I've had several inquiries about a support group in Boston. One of the reasons I wanted to have the "Under Our Skin" event was to see if their was interest. My contact with others living with Lyme has been predominantly online, as the nearest group is somewhere like Reading. That's not feasible for someone who doesn't drive. Nor is the time it would take feasible for someone who only has a few functioning hours a day.
So, yes, I would like to launch a support group in Boston. If you're interested, please post a comment here. If we have enough people, we can talk logistics (how often, where, etc.)
I would be happy to host a group in my home. We just need to figure out if that's a good enough location for enough people to make for a vibrant group.
Please let me know what you think.
Monday, August 10, 2009
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Hi Allison,
ReplyDeleteMy name's Gil and I've learned about your idea through my friend Jessica Marcus who spoke very highly of you. This is a wonderful idea, ever since I became sick with lyme I've tried to call support groups but it seems to be a dead end and many times the hotlines turned out to be not working. All of my lyme research and interaction with other sick people seemed to be through the cold medium of the internet. The worst thing about having lyme is the fear of the unknown and the thought "will I ever feel better?".
I think it's a wonderful idea to have a support group so we could all help alleviate each other's fears and educate one another about this painful process, a process that is much easier when you know you're not alone in it. I live in Melrose and would commute to any of the surrounding towns if necessary. I will stay updated and I hope that this idea comes to life. Thank you very much, I offer my sincere understanding and regards to everyone out there who is sick.
Gil
Hi Allison,
ReplyDeleteIt was good to have the opportunity to meet you yesterday at Northeastern, no matter how briefly, especially since I'm sure you were about ready to pass out by the end of the day's events.
I just wanted to reiterate that I am interested in participating in a Boston support group.
I feel it's important that city dwellers in particular have a vehicle to gather to share and exchange about their particular experiences--without having to drive far away, further taxing our health. We are rather isolated from the existing groups in the state (Danvers? Concord, Whitman, Groton...).
Thank you for your efforts with yesterday's events and for taking on the coordination of a support group. Given your debilitations, feel free to contact me if you need assistance with anything.
Sharon
(Somerville)
Boston support group sounds great. I live in downtown boston.
ReplyDeleteHi, I just found a link to this blog through JPMoms. I know this is an older thread, but I would be interested in attending a support group.
ReplyDeleteI became sick with Lyme this summer when my son was only 6 weeks old, it took me over 2 months to get diagnosed and after a 2 month+ course of antibiotics I was feeling almost "normal" again. Now I seem to be having some kind of relapse in symptoms. I went to the hospital after collapsing and heard the all to familiar, "your symptoms don't make sense...we don't know what's wrong with you...Lyme disease can't come back.." I am waiting to hear back from my ID Dr, but could not get an apt. until next week... I don't know how I will be able to keep up with my 9 month old feeling like this! -Sarah (Jamaica Plain)
Gil, Sharon, Andrea, and Sarah.
ReplyDeleteIt's time to get this started. If you're still interested email me directly at a s nevitt @ gmail . com
(remove all the spaces.) Let's figure out a time that works for everyone.