Nobody likes a know-it-all

halloween-candy1Last week I was talking with a co-worker about Halloween, and talking about favorite candies, desserts, etc. Another coworker came up and joined the conversation. I was still talking about candies I liked/disliked and then she said the dreaded, “Aren’t you diabetic?” Ugh. Here we go. Then she said, “Uh if you have diabetes, I’m pretty sure you aren’t supposed to be eating all that crap.”

To which I responded, “I wear an insulin pump and am in excellent control, so it’s ok to indulge occasionally.”

She said, “I’m pretty sure that wearing an insulin pump doesn’t give you cart blanch to eat whatever crap you want. I have known plenty of diabetics in my life, and I know what I’m talking about.”

Oh boy …

So I replied with, “Well, I’ve lived with it for 24 years, over half of my life, and I’m pretty sure that I also know what I’m talking about.”

Then she says, “Wait – do you have juvenile diabetes? Aren’t you a little old to have been diagnosed with juvenile diabetes?”

Seriously.

I realize some people are ignorant and just don’t know better … but it’s the ones that are ignorant and act like they know it all that drive me bonkers. #steppingoffmysoapboxnow

Happy Halloween! Excuse me while I go eat a Reese’s Peanut Butter Cup.

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My own worst enemy

I can admit that I am at times my own worst enemy. I beat myself up (figuratively) about different things – projects I work on, my appearance, etc. But I also do it when it comes to my diabetes.

In June, I started going to Camp Gladiator. It’s an ourdoor fitness camp and I absolutely love it. It has been SO good for me and I feel great. The community of other campers is amazing and there is so much support. Even my husband has started going and I love that it’s something we are both doing. Last year when I went to London, I was with a group of 7 people and I was in the back of the group anytime we went anywhere- I just couldn’t keep up. This summer when I went, it was with a group of 13 and I was in the front of the group everywhere. I had so much more energy. And I’m taking almost 1/2 the amount of daily insulin I was taking before, and have lowered my basal rates. I can see physical improvements and a lot of times I share on Facebook some of my side by side progress pictures – mostly to remind myself that I AM making changes. And also because I know it is encouraging to some other people.

When I went to my Endo appt 3 months ago, I had just started CG a couple of weeks prior to that appointment and we talked about how if I kept it up, we should see some significant changes at my next appt in October. He said we should see weight loss, an even better A1C, among other things.

So when I went to my Endo appt yesterday I was actually excited to go. And then when I stood on the scale I was incredibly disappointed to see the exact same number as last time. I know I’m gaining muscle, blah blah blah … it would still be nice to see that number go down at some point.

And then she put my blood in that A1C machine and we waited. She finally came into the room to give me the number and it was also exactly the same as my last appointment.

To say I was disappointed would be an understatement. I have worked SO hard these past 3 months. So so hard. I have pretty much done an overhaul on my eating habits. I take 1/2 the insulin, I exercise frequently. And yet nothing.

So I’ll continue to post my side by side progress photos – and if you’re tired of seeing them, I apologize. But I need to keep reminding myself that it’s worth it. That I’M worth it. And that I WILL start seeing changes in my numbers eventually. I didn’t put this weight on overnight, so it’s not going to come off overnight.

(btw he did explain the scientific reasons on why it’s so difficult to lose weight when you have diabetes or PCOS, and I happen to have both, so #doublewhammy.)

In the meantime, here’s some proof that I am making physical changes. 🙂

cg-progress-arms-sept-2016

cg-progress-sept-2016

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Evolution of my diabetes

I never realize just how dependent I’ve become on my diabetes technology until I have to go without it. I have lived with diabetes for almost 24 years (as of next month.) And in those 24 years, to say the technology has changed/improved would be an understatement. When I was first diagnosed, I was immediately put on 4 shots a day. NPH in the morning (but don’t forget to roll it in your hands to mix it up, first!) and then Regular insulin that I would take precisely 30 minutes before each meal (which was super fun to time that one while eating out.) I also had to check my blood sugar first thing when I woke up in the morning, before every meal, 2 hours after every meal, and before bedtime. And I also had to have a snack before bed, to make sure I didn’t go low during the middle of the night.

Times have changed. Somewhat.

Fast forward 24 years and I now wear an insulin pump, which acts as an external pancreas that I program, and it gives me continuous insulin, based on pre-set formulas. Which is somewhat of a hit and miss game and can change with the wind. Or the time of month. Or with exercise. But I digress. I do still have to give myself insulin before a meal, but I just push buttons on my pump screen. And I “should” take it 15-20 min before I eat, but I don’t have to be as strict about it. There have been many times I’m still receiving the insulin as I’m eating my meal. And I don’t have to excuse myself to go to the bathroom to take my shot like I did for many years. And I only have to change out my pump site every 3-5 days. That’s a big improvement over taking 4-5 shots per day.

I also wear a cgm (continuous glucose monitor, for the newbies reading this.) I can look at my phone screen, or my Apple Watch and see my blood sugars 24/7. I find it to be very accurate, and I probably rely on it too often. I have been known to bolus off of that number (#likeyoudo) even though we are not supposed to. But as opposed to how it was in the early years, now my day looks like this – Check my blood sugar first thing in the morning so I can calibrate my cgm. Check my blood sugar before meals (in a perfect world). Look at my cgm graph 2 hours after my meal to see if I need to correct a high. Check my blood sugar before bed, just to make sure that the number is accurate and that I’m in a safe range for sleep.

And here’s where I realized how much I rely on this data. Last night when I went to bed cgm-free…. I had this odd feeling in my stomach and I literally said the words “I hope I wake up” out loud. Meaning if my blood sugar drops too low overnight, I was hoping that I would wake myself up. Not everyone can feel a low in their sleep. Historically I always have woken up in that drenched sweat and known to check my blood sugar. Or my husband has looked over and seen my drenched and woken me up. But I’ve noticed over the last year or so, I don’t wake up until my cgm alarm goes off. And either wakes ME up or my husbnad, or one of my friends that follow my cgm data. But I’ve gotten used to that alarm and last night it concerned me that I was going to sleep without the security of knowing I had that alarm to wake me up.

Most people can lay their head down at night and dream sweet dreams, or even stay awake worrying about their kids’ or about work problems. But most people don’t go to sleep at night wondering if they will wake up in the morning. That’s what those of us living with diabetes have to worry about – whether or not we are the one with the busted pancreas, or if it’s our kid(s), or our spouse, or any loved one. We have to be a mathematician, and a statistician, a doctor, a nutritionist, a pancreas, a parent, an employee, a child, the list could go on and on …..

Some days I think I need a device break. To go back on shots and no cgm for a little while, just to give myself a break. And I may still do that eventually. But not today.

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Dexcom battery

I wear the Dexcom G5 transmitter and I had a “first” happen last night. Usually, when the battery is starting to get low, I get alerts starting 2-3 weeks before the battery actually dies. It will say something along the lines of “battery is low, you need to replace in 2 weeks.” Then the alert will pop up once a week until you get the one saying that the battery is critically low and you need to replace now.

Well last night before I went to bed, I got the “critically low” message. But never got any of the preceding “warning” messages over the last couple of weeks. Then I woke up this morning and the battery was dead.

So I called the vendor from which I order my supplies and they told me that since it’s not been 90 days since I received the transmitter, that I would have to call Dexcom directly, because it’s likely a warranty issue, and they would not be able to replace it because of insurance not approving it until the 90 days had passed.

I called Dexcom and after being transferred to 3 different people, and explaining the situation to 3 different people (4, if you include the initial phone call to the vendor) the rep told me they would replace the transmitter. They will also be sending me a return envelope to return the transmitter that just died. And he also said that they would send me a replacement sensor since I had to pull out the one I was wearing when the battery died. That was definitely a nice touch. ‘Cause those things aren’t cheap. 🙂

All in all I was pleased with the customer service, and thankful that they are going to be able to replace it. In the meantime, until the new one comes in, I will have to go old school and prick my finger several times a day. I will miss having it on at night, because I have come to rely on the alerts for low blood sugars, but Up until a year or so ago, I was still going old school, so I’ll be just fine. 🙂

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Language and Diabetes – #DBlogWeek Day 3

Our topic today is Language and Diabetes. There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

I have a lot of words and phrases related to diabetes that I have found trigger a response in me… Below are just a few, and it is in no way an all inclusive list. 🙂

Brittle – This one super duper irks me. It’s incredibly subjective and is way overused. It is used too often in cases when someone is trying to potentially gain sympathy because it sounds “scary”.

Should you be eating that? Ugh. Yes, I can eat that. Whatever it is. As long as it’s not poison, I can eat it.

I could never give myself shots. Yes you could. Nobody chose to have to inject themselves with insulin, but if your life depended on it (which mine absolutely does) then yes, you could give yourself shots.

You must have the bad kind of diabetes. No, I do not have the “bad” kind of diabetes. Is there a “good” kind?

Here, I made you a sugar free dessert. Please don’t make me a sugar free dessert. Unless you secretly dislike me and enjoy seeing me in pain. #itmakessenseifyouhavediabetes

Diabetic – I have found myself in recent years referring to myself as “I have diabetes” instead of saying “I am diabetic.” I don’t know why, but I feel like saying “Diabetic” is labeling myself. Whereas saying “I have diabetes” makes it sound more like something that is a part of me, that I live with, but it does not define me.

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Message Monday – #DBlogWeek Day 1

Diabetes Blog Week 2016

Welcome to Diabetes Blog Week! Diabetes Blog Week is just like it sounds… diabetes bloggers all blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up,
CLICK HERE.

As always, thank you to Karen Graffeo, creator and curator of Diabetes Blog Week. She’s awesome and I’m lucky to call her my friend!

We begin this year with: Message Monday.

Let’s kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

When I was diagnosed with T1 in 1992, a month before turning 18, I knew nobody that had diabetes. My mom introduced me to a couple of people she knew that had it, because she wanted me to be able to relate to someone – I imagine she felt very helpless at the time because there was really nothing she could do for me or to help me, besides be there. And sometimes that’s all I needed.

Fast forward to about 5 years ago, and a friend told me about this blog that she had found recently called SixUntilMe.com (Shout out, Kerri!) I read a few of Kerri’s posts and was mesmerized because it was the first time I ever felt like “Whoa other people go through that, too? Or other people have x,y,z issue, too?” I know it sounds silly, but I lived with diabetes for many many (did I mention many?) years feeling like I lived in a bubble, or a vacuum. And all of a sudden, I didn’t feel so alone. I started clicking on links that Kerri had in her blog that led me to other blogs. And I’ll be honest, I did not get much work done those next few days (weeks) because it was almost addicting to read so many stories that I could have easily written myself.

The only thing I (thought I) knew about diabetes when I was diagnosed was that you couldn’t have sugar and you’d probably have to have something cut off of your body at some point. (Hey kids.. this isn’t true, by the way.)

One day I was talking to my friend that had referred me to Kerri’s blog (shout out, Suzanne!) and I told her I felt like I could totally write about living with diabetes – and she agreed, and encouraged me to do it. So I did. I didn’t know if anyone would even read it, but they do. And I have people all the time tell me “Thank you for writing about [fill in the blank] because I went through the same thing.” Or they’ll say that reading x,y,z post was helpful because their niece, or nephew, or child, was just recently diagnosed and my blog helped them realize that diabetes isn’t always as scary as they thought it was.

I went to London last summer, and recently got a message from someone I met there that said her brother-in-law was recently diagnosed, and she connected me with the mother. My friend said she connected me because she’d seen my posts, and thought I could be a helpful resource to this newly diagnosed family.

I’ve had a friend come up to me that I hadn’t seen in a long time thank me for writing about living with diabetes, because when her nephew was diagnosed recently, it helped her realize he was going to be ok.

I’ve had other women who are either pregnant, or hope to become pregnant, and parents of young girls that have T1, tell me they are encouraged to hear my stories of having two healthy pregnancies (one of which was with twins).

It always makes me feel good to help spread the word that diabetes doesn’t have to be as scary as a lot of people think. And I’m almost always amazed at how uneducated most people still are about the disease. I only wish I had the resources like blogs, and communities, etc., available to me when I was diagnosed. After my diagnosis, my mom (again, trying to help me) took me to a support group at the hospital. Yeah, that wasn’t a great idea. It was all older people, and I was the only teenager in the room.

So I went around in circles, but bottom line is I blog, and I participate in DOC activities, because I need that camaraderie. It’s almost therapeutic to blog. I need that circle of friends that get it, and that have my back, and know that I have theirs.

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Lows… and Pizza :)

Last night I had a wicked low (for some reason that phrase reminds me of you, Kerri!) .. I knew something was wrong when I was having a hard time focusing, and started to feel sick to my stomach. I was home alone with my 3 boys, and I was wearing my CGM, but sometimes things don’t always go as planned. And this one hit fast.

My CGM is almost always spot on, and I rely probably too much on it. It did alert me that I was dropping a little, but we had ordered pizza and I had just bolused to eat, so I knew that would come back up soon. (Side note I had done a 60/40 dual wave bolus over 3 hours – which usually works really well for pizza but YDMV. So I did not get all of my insulin up front.) But even when it was around 70-ish I still didn’t feel “right”. So I ate 3 glucose tablets while I was getting the plates ready for my boys.

Several minutes later, I still did not feel right, and was starting to feel sick to my stomach, so even though my Dexcom said I was 63, I checked my finger and it said 50. And that was after I’d eaten 3 glucose tablets. Yikes. So I then drank a juice box fully expecting to rebound later, especially once the pizza that I had yet to consume kicked in.

I sat down in my recliner and one of my 3 year old twins came over to me and said, “Mommy, you ok?” (He could tell something was off.) I said, “Yes, mommy is fine. My blood sugar is low, so I don’t feel very good.” (Now, he’s 3. So he really has no idea what that means, but I was trying to be honest.) He then hugged me and said, “It’s ok, mommy. It’s ok.” I love my sweet boys. A little while later, he walked over to me and said, “Mommy are you still low?” Again.. he had no idea what that meant. But he knew that it didn’t make me feel good.

Now in the middle of all of this, I notice that my Dexcom is hurting – and it never hurts. But I had just re-taped it earlier that day because it was starting to get a little loose, so I imagine that the sensor had pulled out of my skin some, and that would explain the inaccuracy of not catching that low. So I pulled it out, and never got a good snapshot of whether or not I rebounded. Around 3am I checked and I was in the 160s so I’ll call that a success. 🙂

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