Walking A Mile

Easy-3They say that you really don’t know someone until you’ve walked a mile in their shoes. Well, I’ve never walked a mile in the shoes of someone who has type 2 diabetes or gestational diabetes or someone who was diagnosed with diabetes as an adult or any other variation of this dreadful disease. And there are a lot of variations.

When I saw the prompt for this month’s DSMA Blog Carnival (which I’m horribly remiss in responding to regularly), I was stumped:

Anything easy about living with your type of diabetes that isn’t easy for another type?

There are a few things about this that made me question whether or not I could even answer a question like this. First and foremost, I speak for my diabetes. Not yours. Or hers. Or that guy over there. Just me. And my perception of what is “easy” may not be so easy for someone else.

The second thing that got me thinking was that I don’t really know what is easy or hard for another type of diabetes because I don’t live with that disease. For example, I have a horrible gag reflex. I choke on aspirin. I had a hell of a time taking metformin a few years ago when I decided to see if I could help my insulin resistance. So to me, taking injections is easier than swallowing a pill.  Does that mean taking injections is easy? Not by a long shot (ha! pun!). But other people might think, Allison, it’s a freaking pill once a day. Get over yourself.

A few years ago, I had dinner with a friend of mine who has type 2 diabetes and she mentioned how her blood sugars affected not just what but when she could eat. She said if her blood sugar was high, she would have to delay a meal and often would go on a walk to bring it down. She couldn’t just pop a pill to lower her blood sugar. It took a lot more effort. I remember thinking that sounded terrible, because I just pressed a few buttons on my pump and that took care of business.

I suppose the flexibility to take insulin whenever I want is a perk of type 1 diabetes… or at least, a perk of someone who uses insulin. (And if there’s even such a thing as a perk with diabetes.) But using insulin comes with a whole host of things that are not easy. Pump failures. Bad insulin. Poor absorption. Miscalculating carbs and crashing or soaring. It’s really not that easy.

I can’t even talk about stigma, because the stigma against type 2 diabetes often trickles down to the rest of us who bear the title “diabetic.” I suppose there is less outright discrimination against me, because most people have a general concept that type 1 diabetes is not lifestyle related.

“That’s the one you’re born with, right?”

“That’s the really bad kind, right?”

“Should you really be eating that?”

I might not be discriminated against, but my ears are still bleeding.

On the surface you might think, “Well, type 1 PWDs can eat whatever they want,” but that mentality can end up being a lot more dangerous and counterproductive than you’d think. I don’t even want to think how many high blood sugars I’ve suffered because I thought “Well, I can just bolus for it” and then completely underestimated what I was eating. I might not have to suffer with people telling me that I “did it to myself” but I still have to listen to stupid, ignorant remarks and misguided advice from the Diabetes Police. And while I didn’t have to integrated diabetes into the already chaotic world of college, I still had diabetes in college and it still sucked, regardless of how long I’d had it.

But I will tell you what I do think is easy. I think it’s easy to think that you have it worse than someone else. We live in our own skin with our own experiences coloring our perceptions. We struggle to overcome the obstacles that diabetes puts in our way and because we are so intimately familiar with our own journey, we can feel each painful rock we have to step on in order to get where we want to go.

We are so focused on our own arduous path that we rarely look over to see if someone else needs help. We judge people based solely on a few sideways glances, never really looking to see what they’re working against.

I think it’s easy to think we have it worse than someone else. It’s much harder to swallow that belief, make ourselves vulnerable and ask if there is something we can do to serve other people.

That Time I Ran A Half Marathon

B0z0cM_IgAAaVbBSo, I ran a half marathon on Saturday.

I know, I know. I didn’t really tell anyone about it. I had a couple false starts this summer with other half marathons and I got a little gun-shy talking about it. I didn’t even really talk about it on my other blog. But I did it! Want to hear how it went? Good, because I’m telling you anyway!

Friday evening a couple of my local D-friends and their respective husbands came over for dinner. Even though it was right before a race I felt comfortable because they are both healthy eaters so I knew I wouldn’t have an issue. Well, turns out I did! Not with high blood sugars, but with lows. I crashed pretty bad after dinner (I think I overestimated the carbs) and ended up having to drink and eat more than I expected.

At about 4 am I woke up to a blood sugar of 187 mg/dl on the Dexcom, and took a baby correction. No, I didn’t test. Yes, I know better. I’m sorry…

I woke up at 7:00 am with a blood sugar of 90 mg/dl. Not terrible. But context is king in diabetes and I was not so happy with that number at that time. I had a gluten-free piece of toast (more on that another day) with some chocolate peanut butter and coffee then we were out the door!

When we arrived at the start, I took a quick test. I was only going to carry my Dexcom with me, and Erik was going to meet me at the halfway point for a quick test to see how on track the Dexcom was. At that point, I was 89 mg/dl. Ugh. So I gulped one of two juice boxes I had (the other would be staying with Erik if I needed it at the halfway point) and prayed that would be enough. I was carrying five HoneyStinger gels which have 25g each. I only planned on using 3, maybe 4, so I anticipated it being enough but I was starting to get nervous!

I felt really good for the first couple of miles, but at mile 2.5, I heard a familiar buzzing sound. It was my pod. My pod had failed. As predicted.

You see, as much as I love the Omnipod (and I really, really do like it a lot), it has this really unfortunate tendency to fail on my runs. It doesn’t happen all the time and it doesn’t happen with any particular mileage or any particular pod placement. But if it’s going to fail, it will be while I’m running. I had actually prefilled a pod earlier that morning in anticipation of this but, as luck would have it, that doesn’t work.

Pods apparently start a timer when you put insulin in it, and by the time my pod failed, the backup pod had already timed out. The PDM couldn’t recognize it as being a new pod. I quickly called Erik and told him he need to go home, get a new pod and bottle of insulin, and meet me at the halfway spot, which was 4 miles away.

Just a little while later, the Dexcom started buzzing that I was below 75 mg/dl. Ugh. I was at Mile 3, and had planned to fuel at Mile 4 so it wasn’t too far off from my plan. I took a little extra walking break but continued my run / walk pace because I felt just fine. In fact, I’ve noticed that the lower my blood sugar is, the better I run, so long as I don’t actually have hypoglycemia symptoms.

After mile 6, the Dexcom alarms again that I’m 58 mg/dl. I’m not sure I believe it but I take another HoneyStinger just in case. I wasn’t far from where I was planning on fueling again anyway. Erik calls me just before I reach our meeting place, and he’s actually behind me, so he sprints to catch up! We pull over and I do a pod change and BG check. I’m actually 108 mg/dl, and I’m glad I checked. Dexcom can be such a little liar sometimes.

I take off again and manage to keep a pretty good pace for the next few miles. The Dexcom doesn’t alarm at all the rest of the race, but I take a HoneyStinger at Mile 10, and a little bit of Powerade at mile 12.

I finish the half marathon with a time of 3:05:34 and a BG of 187 mg/dl.

The first half of the race projected me at a sub-3 hour, and I know that stopping for a pod change really slowed me down. I’m pretty pissed about it, because I don’t know what to do to stop it from happening. I’ve been on the pod for over a year, and did tons of runs without any issue until it started this past August. Part of me wonders if there’s something funky with the last shipment of pods. There just isn’t any rhyme or reason to it. I wish I’d known not to prefill a pod, because it was such a waste of time. If I’d had a pod and bottle, I could have easily changed my pod while at least walking.

I’m also pissed off at Dexcom. It told me I was 106 mg/dl at the finish, a whole 80 points off from what I was. It just isn’t reliable when I exercise. I never wear it while running or working out anymore. I find it totally useless. I don’t know why I thought I could get away with only testing once.

I definitely should have brought strips and a poker with me. My FlipBelt that I was wearing could have easily held everything I needed: a PDM (which I was already carrying), test strips, poker, pod and insulin. None of those things even weigh that much, so it’s not like that would be a big issue. I could have done what I needed to do during the walk breaks I was already taking. Sigh. Lessons learned, right?

Of course, I’m happy to just have finished. I keep telling myself that the time doesn’t really matter, at least not for the first one. No matter what, I set a personal record because I’d never done a half marathon before. Overall, it was a pretty good first race.

Yep. First race. Not last race. There will definitely be more.

 

Wanna Talk To The FDA?

SurveyOn November 3, there will be an unprescendented conversation between the diabetes community and the FDA taking place and YOU can get involved! DiaTribe wants to collect as much feedback from the diabetes community (type 1, type 2, caregiver, whoever) so that they can really know where we stand and what we need from the FDA. This is our chance!

There will be a live webcast from 1-3pm EST so you can listen to the conversation happening between patients, the FDA, and experts from ADA and JDRF. Registration and a finalized agenda for the meeting will be available soon, but save the date!

Head on over to the survey now and answer the questions. They need the answers within the next five days in order to have time to analyze the results before the meeting. I took it and it takes about 5-10 minutes to do. Very easy! No trick questions!

The After

This is the part where I usually start fucking things up.

I’ve lowered my A1C before. A quarter, a half, even a full percent. Now I’ve jumped one and a half percent and all I can think is: “How long will it last?” Because I’ve seen my A1C go down. And I’ve also seen it go up. And down. And then up. And then down.

My A1C rarely stays put and it rarely stays moving in one direction.

I get my A1C done. It’s above where I want it to be. I spend the next three months diligently counting carbs (possibly even lowering my carb count), testing more often, correcting more aggressively, exercising more often, and in general just being a totally bad-ass diabetic. Okay, well I am always a bad-ass diabetic, but this time I’m extra bad-ass. And then I get my A1C. And it’s awesome (eh, awesome-ish). So I think, great, I have it figured out. We’re all good here. Then the days, and the weeks, and the months go on and I start maybe being a little more careless with the carb counting or bolusing early, but I think, well, my A1C was such-and-such, so this one little (::cough::) indiscretion isn’t going to be the end of the world, right? Until I finally make my way back to my endo, get my A1C done, discover it’s crawled back up to where it was six months ago.

And so it goes.

It just pisses me off because I feel like good control is a recipe for diabetes burnout, but if I relax for even a millisecond everything goes to hell anyway.

I need to find a happy medium between being completely obsessive and completely lackadaisical.

My next endo appointment is on December 29th (Merry Christmas to me!), and my main goal for my next A1C is to keep it exactly the same. Well, within reason. Mid-sixes. To do that, I’m trying to focus on a few things:

1) Download my Dexcom receiver and review my graphs every time I change my sensor. I don’t do this enough. I need to do this more, and if I do it every time I change my sensor, that should be somewhere between every 7 to 14 days.

2) Change my goal BG to 90 mg/dl instead of 100 mg/dl. I saw someone recommend this a few months ago and from what I’ve seen in the last two weeks since I did it, it’s pretty helpful. By having just a tiny bit more insulin going in, I think it helps account for any discrepancies in carb counting or in absorption.

3) Not be afraid to make tweaks to my pump settings. I have a bad habit of thinking things will just “fix itself.” Sometimes it does, sometimes it doesn’t. If a pattern emerges, I should fix it, even if I might need to change it back later. It takes less than a minute to change a pump setting. I should be more proactive.

4) Have regular appointments with my CDE. Sometimes patterns don’t always make themselves known to me, or sometimes I don’t realize that by fixing something, I’ve caused another problem somewhere else. After all, our days are cyclical. What you do at one time of day can impact another part of the day. I have an appointment with Jenny for Monday, and I’m hopeful to keep up monthly appointments with her.

 

Do you have any tips for making sure you don’t start slipping back into old habits? 

 

Diabetic Living + TCOYD Recap

This weekend I drove down to Des Moines, Iowa for the TCOYD conference and for a meeting at the offices of Diabetic Living, one of the magazines I write for (I’m in their current Fall 2014 issue!).

When I arrived at the Meredith Corporation (which publishes DL), my editor, Martha, greeted me and showed me some of the behind-the-scenes of how the magazine is put together. We went down to the test kitchens, which is an enormous room that looked like an IKEA showroom. There were about six or eight fully functioning kitchens all in a row. There was a lot going on, including one cook that was making some chicken marsala that will be in next summer’s issue. It smelled so good! I love Indian food.

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Then we went to the Photo department. I saw the Prop room, which has just about every kind of dish, glass and servingware you could imagine! The room was huge. Then we went over and saw some of the photo shoots going on, including a feature on some healthy desserts. We taste tested a brownie with mint creme filling and it was pretty good! Martha says that they taste test every recipe that goes into each issue, which not every magazine does. She also explained that when they do the photo shoot, they photograph the precise serving amount you should have. It’s very technical!

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On Saturday, I went to the TCOYD conference at the Iowa Events Center. A few DOC favorites were there, but there were also a couple missing faces because of the fires in Chicago that delayed flights. So sad. But it was still a good conference!

Here are some key take-aways:

“There’s never been a better time to have diabetes” – Dr. Steve Edelman 

There was a heavier emphasis on type 2 diabetes than at some other D conferences I go to. Dr. Edelman shared that:

- Any drop in your A1C will reduce the risk of complications. It’s not a sprint, it’s a marathon.

- It’s never too late to take control of your diabetes by putting diabetes high on your priority list.

- The gene for obesity may be linked to the gene for type 2 diabetes.

- Your therapy may change over time. Even if you do everything right, your therapy may change. It’s not that you’re failing, that’s the progression of type 2.

- It’s important to get regular eye screenings and kidney labs done, because symptoms of those complications aren’t felt until it’s severe.

Change Your Mind, Change Your Diabetes – Dr. Bill Polonsky 

  • No shame, no blame. Some people believe the reason they have diabetes or not good diabetes, is because they are bad. That is scientifically not true. genetic link and often invisible environmental factors. even when we look at numbers attached to weight or when we check BGs. we must remember it’s just a number. no good or bad numbers, just information. we give too much power to these numbers, to give self-worth as human beings. “it’s just a number.”
  • Remember the good news. With good care, the odds are good that you can live a long and healthy life with diabetes.
    • 1978: more than 30% with severe vision loss, 38% with nephropathy, 10% amputations
    • 2009 – 1% severe vision loss, 1% amputation, 6% nephropathy.
    • There is a normal life expectancy for type 2 PWDs compared with the general population when you have good care.

Sir William Osler says, “To live a long and healthy life, develop a chronic disease and take care of it.”

  • Make sure that you have concrete and reasonable diabetes care goals.
    • Focus on the important stuff. Not everything is equally important. “bang for your buck list.” Being on the right medication and taking it is the biggest bang.
    • Give yourself a break. You can’t be perfect and you don’t need to be.
      • Take a diabetes vacation, just plan it ahead. how can you give yourself a little break in a way that is restorative. it’s people who take unsafe vacations like ignoring the disease for 20 years. Talk about it with HCP to get a little break and get what you need.
  • You don’t have to do diabetes alone.
    • Find people who will root for you and help your loved ones help you. Have conversations with loved ones who are supporting your efforts, but sometimes you might have people who are giving you too much support. They all mean well but you end up working against each other. They are always coming from a place of love and caring but they may not know what to do. Because they love you, they are never going to stop. You have to distract them, give them something clear of how they can help.
  • Develop a sense of humor.

CGM: Revolutionizing Diabetes Care – Dr. Jeremy Pettus and Kelly Rawlings

- According to new studies, the Dexcom really is more accurate than Medtronic

- However, Medtronic is an integrated system and the 530G has the Low Glucose Suspend, both of which could be very useful for some people.

- Dr. Pettus suggests that in the future, rate of change arrows will play a bigger role. If your blood sugar is 200 mg/dl and rising, you might need more insulin than if you were 200 mg/dl and dropping. He said that at first we’ll learn to do it manually, and then later it will be automatic.

- Dr. Pettus, who has type 1, boluses off his CGM almost all the time. (Not sure I could be that brave!)

- One patient of his uses the Earthquake app on his iPhone to make the alarms louder!

Diabetes Criminals and Diabetes Police – Bill Polonsky and Steve Edelman

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This was a session where patients and healthcare providers had a chance to air their grievances.

- Patients shared that providers are often: not interested, don’t listen, give bad advice, and aren’t empathic.

- Providers shared that patients often: don’t come prepared, stop taking medications without consulting with their doctor, won’t spend the time to get educated, feel like they are working harder on their diabetes than the patient.

- Edelman and Polonsky shared that: patients should come prepared with a short agenda to maximize efficiency with time, show appreciation for what their doctors do, and understand that providers went into the field to help people but they are under a lot of stress.

- They told providers that no one asks to have diabetes, so we need to be careful not to blame patients. Guilt does not create motivation.

Keynote speaker – Joe Piscatella (a motivational speaker and author on living healthy)

- Stress is a major reason why people don’t take care of their health, because they are stressed out and don’t feel they have the time.

- Major causes of stress:

  • Multitasking
  • Anger and hostility
  • Depression
  • Constant connection

- No such thing as stress reduction, but you can learn to manage stress. You learn to manage diet and exercise better.

  • Deep breathing (in through the nose, stomach out, hold it, out through the mouth for 5 beats)
  • Dxercise – the most important element: regularity by getting a partner
  • Perspective — it’s the way we view an event that makes it stressful or not stressful.

Joe shared that he had coronary bypass surgery at age 32 and was diagnosed with an aggressive cardiac heart disease. His doctor told him that he should continue on living the way he was, because there was no hope! He would likely not see his children, then 4 and 6, graduated high school. But his wife believed that he should do whatever he could to live a healthier, longer life.

She said, “You can’t change the cards you’re dealt, but you can change the way you play them.” 

Now Joe is in his seventies, and has seen his children graduate high school, college, grad school and law school and has four grandchildren! Now that’s the power of positive thinking and healthy living!

One Week As A PWD

Awhile back, I learned about Michelle Litchman — a nurse practitioner specializing in diabetes in Salt Lake City — and her Fakeabetes Challenge. The Fakeabetes Challenge is a one week challenge where a non-PWD who works in healthcare attempts to live like a PWD by wearing the gear, testing blood sugar, and counting carbohydrates. It’s not a precise replication of the real experiences of a PWD, because they don’t have to deal with the physical feelings of highs or lows, but it’s a pretty good approximation.

I was partnered with Amy Reeder, an RD and CDE, who wore an Omnipod demo pump, tested her BG, counted carbs and reported what she was doing to me so that I could give her feedback on what it might be like if she really had diabetes.

We started randomly on a Wednesday afternoon when I texted her that she had diabetes.

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Over the next week, she would text me when she tested for a meal and I usually texted back with a slightly different BG reading than what she had. Obviously, being a non-PWD, her blood sugars were pretty perfect. 80s and 90s pretty much all the time, although a couple times she was in the low 100s. One time, just before going on a walk, she was 58 mg/dl! All on her own! I was super surprised, not realizing that a non-PWD could get that low. Obviously she didn’t feel it the same way we would, but it was still interesting to see that there was some variation in her blood sugar.

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It was kind of fun randomly texting her with high and low blood sugars, especially since at first she would go on walks or hikes without changing her bolus at the previous meal. It took a couple times before she caught on that she needed to do things differently!

For me, I think I was most surprised at how often I think about diabetes! Obviously I think about it a great deal, but I think a lot of it is woven into my day to day thoughts. It so fluid, whereas working with Amy meant stopping and thinking, “Should I text Amy about this high or low blood sugar?” I realized in texting her several times a day about what was going on that I really do think about diabetes a lot! It’s kind of insane the amount of brainpower that goes into managing diabetes. Sometimes I wonder what I would do if I didn’t have to think about diabetes all the time…

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I didn’t always text her what was happening to me because I wanted her experience to make sense for her lifestyle — going high or low because of what I was doing didn’t make sense and wouldn’t give an accurate depiction of diabetes. We are all different! So I based most of my texts off of what would likely happen to me if I was doing what she said she was doing, such as her food or her activity level. Sometimes she’d eat things — like granola — that would shoot me high, so I reflected that at her next meal. And I would change her blood sugars depending on the intensity of her exercise. Her hikes and bike rides dropped her low, whereas a short walk with the dog didn’t drop her very much. It’s all context! And nothing is ever the same!

Overall I thought it was a really interesting and obviously rewarding experience helping someone learn more about the nitty-gritty of diabetes management and how it’s not always so easy to remember to do everything and do it right. You can read about Amy’s experience here!

God’s Country

I wanted to be prepared. I didn’t want to go to my appointment with lofty expectations, so this morning I downloaded my Dexcom to see what the latest numbers said. The 14 day average was 154 mg/dl. The 30 day average was 166 mg/dl. Both of those numbers indicated that my A1C would be somewhere in the lows 7s. Better, but not quite all the way to where I’d hoped it would be.

This was my second attempt at finding an endocrinologist in Minneapolis. Although the first endo put me on Victoza, which has been working swimmingly, I didn’t mesh as well as I’d like. Another local D-friend, who just gave birth to her first baby, recommended her endo so I decided to give it a try.

I was very anxious when I arrived at the clinic because I really wanted it to go well with the doctor and I wanted a good A1c. On top of that, I had left my insurance card at home, and I was nervous the receptionist was going to lecture me or give me a hard time. But she was actually very nice about it and it worked out just fine. I had to wait quite awhile for the nurse to come get me, but she was also very nice. She didn’t ask me any silly questions about my diabetes, which was a relief.

My blood pressure was taken, and it was surprisingly on the low side. I had expected it to be a little higher because of the appointment but I was taking a lot deep breaths! She took the blood sample for the A1C and my Dexcom and PDM to download the data. Unfortunately their Dexcom system wasn’t working, but I wasn’t too bothered this time because my last sensor was a little on the wonky side and I didn’t think it would have been that valuable anyway.

Eventually the endo arrived, and she was very cheerful and smiley. We started off talking about where I was from, what I did, school, my previous work at DiabetesMine, my blog, that sort of thing. We started talking about my management, and then she realized that the nurse hadn’t brought back my A1C reading, so she went off to get that.

“It’s 6.6. Are you cold in here?” she said when she returned, adjusting the thermostat.

I couldn’t believe it. No, really, I couldn’t believe it.

“Wait, what?”

“It’s 6.6.”

“Really?”

“Yeah.”

“You’re sure?”

“Yes.”

“Wow… Are you sure your machine is accurate?”

She laughed. “Yes, it’s very accurate. It’s calibrated every day.”

“I’ve never been below 7% before…”

“Well, welcome to God’s country!”

I just about fell out of my chair. My A1C in June was 8%. Today, 6.6%. That’s a drop of 1.4%! Holy crap!

Of course, I attribute most of this to Victoza. I don’t know why it took me so long to start using it! Be ye not so stupid! Having Victoza has smoothed out a lot of my postprandial spikes, and I think that was the biggest reason why my A1C dropped so much. I also think it has made me more sensitive to corrections, so I don’t stay high for as long. I don’t really have any proof of this, but it’s a theory.

I also know that working with Jenny at Integrated Diabetes played a huge part in it. Even with Victoza, I still struggled with getting my rates settled. There were a lot of adjustments in the beginning, and I’m still making a lot of adjustments. As I lose weight and as my activity increases, my insulin needs change too. Sometimes it’s hard to keep up!

However, because I’m working with Jenny, the endo and I didn’t talk that much about my blood sugars. Jenny helps with a lot of my little tweaks, and lately things have seemed okay. Sure, there are a few highs and lows, but nothing that screams trend.

We did talk a lot about pregnancy and diabetes. She explained how their system works, and that since I don’t already have an ob-gyn, it would be good to have one in their network of clinics. She gave me a couple names of providers who she think would be good for me, which was super helpful. I hate having to find a doctor!

We also talked about my previous labs showing low thyroid and low Vitamin D. She decided that it would just be best to get new lab work done because it’s been over a year. I’m also getting tested again for celiac. It’s been a couple of years and from what I’ve heard, it’s good to get tested regularly for it because it can appear suddenly.

victory_cat_by_oman96-d3kzkd2I felt very comfortable with this endo. There weren’t any warning bells as far as anything she said, and she was very nice and personable. She reminded me a lot of my New York endocrinologist, who I saw for six years. Despite having diabetes for 20 years, I’ve only had a handful of endocrinologists and the whole process of finding a new doctor is something I completely dread. I can definitely see myself walking through a pregnancy having her on my diabetes team. I’m really glad the second time was the charm!

Of course, pregnancy is not exactly right around the corner. We’re thinking it’s probably about a year away, maybe a little more. But having an A1C of 6.6% makes the whole becoming a mom thing seem a lot more real. For so long it’s been something that was in the far off future, because I didn’t know how or when I could ever get an A1C below 7%. Especially last fall when my A1C climbed from 7.2% to 7.7%, I felt like it was impossible. I was never going to figure it out. And now that I’m here, it’s like wow. This is really going to happen!