Care Team Challenges

I get it that I’m a pain-in-the-butt when it comes to my medical care.  I am not some automaton, blindly following orders and hoping for the best.

However…

When I read on another COPD writer’s blog that he is pre-diabetic AND he’s on Metformin, “just in case”, I see red.

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I was raised to believe that I was supposed to speak up, and participate in my healthcare.

I was raised from a very young age to understand that the Docs didn’t have all the answers, and that we were making educated guesses about what “might” work, provide relief, give me better quality of life – even if the problem couldn’t be eliminated completely.

Not having an ability to resolve my health and move on, I was educated to believe that my opinion and education on options was crucial for my best quality of life.

So, it’s maddening to be reading another’s COPD-based blog and find that the drug I asked about specifically – Metformin – has been given to him, “just in case”.

Look, I know I’m not an easy patient.  I know I come across as challenging and frustrating to deal with BECAUSE I am a patient without a medical degree who is suggesting alternatives to try, and challenging the authority.  What is maddening, though, is that my inquiry into whether or not that same drug might aid me in fighting my diabetes and related NAFLD (non-alcoholic fatty liver disease) and possible cirrhosis of the liver was dismissed.

To paraphrase:  I need to be a “mindful” eater, and I need to handle my underlying inflammation with diet and exercise.

How can one be part of their medical care team if the Doc won’t give you time at bat?

How can one be part of their medical care team if one’s opinions are dismissed because, unspoken, the medical care professional at key points appears to believe my neglect, laziness and lack of interest in my health, as represented by my obesity, caused everything that I am experiencing?

No thought is being given to the underlying inflammation that has been intrinsic to my system from birth.  No thought is being given to even trying what I’m suggesting – Metformin – because the doctor is God and I’m just a lazy, undisciplined, patient seeking an “easy” fix.

Seriously, does the Doc hear her unspoken judgement ?!!?

If Metformin could be tried and didn’t make a difference, that’s one thing.

But, to refuse to try because I need to be more disciplined?  That is the height of oxymoroic behavior.

So, I write all this today because I’m loaded for bear.  My endocrinologyst wouldn’t consider putting me on Metformin, but she’s perfectly fine with my participation in a clinical trial – with medicine not yet tested on humans, and which may help or hurt or do nothing.  But, she’s not ok in allowing me to participate in my own care by using a product already on the market to see if it will help.

Crazy, much?

A friend of mine (T1 diabetes after the removal of her pancreas), who is on an insulin pump, had to deal with an energency room doctor recently.  A 27 year old doc who was also a T1 diabetic – and has his meds dispensed by a pump – but who also felt that she didn’t “need” the pump  and could manage her diabetes with diet and exercise.  Even though she has no insulin-producing pancreas and wasn’t in the hospital for a diabetes-related issue.

Now, that’s truly crazy input from a medical professional.

So, yes, I’m hoping to be picked for the Science 37 clinical trial.  Yes, they have pre-qualified me, and are in the process of collecting my medical records from my pulmonologyst and my latest endocrinologyst, and we’ll see if I make the cut.

Meanwhile, I will close with a link to a 15 minute TEDmed Talk which discusses the lack of basic civility and credibility given to patients by Docs who have all the answers.

Today.

Today, an ever-improving and always changing medical environment.

https://well.blogs.nytimes.com/2013/07/12/blaming-the-patient-then-asking-forgiveness/

2 thoughts on “Care Team Challenges

  1. Wow. Now they need to make this Ted talk a requisite for any ‘doctor’ studying endocrinology; maybe integrate it into the whole medical school process, along with “How to deliver bad news compassionately” – something else that seems to be lacking overall with most physicians one encounters. I am overwhelmed with a sort of regretful anger, because like you, I’ve heard the “lose weight, change your diet and above all exercise MORE” mantra that is the baseline for any diabetic regime. And I’ve said for a very long time that diabetes isn’t a ‘one regime fits all” disease. In fact, I’m one of those who was diagnosed, all that long time ago, as ‘insulin resistant”. Who the hell knows where my system is today, I probably am full on diabetic due to the cookie cutter cures and fix alls that ‘they’ think work. For everyone.

    In regard to metformin? It’s okay, given that your system (GI) isn’t finicky. Metformin causes weight gain (joy), severe nausea (for those like me) and an overall unwell feeling. But for you? Perhaps it will help and stop the other patent ‘cure’ – insulin. You really don’t want to go THERE.

    Liked by 1 person

  2. I can barely tolerate the finger sticks. Trust me, if I need to be on insulin, it will be via a pump or it will be via a pill. Having me wait all day to stick myself for a “simple” blood test assures me that I am *not* a candidate for needles. Too much of a baby already.

    As for my system, I’ve no idea if I’ll have the same tough experiences you had, but I eat much fewer fruits and veggies than you do, so I’ll hope that and my high protein diet will help me tolerate it if I get approved.

    So far this week, getting up and working and not having my first meal prior to 1:30pm has helped, but only because I was feeling ok. Some days, I’m ravenous from 5am onward, and my system simply won’t allow me to delay eating for 4-6 hours in the hope my blood sugar number will be lower.

    For now, I’m off for a swim and to delay eating dinner as long as possible. With any luck, it will be only 2 meals for me today, and tgat will help my numbers.

    You take care of you.

    Like

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