I'm planning to start one here in Knoxville. The JDRF chapter still hadn't emailed me back yet; maybe they will tomorrow. If anyone has suggestions for how to go about it, please let me know. :)
I think I would benefit from face to face interactions with others who have struggled with this longer than I..
Two resources I found helpful are "How to Develop and Lead a Diabetes Support Group" and "Support Group Leadership Training Resource Manual."
Hey there Palomino. Have you developed a clear vision of what you want to do? How will your group / network be developed? How often and where would you meet? What are the goals of your group? I always try to have a clear idea of what the end results would look like in a perfect ending. That way as things develop I have a way to navigate the road blocks and opportunities. This works for me in anything from planting a garden to planning a party. I will def check out BSC's links myself. Let's keep in touch on this. I'm still a bit muddled regarding my idea, but I keep proding it.
BSC- Thanks, I've been reading over the first one when I have a few moments spare time. It's VERY helpful and has already spurred a number of ideas. I just need to start writing my ideas down!
Randy- I would like to have a T1 Women's Group, ideally, but I think it would be all right for it to be open to men and women especially if there's not very many individuals interested in it. But I want to have a group that meets... maybe once monthly. Of course, if you make friends specifically, you could 'hang out' more often, but the idea for the group would be once every month to two months. We could meet on a different day of the week each time so that people with schedule conflicts could at least make it to every other meeting.
But what do I want to accomplish? I want people, especially the newly diagnosed, to know they aren't alone! I have hit the ground running, I feel like; and have thrown a ton of energy into learning as much as I can. But I am that way. I have to be that way to help me get through this. I can see now that we all deal with the initial diagnosis differently. I can see where some who are newly diagnosed may go for months in shock and either not really understand, not really know what to do, or just plain feel alone. And I feel that when one thinks they are all alone, it makes the diagnosis that much harder to deal with. This is part of why I like your idea about being able to talk to newly dx'd T1's while they are either still in the hospital or ASAP after they've been diagnosed. At the very least, provide them with information on a group that they can contact... that is openly warm and friendly... to help them if they need it! And leave it to them to make the decision???
TuD has been and IS great... without it I think I would have had a meltdown by now because I am/have been so high strung. But I think face to face interactions are sometimes more productive. I want people to be able to share their stories (if they want) and if they have suggestions, to be able to share those too. It would be nice to have guest speakers occasionally, if I could arrange for them. And it would be nice to also have non-diabetes related fun every now and then.
I'm suddenly remembering going to a leadership conference back in high school, and a speaker there told us to actually sit down and write out our goals. We don't have to meet all of them, but getting it down on paper makes it seem more realistic and obtainable. I think I'll add that to a 'to-do' list for the weekend.
I have to say, I didn't realize how run down and exhausted I was prior to diagnosis, and that I have a LOT more energy now. I think I've told everyone that at least a half dozen times; I'm still in shock! But I think just having the diagnosis and reading as much as I have over the last couple of months has lit a fire; I want to help. Clinical depression among veterinarians is higher than that of those in the human doctors (I believe about 4x). Suicide is higher among veterinarians as compared to human doctors well.. divorce rates are higher too. After reading the statistics on depression in diabetics, and knowing my own family.. It seems damning. But a statistic is just a statistic; I realize that. It doesn't mean it's going to happen. I just want to at least help facilitate people finding help if they need or want it.
Sorry for the book :/
I'm posting again on my own blog, I know. I had a few more thoughts.
I've heard professors and doctors in both human and veterinary medicine say, "Herpes is forever."
I almost feel like, at this point, that diabetes should be added to that list. "Diabetes is forever." And that's a VERY scary thing to think about when you are diagnosed..
Randy, I think another important thing (to me) is educating the loved ones in the family of a newly diagnosed T1.
Sometimes they just don't understand. They love the heck out of their T1, but they don't understand the disease at all even though their beloved T1 is telling them about it. Sometimes hearing from a T1 + non-T1 who have been dealing with the diabetes for years is all it takes to help the loved ones of the newly diagnosed to become more supportive and understanding.
My boyfriend was policing my diet initially and giving me a bit of a hard time (his intentions were good)... and he finally backed off after we met with someone who has been a T1 since 1952 and his wife.
I asked yesterday if he's sure he wants to continue putting up with this diabetes nonsense- and he told me that he hardly notices now.
That's another thing to add to my list this weekend- send a thank you to that T1 and his wife!!! :)
My oh my, Palomino, you ARE quite the bundle of energy! I think you will be successful once you have your plan in place.
I agree that the family / support people would be important to have involved. My wife was wonderful. For the first few months I had to depend on her for so very much. Now that my hands and eyes are good enough I can do most everything for myself. Still, she is my rock.
I invision something very somilar to what you describe. My main desire though is to make that early contact to be a guide for the initial learning and to be there for both type 1 & 2. In many ways I think T2 is a bigger problem because it seems to be discounted in many ways. How it happened and how you treat it may be different, but really the condition is the same as are the complications.
I see the whole program being very similar to AA and ALANON. Providing guidance and support along with a sense of community. And, yes, TuD is over the top, the very best thing I have found in support of my journey, but face to face real time would be a wonderful thing.
I know, I know. I sort of exploded with ideas last night (because let's face it, I didn't want to study!).
I'm glad you are doing much better! I feel lucky not to have had any complications present at diagnosis. I notice sometimes, even if I am not 'low', I shake a little more than I used to. It is not horrendous; more annoying than anything.. but I think it could be a product of my BG's still going all over the place at times.
I think it's a great idea to want to help all diabetics when they initially find out. I was told that because about 90% of people are type 2's, that 90% of the literature is relating to that, and that not all of it is going to be helpful for me. I feel like that is at least *partially* true. But I agree for sure that the complications are very similar/the same. My father is a T2 who doesn't manage very well.
It's so ironic that you mention similar to AA- I was thinking about that last night as I typed away my responses. I'm not familiar with ALANON; but agree that guidance, support, and a sense of community are all very important.
As a side note, my JDRF chapter e-mailed me back and said I could come to one of their events and sign up.. I mean, that's good, I guess? But not really helpful like a support type group would be.
ALANON is for families of alcoholics to get and learn support. It kind of completes the circle of support. I've never been through either program, but know people who have. There is a lot more T2 info out there, but a lot of it is no better than the stuff available for T1 from the same sources. They still have to find their way and learn most of the same things. Many T2's also must learn how to use insulin. We all need support and the understanding that we are not alone. Keep plugging away Palomino, we'll get there.