Rambling Thoughts from Recent Endo Appt

I have a few thoughts on my Endo appointment yesterday that I wanted to “talk through”.

I knew going into this appointment that it was not one that would show an improvement since my last appointment in September (I was supposed to go in December but had to go out of town unexpectedly with work, so I was rescheduled to January.) I traveled quite a bit over those last few months- a family trip to Disney World, and many work trips. I have no excuses, and I own the poor choices I made. But all in all, I was not expecting good results. Although, the numbers weren’t “as” bad as I had anticipated. My A1C was up .2 points, and my weight was up 4 lbs, but again, wasn’t AS bad as I’d expected. #perspective. But I do know that I have a lot of room for improvement, and I’m the only one that can do that. I met a new T1 friend recently and she put it in a perfect analogy – it’s like going in to take a test that you know you aren’t going to do well on, but you always leave the test feeling pumped telling yourself you’ll do better next time. That’s exactly how it feels!

But back to the appointment itself ….

I brought my Dexcom reports with me and the word that he used was “erratic”. He’s not wrong. My reports did show a few patterns, though, and we talked about that. One is I am consistently high after dinner. I thought maybe I needed to adjust my bolus formula for dinner. He said not yet -suggested the following: taking my insulin sooner than I currently do (I usually take it as I sit down to eat); or he said he has some patients who eat little to no carbs at dinner and see great results; or he also has patients who don’t eat until their BG is 100 or less (this one is not practical since I’m feeding my family and I can’t very well feed them and sit to wait for a magical BG number before I eat.); or he said I could take a brisk walk after dinner (again, not always practical.) So I’ll start with trying to take my insulin sooner, and eating less carbs. But I am consistently correcting a high bg before dinner, and then my overnight basal is perfect right now, so I wake up with a perfect number almost every morning.

He said there is a newer, more fast absorbing, insulin coming out next month that I may want to try. I asked if it was approved for pump users and he said not yet, so I’ll have to think about that one. I will try these other options first before changing from Humalog, which works well for me.

The other thing we talked about is why is it is so dang difficult for diabetics to lose weight. I can lose inches when I’m consistently working out but I rarely ever see the number on the scale go down. He said his only answer was “insulin”. *sigh* It’s possible, but very difficult.

I also asked him his thoughts on the Libre. He said he’s written 60 scripts for it in the last week. And that it works great so far – but he would not recommend it for someone already on the Dexcom because you lose so many of the bells and whistles (literally) with the Libre.

He also did another ultrasound on my thyroid – I have a large nodule (approx. 2 cm in diameter) that I’ve had for years – had a biopsy on it in 2011 and it still looks about the same. I do appreciate that he keeps a close eye on it, though.

On the way out of the office, I mentioned to the nurse that I’d lost 300 units of Humalog (I will post separately about that mishap) and she said “Oh I can give you a sample bottle of Apidra, it works the same as Humalog.” *sigh*

Thoughts on that one, anyone? I’m thinking it does not work the same but have no experience with Apidra.

Do any of you have any thoughts/feedback/comments on any of the above mentioned rambling thoughts? Thanks in advance!

Kudos to Medtronic

I started a new job earlier this year, and as a result my insurance changed. I now have coverage with a large national carrier, but one that apparently a lot providers choose to not deal with. Don’t get me wrong, I am thankful to have coverage, but this change has caused a few headaches. One of my four year olds can no longer see one of his specialists and I have yet to find one that is as good. And now it’s affecting my medical supplies.

A little over two weeks ago I contacted the 3rd party supplier that I’ve ordered my pump supplies through for several years now. I was on my last box of infusion sets and wanted to get the ball rolling on ordering new ones. Stayed in contact with said supplier every few days and at first they were waiting on the dr to fill a new Rx. Then they were waiting for authorization from the insurance company. Fast forward two weeks when I ask for another update and I let the contact know the urgency as I was now down to 2 infusion sets.

She emails me this morning to let me know that she’s sorry, but she just found out they are not contracted with my insurance company and would no longer be able to supply my pump supplies going forward. That was very unfortunate because I was now two weeks into their process and would have to somehow start over with who knows who, and meanwhile I still just have the 2 infusion sets on hand.

So I called Medtronic directly. Had been avoiding that because historically it has cost me more out of pocket to go that route, but I really have no choice by this point, unless I want to go back to MDI (4-5 shots per day) for a while, and still may need to do that because I’ll have to meet my deductible and it’s already November …..

The customer service at Medtronic is always on point. I don’t think in the almost 20 years I’ve worn their pump that I’ve ever had a bad experience with them, truly. They were able to take my new insurance information and said it could take up to 2 weeks to get everything confirmed with my insurance company. [insert panic here] I explained to the rep I was speaking with that I was down to 2 infusion sets and couldn’t really wait 2 more weeks while everything got confirmed/approved. She immediately apologized that I was in that situation and offered to expedite the process. Whew. So thankful for that option.

So, Kudos, Medtronic! Here’s to hoping that I am able to get my supplies this week, and that I don’t have to pay a bazillion dollars out of pocket for my insulin pump (aka life support) supplies.

25 years.

25 years ago today I was a 17 year old senior in high school, looking forward to a road trip to East Texas with my mom and some family members. My biggest concern at the time was normal high school drama and preparing for college.

25 years ago today I could eat and drink whatever I wanted without having to worry about anything.

25 years ago today I had no idea why I was so tired all the time. Or why I was losing weight. Or why my vision was blurry. Or why I was so darn thirsty all the time.

25 years ago today the only time I’d heard the word diabetes was when I had overheard the nurse in my orthodontist’s office once tell another patient that she couldn’t order anything from her school fundraiser, because she had diabetes and that meant she couldn’t eat sugar.

25 years ago today I had no idea that tomorrow my world would be flipped upside down when I heard the word diabetes again – but this time it was a doctor telling me and my mom that I had it. And that I would need to take 4 shots of insulin a day. Every day. For the rest of my life. And that I would need to spend a week in the hospital so I could learn how to give myself shots, and learn how to eat a diabetic diet.

25 years ago today was the last day I would not know that my pancreas had stopped working. Up to that point I don’t know that I even knew what a pancreas was. It was the last day that I would be able to eat without having to count carbs. Without having to calculate how much insulin I would need to take to cover said carbs. The last day I would be able to drink a soda or Gatorade without having to calculate carbs or decide if my blood sugar was high/low enough to “need” the sugary drink.

But when I would wake up 25 years ago tomorrow, I would take that road trip to East Texas. And I would feel very sick the entire day. And I would sleep most of the way in the back of the car. Except for when we had to stop at almost every gas station so I could go to the bathroom, and get more to drink.

25 years ago tomorrow, I would be given a book that told me how many carbs, veggies, fruits, dairy, etc., that I was allowed/supposed to eat every day.

25 years ago tomorrow, I would give an orange several injections, as practice so I would be able to learn how to give them to myself. Four times a day.

25 years ago tomorrow, I would be told by a doctor that I would never be able to have children.

And now fast forward 25 years …..

I am a healthy 42 year old wife and mother. I wear an insulin pump, and a CGM. I am an advocate for those living with diabetes. I blog about life with diabetes. I spread awareness about diabetes. I mentor newly diagnosed families. I have friends that I would not have known had it not been for that diagnosis 25 years ago.

I am thankful for every single day of these last 25 years and am looking forward to the next 25. Time flies when you’re having fun. 🙂

Epic fail

So I had what I would consider an epic diabetes fail on Friday.  And I consider it an epic fail because it was 100% avoidable.   #mybad

My husband (D), and my son (A) went to a local zip line and ropes course on Friday to celebrate the last Friday the three of us could hang out before A goes back to school.  We were so excited about our adventure!

We get to the first obstacle, and apparently I had forgotten that I have diabetes.  Because that’s when I realized, after we’d walked all the way into the wooded area, that I had no CGM on (couldn’t have my phone, so I couldn’t have seen the numbers anyway) and I didn’t bring any glucose tablets with me.  #failnumberone So my hubby ran all the way back to the car to get my tablets – just in case.    At this point I decided I would suspend my pump periodically to avoid lows. We would be climbing and doing all kinds of physical activities for 3-4 hours so my thought process was I’d rather run a little on the high end instead of going low.

So we proceed on to the first obstacle.  I soon realize that the harness I’m wearing is pushing on my infusion site that was in my lower abdomen (poor planning on that placement, too. #failnumbertwo). But each time we were ready to zip line, which was the only time it actually pushed on the site, I readjusted the harness, even though I couldn’t see my site without pulling my shirt out.  I felt it periodically and it felt ok even though it was getting a little sore.  So I continued on.

About 3 hours into our fun, I started to feel really bad.  Light headed.  So thirsty.  Tired.  I kept chugging water at every pit stop we came upon.  (see where I’m going with this, don’t you?) Yet I still felt sluggish and just not right. I wasn’t sure if I was low (not likely, but could be) but chalked it up to being overheated. So I asked the instructor if I could throw in the towel and just walk alongside her as D and A finished up the course.  She said this was the one station that you can’t skip because even the instructors have to zip to the next obstacle – and the only way through it is to climb up the tree and finish this set of ropes courses, then zip to the next one… OR the other option was to walk around the park, around the lake, and meet them at the next station.  Something in my gut was telling me not to climb back up into the trees, even though the thought of walking that far was not appealing, either.

So I listened to my gut and gave her my harness and followed her directions to turn left here and there and go around the lake, take another left, etc.  That little jaunt ended up being close to 2 miles. Yikes.  Not pleasant because most of it was not shaded and it was H-O-T that day but I still believe it was a better option than climbing in the trees.  At this point I also had left my meter in the car because I didn’t have anywhere to carry it on me (#failnumberthree) so I felt lost as I was walking, having NO idea what my blood sugar was. Was I feeling this way because I was too low?  Had no idea at this point.  Opted not to pull out the glucose tablets in my pocket just yet.

I start walking and finally looked at my infusion site – and saw that it was no longer attached to me.  Oops.  I had no idea how long I had been unattached to my insulin supply now.  Was it an hour?  3 hours? I did not know.  (#failnumberfour)  Then I started to feel anxious about all these unknowns and feeling even worse.

Get almost all the way past the lake and feel a sudden urge to go potty – like one of those “I’m not gonna make it” urges.  And I look up ahead and lo and behold I see a bathroom. It must have been one of those moments like you see on TV when you’re in a desert and all of a sudden you see a pond of water.  I literally started running.   Made it to the bathroom just in time and then got back on my trail.   Found D and A and the instructor and stood below taking pictures and videos of them finishing the course.  They were doing great!

Part of me hated that I had to quit before I finished – I didn’t want to set a bad example for A. But I also knew I had to listen to my body.  And I’m so thankful I did.

They finish up, we go turn in the rest of our gear, drink some cold water, then make it to the car to finally check my blood sugar.   My meter read “HI”.  Oops.  That means I was over 500 but no idea how high or if I was still going higher.  I felt really bad by this point and told D we needed to hurry up and get home.  Got home, gave myself an injection old-school with a syringe and then felt sick to my stomach.  This is not going well at all at this point.  D had to leave to pick up our 2 kids in daycare so A kept checking on me (bless his heart!). All I could do was sit on the cold tile floor in front of the toilet.  I also finally checked my ketones and it was moderate.  *sigh*   While D was gone, I did end up throwing up – a lot.   Combined with the ketones I was sure I was headed into DKA.  And was so angry at myself – this was all.my.fault and could have so easily been avoided if I’d just been more responsible.  I know better!

By the time D got home with the boys, I was still sitting on the bathroom floor and hated that they saw me like that.   But they all gave me my space, I cleaned myself up, put my pump back on and then drank a crap ton of water.

I don’t know how- but my ketones started coming down, as did my blood sugar.  Within a couple of hours I was hungry and was able to eat dinner. And other than feeling like I’d been hit by a truck, I was perfectly “fine” again.  Other than my incredibly bruised ego.

So many lessons learned that day.   So many emotions that day.   I don’t want my family to see me as weak.   But I’ve talked with A and explained that mommy made some bad choices where my diabetes was concerned, and that’s why I got so sick. And let him know how proud I was of him for finishing the ENTIRE course.    And reassured him that I can do anything, even though I have diabetes, I just have to plan a little more/better.

What’s done is done, and all I can do at this point is look at it as a learning opportunity and as a lesson learned (ok many lessons.)   Knowing how badly this could have been, I’m incredibly thankful that I got past it without ending up in DKA, and that I was able to turn it around as quickly as I did.

But outside of diabetes being a jerk, we did have a great time challenging ourselves, and making memories with A! 🙂

DKA… almost.

I was out of town for a couple of days this week for work, and I’m pretty sure that I was *this close* to ending up in DKA again.

I think it was one of those “perfect storm” type of events. I’d gone out to a concert Tuesday night and was out late, hadn’t had any water to drink all day, so I know I was dehydrated. The Saturday and Sunday before that, I had been running fever out of nowhere and was asleep most of the weekend. So clearly my body was still recovering from whatever that was. Then mother nature decided to show up Monday night, which always causes some high bgs. Then I had a flight out first thing Tuesday morning, and flying always makes my bg’s high so I use a temp basal.

When I left my house early Tuesday morning, I was ok. My bg was 140. I set my usual temp basal to 125% – nothing out of the norm.

By the time I landed 46 minutes later, I was almost 300. Wasn’t overly concerned. I felt incredibly tired, but I chalked that up to only getting 3 hours sleep and having to make a 7 am flight. First stop at the airport was Starbucks for a coffee (which I never even got to finish) and breakfast sandwich.

Felt a little out of sorts, but again, assumed I was just tired. BG wasn’t coming down, even with a rather large corrected tacked onto my bolus to cover the breakfast sandwich (which was a usual sandwich for me, so I knew the carb count.)

On the way to the office, I decided to stop at the store and buy some ketone strips because I had not packed mine from home. Not sure why I’d decided to stop, other than I’m guessing it was a gut instinct. Which turned out to be a correct one.

Over the next couple of hours, my bg continued to rise. To the 400s. Checked my ketones and they were dark purple. Well crap.

I had a phone interview to conduct, and I feel kinda bad for that girl because I was not able to concentrate at all. By this point, I felt sick to my stomach (NOT a good sign, especially with such high ketones.)

I’ve been in DKA 3 times before and this felt different, but similar. I felt like I was in a fog. By now my bg was 433 and not even attempting to come down. I corrected with a syringe. And waited for what felt like an eternity. Tried to call my Endo to see if he could either talk me down, or make the call for me to go on into the ER.

Started filling up water bottles and at one point I had 3 in front of me. Was drinking as much as I could. Ketones weren’t budging. Finally my bg started to come down a little. At this point I was glad to see something in the high 300s instead of the 400s.

When I finally connected with my Endo, he said to give myself 10u an hour, via syringe, and call him back every hour until I started seeing significant improvements.

It took several hours, but I finally did start to come down and my ketones came down to Moderate, and I felt less sick to my stomach. For the first time that day I felt like I was going to be ok.

I went back to my hotel and fell asleep by 7:30. Woke up the next morning feeling SO much better.

So was I going into DKA? I don’t know for certain. But my gut tells me I was. And the scary part was I seriously considered leaving the office and trying to check in early to the hotel so I could lay down – I needed to sleep through that fog. But it crossed my mind that being alone in a hotel room may not be the best option at that point …..

But everything turned out ok, and I flew home that next night and perfectly fine now. That’s what matters. I am just glad that I was able to get ahead of it.

Pies

Recently I was out of town on a business trip and couldn’t decide what I wanted for dinner. So I got in the car and thought I’d just drive around till I found something that sounded good.

I knew I didn’t want fast food, so when I passed by a popular cafeteria that rhymes with Tubies (lol) I decided that sounded great!

I even picked up a slice of sugar free chocolate pie to go with my dinner.  I used to eat at this chain all the time growing up and they always had really good sugar free/low sugar pies (disclaimer: under normal circumstances I do not typically eat sugar free foods … for reasons we all understand.)

I took a few bites of my dessert (for which I’d already bolused) and was more than underwhelmed.  It was downright nasty.  So I opted to not eat it and take my chances that I’d over swag’d my carbs to begin with.

Then the same guy who had been at the register walks by… with a tray full of desserts that he was giving away.   He asked me if I wanted one and I thought for a second and said, “Sure I’d love the coconut cream one. This sugar free one wasn’t so good.”

The guy hesitated then said, “Yea I almost said something when you’d bought it. I was going to ask you if you’d ever had it before.  It tastes like chalk.” HAHA!! But then he said, “But that one (pointing to the uneaten chocolate pie) is made for people that have diabetes.”  #ohboy

I looked up at him as I was grabbing my slice of coconut pie and said, “Well, I have diabetes and I’m going to eat this pie instead.  Besides, this one is better for me anyway.”  I took a bite and he had the most bewildered look on his face ….. HAHA

#itmakessenseifyouhavediabetes

TypeOneNation Summit 2017

This past weekend I attended the local JDRF TypeOneNation Summit. I’ve attended this event several times over the years, and the first one I went to I even drove 5ish hours to a different city which was the closest location at the time.

I always get a lot of out of these events. Sometimes I crave them. Some people ask me why I still go because after almost 25 years of living with diabetes, you’d think I know everything I need to know by now, right? That’s a big fat negative. There’s always little nuggets of information I pick up. But even more than that, one of the main reasons I go is because I get to be surrounded with my peeps for a day. People that get it. People that hear alarms beep and instantly know what’s going on. And if it’s your device that’s beeping, you can beep away without feeling like you need to hurry up and silence it before someone figures out something may be “wrong” with you and starts asking questions.

To be able to eat in a big group for lunch where everyone is looking at CGM data, and pulling out meters to check blood sugars. Where you don’t feel like you have to hide it in your lap. (Although, I did catch myself sitting mine in my lap, out of habit.)

To get to hear my friend, Kerri, as she was the keynote speaker, share her experiences of living with diabetes and reminding us that there is no level of perfection that we need to be striving for. To hear her say that having her children was “a life that was a maybe that we turned into a certainty.” (love that!) And to hear Kerri also remind us that people have no idea what goes on behind the scenes each and every day, for us to remain healthy. And gave the example of ducks swimming – you look out at a pond and think “Oh how cute is that duck” but you don’t see how fast their little legs are paddling.

To be in a room where you feel thankful. For so many things. Do some days suck having to manage my diabetes? Abso-freaking-lutely. But at the end of the day, it could always be worse. And I can’t undo the fact I have diabetes, so I try to just live day to day the best I can and not let it interfere any more than it already does. One of the guys in a session I was in was wearing a shirt that said, “I can do anything I want. Except produce insulin.” Haha Love that.

To get to make new friends, and to see friends that I would not have known if it were not for my diabetes. (Shout out to my friend, Suzanne, who I failed to get a picture with!)

And an even cooler part of this year’s event that was different for me, is I was asked to moderate a pump user’s panel. I’ll be honest, I went into it pretty nervous. I have been an attendee for so many years, so I was a little nervous how it would go being in the front of the room. But I had THE best group of panelists – four of them wore different pumps, and one was on MDI. We had lots of good questions coming from the audience, and the time flew by. Was honored that JDRF asked me to do that!

So those are just a few of the reasons I keep going to these events. And will continue to do so. We can/should all try and learn something new every day-diabetes related or not. #challengeaccepted