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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Trying not to fall off my soapbox

Let me just throw this out there and move on …. We are “supposed” to change our pump sites every 2-3 days. I do not. I usually make it 5-7 days. Sometimes even longer. I have a lot of scar tissue in my belly, because I’ve been sticking needles in there for almost 24 years. It is also not uncommon for me to refill the reservoir in my pump so I can make it last a couple more days. And yes, I do know that by wearing my sites longer than I’m supposed to is creating even more scar tissue…

The reason I do it? Not because I’m lazy, or because I don’t want to poke another hole (which I obviously don’t, but that’s not the reason.) It’s mainly to conserve my supplies and make them last just a little bit longer. Sounds ridiculous, right? But I am only “allowed” a certain amount of supplies each month. A number that is determined by someone behind a desk (a numbers cruncher) employed by an insurance company. I only get x amounts of units of insulin per month. And x amount of test strips. And x amount of infusion sets/reservoirs. So I tend to try and make them last a little longer, so I have the extra for days when things don’t go as planned. If everything ran smoothly every day and I never got sick, or I never traveled, or I never had an infusion set pulled out by one of my 3 year olds, or a doorknob, then yes, those quantities might very well last me the amount of time they’d determined I need to make them last. But this is real life, and I do get sick. And I do travel occasionally and need to have extra supplies on hand. And I have 3 year old twins. And doorknobs.

There is a lot of upheaval right now in the DOC because of the UHC/Medtronic stuff.. which I will quickly add my two cents. I happen to be a UHC member (through my employer), and a long time Medtronic customer/user for almost 20 years. So this does not personally affect me, except for the fact that as a patient, I want to be able to choose how I manage my diabetes. I had a doctor once tell me that I’m the CEO of my diabetes, and she’s just there on the sidelines to help me. So if that’s the case, shouldn’t I be able to choose how I manage it?? I’M the one that has to live with this 24/7/365. I have tried another pump, and did not like it for many reasons. So I went back to Medtronic. But had that gone the other way and it was Medtronic that didn’t work well for me, I would absolutely not want an insurance company telling me that I had to use that one.

And having said all that, I am currently wearing a site that has been painful since I inserted it on Sunday. I have told my husband every day that “I can’t wait until the reservoir runs out so I can change my site.” He asked why I didn’t go ahead and pull it? So I explained what I just said above. And it hurts – worse than most sites I’ve had. I am still getting good numbers, so I’m guessing I’m just in a sore area, but it hurts to walk, it hurts to sleep on it, it hurts when I bolus. Or when my lanyard I have to wear for work hits it. But today is the day and I finally get to change it. I was so happy when I heard that “beep” and the “Low Reservoir” alarm came on. Fingers crossed that I hit the next one in a much better spot.🙂 Had I changed it that first or second day – that’s a “wasted” infusion set, reservoir, and insulin.

Pump site hurts

#steppingoffmysoapboxnow

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Type One Nation Summit 2016

Last weekend I was able to attend a Type One Nation Summit, hosted by my local JDRF chapter. I’ve attended the event in the past – and it’s always been a good time. This event did not disappoint. I do not get the opportunity to attend many events with other Type 1s. Mainly because there are just not many opportunities here locally. I can’t even explain the awesomeoness of the camaraderie that I feel when I attend these events. Being a room of people that get it. That get me.

My mom asked me if I learned anything new. I’ve lived with Type 1 diabetes for almost 24 years now, and I feel like there is always something new to learn – new technology, new tips/tricks, new information about food/exercise. People have told me “You take such good care of yourself – you really know what you’re doing.” And in all honesty, I have no idea what I’m doing. Every single day is different. I can do the same thing two days in a row, and have two different graphs of my bg’s to show you. But I take it day by day and do the best I can.🙂

I enjoyed meeting with some of the vendors, making new friends, and I enjoyed the speakers this year. Two of them happened to be friends that I met through the DOC. I’ve been lucky enough to have met Kerri IRL a couple of times already (ironically enough, the first time we met in person was at this event, when I traveled to a different city several years ago) And I sat in on two of her sessions – one talked about the emotions of living with diabetes, and the other was life after diagnosis. Both were very relevant, and both had very real topics brought up. I loved being a room where we felt safe and could ask real life questions. And there were tears, and that was ok. We all got it, and we all understood. And nobody judged anyone.

I also sat in on Melissa’s session about diabetes technology. This girl knows her tech. It was super exciting to hear her talk about some of the new things coming down the pipeline, and to give updates on where some of the big names are with their current technology.

When I leave these events it always makes me want to do more. And to attend more events. And to tell my story. And to hear other’s stories. It’s so encouraging and uplifting. Even amidst the tears. I need to figure out how to make that happen. And by putting it in my blog, you can hold me accountable to make sure it happens.

Like the dog behind us, we have no idea what we are doing.

Like the dog behind us, we have no idea what we are doing.

Loved spending the day with these two!!

Loved spending the day with these two!!

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