Mary Ann, let me introduce you to sarcoidosis on Facebook.
My most recent post on addictions will introduce you to how I started on Facebook. One of the first contacts for me on Facebook was a Sarcoidosis Group. http://www.facebook.com/groups/22602590155/ I met some really great people here and we had some very supportive conversations. Then as I read other people’s post I also learned more about myself.
Sarcoidosis Reach for a Cure was the second group I tied into. Again very supportive people. http://www.facebook.com/pages/Sarcoidosis-Reach-for-a-Cure/299962673213 These folks were on a strong membership drive. One of the key things I have learned from them is the necessity to tell the story over and over again.
Sarcoidosis Real has just been a fun place to drop in on and say hello. Again some very supportive people. What has been a consistent thread here is the – hi – how are you mindset. Good feelings! http://www.facebook.com/profile.php?id=100002590693485
The Foundation for Sarcoidosis Research http://www.facebook.com/groups/36840373200/ is a good place to join as well. They are connected to researchers and people with support groups. Check things our before you get locked in. Here is a link to their web site. Foundation for Sarcoidosis Research.
As you begin to live with your sarcoidosis please remember you will not be alone. At times it will feel like that. Take the time to read other people’s stories then write your own. Share this with your family, they will not be able to read your mind, especially if you are trying to keep a “stiff upper lip”.
Take care and God Bless. Please take a hug and pass one on.