Diabetes Blog Week – Change the World

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This week is Diabetes Blog Week!  I’ve been so excited about this week because I participated last year and it was when I really learned about the Diabetes Online Community (DOC).  I found so many new blogs and others found mine; it was a really fun week.  This year, I will be participating again and I’ll be attempting to write a post every day between now and Sunday for DBlog week.  Thanks to Karen from BitterSweet Diabetes for hosting this awesome week for a FIFTH year in a row!

Today’s topic: Change the World

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.

The main thing that really fires me up is the American Diabetes Association’s slogan to Stop Diabetes.  I can’t stop my Type 1 Diabetes.  My immune system attacked my pancreas and there is nothing I could have done to stop it.  I’ve written about this before but it still bothers me.  People debate whether Type 1 and Type 2 diabetes should be called something different and I think the ADA does a good job of alienating the Type 1 community with their slogan, which could be one reason that people want the two to be separate (at least that’s why I wouldn’t mind seeing a change although I’m pretty neutral on the issue).  However, that’s probably not really up there on the importance scale of changing the world.  It more irks me than is important to me.

Getting back to the issue at hand though, I’ll have to be honest and say that this topic was a little difficult for me.  I’m probably in the minority but I don’t really have an issue that particularly fires me up.  I would love for everyone to get all the coverage they need.  I would love for our equipment that we use to save our lives on a daily basis to be accurate.  I’m not sure why I don’t get particularly fired up about one topic but I think it’s because I lived twenty years of my life just getting by with diabetes.  I didn’t even know I could get fired up about an issue related to my diabetes.  Joining the DOC really opened my eyes to a whole new world. I didn’t know people were so passionate about issues.  I lived my life everyday hoping I was carb counting correctly and staying “between the lines” on my CGM graph, which was about the extent of my passion for diabetes and diabetes related causes and issues.

I was diagnosed when I was 9 years old with Type 1 Diabetes but school safety never even crossed my mind.  I had a free pass to go to the clinic whenever I needed to but I was so afraid to be different or to have teachers think I was abusing the system that I didn’t take advantage of it.  A doctor told my mom that it would be better to have high blood sugars than low blood sugars so I lived most of my adolescent life in the higher range, so I never really had an issue going low at school.  Before reading dblogs and finding the DOC, I had no idea that Medicare patients couldn’t get CGM coverage.  I hope this issue gets resolved soon because I can’t imagine a life without my CGM (although a life with a functioning pancreas would be even better).  Before the DOC, I didn’t know that other countries were approved for better diabetes devices before the US.   Before the DOC, I didn’t know how inaccurate test strips were.  I think this is one issue that does fire me up some because I just didn’t know that they varied as much as they do. I did a post on test strip accuracy last July as part of the Strip Safely campaign and I do think it is very important.

No one issue or cause really fires me up but I will say on topic that does fire me up is the importance of the DOC.  As mentioned above, if it wasn’t for the DOC, I wouldn’t even know any of these issues existed.  Doctors sure don’t tell you how inaccurate test strips are or mention SDP funding.  I lived a diabetic life in a haze, unaware that things could change.  Before the DOC, the biggest issue that probably fired me up was having to go through airport security with a  CGM.  I have flown so many times now since getting my CGM that I am not longer bothered by the process.

The DOC provides so much support and so much information that it really is the most valuable resource in dealing with my diabetes.  I think every single person living with diabetes should be a part of this awesome community.  If I’m having a bad day, there is always someone to lift my spirits.  There is always a ton of great information that people share on their blogs.  There is always someone who is dealing with something similar to what I have gone through or what I’m going through.  I’m pretty sure I can attribute my A1C that was Below Seven to the DOC because someone shared their high alert limit on their CGM and it was way lower than mine.  Thanks to that person (or people-I can’t remember now), I found the courage to lower mine, taking baby steps from 200 to 190 to 180 and eventually I became more comfortable at 150 than at 200.

When I saw this topic, I was feeling really guilty that I’m not more passionate about a topic.  I want nothing but the best for everyone, whether it’s great insurance coverage or a life without complications or puppy kisses.  In the past, I haven’t really been a person to get out there and strongly advocate for one specific issue.  With the DOC’s help, I’m slowly coming around to seeing what types of issues affect different people and seeing how I can help, whether it’s writing a letter to my Congressman or sharing blog posts to spread the word.  I’m loving all the education and knowledge I receive from the Diabetes Online Community.

I look forward to reading other people’s posts on what fire them up.  You can check out the list here.

16 thoughts on “Diabetes Blog Week – Change the World

  1. Its “diabetes brag” week for me. My sons last two a1c’s were below seven. BOOYAH! Just barely lol, but whatever. It is because of the dexcom. We have great insurance, but I feel strongly that the dexcom should be covered by all insurance and medicare/medicaid too because it is such a wonderful tool for blood glucose control, thus preventing serious complications. That is what I feel passionate about, along with the need to expand medicare in all States.

    • That’s awesome! Congrats to your boys!! I don’t have the records of what my A1C’s were growing up but I’m pretty sure I never got close to 7. Technology today really is amazing and important. I agree, CGMs should all be covered! They really are amazing at having good control :).

  2. Great post Kelley! I totally agree about the importance of the DOC and one of the reasons is how much I appreciate your post today… I’m a less-than-fired-up person too and that can make me feel guilty. Why am I not organizing JDRF fundraisers and walks? Why am I not out there fighting for every PWD in the world to have the supplies they need? It always helps to know that we are all different and somehow, because of that, we are never alone. Your blog and twitter posts have often helped me and that makes a difference in the world too.

  3. Oh my gosh. Me too with the guilt for not feeling strongly about a big topic.

    You make such a good point about the ADA slogan. I never thought of it that way, but always have a stale/I don’t want this vibe from ADA publications. It feels very “other.” Maybe this is why.

  4. Over the course of the last few years and the fact that I have volunteered for the ADA, I now see why I’ve moved my efforts to JDRF instead. Your description of their slogan is bothersome and troubling to me. I always did get the sense from the ADA that they focus more on Type 2 rather than Type 1 and this post makes that come to fruition as I think about it more and more.

  5. It’s easy to feel guilty in the DOC when we’re not as big and as powerful an advocate as the next person. I don’t think anyone would want us to feel that way and I don’t think that was in the contract when we started blogging or participating in diabetes forums. At the same time I think that I’m a lot like you in that I have really grown as a person through the DOC and have slowly been learning ways, even if it is small ways, to make a difference.

  6. The DOC has been pivotal for me as well, and it’s an important part of life as an informed diabetic. Great topic to be passionate about. It has definitely informed me and helped pull me out of my shell and make me want to share and learn and listen.

    I actually have a different view of all the agencies. I had a great experience with the ADA and met some wonderful people doing good work in DFW and loved the message of the Tour de Cure (and met some amazing T1’s and T2’s all fighting diabetes). However, I’ve heard bad stories too. The flip side is also true, I had a great experience with some of the local JDRF folks here in Newfoundland.

    In the end, I think the power is down to the individual and the grass roots. They are the folks getting out there, meeting each other, and sharing. They are the DLC – diabetic local community, and there is a lot of power in that human connection. They might not be fundraising or fighting for a cure, but they are helping people live day in and day out, helping people survive and thrive.

    Selfless promotion, but stay tuned for my Wednesday post. The whole politics of diabetes is definitely something that gets me down! 🙂

    • Well said. I haven’t had any interaction with the local ADA so I should look into that. I look forward to your post on Wednesday!!

  7. I agree that the slogan Stop Diabetes, even if they’re referring to Type 2 diabetes. I have the classic traits for being at high risk for type 2 – how do I stop it? By changing my genes, race, age? Stopping aging? Interestingly though, in some diabetes forums, many Type 2 see the ADA as catering more to Type 1 (the bases for this claim include the recipes featured in ADA’s Diabetes Forecast and ADA’s dietary protocol). I also wish I had one specific issue that I’d like to advocate for. But many issues concern me and I find it difficult to concentrate only on one, or to focus my energy on any one in particular. Like you, I’m thankful for having discovered the DOC.

    • You make a great point! People who are yet to be diagnosed with Type 2 can’t stop theirs either! I didn’t realize that about some diabetes forums thinking they cater to more Type 1s, that’s interesting. Maybe instead of Stopping Diabetes their slogan should be more about educating people on diabetes because I feel like there are so many misconceptions out there that the general population (not just diabetics) could really benefit from being educated on diabetes and then our lives wouldn’t be as difficult. No cinnamon won’t cure me, yes I can eat that, no I didn’t do this to myself, etc.

  8. Imagine the power that a joint ADA/JDRF could do if the collaborated rather than competed. Each have their strengths, but I agree that the majority of my support goes to JDRF. (When ADA mails me a nickel, some address labels, and a fundraising pitch, it leaves a really bad taste in my mouth).

    I say we save the really big advocacy jobs for those who have the time and talent to deal with it. One champion with several supporters speaks louder than a collection of disjointed voices. Also, learning of and diving more into about the inequities surrounding diabetes (in whatever form you choose) can really be depressing. Sometimes it’s healthier to watch from the sidelines.

  9. The bulk of my fundraising and advocacy was with the ADA, just doing my first JDRF walk this year. I always took their slogan of Stop Diabetes to mean stop it by finding a cure. That being said they are definitely more tailored to the Type 2 community. I was originally misdiagnosed as Type 2 and they were the first resource I found for support and information. They have good information but most of their publications is aimed more in that direction ( outside of Diabetes Forecast which I feel strikes a fair balance). But looking at it from the side of someone who has not dealt with them or seen it through the eyes of a person with Type 2 diabetes I can see how that slogan might rub someone the wrong way

    • Aww, I’m glad they were there for you! I guess my background is a little different because I was diagnosed young so I didn’t go to them as a resource, but I can see how a newly diagnosed diabetic could get a lot of information and advice from them. I don’t think the organization is bad at all and I’m contemplating doing my first Tour de Cure next year with them.

      I wouldn’t mind if their slogan was “cure diabetes” instead of “stop diabetes” though 😛

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