Fellow blogger Karen Nelson wrote an excellent post about a new study published in Diabetes Care about the rising costs of diabetes. She shared physical and monetary costs and what can be done to help prevent or control diabetes.
I have had diabetes for over 15 years with no complications (knock on wood). In 2001, I started DiabeticMommy.com and it has a good active following. I have learned a lot trying to keep on top of the diabetes landscape and from the members as well.
I would like to share what inspires me and my members to try to take care ourselves: Virtual diabetes internet social communities. If you have a loved one with diabetes, or at risk for it, hopefully you will pass this on.
When I was diagnosed in my early twenties, I had likely had it for a while. Because I had so many family members with it (blind, amputee, and recently deceased family members) I thought I already knew everything. At that time my education consisted of a sheet of paper with diabetes info and dietary exchanges on it, and a nurse that said, “Oh mejita, I’m so sorry. I would rather have cancer than diabetes.” I figured there was not much I could do.
Fast forward to today – if I miss appointments, my doctor doesn’t call to see what’s up. My insurance company occasionally sends me two-page newsletters with diabetes info. I have probably seen two diabetes educators and two diabetes nutritionists in my lifetime – about four hours of education. Don’t get me wrong, those four hours are invaluable, but they are certainly not enough. To learn what you need to know about diabetes, it would require an education at least equal to a bachelor’s degree. Diet and exercise are vital, but education is right up there in importance.
Many of us, doctors included, are still in the dark ages of diabetes knowledge.
When I decided I wanted to get pregnant (about 9 years ago), I made an appointment with my doctor to ask what I needed to do. My blood sugars were out of control, and he patted me on the back and said “have fun.” That was it. So I did.
Little did either of us know, there were preconception steps we should have taken. Among other things, to get my A1c to 6 or lower, stop my oral medications when I got pregnant and switch to injected insulin.
After I got pregnant, my levels got harder to control. I mentioned maybe I should see a diabetes educator. My doctor arranged for one, and at that meeting, all hell broke loose. She put the fear of diabetes into me. I left upset that I could be hurting my baby. I started searching for information, read all I could. I got into tight control and lowered the risks to the same level as those for non-diabetic pregnant women. What I really hoped for, but never found, was a peer support group.
After my son was born, I created DiabeticMommy.com for others who were in my situation. Still today, newcomer after newcomer appears in our forum or emails me with a story similar to my own, desperate for help and information. I get emails from women both in the U.S. and abroad, including many from women living on military bases overseas.
TuDiabetes has it’s fingers on the pulse of the diabetes world, and the founder, Manny Hernandez, has created a welcoming community and encourages members to participate in fun and meaningful ways.
Sugarstats, founded by Marson Alfred and based out of Hawaii, is unique and innovative in that the community revolves around blood sugar levels. It provides easy ways for members to send in their levels (as well as medications, food, and activity) and share with their friends on the site. They can do it via mobile phone, internet and even Twitter. Members have profiles and friends like MySpace of FaceBook.
Little did we know, how valuable sites like these would become to people with diabetes. The medical establishment is taking notice with study after study showing the benefits, and they are starting to provide similar community-oriented sites. I’m very excited about it and wonder what kind of impact they can have on the severity of diabetes or even prevention. Go Internet!
Diabetes Spectrum, an American Diabetes Association journal, published Overview of Peer Support Models to Improve Diabetes Self-Management and Clinical Outcomes in 2007. They cite other studies that found people with chronic diseases like diabetes have better self-management with higher levels of social support. In addition, when people provided support to others, the benefits were the same or even greater.
The report discusses various support methods such as face-to-face groups, community health workers and phone-based support. Common problems are obstacles patients encounter for the scheduled meetings and no support between contacts when the patient has to deal with meals, exercise, blood sugar monitoring and medications on a daily basis.
It acknowledges that Internet support can help overcome those problems. Social web sites are promising in that they are an alternative to other more expensive resources as these sites are often relatively low-cost for both the provider and user and information flows easily and quickly.
Instead of being cut-and-dry sources of diabetes news and information, many of these sites allow you to share not only your diabetes history but yourself and life.
You share your struggles when you are frustrated. Health accomplishments get lots of pats on the back from others who totally understand what it took to do it. It’s also a forum where you can just get on your little soap box and rant and rave about how much diabetes sucks. The motto for my site is: LIFE with diabetes, not diabetes with a little life thrown in. That type of attitude makes these sites so much more appealing rather than visiting a static site with just page after page of information.
And all the while, unknowingly, members are getting a diabetes education. They share stories and experiences or doctor advice. They read books, studies, and news stories related to diabetes and discuss them. They often get to talk to diabetes experts. They are usually the first to find out about new studies, advancements, new products and drugs. In fact, these communities are fast becoming the go-to place for finding clinical study participants so the members are often privy to those developments when the general public is not yet. People come to the sites as newbies and before they know it, they have acquired enough knowledge to help others.
Members form subgroups that work on diet, exercise, weight loss and they encourage one another. They ask how are your blood sugars today? What was your A1c result? Did you lose weight this week? An absent active member might get emails or phone calls from other members asking where they are, and if they are okay. It’s a constant reminder to keep on top of your health.
I cannot express enough how important I think it is to plug into one of these communities. Have a lonely friend or family member with out of control diabetes? Teach them how to use the computer or Internet if you need to and have them connect with one of these groups.
There may be local groups in your community where you can meet face-to-face that should be checked out. However, when you are part of an Internet community, you can check out the site daily (or several times a day) in your jammies with a cup of coffee. Thinking about diabetes and your health becomes part of daily life.
If you have diabetes, and you haven’t become part of a diabetes-related virtual community, it wouldn’t hurt to check one out and learn something new.
- Did you know your menstrual cycle, the weather, stress, certain medications can make your blood sugars harder to control?
- Did you know that steroids might actually cause or worsen diabetes?
- Did you know you can get false blood sugar highs after strenuous exercise?
- Did you know you CAN have sugar if you know how to integrate it into your diet properly?
- Which came first the chicken or the egg (diabetes or the weight challenges)?
- What is intra-abdominal visceral fat and what does it do?
- What is an insulin pump and would it help type 2 diabetes too?
These are some things you may learn more about while just talking to some friendly people and maybe even improve your health. Check it out!
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