My mother and I decided to participate in Diabetes blog week together. It should be interesting to see how diverse or similar our opinions are on these topics.
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see? (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)
Daughter Point of View: I want my doctor to know what living with diabetes is really like because honestly, I feel like she doesn’t. I want her to know that it controls a lot more than just insulin amounts that I take. I think doctors in general are very educated about diabetic medications but clueless about diabetic living. My doctor would never be able to tell me to remember a cooler for my insulin at the water park or to put a pump site on my butt in the summer so you can’t see it when I wear a bikini. She wouldn’t be able to tell me that when I’m out dancing and my blood sugar gets low the bar will always have orange juice behind the counter. What makes diabetes hard isn’t the insulin, it’s the time and thought it takes from the other activities that are important to me. I wouldn’t mind if my doctor saw that I only change my lancet once a month or that haven’t used a sharps container since the first week I was diagnosed (ain’t nobody got time for that). Diabetes takes up so much time that I am not going to add in unnecessary things if they aren’t going to be a detriment to my health. I do enough to be healthy but leave space to be a person too, finding that balance is the real challenge. I dislike it when my doctor says that my blood sugars are ‘good enough’, who is she to judge my health?!? To me a reduced lifespan, retinopathy, and weight gain are not ‘good enough’. I come in to get help improving my blood sugars and leave with her saying there’s nothing else to change. That’s stupid; she just doesn’t know what else to do because I’m doing everything the drug companies suggest. Then in my following appointments I come back and tell her the things I’ve tried on my own and how successful they were. I always leave questioning, why I am paying so much to teach my doctor new things about diabetes. I personally think the number one thing she could do, would be to read Dr. Bernstein’s book, The Diabetes Solution. The fact that she hasn’t even heard of him infuriates me. Thanks for listening to my frustration. Haha. My mom is much sweeter than me and will probably have much nicer things to say.
Mother Point of View: Having just read Hannah’s ‘rant’ as she calls it, I understand her frustration. The endocrinologists Hannah has seen over the last 8 years have been nice, well-meaning professionals. They seemed concerned yet sometimes single minded. Often when I am sitting in an appointment with Hannah I just want to scream “please just stop talking and listen.” I don’t think they realize that diabetes is so much more than carb counting and insulin. I see on a daily basis how hard it is for my daughter and yet I still don’t really know how difficult it is either. I have never had to insert a pump or CGM site. I can barely watch her insert them. I haven’t had to miss meals because my blood sugar was too high or to miss activities because of feeling lousy. It may be unrealistic for the medical professionals to understand what their patients are going through, but sometimes I think it would help to try. I understand they have limited time with their patients and that their focus is on AIC’s and carb ratio’s but I need them to know that diabetes is so much more than the mechanics of matching insulin to carbs. It is a lifestyle, a constant process. I need them to know that someone can do everything right and still have high and low blood sugars. Just try getting mono when you have Type 1 Diabetes and keep a good AIC. I am so amazed how hard my daughter works to be healthy. She is so disciplined and strong. She reads everything she can find to educate herself and the rest of the family. She is an inspiration to me. I just wish when she went to the doctor they saw her value, not just her AIC.
Disclaimer: As we read each other’s posts we feel we have let loose. We are not usually this cynical or negative but it nice to be able to vent every now and then. Thanks for reading.