Tuesday, April 24, 2012

Are You Smarter than an Endo?

Often people tell me that they were once told that eventually they will know more about diabetes than their endocrinologist or nurse.   I full heartedly believe this statement, in fact I think that is true within the first several months a person is diagnosed with type 1 diabetes.  The truth is,  we all as diabetics live the diabetes life 24/7 and despite the fact that most endocrinologists and nurses have spent years and years, not to mention thousands of dollars preparing to work with diabetics - in the end the one injecting insulin and pricking their fingers has the most knowledge.

Now, this isn't a bash on the health care team that supports us, in fact without them at times we would be lost. They have a purpose in our lives as we visit them every three months or so.   They work as part of our support team, just on the medical side of things, but occasionally for those personal moments as well (but mostly medical...)   But, what I am trying to say is that little seven year olds living with diabetes, 13 year old teenagers, fifty year old type 1 veterans, they all know what's going on despite their lack PHD, perhaps.

Even though I have heard this statement plenty of times, it didn't hit me until I was sitting in on my endocrinologist/diabetic education appointment that I realized the words coming out of the doctor's mouth, basal, bolus rates, insulin, suspended pumps, hypoglycaemia - all these words I knew of course, but meant something different to me. To be honest, when my doctor talked about basal adjustments, in my head I was thinking, do you even know what that means? and OF COURSE, she knows what that means, what was I thinking when I thought that? But really, to me, adjusting basal rates really meant something, it meant adjusting my life line, tweaking insulin, being the guinea pig in my own life experiment.

It wasn't that I didn't trust what the doctor had to say about my blood sugars, not at all. In fact I knew I had some tweaking to do with my rates, it was just that for some reason I felt like we were on two different plants, yet using the same language.      I say these words often, "I am going to bolus for this"  or "I corrected, but I think something else is going on..."  these words come out of my mouth all the time, but when it is splattered on a paper in front of a panel of judges nurses and endocrinologists then it is a whole different ball game. Now, you have to both talk about the same thing, just from two different perspectives.

I don't believe that I know everything there is to know about diabetes, but I also believe that if I wanted to know everything, I could find it out, learn it, live it, do it, breath it - within a matter of seconds.   I choose what I want to do with my diabetes and what I want to know.  I know the complications; however, I couldn't explain them all to you because that is something I rather not indulge in.  My knowledge of diabetes isn't from a textbook or lecture from a top school, I don't have a diploma hanging on my wall saying "She knows diabetes...very well.. in fact, she's a professional."  But, of course I don't need all that.

I am content with my vials of insulin, purple pump, USB meter and the highs and lows of diabetes, and the endocrinologists can have the pleasure of having their title, diplomas, and expensive textbooks and somewhere we will meet in the middle to help each other out!



  1. Kathy Scott 4:34pm Apr 24
    A visit to the endo can actually be quite discouraging. One day I got fed-up, so I asked to go through the blood-tests 1 by 1, discussing 'normal' as against mine and then took into account how long I had had diabetes (probably about 30 years at that stage) So at the end I said, well I haven't got any complications yet have I? I know my eyes are Okay, - what about my kidneys? fine - circulation in my legs? - fine - Nerves in my legs - fine ........so I'm really doing pretty well, don't you think. A big grin appeared on his face and he said, 'Yes, you are!" You've really got to drag it out of them. I know at this stage of my life I'm more likely to have a heart attack or stroke, whether I've got diabetes or not - but I am looked after very well as far as the correct medications are concerned to help prevent micro-vascular disease, and I try to do my part as best I can ...... so I try now not to be too daunted by it all. I sometimes think that 6 months or a year between appts. is actually quite a long time. I wish we could have some 'catch ups' on the days when things are not so good - by email, or iphone or ipod for those who have them. Or even a monthly email contact, especially if we need some help and encouragement. Maybe a group session with one of the Nurse Specialists once a month for urgent/semi-urgent problems. Perhaps we could come up with some ideas ourselves to improve our clinic times.

  2. Kayla, I agree quite well with your blog post today... actually I think I can even go so far as to say that I identify with what you speak of. I could probably count on a million hands how many times I've called my parents following an Endo appointment to vent. No, not to vent about my lab or blood results; but to vent about what my Endo wants compared to the reality of doing what they want. To them, they just see numbers; lows in the morning, peaks at lunch, and stability in the evening for example. But to actually follow through with their demands would simply be unrealistic (at times). Granted, they do recommend significant adjustments sometimes. But other times I feel they fail to realise that we are leading a life while managing our diabetes, and making the adjustments they want us to make could potentially put us at risk for a high or low blood sugar at an exact time when we have important responsibilities to fulfill. Now don't get me wrong, I have a fabulous Endo who takes very good care of me. But I guess what we all speak of right now, is the push and pull between medical ideals and physical realities. Thank you for bringing this topic up, Kayla. It's comforting to know that I'm not the only one who feels this way.

    1. I agree with both of you, and you put it very well. We are given an 'ideal' and often shown a chart of 'perfect' blood sugars. At my last visit the Endo - who is brilliant and looked after me for years - asked when looking at the download from my meter "What happens on Thursdays" - I had to scratch my head as I can't remember a Monday from a Thursday when it comes to tests results - and then I remembered - my husband had a heart attack and went to hospital the 1st Thursday and on the 2nd Thursday he was taken to Wellington for Angioplasty and had 2 stents put in. All was forgiven - I had been under stress and therefore it didn't matter what my test results were. It turned out to be a good visit and of course my husband is now absolutely fine. I do think Stress plays a far greater part in our control or lack of it than is recognised. In the long run we are the ones who make the day-to-day decisions and we know what works for us. I trained as a nurse many years ago - long before meters and pumps - we were told then to 'always listen to the patient' they know far more than any of us. I met a chap in 1957 who was in his mid-30s and had had diabetes since he was 6 years old. I met up with him again years later - he lived until he was 77! had a very full and active life, travelled widely, had quite a big family - he's still a legend in this area.

  3. to be devils advocate - about 80% actually dont understand diabetes despite having it for a long time and when they turn to the professionals and say "i know my diabetes better than you" why does said perosn then have complications after complications!! what about the health professionals who also have diabetes??

  4. I think the docs are in a tricky position. I have sat in a waiting room at Wellington hospital, listening to a rather large woman ranting about how the docs were nasty as they wanted her to change her diet and it was too tough, and they kept telling her that she was going to have real problems and possible amputation of her leg (that already had a massive dressing on one foot), if she didn't change things, and it was just to hard. Her daughter, that was with her, would also be pushing morbidly obese on a BMI scale.
    Many people don't have a clue, and don't want to know. those that really take control and learn how to help themselves are in the minority.
    The docs get taught the theory, the meds and the biology of what is going on in our bodies. They do 'practice' medicine, which means that they don't always get it right first time.
    I feel our job as a patient is to identify what we feel are the problem areas before we go to the appointment, have the evidence (they do like to see something) of what we have done and why, and see if they can help with another strategy, or spot something we have not.
    I once went in with a months worth of graphs, and tables of what I did and what happened as a result - showed them to the poor registrar and said, "I'm out of options, I haven't got a clue of what is going on, and I can't keep going on like this, please help". She went through page by page, made sure she understood what I had, said she wasn't sure, but had an idea and needed to talk to her boss. The boss came back in and said that I needed an insulin pump - and they have one left for the current funded allocation. I wasn't expecting that, but I felt much better realising that I wasn't going mad, and sometimes your best just doesn't work.

    The doc's don't know your schedule unless you tell them what it is. When they want me to change something they tell me what they would like my to try, and why, along with the result they expect to see. Never be afraid of asking why, and what the anticipated result is, and if you've alrady tried that, show them when. Yes, amny docs could improve, but we as patients need to train them into being what we want. To do that we need to let them know what we need, and how we would like to be treated - as partners.