So there's like 4 people on FB who have this and have started a little support group which is great. However, when I went to see if there were any on the web, there were a handful whre people would make one or two posts and then dissapear....a little scary. Maybe they just got bored??
Corrie -
ReplyDeleteThe Internet is both a blessing and a curse. Please know that you are not alone. You have many, many people supporting you in this battle. Your strength is an inspiration and your humor gives us relief from the helpless feeling that AS invites. Stay strong, in good humor and hopeful.
My money is on that they are just too busy living and loving life now.
ReplyDeleteMaybe you should get together the angiosarcoma patients at the Farber and form your own support group!
ReplyDeleteGood luck with your surgery! I have been flashing all weekend, in your honor!
I choose to think those folks are just off gorging on delicious cupcakes and other homebaked goods from their friends, and their fingers are too darn sticky to even consider touching their keyboards! Sending you love from Texas!
ReplyDeleteMeg
Hey Corrie! Glad to hear you got through surgery okay =) That actually happened to me when Bethany was first diagnosed. I wrote emails to about 10 people I saw on the messageboards (mostly older posts) and held my breath until I heard back. I think out of the 10 people, 7 wrote back, 2 were sent back as invalid email addresses, and 1 man wrote me back that his daughter had passed away. Not bad considering from most the stuff I had read online it looked like my sister would be dead within 6 months!! The internet is definitely a good tool, but unfortunately there is a lot of inaccurate data up there as well, and believe me, I had to stop reading after a while because there sure is a lot of depressing stuff!! Lisa
ReplyDelete! I was one of those with a few posts. I rushed back to work after my surgery because it was important for me to get "back to normal".
ReplyDeleteI am not much of a writer.....
As you can see from my blog.