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When the Star Player Goes Down December 17, 2013

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I didn’t expect the appointment to go well. I recently switched back to multiple daily injections (MDI), and struggled to maintain a solid focus on waiting to eat, carb counting and over treating. I expected about a week of mountain-range style numbers while I adjusted my insulin dosages as compared the pump.

But not two months of drastic up and down numbers. Two months (for me) is more than an adjustment period – that’s frustration, emotion, lack of caring, lack of effort, lack of interest and not enough time to ‘fix’ it all before my next endo appointment.

I knew how to fix what was wrong. I just wasn’t doing it. I knew I would walk into this appointment feeling somewhat guilty, unprepared and defeated. I expected to leave slightly motivated, but not necessarily encouraged for the long haul.

But my endo team cared. Nobody was disappointed in me. Nobody was mad at me. Nobody made me feel guilty or like I had failed. Nobody insinuated that I was dumb or incapable.

My endo team cared. My nurse cared that I was am struggling, and provided a few simple things to work on. My endo was worried about my too-close-for-comfort-night-lows that some people don’t wake up from, or wake up from in the ER. He wasn’t worried about my highs. Other people don’t worry about these things because I don’t often share. But at the endo’s, that is his sole focus – to help me keep me safe and healthy.

I left feeling cared about. I could handle the few things my team suggested. I wasn’t overwhelmed with my failures or the solutions. My endo team IS a team. A team where I am the star player. A team where if the star player is hurt, the team rallies. A team that pushes you to be better, catches you if you fall and helps you back on your feet.

That’s a team I want. And it’s a team I need to remember that I AM on.

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If You Want To September 6, 2013

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“…if you want to,” said my endo. He added on this last phrase, as an afterthought.

My endo plays significant roles in many top Type 1 diabetes studies, including a recent study for the closed loop solution with automatic suspension. Essentially the closed loop system means an insulin pump and a continuous glucose monitor (CGM) talk to one another and can make a treatment decision without user intervention. A key part of this particular study is when the CGM alerts to a low during the night, the pump automatically shuts off for two hours*.

I am not cool with this.

If I turned off my pump for two hours in the middle of the night I’d be sky high by morning. Sure, you can override the turned off pump, but that kind of defeats the purpose of an automatic action. (YDMV – I can see the value of this for kiddos, worried parents and hypo-unaware folks).

I don’t trust my Dexcom CGM 24/7, the best sensor on the market today, enough that I’d be okay with it talking to my pump and making a decision without my input.

This closed loop system uses a different CGM and pump than what I currently use. I picked my system for a reason. Because it works for me and my life right now.

Those are three significant downfalls, for something that I am not convinced will improve my care. And “…if I want to.” is the LAST phrase from my endo after his spiel?

I’ve lived with diabetes for a long time. Since I was old enough to make decisions, I made the decisions about how I handle my care. Yeah, I could be in better ‘control’, but the things that often throw me out of control have nothing to do with my choice of treatment tools.

So Dr. Endo, you are absolutely right – if I want to. It is my decision, not yours. I value your bias yet educated opinion, but only if I want to, will I take action. The tools I use every second of my life – those are tools that I use because I want to. Because I see their value to my health and because I want to find a way to incorporate those tools into my health care.

Don’t you dare make me feel guilty if right now, I don’t want to.

*Note: I am not a doctor. I have not read the study details. Talk to your doctor or do your own research for the scientific facts. The study is titled Threshold-Based Insulin-Pump Interruption for Reduction of Hypoglycemia .

Faprocar? Profaca? Carprofa? Huh? June 11, 2013

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“Okay, so tell me what I just said.”
Never once has a doctor asked me to repeat whatever he just told me. My face must have given me away because he said, “It’s complicated; a lot of people don’t get it.” I did as requested, and nailed it.

“Good,” he said with approval, “let’s see if that helps.”

What was it that I was repeating? A new meal calculation to bolus for protein. Protein + fat bolusing (profa? This needs a name). I’d coasted along with my 1:10 insulin:carb ratio (inject one unit of insulin for every 10 grams of carbohydrate). Pretty simple – I often do the calculation in my head, round up and manually bolus.

But that wasn’t working out quite right, so we added a second part to the equation: fat + protein. The sum of that gets a 1:20 ratio. This sounded like an interesting plan of attack, and I am willing to do the extra math for now. Last week’s lunch was a lettuce and hummus sandwich.

Hummus: Fat 3g, Protein 2g, Carbs 5g, Fiber 1g.
Ezekiel 4:9 Bread (1 slice): Fat 0.5g, Protein 4g, Carbs 14g, Fiber 3g.

The carb (1:10) ratio uses total carbs – total fiber.
For this sandwich, (2 x (14 – 3)) + (5 – 1) = 26. 26 at a 1:10 ratio means 2.6 units.

The profa (1:20 ratio) uses total fat + total protein.
So, (2 x (.5 + 4)) + (3 + 2) = 14. 14 at a 1:20 ratio means 0.7 unit.

Lettuce and hummus sandwich!

Total lunch bolus for what I’m eating (forget exercise or blood glucose corrections) = 2.6 + 0.7 = 3.3 units. Cool.

But, during my endo appointment it slipped my mind that I consciously shop low carb, high protein for a variety of reasons that work for me. Now I have to count protein into my insulin ratios as well? I felt unsettled.

When I look at a nutrition label, I first look at carbs. High carb items usually return to the shelf. Next, I look at protein (I’m still trying to remember to consider fiber). In my mind, the higher the protein without crazy calorie count is a food win. Except now I feel deflated about adding protein.

It seems in diabetes, large numbers often equate to failure, trouble, guilt and exasperation. A low-carb fake chicken breast (vegetarian active chick here) with 15 g of protein adds more insulin, so I question if it’s worth eating. I know that will barely add one unit, and with most meals it won’t be more than a half unit, but it’s yet another number. Another consideration. Another math problem. Another judgment. Another emotional hurdle.

And homemade food? Ha. I’ll let you know how the math is working on that in a year or so.

Share and Don’t Share: #DBlog Week, Day 1 May 13, 2013

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Dblog Prompt: Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see? *Writer Note: Big surprise – I got side tracked with this prompt…

Pretending my medical team read my blog left me with a not pretend, audible, uh-oh. This blog is about sharing my achievements, fears, frustrations and struggles pertaining to diabetes. I hope that my readers can relate or learn from what I share. Knowing that I have readers, and that some of you relate to almost every post is a huge part of why I write. The idea that my medical team might be part of that feels awkward. However, a medical team that also provides emotional and mental support or professional attention is a relatively new idea for me. My endo is the core of my medical team; he is also the one I see most often. My endo is about numbers. He needs to help me find patterns, relationships and new solutions. That has worked for me in the past, and it’s working now. He knows what activities I like, and he’s learned not to comment on the dangers of new tattoos.

But he doesn’t know what you all know. He does not know about the low that shook me to my core. He does not know about the perfect flat line mountain biking day.

And he doesn’t need to. I don’t want to discuss all that with him.

However, adding other medical members to the team who are trained to listen, talk, educate and help is something that makes sense to me. I do think a counselor or psychologist should be continuously suggested or offered as part of an endo appointment. Asking for some help is hard. Thinking about help because your medical team sent a referral, or because you are expected to include that person as part of your diabetes care – that might be easier.

Day 25: But I Know… November 26, 2012

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Today’s Topic: How have your goals as a patient/advocate/person evolved?

I drifted away from the health focus the last two #NHBPM entries, so to refocus, I’m choosing the patient view for today. My goals as a patient are evolving to be truly mine. My endocrinologist might support or help direct those goals, but they are not his. He’s happy so long as my out-of-range bumps are few and far between, and not too extreme.

But I know that HIGH peak was because I ate Ben & Jerry’s before going to bed. No part of me needed that.

I know that LOW dip was because I waited to long to treat. I knew better.

I know that ridiculous N shape was caused by eating something yummy (but fatty) to treat, followed by a rage bolus, all while not drinking enough water.

What diabetes does is out of my control some days. But there are so many things that I do have control over, and that I could have done correctly. My goals as a patient go beyond hitting certain numerical values. My goal as a patient is to live correctly. To give myself health that I deserve and work my ass off for. While to err is human, that is not an excuse for nonexistent or easy goals.

Three Months in Two Weeks May 29, 2012

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When it comes down to it, my life is on the line- shouldn’t I feel more accountable? @sixuntilme tweeted during a recent DSMA chat, After an endo appointment, I feel empty. Regardless as to our own reasons, I agree without a doubt. Empty.

I feel empty because three months of work, three months of my life, three months of effort, three months of mistakes, are summed into one weight number, one A1C value, one printout of Dex lines over the last sensor life, one pump printout, and one meter printout.Endo Appt Paperwork

Sometimes it feels like everything paid off. Sometimes I leave the office feeling proud, other times in tears. But almost always Empty. Empty, but motivated. Empty, but with a mental action plan to eat right, exercise, sleep, count carbs, research pump setting suggestions. Yet often times two and a half months fly by and I find myself thinking, well shit, I have a lot to do in two weeks.

I know I shouldn’t eat before bed.
I know to count carbs and bolus appropriately.
I know I shouldn’t snack.
I know that no matter how low I am, a mango without insulin is a bad idea.
I know that the Sprouts peanut butter & chocolate trail mix requires some serious combo-bolus knowledge.
I know to wait half-hour between insulin and coffee in the morning.
I know I should have acted on these actions two and half months ago.

And the list goes on. Sometimes remembering the list is like reciting the alphabet; other times it is alphabet soup without a spoon. These are all things I ought to be thinking about 365 days a year- how do you stay motivated to remember your I know list?