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.
Posts
Same to you Mitch!
ReplyDeleteIn both ways - I love you too and really appreciate all you share. I recommend your blog to so many others I met.
ANd I'm so glad I found you when I did. I just wish I didn't need to.
Mitch, my cousin Mark introduced me to your blog and I have lurked around sporadically...just want to say you inspire many others. I've been on this ride just about the same time as you and as you say, at least we know we're not alone. Keep on keeping on!
ReplyDeleteYup, for sure! And also, thanks for the listing of the MS websites and groups. Some of them I've enjoyed myself, but I hadn't heard of others.
ReplyDeleteI, too,, have made a lot of good friends via the internet (you included.) It's nice to know I'm not alone with this MonSter.
ReplyDeleteI (unhappily) have had MS long enough that I have first-hand experience of what it was like to live without the connections the internet now provides. Not only is life a lot less lonely, but the information I now have available at my fingertips is so empowering. No longer is the neurologist an all-powerful god. It is not that they were and are not well intentioned. It is simply, in my estimation, that the well-informed patient has a better chance of evaluating and taking action favorable to his or her health. Also, shopping online has made an enormous difference, not only in terms of cost, but also in terms of convenience.
ReplyDeleteI hear you Mitch -- I'm sure it goes without saying, but your blog means so much to a lot of people-me included. Whether it's to blow off steam, or to learn more about this dopey disease, your blog, the honesty with which you share your experiences and insights is priceless. If "they" ever come up with the big breakthrough, cure the disease and reverse the damage done, I hope you're one of the first to get your old life back--then you can give up this blog and find a new topic to write about! (Lobsters...or Could the Patriots get any luckier?...) :-)
ReplyDeleteMary Ellen, I'm glad you appreciate what I do, and thanks for recommending my blog to others.
ReplyDeleteLoretta, thanks for stopping by and commenting so kindly.
Daphne, glad I could help.
Muffie, I know lots of people who love your blog! http://kaleidoscopemuff.blogspot.com/
Judy, you are so right. Having doctors who are receptive to your suggestions is important too. If they aren't, you can always get a new one.
lovespups, lucky? You mean, "could they get any better?" :-)