Tuesday, October 17, 2006

Notorious

A couple of years ago, I was in my psychiatrist's office for my brain-med appointment. I told him I'd just come from the ortho clinic downstairs and was told that my broken ankle was healing well because I was doing everything I was supposed to - rest, ice and elevation. Dr. Shrink replied, "well, that's good - diabetics are notorious for not taking care of themselves". I then had a small meltdown, wailing about how people don't understand the unending daily challenges we face. When I read the clinic notes a few days later, Dr. Shrink had written, "patient had an unprovoked episode of significant rage". Fortunately, we have since discussed this a couple of times and I think Dr. S. has learned a great deal about living with db.

I was reminded of this today when I was on theTake Control of Your Diabetes site. TCOYD was started by Dr. Steve Edelman, a California endocrinologist who has been type 1 for more than 30 years. Take a look at his "Making the Connection" article. Paragraph 3, describing how a resident physician generalized that the diabetic patient was "noncompliant" is enough to make me go and pound someone's head. Also see the last paragraph, and I think you'll know that this guy gets it.

87 comments:

Scott K. Johnson said...

Oh wow. The things that some people say.

I consider myself pretty, um, emotionally volatile about my diabetes.

I would have lost it too. But I might have landed in trouble hurting that man.

And I might have went back to pay another "visit" after reading my clinic notes.

Ahem.

I say all that tough manly stuff to sound big and bad, but in reality I probably would have crumbled into a million pieces once I got home...

I really admire the whole TCOYD campaign. They are really great. I've always gotten a lot from the conferences (there were two here - did you go to either?), and look forward to whenever they will come back.

I think Amy T. has some involvement with them too. Not sure if it's the same thing or not, but either way - it's great for her, and for us too!

We need more people who "get it".

Minnesota Nice said...

Scott, I was at the first one that came to town and was disappointed that they skipped us this last year. It was very much worth an entire Saturday.
And, thankfully, Dr. Shrink and I still have a pretty good relationship - I forgave him for being a s--thead.

Bernard said...

Kathy

Thanks for a pointer to TCOYD, I hope it comes to the New England area in the future.

Isn't it amazing how this disease: that none of us asked for; that is a bear to control with any degree of success; and that threatens us with all kinds of dire outcomes, is so misunderstood my most medical folks.

My own endo will regularly tell me to take it easy on myself, and that she is so glad she doesn't have diabetes because she'd never be able to manage the type of regime it requires. Now she may be exaggerating a little, but bless her for saying it.

Chrissie in Belgium said...

WOW, I didn't know about TCOYD or Dr Edelman. Maybe there is a glimmer of hope out there in the medical profession. A total lack of communication and trust between doctor and patient is often what lies at the core of failed diabetic treatment. With an ever increasing number of diabetics on the horizon, I really do think the medical community should ask a few sole-searching questions. WHY is diabetic compliancy so low? What is going wrong? If doctors do not understand what we diabetics really must deal with, how can they possibly advise and then judge us?!!

For example wouldn't it be nice if doctors were forced to have a hypo in a controlled environment, or ketones or.........

More than 30 years ago when i was at the hospital for the last four months of my first pregnancy the troop of doctor filed by my bedside and "talked about me". When i took part in the discussion, since I was well educated in my diabetes (at Joslin) AND had already had the D for more than 10 years so I felt I knew my D quite well, I was basicly told to keep my mouth shut, this being a discussion betseen the "medical personel". Well, I told them that if they wanted to discuss me without MY participation, then they would just have to do it somewhere else! NOT at my bedside! Oh the doctors just loved me........

Thank you for informing me about TCOYD and Dr. Edelman. I have to look into this more!

Chrissie in Belgium said...

Oh, also look at Lori's blog(Very old and very healthy ....) where she points out an interesting site stating how to be a "good patient".

Minnesota Nice said...

Bernard - sounds like you have a peach of a dr - maybe we can clone her.

Chrissie - I could write volumes about my hospital experiences. Last time I was in, they weren't giving me enough insulin so I had to keep my own supply rolled up in a sock. I know it probably wasn't the wisest thing to do, but I did not want to sacrifice control just because the nurses were afraid of me dropping too low.
And yes, I had just read Lori's post - the article had some really good points in it that I needed to be reminded of.

Chrissie in Belgium said...

Good for you - I LIKE your spunk. Why should one be obedient in a hospital if they cannot better mangae control of our blood glucose values. Hmm, I will have to remeber your hiding place. You and I, we could make quite a terror team for the doctors.

Anonymous said...

Before you get too excited about this promising trend in endocrinologists, did you guys know that Dr. Edelman has type 1 diabetes?

That would be why he "gets it."

I hate the word noncompliant. No diabetic is gonna be perfect 100% of the time.

cHoCoMiLkRoCkS said...

About the comment you left me: I can't believe that ignorant person said that to you....If I was in the middle of a full blown I'm angry get out of my way HYPO, that I sometimes have, I may have punched her face....

And about your post..... ah people are SOOOOO annoying, especially head doctors, my head doctor was probably more "insane" than me...

vic xx

Anonymous said...

When people say things like this without thinking it will really make me mad. A lot of times I will take on the stance of reciting the differences between type 1 and type 2 diabetes, the many different reasons that your blood sugars can rise and fall, how the body breaks down food….etc to respond to comments like this. In effect I am defending the things I do and the choices I make. The problem is I quickly lose their attention (they just don’t care and it is easy to be judgemental, I mean, how often do I judge people without thinking in a day?) and I AM boring. I memorize so much of what I read that I truly am just RECITING what I’ve read….And then, they really don’t care. They might care if they were type 1 diabetic, they have an intense interest in nutrition and how different types of food affect your body, or they are just intensely interested in metabolic and endocrinological functions in the body. Most people are none of those things. So I think I need to shut up, too. Nod my head, smile, nod my head, then go write about it and let other people get pissed off with me.

cHoCoMiLkRoCkS said...

hey,
thanks for the congrats!
average readings...well, i go through phases of having good control and then have off weeks. like this one. at the moment i'm like 180 pre meals esp first reading of the day. and anything up to 216 after.

However, when i'm at work and have a routine with my exercise i usually am between 100 - 108 fasting or pre meal if it's been like 4 hours since last meal and i try not to go above 160 after meals.

and i only have around 3 hypos a week and not really low ones either. some how now i've gotten my carb insulin ration correct, FINALLY, things seem to be going well.

Vic x

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