If you’ve read my blog for any length of time, you probably know I don’t hold back when it comes to sharing my opinion on nearly anything.

(We all have them, what’s the big deal with sharing them? If you wanted all Technicolor rainbows and butterflies you’d probably be picnicking in a meadow anyway, instead of reading this.)

But here’s the thing.

I think it should be considered medical malpractice for a general or internal medicine doctor to diagnose and/or medicate someone with diabetes.

It simply happens too often. I’ve heard too many stories (that I consider horror stories) of a GP or IM diagnosing a patient with type 2 diabetes and prescribing whatever popular drug and both doctor and patient carrying on without further changes or appointments.

ARE. YOU. KIDDING. ME.???

Diabetes requires accurate diagnosis. It requires a knowledgeable prescriber and correct dosage and medication.

Heck, for a lot of people, it requires a hospital stay.

And everyone needs fantastic education, guidance, and support.

So what are they teaching these doctors in medical school and reinforcing in the medical community?? That diabetes is a “try this drug and come back in three months” kind of disease?!

The whole thing simply frightens me.

It frightens me because I hear about people who were incorrectly diagnosed as type 2 who, upon seeing an endocrinologist after months or years with deteriorating health, are correctly diagnosed with LADA, MODY, or in some cases, type 1 diabetes.

If you live with diabetes of any kind, you know what it takes to manage the disease. You know how intricate the work can be, and how helpful (and not as helpful) doctors can be when it comes to the ways in which you need their help.

So when I see these stories it amazes me that there are so many general practitioners who think they can diagnose and treat a patient’s diabetes without help from an endocrinologist.

It concerns me what they do with other diagnoses. I can’t see them thinking they can diagnose and treat cancer—or at least I HOPE they don’t.

Let me assure anyone who has been treated exclusively by their general doctor for diabetes: you need an expert’s help with this disease. You can’t get it online; you can’t find what you need in the Diabetes Online Community. You can’t find it on WebMD or from a friend.

You need to do this TODAY. Start by making a phone call. This is your health and no one cares about it in the same way as you care.

But you need to take charge. You need to make sure you understand enough about the disease to evaluate whether your diagnosis feels correct. If it doesn’t, make another phone call, get another lab test, see another expert.

YOU AND YOUR HEALTH ARE WORTH IT.

No matter what your general doctor might say.

Watching some of the “You Can Do This” videos this morning, someone said “diabetes isn’t going to get the best of me.”

And, although I understood what they meant, when I heard him say that I thought: MINE WILL.

I deserve my diabetes receiving the best of me as often as I can.

My best effort.

My best enthusiasm.

My best intelligence.

My best patience.

My best forgiveness.

My best discipline.

My best physical body.

The best technological tools.

The best medical professionals.

The best insulin for my body.

The best understanding and supportive friends.

My diabetes deserves MY BEST EFFORT.  It deserves that because I deserve that.

Doesn’t yours?

If you are concerned that you aren’t giving your diabetes the best you deserve, reach out and ask for help.  I’m here; and you are not alone with this.

Living life with type one or type two diabetes requires a lot of work.  It’s amazing how we all deal so differently with that workload.

Some people stay in denial and don’t do a thing: don’t take their medication, don’t change their habits after diagnosis, do precisely what they know is damaging to their bodies, or fight every day to not acknowledge what living with diabetes takes.

Some people immediately take their doctor’s instructions to heart, learn all there is to learn, do everything precisely “right” and are probably their doctor’s star patient.

Some people learn quickly that routine is their best friend, and never vary from day to day: breakfast is food X, drink Y at time Z with insulin A at the same time every day.  Any variance is a threat.

Some people think “I just have to do this until…” and some people think “I will be able to get off medication” and some people think “It’s no big deal.”

Some people change everything.  Some change nothing.

Some people fight for their child: 504 plans, Americans with Disabilities ride passes at Disneyland, attendance at every JDRF event imaginable: Let’s Get Rid of This Horrible Disease.

Some people participate in clinical trials, some people see a physician once a year to get their insulin prescription renewed. 

Some people live with diabetes, others are diabetics, some are persons with diabetes.  Some are patients, some are advocates.

Some people tell everyone.  Some people tell no one.

Some people see their diabetes as the hardest thing they’ve ever dealt with.  Some people struggle every day.

Some people ask “why me?” Some people don’t care.  Some only ask in the dark.

Some people won’t go to the grocery store without their meter.  Some people don’t know where their meter is right now.

Some people can recite their past three years’ of A1cs.  Some couldn’t tell you what the last one was, nor when it was taken.

Some people make charts and graphs.  Some people don’t.

Some people go by how they feel.  Some people can’t recognize a low.

Some people love their doctor.  Some love their Diabetes Educator.  Some can’t stand any part of a medical visit.

There are of course a lot of extremes and most of us probably wander between the extremes through the years of life with diabetes.  Certain times of our lives will prompt greater focus on our disease, and some periods will necessitate greater distance in favor of a different focus.

It’s always there, always a part of us, no matter what we do.

It’s our diabetes.

Ah, Life.

Life is so dangerous when you live with diabetes. 

It’s so dangerous it’s amazing we make it out of bed.  It’s so dangerous every time we take a shot or prick our fingers we might get an infection.  If we don’t we live in fear of long term complications.  If we need sugar we need it immediately or we could die. 

It’s dangerous.  It’s immediate need just on the other side of our consciousness at all times.

It’s scary.  It’s serious.  It’s a full time job without any breaks.  We count everything.  We don’t eat without thought.  If we do, we are living on the edge.

We need to have emergency supplies of quick sugars, emergency supplies of medication, extra medication in case the original supply gets too hot or too cold or randomly goes bad.  We need to carry emergency syringes in case our pump konks out.  We need to be within an hour of insulin at every moment of every day.

It’s dangerous.

It’s complicated, and it’s quiet. 

Living with danger.

 _______

I tell you; just writing the above few sentences exhausted me. 

I don’t deal well with articles or mentions or people who feel a need to highlight the dangers of hypoglycemia or the dangers of hyperglycemia or the dangers of whatever or the struggles we face every day.

I really don’t deal well with it at all.

I’m not saying I ignore any of the above dangers.  Yes, I know what could happen.  I also know what could happen when I cross the street or get on a plane. 

I just don’t agree with highlighting it all the time—we’ve all sat in a medical office and heard the lectures; we’ve read the articles; we’ve answered the questions. Heck; we all get into our cars multiple times every day despite the dangers involved.

When it comes to life with diabetes, we’ve felt most of those dangers, too.

And, amazingly enough, we’ve kept on keeping on. 

It isn’t the people living with diabetes who highlight those dangers, I don’t think.  It isn’t those of us who have felt what a blood glucose of 27 or 538 feels like.

We don’t need to mention it—we’ve felt it.

And I, for one, continue to keep on keeping on; doing my best every day to live my life.  With and without the danger attached to living with diabetes.  I can’t see it as “dangerous” when it’s my daily reality.

Maybe I should get myself a leather jacket and a Harley—I’m such a thrill seeker. What do you think?

So I learned recently (because I never looked it up or remembered before now) that you are a med student, then an intern, then a resident, then a fellow.  I’m sure there are a few more (HA!) steps involved, but super basically that’s it. 

This means that the fellow I saw last week at my doctor’s office has had at least 7 med-school years behind her.  And I must say that if she wants to work with patients with type one diabetes she probably should spend some more time learning before she goes one-on-one with a patient with type one.  She seemed like she had a lot to learn, despite knowing a lot of the calculations and science behind my pump readouts.

As we all know, it’s a lot to learn.  A LOT.  I’m sure for a physician it’s even more to learn than the rest of us!

(That doesn’t sound very fair, and that’s not how I intended that to sound: I don’t have any particular issue with her— but I was glad she isn’t my doctor.) 

For one thing, the fellow kept looking at my doctor for answers to her questions about my diabetes instead of looking and listening to ME. 

Yes, I am the rock star in the room at my own visit!

Which was fine; she hadn’t ever met me before and she was there working to learn from my doctor.  And, my doctor knows a lot about type one diabetes.

But then the two doctors started discussing my sensor.  Saying things like “a representative told me it didn’t work very well with pressure” that they thought would be a help for me to learn.  At that moment it really hit me like a ton of bricks in a crystallized vision I hadn’t seen with such clarity in a while.

They don’t understand what it’s like to live with diabetes. 

Really, truly, LIVE in the mundane, somewhat silly yet important ways that teach us something with every experience, every day.

Most of us with a sensor who has worn it on their hip and fallen asleep at 200 and woken 30 minutes later to a false “low” alarm knows that it doesn’t work when you’re sleeping directly on your sensor.  Any of us who have worn it underneath tights or (gah!) nylons and have been alerted to a false low can tell you: the sensors don’t like pressure.  (It makes sense, given that the sensor uses measurements from your interstitial fluid, that if your circulation of interstitial fluid is impeded by your body weight or by compressing clothing, that the sensor won’t work as it was designed.)

So the fact that neither of these women had worn a sensor for 3 days (ever, I imagine) seemed off to me.  If I was a physician and I could try something that might give me an insight into my patients’ daily life with their disease, I would like to think I’d try it out. 

Then again, what’s the point of wearing a sensor if your pancreas works?  They wouldn’t ever get an alarm, much less any of the 13 I got between 9:30pm and 5:00am last night.

Maybe it’s that I want to think my doctors WANT to know what it’s like to live with diabetes… which is kind of strange, as I tend to think I’d never wish diabetes on anyone. 

As we all know, life with diabetes takes a heck of a lot of knowledge and everyday teensy things that end up teaching us more and more. 

No matter how many years of school and training they put in, it’s beyond me why we consider our doctors the “experts” in diabetes.  Sure, they know a heck of a lot and are incredibly skilled and talented in their own right… but I have to consider myself the expert when it comes to my diabetes.

23 years of daily life is longer than any formal medical education, anyway.