When DKA and I met for the first time

I saw a post last night that a friend shared about a young girl with Type 1 diabetes that had passed away. Her pump site apparently kinked and she went into DKA and then had brain damage, so her parents had to make the heartwrenching decision to remove her from life support.

This led to a conversation with a couple of friends as I recounted my story of my first time in DKA. It will be forever ingrained in my head, so I thought I’d share it here as well.

I was in college 3+ hours away from home. And about 4 1/2 years post dx. I was visiting my boyfriend’s house and started feeling really sick. Started vomiting. To the point of not being able to get up off of the bathroom floor. I called the campus nurse and she told me to drink some Diet Sprite. Couldn’t hold it down. Water? Couldn’t hold it down. Anything I put in, came right back up. This is not a good combination for anyone, but especially for a diabetic. At the time I had NO idea how serious this was, but I was about to find out.

After several hours of this cycle… my boyfriend needed to go to work but didn’t want to leave me alone. My mom was coincidentally going to be visiting me that weekend so he called the hotel to leave a message for her, not expecting her for another hour or so. (this part gives me chills.) When the hotel front desk answered and he asked to leave a message for her, the receptionist said, “Oh, she is standing right here checking in.” She had gotten on the road earlier than expected. He told her I was very sick and he thought she should come stay with me, because I was too sick to drive back to my dorm.

She immediately heads over there (a 20 min drive that maybe took her 10 min) and saw it was bad. I was sooo soo incredibly sick. She said I needed to go to the ER, but I couldn’t walk. So they had to pick me up and carry me to the car.

She takes me to the ER, and I so vividly remember these details, but at the time, it felt like I was in an out of body experience. I remember laying on the bed in the ER room and the dr talking to my mom telling her it was a good thing she brought me in when she did, because I almost died. I remember thinking, “Why would he say that in front of me?” But I couldn’t speak.

Then a nurse came in to tell my mom they were going to draw a blood gas, and warned her that it was very painful, and said she may need to leave the room. I remember there was a child in the next room having a blood gas drawn, and was screaming so loudly. When the nurse put the needle in my artery on my right arm to draw the blood gas, she apologized for having to do it. And I remember it was one of the most painful things I’d ever felt, and in my head I was screaming in pain. But nothing was coming out of my mouth.

After some time, they put me in an ICU room. I remember them putting a catheter in me. And it was not at all comfortable, but again, I was still too weak to speak.

Eventually, they got enough IV fluids in me so that I was not as dehydrated and could start to function again.

I don’t know what caused my vomiting. I don’t remember if I had a stomach bug, or if my blood sugars were high. But it was a serious lesson learned that vomiting with diabetes is no joke.

I unfortunately went into DKA two more times in the next 18 months, but each time I caught it a little earlier, even though I still ended up in the ICU.

I don’t share this story for pity. I share it because I am incredibly grateful that I am here to tell it. Not everyone is as lucky.

Sick Days

I started to come down with what I assumed was a cold Monday night – it hit fast, but it was the typical head cold symptoms – stuffy nose, cough, watery eyes. And I didn’t sleep much at all that night because I couldn’t breathe. Normally I can tell a couple of days early when I’m coming down with something, but not this time.

Last night, I gave in and took NyQuil just to relieve the symptoms long enough to let me sleep. Or maybe it’s so that it made me sleep through the symptoms. Who knows – all I know is I was able to finally sleep for a few hours. Today it’s moved to my chest and I feel like someone punched me. But I assure you they did not 😉

But as usual I cannot just be sick … without diabetes wanting to play a role and join in on the fun.

Last night I had to tell my husband to make sure his ringer on his phone was turned up loudly – in case I slept through any Dexcom alarms telling me my blood sugar was low. I had no idea what the NyQuil would do to my numbers, I haven’t taken it in years. They’ve been a little up and down, but nothing too crazy yet.

And I’ve also had to make sure I drink lots of water. Because it’s super easy to get dehydrated. And if I get dehydrated, then I can develop ketones. And ketones could put me in the hospital.

So not only do I deal with feeling super crummy with whatever is going on right now, I have to be even more diligent with managing my diabetes, because being sick can throw all kinds of curve balls at me.

I did make a doctor’s appointment for this afternoon, so I should be good as new in a couple of days. 🙂

#apeekintomylifewithT1

Nobody likes a know-it-all

Last 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.

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. 🙂

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.

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. 🙂

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.