Just a note
I posted the following entry on a LJ community called Auto_Immune. I thought that, as my friends, it wouldn't hurt for you to see it too, as you're also a smart, helpful group of people. Please at least take the time to read it, even if you don't have anything to offer. Thanks!
Hi guys. I had this idea (ok well two ideas) and I was hoping some of you could help me and/or collaborate with me.
One this is that I go to a college where there is a lot of focus on physical wellbeing, volunteerism, and a good bit of cash at hand. They do a lot of work for the Special Olympics every year, as well as EXTENSIVE fundraising for breast cancer research and awareness. I am totally behind these things, and even participate in them myself. However, I feel that there is still room to bring awareness to campus about conditions like ours, and even to raise money for research (like I said, it's a lush area...on the Main Line in this part of the state). I have a few thin leads about how to start doing this, but I thought some of you might have experience and/or ideas that could help me.
The other thing, which I think I need even more help with, is that I'd love to start a support group. One that would meet in person (and possibly online as well, for those who really can't leave the house as we know is often the case). I am now 20 years old, began really suffering from my conditions at about 15, and have experienced some symptoms since the age of 2. It has only been very recently that I've even encountered people with similar conditions to mine, and still don't know many. While searching the internet, especially right after beginning to see a rheumatologist, I found numerous support groups for similar things, but none that I have. Anything I have found (including this community) have been online venues, which are great and serve a wonderful purpose, but sometimes it's theraputic to just sit down and talk to someone. I also think it would be great (especially for young people or those going through a life change such as childbirth, entering or exiting the workforce, etc) to be able to talk to other people who can offer practical advice beyond "just recognize your limitations". THEREFORE (as I finally approach my point), I want to start a support group called UII (pronounced "We") - Understanding Invisible Illnesses. For anyone who's heard "but you don't look sick" or "well at least you look good" (or read the Spoon Story on www.butyoudontlooksick.com), this could be a God-send. However, I don't have a clue how to go about starting a bona fide, recognized, safe support group that could meet in person, ideally spurring local branches so people wouldn't have to worry about travelling. Please please please throw some ideas to me. Also, anyone who has a little time on their hands (I am crazy busy, as I know many of you are) who would like to help me with this, please let me know! Ironically, you would not need to be located near me geographically, though that would be the most ideal situation.
I hope I can count on you for some ideas and support. I've seen this group pull together before, and I know there are some geniuses out there reading this right now:) Put our brain power together!
Hi guys. I had this idea (ok well two ideas) and I was hoping some of you could help me and/or collaborate with me.
One this is that I go to a college where there is a lot of focus on physical wellbeing, volunteerism, and a good bit of cash at hand. They do a lot of work for the Special Olympics every year, as well as EXTENSIVE fundraising for breast cancer research and awareness. I am totally behind these things, and even participate in them myself. However, I feel that there is still room to bring awareness to campus about conditions like ours, and even to raise money for research (like I said, it's a lush area...on the Main Line in this part of the state). I have a few thin leads about how to start doing this, but I thought some of you might have experience and/or ideas that could help me.
The other thing, which I think I need even more help with, is that I'd love to start a support group. One that would meet in person (and possibly online as well, for those who really can't leave the house as we know is often the case). I am now 20 years old, began really suffering from my conditions at about 15, and have experienced some symptoms since the age of 2. It has only been very recently that I've even encountered people with similar conditions to mine, and still don't know many. While searching the internet, especially right after beginning to see a rheumatologist, I found numerous support groups for similar things, but none that I have. Anything I have found (including this community) have been online venues, which are great and serve a wonderful purpose, but sometimes it's theraputic to just sit down and talk to someone. I also think it would be great (especially for young people or those going through a life change such as childbirth, entering or exiting the workforce, etc) to be able to talk to other people who can offer practical advice beyond "just recognize your limitations". THEREFORE (as I finally approach my point), I want to start a support group called UII (pronounced "We") - Understanding Invisible Illnesses. For anyone who's heard "but you don't look sick" or "well at least you look good" (or read the Spoon Story on www.butyoudontlooksick.com), this could be a God-send. However, I don't have a clue how to go about starting a bona fide, recognized, safe support group that could meet in person, ideally spurring local branches so people wouldn't have to worry about travelling. Please please please throw some ideas to me. Also, anyone who has a little time on their hands (I am crazy busy, as I know many of you are) who would like to help me with this, please let me know! Ironically, you would not need to be located near me geographically, though that would be the most ideal situation.
I hope I can count on you for some ideas and support. I've seen this group pull together before, and I know there are some geniuses out there reading this right now:) Put our brain power together!