There are things that I turn to the DOC (diabetes online community) for that my health care team do not have, and the more I network, chat and (may I say it..) befriend members of the DOC far and wide, the more I learn that they can provide me exactly the things I have been lacking the past 23 years.
1-Support and Understanding. This is my number one issue with my Health Care Team.
I have NEVER once been told "diabetes is hard and you're doing what you can." Never. I have always been blamed, been told my diabetes is out of control, called a "difficult case", a "brittle" diabetic. I have been prescribed every medication under the sun for blood sugar control, suggested that I get lap-band surgery, accused of lying about my exercise regime....you name it...it has been said to me, on top of that when I have reported it to outside sources I have been told "that's just how I take things" and "i always see things in such a negative light". When you live with a chronic illness that is portrayed in the media & public as your fault, you need somewhere to turn where people will not judge you, will not accuse you, but will guide you to better choices. I have found this in the DOC. While the DOC can not prescribe me things, look through my blood work, or do other medical tasks, I get the support and understanding I need from them to keep going every single day.
People who live with diabetes know more about the disease than anyone else. You can spend your entire life researching the disease and its scientific effects on the body, but until you truly live and feel it you are an outsider to it. I love the people in my life who help me. My boyfriend, my parents and my friends are always supporting me and listening to me talk about diabetes and what is happening in my d-life, they provide another layer of support and understanding. But the medical team I have (aside from my pump rep and my CDE who I rarely get a chance to see...) could use a little training in this area.
Which brings me to my next point
2- Timing My second major issue with my Health Care Team that the DOC gets right.
Diabetes is a 24/7 365 day a year disease. It doesn't take a break, a holiday or a vacation. It doesn't take a sick day, it doesn't go away. It's here to stay....forever. So why is it that when I feel I really need some specialized medical advice that I have to wait 6 months? Why is there no email, twitter, facebook, web page, phone number set up so someone who is in a diabetes crisis or in desperate need of advice can turn to it? People with diabetes who need advice on how to micro-tune a night time basal should not have to wait NINE MONTHS to figure this out.
It sounds like I am exaggerating, but I am not. Not one bit! Thankfully I have a few diabetes specialist nurses and endocrinologists who follow me on twitter and are members of the DOC. They offered me some advice! Over twitter! For free! FROM ANOTHER COUNTRY. Amazing. AMAZING. Thank YOU DOC. Guess what? For the past week my morning blood sugars have been between 4.9 (88) and 6.2 (111). Before that I was running in the low 3 (55ish)'s all night and mornings and then bouncing back to 15 (270)+ mid-morning. Can you believe that I haven't had a blood sugar over 13.3 (239) in TWO WEEKS? That sugar was only because I needed an infusion set change!
3- Empowerment I am EMPOWERED by the DOC. Members of the diabetec online community are the first to know about new technology and treatments. They tell everyone about it. They tell if it works for them why or why not. they talk about how you can take your health into your own hands. When I am having a bad day I am told by members of the DOC from all over the world to keep going, and that I am not alone. I am reminded that I am responsible for my diabetes, but everyone carries a bit of responsibility for each other. I am empowered to make choices for myself and seek out how to make these choices work. The DOC has helped me find my voice to speak up and out about this disease.
I am forever grateful and humbled by the DOC. The experiences we share in 140 characters or less are astounding, ground breaking and eye opening. Learning how people all over the world are dealing with the same issues I fight with every day has motivated me to care as much about my health as my loved ones do. I can not and will not give up....even if my health care team says I have to for 6-9 months.
This post is my October entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/october-dsma-blog-carnival-2/