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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What the high?

I feel like I’ve been on a roller coaster today… I woke up at 2am with a low blood sugar (66 – thank you, Dexcom alarm!) and stayed up till it came up to the 90s. Then was 155 when I got (back) up for the day. Ate my normal protein bar for breakfast – same thing I have almost every week day (yea, I know, I know. But by the time I get my 3 boys out the door and 2 of them dropped off at daycare, and get ready to sit in traffic to head to work, I need to eat on the go.)

And an hour or so after I ate, I felt super tired and looked at my CGM. I was almost 400! I thought surely that was wrong, so I double checked with a finger stick, and yep – I was 372. There was absolutely no reason for that. I knew the exact carbs, and I eat that same thing every day and it never shoots me up like that.

First thing I checked was that my pump site was attached all the way (it happens) – it was fine. Did not feel any insulin around the site – did not smell bandaids (#itmakesesenseifyouhavediabetes) I even checked my pump to make sure I did bolus for my breakfast – and yep, I did.

I corrected it with my pump and crossed my fingers it would work. And finally, it did start coming down.

But I hate when things like that happen for no reason. It’s like diabetes just wants to jack with me for the heck of it. But at the end of the day (well, it’s not the end of this day just yet) I won, and got back in range.:) #takeTHATdiabetes

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Thankful for do-overs

Some days I feel like I have this diabetes thing figured out … and some days I definitely do not. Yesterday was one of the days that I clearly did not have it all figured out. And felt like diabetes had control of me, instead of the other way around.

I was fine until lunchtime when we ordered Pei Wei in at work. I do not eat a lot of Asian food, because it always makes me go high – no matter how much I bolus for. (YDMV) But it was a team lunch, and I didn’t finish the rice, trying to cut back on some of the carbs. But an hour later I was over 400. And I wasn’t coming down. Luckily, I had brought my “go pack” with me that had an extra site change in it – which, I am not good at carrying with me to work at all, but I am so thankful I did have it.

I ended up doing a correction with a syringe, and also changed my site in a bathroom stall at work (I’m sure the person in the next stall thought I was playing a video game, with all the beeping that was going on.) After a couple more hours, I finally had a down arrow on my CGM. But boy, was I tired. And thirsty.

Fast forward to the evening. I was in the high 100s but manageable. Had dinner with my kids (husband was en route home from a business trip) and around 10pm I corrected for my bg to bring me back into range. The settings are standard and are pre-programmed into my pump.

At 2am my husband wakes me up and I open my eyes to him standing over me, opening up a juice box. He said, “Your Dexcom is saying you’re 46- you need to drink this juice.” What’s odd is I almost always wake up when I’m low. But this time I didn’t. But I felt “fine” so I asked him to bring me my tester because I was sure I wasn’t THAT low (which should have been on my nightstand, but it was in the kitchen.) He did, and I was 41. And once my brain knew I was truly that low, that’s when I started feeling it – sweating, shaking, panic mode almost set in. I sat up in bed and downed the juice box. Then I looked at my phone and I had 4 missed texts and a missed call and voicemail from 2 friends that are able to see my Dexcom data and get alerts when I am going too low. One of these friends is on the East coast so it was super early for her (sorry bout that, Karen!) I immediately texted both of them back and let them know that Dan had woken me up and that I was ok. Then I drank a 2nd juice box because I was not coming up fast enough. I ended up coming up to 93, but I was a little scared to go back to sleep until I knew for sure I was not going to go low again.. So needless to say, coffee is my friend this morning.

Now, I do have an alarm on my phone as well – in case you’re wondering why everyone else was getting the alarms but me. I use the Dexcom G5 and a downside to only using my phone and not the transmitter, means that if my phone is on silent (which it was last night), then I do not hear the alarms. Lesson learned.

But that could have had a very different outcome. Had my husband not been home, I do not know how much lower I would have gone. Or when/if I would have woken up. That is a scary thought, and it is every diabetic’s worst nightmare. But this was a happy ending, and this morning I had a beautiful 117 on my screen and it’s a brand new day. And for that, I am thankful for the do-over.

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