I sat down this morning, before I actually start my work day and calculated the years of D experience in just 2 of the groups here on TuD. If you take the 229 people in the "I have had D for 30+ years" group that's at least 6870 years. Add to that the 324 members of the "I've had D for 20+ years" group that's 6480 years. Even with some overlap between the groups you're still talking about well over 13,000 years of experience with D. So the question is who is more likely to be able to give credible answers and advice about your D ? A doctor or nurse with max 40-50 years of experience or a group with over 13,000 years ? I think I already answered that question for myself. Thanks for being here and adding to the experience.
There's also a "diabetes veterans" group that's for people who have had diabetes for 20+ years, with 242 members. I wasn't aware there was another 20+ years group.
I think a while ago there was a discussion that added up all the years of diabetes experience here and got over 50,000 years?
I calculated the actual time in hours since my T1 diabetes diagnosis. I have lived with diabetes for 251,149 hours (28 years, 8 months). The depth of my experience with this disease compared to a doctor's or nurse's complete professional training and all their clinical hours is astounding. No diabetes professional can even begin to compete with my life experience with diabetes.
I know, I know, the medical professionals have more technical specialized knowledge. I respect that. But I certainly don't feel reciprocal respect from these D professionals.
The title of this discussion should be "Wow the number of years of D experience here IS mind-blowing", I hate when I mess up typing but it is what it IS.
It's true what you say. Very often the medical professionals don't give us enough credit for knowing our own body and how it is affected by diabetes. I don't have the amount of hours calculated, but I have more than 27 years of experience under my belt.
Danny posted this discussion and got a lot replies
https://forum.tudiabetes.org/topics/diabetes-years
feel free to add to it.
Thanks Marie,
I looked at Danny's original discussion and his goal was to achieve 5000 years of D experience but that was in 2010. I guess the final number was 5556 but after that it was dropped most likely because the goal was achieved. While I would add to his total the last addition was jrtpup's in March of 2011 so forgive me for not knowing he had already started a discussion about it. I have only been on here since June and really just started the discussion because after 37 years by myself I am very happy to have the expertise and experience of so many others to offer help and support. And I marvel at the years of D experience of the group.
http://clinical.diabetesjournals.org/content/22/3/123.full
This is a link to a really good article regarding Empowerment and Self Managment of Diabetes it spoke loudly to me.
Clare - I followed your link and read the article about changing the current system that overrates the doctor and underrates the patient. Diabetes is a very different disease to manage.
I remember when I was first diagnosed and the doctor gave me my insulin regimen and told me to call the office if I had any questions or needed to change my insulin doses. It quickly dawned on me that these decisions were really mine to make. Calling the doctor with every needed change in insulin dose was not practical.
From the article:
"Patient empowerment is defined as helping patients discover and develop the inherent capacity to be responsible for one's own life. Since initially proposed in diabetes, there has been a growing recognition that, although health professionals are experts on diabetes care, patients are the experts on their own lives."
What bothers me in this quote is the apparent concession that I am not an expert in diabetes care, just my "own life.". I know I am a diabetes expert and recognition of this expertise by the doctor and any other medical professionals would go a long way toward earning my respect.
If a doctor was willing to concede that s/he is the junior partner in this relationship, then things would work much better for me. I'm not sure many doctors would be willing to see things like I do!
I tend to doubt you will ever get an endo to concede that but you might get one to concede that you are an expert in how to manage your own diabetes. What I liked most about the article is that they actually say to treat the patient as a person, not as a set of numbers. That is what I think gets missed in all of this. Ask your patient "how are you feeling" and actually listen to the answer.
I was diagnosed at 14 years old, and my pediatric endo gave me my insulin regimen and gave my mom my diabetic meal plan. But back then we only had clinitest kits to figure out where we stood as far as our control was concerned and 24 hour urine sample containers to bring with us to the diabetic clinic every 3 months. I used to make my sister pee in the container for me.
My primary care doctor concedes that she is a minor partner in my care. But she is in the minority and my ex-endo would never be willing to admit that.
"Empowerment is a process one undertakes for oneself; it is not something done “to” or “for” someone’. The goal of empowering patients is to promote
autonomous self-regulation in order to maximise the individual’s potential for health and wellness. Patient empowerment is therefore an outcome."
There are a lot of definitions for and explanations of "Patient Empowerment" but I think Autonomous Self-Regulation pretty much takes it out of the hands of the medical professional and puts it squarely where it should be in the hands of PWD.
it is an interesting topic, isn't it. I'm getting ready for my 45th d-anniversary this month.
This is how I am going to approach my next Joslin Clinic appointment. Since it is a new endo and I have not seen her before I will set the groundrules ahead of time. I will get my blood work done before seeing her, not after as has been the habit in the past. I will bring a flash drive with my meter info or I might just bring the whole computer because some hospitals security will not allow downloads from flash drives. Most of all I will say that I would like her to be on my team. But since I am the one who is most vested in my care I must be the captain and if she has a problem with that then I can always find another endo.
my endo always says that 'you know your body better than I do, let's work as a team'
can't get more respect than that, from any physician!
Wow Faith what a forward thinking endo you have, I wish mine were even half as forward thinking but alas that is not the case, he did not believe in the "team" concept, it was "I know what you must do and you must do it." Sad but true, thankfully my PCP is a lot more intelligent and gives me credit for my intelligence as well, so we can work together as a team.
I'm very fortunate to have her. Now just to get a NEW pain management dr in my area. He's rude, quick to judge, and lots more that I won't get into.
I wish I could find someone in my area (lower Alabama) that could personally recommend a physician. So frustrating!!!!
Sorry, off topic!
There is really nothing here that is off topic, but unfortunately I can't help on the lower Alabama front, the closest I have gotten to lower Alabama is a trip to Biloxi, MS sorry.
No one should have to suffer not only with pain but also with a rude "medical professional" note the quotes.
yes, that is exactly the problem! He actually said "read my lips" to me when I didn't understand how he wanted me to increase medication over a period of time. Even the pharmacist at Rite Aid had to redo the label, because she didn't understand it either. Made me feel a little better anyway
How do we get so much diabetes experience? Have the diagnosis and don't die. he he
I hope a cure is developed soon, so we can stop gaining experience with type 1.
Marie, congrats. It'll be 46 for me at the end of October. It sure has been a long time.
With this much combined experience, maybe this group will be the one to CURE it!