little bit more, no, a lot more, than I otherwise would have.
Stay in touch.