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Ok Campers

Those of you who know me will understand

Do I step out more into an advocacy role?  All my stories are not cheery, not pleasant.  But they are real.  Am I too damaged by my past to help those generations yet to come?  It hurts me to read the blogs of CWD’s.  But I feel I need to to help those following behind me.  How do I temper my past with today’s reality?

I just don’t know

  • Over the last few months, I’ve been finding my voice as a diabetes blogger. I really questioned whether I would, because I’m so far from perfect. And what I’m discovering is that I have a role because I’m so far from perfect – and open about it. An awful lot of people feel that way, at least sometimes.

    I wasn’t a CWD – but imagine that being one is not one unending stream of rainbows. I think you’d play a real service by continuing to be honest about difficulties and frustrations. I think kids never have a shortage of adults wanting to blow smoke at them.

  • Life is not always full of pleasantries and cheer. Those of us who live with diabetes and other conditions know that reality all too well.

    As someone who has lived with Type 1 Diabetes for many years, you have knowledge and experience that could help someone else. If you feel that taking on a bigger advocacy role is what you should be doing, by all means, do it.

    We are all damaged to some extent, but we are certainly not completely broken. There’s a lot of fight left in you. Time to put it to good use.

  • thanks to my friends Bob and Mike… honestly it not the kid that I worry about as much as parents… life it hard and we all have to play it the best we can

  • Life is not pretty. I think you should go with your heart. If your heart says you should then do it.

  • I agree with George, Mike & Bob.

    We need to be honest about the challenges we face in living with diabetes. Otherwise when they experience those challenges they might feel even MORE different/weird for feeling that way – know what I mean?

    I think we can share our stories in a way that still provides hope and light for many.

  • I’m not entirely sure I know what you’re saying…but judging by the comments you received…well, I’d like to say that…for us diabetics, confronting our realities head on is one of our greatest weapons against diabetes. I appreciate your honesty and I appreciate your disclosure. When I was 11 years old and diabetic I couldn’t stand adults that told me I would be fine, I couldn’t stand doctors that said “don’t stress about that 180 reading”, and I couldn’t stand it when my friends told me I shouldn’t worry about diabetes. I read all of the big books on the subject and I was willing to accept the truth in order to really know what I needed to do to give myself the best shot. I felt like people just wanted to make me feel better. But, really how much better was I going to feel later when I had complications? I had to trust myself, take diabetes seriously, and take the threat of it seriously. You are right about being worried about the parents though. I know mine were scared to death for me. I can’t imagine how hard it is…

  • Lorraine

    Scott, Simply by the fact that I am intrigued by what hurts you when you read CWD blogs, I think you should speak out. I think you know the value I place in the perspective of adult PWD. Good, bad or ugly, I think your views are worth, even meant, sharing.

  • Lo,

    check out http://www.schoolnursenews.org/BackIssues/2005/0505/Diabetes0505.pdf

    That’s a “technical” explanation. The actual impact on an individual can not be summarized like that

    Scott

  • Lorraine

    Scott,

    That is a wonderful document. Thank you so much for sharing that. I went over it quickly, but will go back and take the proper time to read it through and will now also include it in the documents I provide to the people who care for Caleb at school. I’m embarrassed to say I haven’t seen that before.

    I think this is a very important part of diabetes care and if your speaking out will give it more awareness, then yes, Scott, please continue to speak.

  • @badshoe on twitter linked it this morning, you might also want to check K2’s post at http://diabetesaliciousness.blogspot.com/2008/03/dear-mom-and-dad-thank-you-inspired-by.html

  • Scott: We are what many CWD, and by association those parents, will see in the future. For all general purposes. As those above have noted, life isn’t all peaches and cream. We must be advocates for both the good and the bad, I think striking whatever balance we find suits our particular types of advocacy best. Tell it like it is – that’s my mantra. I try to keep in mind new diagnosis mindsets and those parental “hopes” when advocating to those groups or individuals, and tone down my jadedness at times. But not always, and make sure to let that be known. I think the real D-Lives, both the good and bad, is what makes our stories and advocacy so crucial. For those that don’t want it, we wish them well and hope they find whatever it is they might be searching for somewhere else, like the CWD forums or parent-specific blogs. Everyone serves a purpose and in the DOC we’re all interconnected to a degree, but sometimes we have different ways to get what’s needed. Good luck, my friend!

  • Thanks Mike, I’m starting to come to the same conclusion…