"Your message is in the system."

So... (this is how most of my blog entries start).
The traditional health system in this country sucks. I mean, royally blows. It's pathetically broken.

I've been having a fun time with high blood sugars. And by high, I mean 120-200, which is by no means crazy high. Ever since I started my anti-diet (I had bacon fried in oil, topped with guacamole for breakfast), I have had really good control, and very few highs over 150.

Starting two days ago, my blood sugar started getting really stubborn and would not be nudged down with insulin. I took far higher doses than normal, but still no dice. I corrected for a BG of 180 with 3 units (each unit brings it down 35 points), so it should go down to 75.

Didn't happen. Only got down to 160.

No matter what I tried (short of crazy dosing with 10 units--I didn't try this as it would likely kill me), the BG stayed high, or came down temporarily and bounced back up.

Like a good diabetic, I called my endo yesterday morning. I explained it to the nurse (remember, a nurse in the clinic once told me that I could ease up on testing now that my A1c was 6.1).

"My blood sugars are not responding to insulin," I explained. "I've taken twice as much insulin as would normally be needed, plus a max dose of symlin. I haven't eaten anything carby, and still the BG is not budging. I don't know what it could be -- my insulin, my pump, perhaps I'm getting sick, maybe it's my time of the month... I am concerned that I might be in ketoacidosis. Here's what I've done: I've increased my basal rate by 35% and am drinking lots of water."

She said someone would get back to me.

NOBODY GOT BACK TO ME.

I called back in the afternoon.
"Oh yeah," I was told. "Your message is in the system."

Oh crap. Now I know I'm doomed.

NOBODY GOT BACK TO ME.

Here I am, potentially stewing in my own toxic acidic blood, and "my message is in the system."

Taking matters into my own hands (and after polling the myglu.org community), I went and did some yoga flows and strength training to get my blood flowing. By the time I was done, my levels were below 60.

OK. I can deal with lows. I turned my pump off for an hour, and it came back up slowly. The night was OK, never went above 125. Woke up this morning, went to work out, blood sugars are looking good.

Then, after eating breakfast (bacon and guac) and sitting down to work for an hour, the stubborn BGs are BACK! My blood glucose was 180. I took a total of 8.8 units (6.8 through the pump, and an additional 2 injected just to make sure it was getting in, plus 60mcg Symlin), and it only came down to 140! WTF, as my husband put it.

I called the clinic back. She said, alright, she'll make sure the doctor gets the message and will get back to me. I told her to note that I understand that they do not approve of my diet, but they will never convince me to go off it.

A few hours later, here is the call I receive from a nurse in the clinic:

Starts out with a disclaimer: "We do not recommend the zero carb diet, but if patient wants assurances that she is not in DKA, she can come in and take a ketone test. I recommend increasing her basal rate by 0.1 units and setting an alarm for 3:30am to wake up and test to make sure she isn't low.
I recommend the patient see if she is eligible for the continuous glucose monitor."

How does one describe the biggest pile of stinking, unhelpful dogcrap ever known to pass as "patient care?"

There are so many things wrong with this. It should be obvious, but I'll still take the time to outline why there are so many problems with this chain of events.

1. If the doctor is too busy to deal with patients, he should not have any patients.
2. This is the very doctor who prescribed me the CGM, so his advice to get one is just pure laziness on his part. 
3. Really, doc? You thought I was calling to ask what my basal rate should be set at? Do people still do that? Did you not get the part of the message that I had to relay through 3 different nurses that I already upped my basal by 35%
4. Lastly, and I say this with the utmost patience, it is not a ZERO carb diet. That is next to impossible to achieve. It's a 30-50g carb diet. But thanks for your accuracy and your malpractice concern.

I said thank you to the nurse, who clearly didn't know what the hell she was talking about and at several points in the conversation, actually said, "that's what the note says."

I also expressed some of the points outlined above and said, as I'll say again, THIS IS NOT CARE.

Here's my unsolicited advice. Get a doctor you like and who works with you, even if they are out of network or not covered. Honestly. I called my new doc, he called back right away. He took a moment to tell me sorry for the frustration I was experiencing, and brainstormed a series of events to try to make sure I was dealing with the problem (switch to long-acting to make sure it's not the pump's fault), and insisted that I check back in with him later in the day.

Going rogue... with the guidance of a medical professional

Ever have one of those moments where you decide to act upon something you have been thinking about for a long time? Well, I'm having one of those moments. It feels like I'm breaking out of prison.

Fine, I'm not batting 1.000 as one member of tudiabetes.org put it. We will see what my next A1c is. I can't be sure it's amazing, but I do know that I have been AT EASE for the past 3 weeks. Ever since Feb. 7, the day before my birthday, when I decided to break up with carbs.

The moment I spoke of before was not deciding to break up with carbs, but was the moment I went into my online health portal and CANCELED all my appointments. It was symbolic, of course, because I can always go back in and reschedule them. But still...

So, here's a breakdown of how everything has been since then:
I went to see this holistic doctor. I had seen him before. Before I was on the University of Michigan's HMO, when I was still on COBRA and I would have had to pay outright no matter where I went. But when I jumped on the UM HMO, I made decisions based on what would be covered. So, instead of seeing the doctor I wanted to see, I ended up with 5 doctors that I didn't want to see: a PCP, 2 endos, a pump specialist, and a nutritionist. All with a copay of $20-30, so I didn't even end up saving anything! (The holistic doc charges $105 per visit.)

UNSOLICITED ADVICE: Paying out of pocket for GOOD medical care is a much sounder financial decision than paying copay after copay for BAD medical care. 

Here's what I liked:

1. He gave me a hug when he saw me, and upon parting (warm fuzzies!)
2. He has a dog in the office that is super friendly 
3. He is willing to say "I don't know" when he doesn't know (unlike, ahem, some people in the diabetes clinic who would rather spout off 45 minutes of 100% grade A bullshit than admit they don't know). 
4. He's totally on board with low-carb (He said, "Anyone who isn't on board hasn't read the literature in the last ten years). I happen to think they are unwilling to depart from the old ADA guidelines, even though ADA has now updated their guidelines to say that, in fact, there isn't a one-size-fits-all approach to carb intake, and even reference studies with 20g daily carb up to 40% of calories from carb as having great impact on glycemic control. 
5. He's going to "go rogue" with me... ie: be there to give me sound medical advice, but not treat me like a number (test result number). He told me to still see my endo, and I told him, fine, but I'm just going to smile and nod and then go off and do what I feel is right. 
6. He isn't going to designate me as a "high-risk" anything, because I'm not high risk. My numbers are good. I'm super healthy. I don't need to be cradled and babied just because I have type 1. I can experiment with things like diet and exercise and that's OK. I don't have to sit still all day and nibble on three meals and three snacks throughout the day and eat the same thing and never try anything new.

And now, for an update on my BGs:

It's a bit rocky (by my new standard) today because I am entrenched at work with a deadline. Finally got my report in, and my CGM didn't beep at me all day, so I only just now looked at it.

Funny--when I first got it, I was OBSESSED. I looked at it all the time. And was often surprised at what was happening. Now I kind of assume my BG is in range.

Breaking up with carbs, too

It's been two weeks since I decided to go low-carb. I'm talking LOW carb. Less than 30 grams/day. Some days my carb intake creeps up to 50g, but I always make sure my net carbs are staying under 30 (total carbs minus fiber).

Other closely related nutrition philosophies include: Paleo, Atkins, South Beach, The Zone, Ketogenic (more accurate for what I'm doing), Dr. Berstein's Diabetes Solution, Primal Blueprint...

I started on Feb. 7, the day before my 31st birthday; 18 years into my life as a type 1 diabetic. 

The result has been this: I have never had such good control. My lows are as low as 50 (one instance in the last 2 weeks), but usually no lower than 60 (also rare, and I don't feel them because my body isn't relying on blood glucose for energy). My highest high was 250 on the second day of this experiment; other than that, it's gotten as high as 210 twice, the next highest high was 170 (about 4 times), but mostly stays under 140 after meals.

And as my body adapts to this new way of doing things, it's getting better.

• The last 24 hours didn't see a blood sugar over 125. 
• I went to the gym for the past three mornings and didn't worry about getting low or high. It stayed FLAT.
• I've been able to get OFF the constant snacking that is required by the traditional restricted calorie, low-fat diet. 
• I'm warmer.
• I am NOT hungry. Seriously. Not ever. Unless I go for 24 hours without eating. Then I get cold and hungry, but only after around 20 hours without eating. It's called intermittent fasting. Google it.
• I'm feeling more even keeled/sustained energy.
• I have reintroduced nuts into my eating! And dips. And bacon. And other delicious, satisfying foods. Just no carbs (but I do NOT miss them).

Here's my 24-hour readout from Dexcom. The "high" is set at 120 (this used to be my target BG, not my target is 90).

Can you guess when I ate? When I worked out?

I would absolutely recommend this plan to anyone willing to do the research it takes to understand it, and who is willing to be 100% committed to giving up carbs. This means (for me at least):

• No sugar
• No bread
• No pasta
• No grains
• No fruit (except <50g berries)
• No milk (too sugary)
• No juice, soda, Starbucks fancy pants drinks, hot cocoa, etc.
• No tubers--beets, potatoes, carrots, parsnips, etc
• No legumes--too carby
• Careful with veggies--some might have surprising amounts of carbs. I once cured a low blood sugar with Brussels sprouts!
• Make sure you have a really good understanding of the carbs in foods--cashews, for example, have 8g carbs in a small handful! 

Here's a typical day for me these days:

Breakfast: Breve latte (half & half + espresso), cheese omelet, turkey sausage
Lunch: Avocado, Soy pups, tehina sauce, unsweetened iced tea
Dinner: Coconut chicken curry, cauliflower mash, with peanut butter balls or cheese for "dessert"

It's not a lot of food because fat is more densely packed with calories. 9 calories per gram as opposed to 4 calories per gram for carbs and protein. 

I am NOT doing this for weight loss, although I did lose a lot of weight in the first week as my body emptied its glucose stores (which requires water). I'm hoping that I will lose a bit of weight as I stay on this plan (and bring down my calories), but I am entirely doing it for BLOOD SUGAR CONTROL.

My endo told me not to do it, so I fired her and found a new doctor. She couldn't really give me a reason not to do it. The nutritionist pushed me to eat at least 130g of carbs a day, so I also fired her. Her reasoning is that your brain needs glucose--which is true, but the body has a mechanism for making glucose from protein, a process that results in much smoother blood sugars than carb consumption. Check out my previous post for a recap of that frustrating set of events.

Here are some amazing resources I have come across:

Mark's Daily Apple
Dr. Mercola - does video interviews with some of the best thinkers on nutrition and sports
myglu.org is a community of type 1 diabetics, and supporters of type 1 diabetics. There are a good sprinkling of type 1s who are catching on to this way of controlling BGs
Dr. Bernstein's Diabetes Solution - is a quirky read that has revolutionized the way I think about blood sugar management

Also -- playing with intermittent fasting. It tends to push your body to more quickly adapt to dietary fat as energy. 

Here's my Pinterest board for good recipes for low-carb, high fat foods.