Fighting For Our Cause

Using Insulin by John WalshThe lack of diabetes education is a huge pet peeve of mine. The lack of education is not just a problem with those dealing with diabetes, but also with those medical providers that are supposed to be helping us. I frequently see people coming to message boards with some very outdated information. People are still using a sliding scale instead of learning how to carb count – to be clear here, I am not talking about a newly diagnosed person that you need to start off someplace until they can get some training, I am talking about people who have been diagnosed for some time. Doctors tell people not to do corrections in between meals. What purpose does that serve?

I have a real-life friend that has a teenage son with diabetes. I recently had a conversation with her about some of her frustrations with her doctor’s office. I know in the past that some of the stuff that she has been told is just flat out wrong. Like most teenagers, her son’s blood sugar fluctuates. Instead of offering tips to deal with that or even a little bit of understanding, she said they are both made to feel like crap during their appointment. Her son is treated like a liar and must be doing things that he should not be doing. I know that treatment all too well in dealing with gastroparesis. Doctor’s seem to think if you don’t have perfect numbers, it must be your fault.

My wish for doctors, nurses, CDEs and dieticians that deal with people with diabetes is that they have to test their blood sugar, write down everything they put in their mouth and inject saline when they want to eat so they know what we have to do on a daily basis. They would have a little camera attached to them 24/7 so we know if they “cheated” or not. They would also be using a specially rigged meter that would show their blood sugar to be high regardless of what they did. That would be an annual requirement so they get reminded of what it is like. They should be required to take several classes every year. One would be to keep up with new information. The other one would be taught by a PWD and they would have to hear the frustrations that we have with medical personnel.

In an ideal world, we would all get the education that we need. Since we don’t live in an ideal world, we need to help each other. The DOC has been a lifesaver for me. Prior to finding the DOC, my blood sugar was literally bouncing around between 30 and 300 every day. Doctors had no clue how to help someone with gastroparesis. Instead of getting help, I was treated like it was my fault. One time when a doctor was criticizing me because my blood sugar was all over the place, I even said, “tell me what to do and I will do it.” Instead of being offered suggestions of what I should do, I was met with blank stares. When I found the DOC, I also found the suggestions that helped manage my gastroparesis.

Spread the word about the DOC. If you meet someone in your neighborhood, at church, at work or even the grocery store, ask them if they are familiar with sites like TuDiabetes or Diabetes Daily. Let them know that you found some good tips just by talking to other people with diabetes. I find that when I pull my meter out to test, I have people tell me that they are also diabetic. Using that meter is a good way to attract the attention of another diabetic.

Let people know about books like Using Insulin by John Walsh or Think Like a Pancreas by Gary Scheiner. Offer to lend someone in need your copy. Buy an extra copy and donate it to your library. Let the library know what good books they are so they know if someone comes in looking for a helpful book on diabetes, they will be pointed towards those books.

Gary Scheiner offers some courses for insulin users at Type 1 University. Diabetes Daily also has the Diabetes Daily University. Both the courses from Gary Scheiner and Diabetes Daily are online courses so you can do those from your home. There may be others out there, but those are the ones that I am familiar with.

There are a bunch of diabetes groups on Facebook. Get involved in those groups. You don’t need to be an expert on diabetes to help people. Giving tips on the things that you do is a huge help to people looking for answers. There are people out there that really don’t know some of the little things that they could be doing. Those little tips that you can give will be a big help for people.

Kim Vlasnik of Texting My Pancreas started the You Can Do This Project. Kim made up both a flyer and a business card flyer that people can print off and hand out so people are aware about the You Can Do This Project.

Besides handing out the You Can Do This Project flyer, you can make up your own little wallet sized flyer with links to TuDiabetes and Diabetes Daily, along with the names of books like Using Insulin and Think Like Pancreas. When you bump into a person in need, all you would have to do is reach in your wallet and you have a nice little list of resources that you could hand out. If your doctor’s office has a bulletin board, ask if you can put some information on their bulletin board.

Keep spreading the word, every chance that you have. Pay it forward!

“This post is my August entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/august-dsma-blog-carnival/
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7 thoughts on “Fighting For Our Cause

  1. Pingback: DSMA Blog Carnival – August Round-Up | Diabetes Social Media Advocacy

  2. These are some really terrific suggestions for helping to spread diabetes education! I’m already mulling over the ways to put your ideas into practice. I also love your training idea for the HCPs!! Awesome job on this month’s prompt!!

  3. awesome post! i also have gastroparesis (gp) and diabetes! you can feel free to contact me any time if you need to vent, talk or want to share ideas or see if i have any different ideas than the ones that you have for dealing with diabetes and gp. it is a challenge for sure and doctors and med. professionals definitely DO NOT know what in the world to do with us! i’m on a pump and CGM and i’ve been a PWD for almost 10 years and pumping for 9 of those 10 years. (dHugs!)
    Aliza Chana

    • Thank you Aliza! It is good to share ideas, because even if something works today, that doesn’t mean it will work tomorrow & we always need a backup plan. We need to teach the medical professionals what to do with us!

  4. Totally agreed, Kelly. We so need to connect more to the DOC… great post, and always appreciate reading your perspective. I think the YCDT project, as well as Cara’s new Your Voices project getting more non-bloggers to guest-post and be connected are incredible ways to engage more.

    • Thanks Mike! The DOC has been a huge help to me, so I want to make sure everyone has that opportunity. As long as someone has an internet connection, it is free and they don’t have to worry about insurance or what it will cost. I am not familiar with the new Your Voices project – I will have to check that out.

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