Finding Support Resources for Type 1 Diabetes
This is part of the series, Misleading Gallbladder Diagnosis Leads To Better Diabetes Management
While I recovered for the next month, I roamed the Internet. Googling "diabetes," I hit the JDRF, ADA, CWD websites, but nothing for adults living with type 1. I looked at Yahoo! groups trying to find people like myself living with diabetes and again it was hard to find anything for adults with type 1. I decided that I would locally get back involved with JDRF hoping to connect with an adult type 1 diabetes community. I found a local Yahoo! group, but most of its members were parents. I joined anyway, hoping that some other adults would join eventually. After a couple of weeks, I learned that my experience growing up with diabetes proved invaluable to these parents. They wanted to know how I had managed to survive without complications.
I continued to feel frustrated that I was not finding a medical team that understood my need to live with diabetes! My mom had heard about a CDE, Certified Diabetes Educator, in Philadelphia. Gary Scheiner had written a book called Think Like a Pancreas and owned a small diabetes management business called Integrated Diabetes. Gary changed my complacency to action.
From this first meeting, I moved from Gary's care to another CDE in his office, Judy Tripathi, who has become my diabetes mom! She has taught me more about eating and carb counting, she has too has lived with type 1 for more than 40 years and is in great health!
I also found a new endocrinologist, Dr. Caroline Huang. She has learned to walk in the door with her hand out, as I always have some research study to share and I pick her brain on the subject. The more I do this, the less I feel confined by diabetes. I always thought I would hate this job, talking about diabetes. I have learned that it empowers me to be independent of the complications, lack of understanding and complacency. Knowing the business of diabetes makes me my own best advocate.
My gallbladder was the catalyst for change. And I'm hoping my story helps people realize management is 50/50. Don't sit on your hands and don't let routine guide you. Don't let someone talk you out of being your own best advocate. Education on this disease comes in many forms, talking with others who have it, getting involved with sites like this can offer community, especially if you are isolated!
Don't let the learning curve rest with your doctor! Take it upon yourself to be well educated on your health and your diabetes! If you think something is off and the doctors don't get it, don't become complacent or give up. If you are struggling and need support, that's what sites such as this are designed for. Here are some sites geared for adults living with type 1:
As a last note, after much pushing, the JDRF Capitol Chapter put together a group called AT1, Adults with Type 1, a social meet up for DC locals. We meet once a month and the gatherings have grown quickly. The concern at first was that this would be a cost to the chapter using funds raised for research and in fact the group is self-sufficient. Our last outing had 80 respondents and we packed the bar! It cost JDRF nothing. In fact, it gave them a resource for needed volunteers! Don't be afraid to take the first step in creating local outreach! Start with a Yahoo! group and build from there!
Read the whole series: