Wednesday, May 6, 2015

Not Much Help

I went to the Diabetes Centre on Monday, armed with 7 days worth of food logs printed from My Fitness Pal and a few weeks' worth of pre and post workout blood pressure readings.

I had my list of questions.

I was ready!

We started with my food diary. I asked about some of the vitamins and minerals that people with type 1 diabetes are notoriously low in - primarily calcium. I said that, according to My Fitness Pal, I get 100% of the daily recommended dose of calcium most days without taking a supplement.

"My doctor recommended that I take a supplement" I said. "I will if I need to but, if I'm getting 100% of my daily calcium from my diet, is that enough? Or, as someone with type 1 who also has a family history of osteoporosis, do I need more than 100%?"

"Well, if your doctor said to take a supplement, you should listen to your doctor" was the reply.

"Yes, but my doctor never asked about my diet so she has no idea how much or how little calcium I am getting. In your opinion, should I take a calcium supplement on top of the calcium I get in my diet?"

"Well, if you doctor said to take a supplement..." was the reply.


Moving on to blood pressure.

I explained the trend I had noticed where my blood pressure drops during long runs, sometimes dramatically, and that, when that happens, my ears plug up. I also mentioned that, if I make a point of drinking a lot during my run, my blood pressure does not drop and my ears do not plug up. I even showed them some of the before and after readings.

"That's really fascinating" they said.

"Yes it is" I replied. "Do you have any thoughts about this? Am I on the right track? Should I be concerned? Are my low blood pressure readings dangerously low?"

"Well, that is very interesting" was the reply and then they checked my blood pressure (which was 120/80 or something. End of discussion.

Did I mention that I was speaking with a very experienced diabetes nurse and a registered dietician?

Did I mention that, while I knew the nurse from previous visits, I did not know the dietician.  I had to introduce myself to the dietician a few minutes into the appointment because, the second I sat down, I was being asked a bunch of questions without even knowing who I was taking to?

"I'm CĂ©line" I interrupted "what's your name?" She told me and I said "well, I figured we should be properly introduced before I start sharing all the private information in my insulin pump".

Every year I go through this routine. I come armed with information and questions and I leave knowing no more than I did when I went in. It feels like an exercise in getting their form filled out as quickly as possible so that they can meet their requirements and confirm that I quality for pump funding for another year.

"That's because you know more than they do" Doug said when I told him.

"Well, that may be the case but their care is not at all person-centred" I said. "They don't seem to be willing (or able) to provide any medical advice whatsoever and they only give vague answers, if any, to my questions. If I were them I think I would love a patient like me - keen, knowledgeable, willing to work together to find answers."

I just hope that, for people who actually go there for help, that they get it. Because if I really needed help on Monday, I am not confident I would have received it.

I do take comfort in the fact that I am going to see my endocrinologist in a few weeks and can ask her all of my questions. She'll answer them and be absolutely candid when she does.

With her I always leave her office knowing more than when I went in.

1 comment:

  1. I have had also had a similar experience at the diabetes centre in Niagara. That prompted a move to the centre at McMaster in Hamilton as they have much more knowledge and expertise there. Might be something for you to think about?