I think we’re alone now…

You know when Abbie was first diagnosed, I think I stated my husband and I knew absolutely nothing further than what the hospital told us, what the internet could briefly inform us, and what little I remember from health class about Type 1 Diabetes.  Don’t get me wrong the internet is full of fantastic information if you know where to find it but it can also be a very, very, very scary place for a newly diagnosed Type 1 Diabetic and/or their caregiver.  If you just type in diabetes and complications you will get disturbing images of missing feet, abscesses, among other nasty little things.  If you rephrase and type in Type 1 Diabetes complications, the images stay the same, but added in will be words like kidney failure, retinopathy, neuropathy,  liver damage, and heart problems.  You see things about how low blood sugars can kill you and how high blood sugars cause complications over time.  Well what the hell?

So basically between what I learned at the hospital and what I read on the internet the first few days was that my daughter had an incurable disease that would alter everything about her life.  On the plus side there was a medication I could give her to manage it and make her life mostly normal.  However, on the flip side, if I gave her too much of this medication I could kill her or if I didn’t give her enough of the medication I could cause long term side effects and kill her.  Wait, what?

One positive came out of Abbie having such a long honeymoon phase.  It gave me time to research, learn, and research some more.  I learned a lot about insulin in that time, a lot about carb counting, a lot about the reality and necessity that comes from being afraid of insulin.  I will say when it came time for her to be on a long lasting and fast acting insulin, I still panicked and was still very conservative at first.  I followed the doctor’s orders to the letter until, well until I didn’t.  As you have read until this point, I reached a snapping point where I knew that I could not wait on someone that only saw my kid every 3 months to make a decision about her care when I knew I could look at the data and make that decision little by little right now. 

When she went on a pump in October and her Dex in November I found the Facebook communities.  There are so many of them.  If you are newly diagnosed and you haven’t found them, please go looking.  There is T1D Mod Squad, You know you’re a Type 1 when, specialized Omnipod and Dexcom groups, Tandem groups…all of which have a plethora of information.  These groups are so helpful and full of people that genuinely care and know exactly what you are going through.  They welcomed me with open arms and help any way they can. 

So then I felt a little less alone, and my husband felt a little less alone because he joined those groups soon after.  I think it was around January or February of this year that I keep seeing people posting about a podcast in the groups that was fantastic and a blog that was extremely helpful.  I meant to go look at it then but life happened and I just didn’t have the chance.  It was around March when I saw the name come up again in a group and I found www.Ardensday.com which in turn led me to the Juicebox Podcasts.  I think as of today I am on episode 125 but Scott had currently uploaded episode 247.  I listen religiously when I am putting away groceries, cleaning the house, or driving to and from work.  He is a Dad just like you or me, his daughter was diagnosed when she was 2 years old.   He started out writing the blog and then went on to do the podcasts.  He is so informative, so caring, and just has so much to give. 

Scott Benner taught me about being #boldwithinsulin and how to #bumpandnudge the numbers instead of overcorrecting a low to get a skyrocketing high then overcorrecting that high to get another low.   Basically how to stop the rollercoaster.   He reinforced things that I had already been doing for months and allowed me to look at my husband and say, “see I’m not crazy (well maybe I am but in a good way), someone else is just as aggressive too!”.  We are taught to be afraid of insulin which keeps us in this cycle that higher blood sugars are okay but the higher blood sugars cause long term complications that will kill my kid too and I am not okay with that, I was never okay with that.  I stopped being afraid of insulin and learned to have a healthy respect for it but knew that it was there to help me if I researched the data and learned how to use it properly.

Another fantastic website and app is Beyond Type 1.   The website gives up to date news information and the app is a lot like Facebook but for anyone with T1D or their caregiver.  You can post about your life, your problems, your blog, your happy moments, your sad moments, or anything in between.  It’s a place to just connect and feel like you belong. 

Two books that have been like my T1D bibles are “Think Like a Pancreas” by Gary Scheiner and “Sugar Surfing” by Stephen Ponder.  These books have a lot of great information and can change the way you think about things.

Most of all, personally I think you need to just trust you.  You are with your kids 24 hours a day, 7 days a week, 365 days a year. You know how they act, how they eat, how they exercise.  You know how they react to certain situations and how they act on a normal basis.  You know their normal.  I know that when Abbie is happy, smiling, getting along with her sister and the entire family, wanting to play, she is in a normal range.   When she is argumentative, has an attitude, tired, grumpy, she is more than likely low.  And when she is hyper, complaining of a headache and a stomachache, she is more than likely creeping up higher than I like. 

And if you are reading this and you are the one with T1D you definitely know yourself better than anyone else… trust yourself!  That is the moral of it all for the caregiver or the person with the disease.  Trust yourself, trust your gut, trust the reaction, and trust the responses.  

Until next time….

Totally figuring it out…. not…

Let me tell you something about T1D….

The moment you think you have everything under control, everything is tightly reined in, numbers are looking fantastic, something will change.  Whether the air shifts in the atmosphere, the stars are no longer aligned, your 11-year-old starts her period, or decides she wants to hoard her low snacks, just know always be prepared to change it somehow and don’t let it get you down when it happens, because it will happen. 

Christmas went by, January went by and we had everything under control, everything tightly reigned in only needing to do small adjustments here and there.  I had gotten very comfortable with changing Abbie’s settings myself and I was very careful in doing so. I made sure I only changed one thing at a time and by no more than 10% so that I could keep track of what I changed and what worked.  At this point, I never changed her target number, it remained at 150 and her correction factor had stayed the same at 90 mainly because I didn’t really know how these two numbers worked at least enough to do anything with them.

In February, we noticed her numbers started to creep up on us, mainly at night.  This normally signifies a growth spurt, so we ran some temp basals on her pump and it worked for a couple hours.  Then she would creep up in the 200’s, then 250’s and getting her back down below 150 to our comfort zone of 110-120 was very difficult.  I knew it was because of the correction factor and the target, but again didn’t know enough about them to change them. So, I tried to start reacting sooner to the numbers and arrows.  Once I saw 140 with a diagonal up arrow we started a temp basal, and gave a small bolus.  Hoorah! This worked, not quite as well as what I figured out months later, but well enough for someone who had really only been doing this for 4 months. 

In March, I received a call from Dexcom asking if Abbie and I would be interested in doing a Podcast for their #warriorup program.  They asked me some questions about Abbie’s diagnosis and some other questions about the way we ate and how we liked her G5 and then we were offered an opportunity to come to Nashville later that month to record the Podcast with @EricPaslay.  So, the end of the month rolled around, and Abbie and I were off to Nashville.  Now remember, we ate very low carb at home, but I decided while we were in Nashville, she could eat however she wanted.  Our first real day there, I took her to the zoo and the Country Music Hall of Fame.  The kid had to turn her pump off and eat Dip-n-Dots, drink a Coke, and have like 3 fruit snacks just to stay above 80.  Later that night after we had dinner with the Paslay’s and the other Warriors, we were walking back to the hotel and she was rising with an up arrow, then double up arrows.  Ok, I thought, she just needs an extra bolus and a temp basal.  I had swagged (guessed the carbs) dinner, and apparently swagged wrong.  But the numbers didn’t come down.  Up to 300, so at that point I figured it was a bad site.  We changed it, I gave her a bolus and she came down to around 210 for about an hour.  She hovered there until about 3am.  Then she went back up to 280.

For the next 3 days, Abbie ran at 150% temp basal and we would still have to give extra boluses. I had no idea what was going on, but I knew it wasn’t the site and I knew it wasn’t the insulin. But I also knew it wasn’t anything I could fix in Nashville, that unfortunately it was going to have to wait until I got home. So, with those settings it kept her around 140-160 on average, higher than I liked but better than the 250 she was running. When we got back home, I think we had been home for about 2 hours when the Dexcom went off with an urgent low alarm and Sugar Mate had sent me her location and was calling my phone. I remember looking at her and saying there is no way, you were just 160, go check by blood. The Dex was reading at 51, she stuck her finger and it said 49! And just like that it was over, thankfully I had not dialed in any permanent numbers, so it was easy enough to turn off the temp basal and give her some juice.

Hormones are a beast….

Seven days later, while at a VMI vs Hampton University Lacrosse game, my little girl turned into a woman.  And all those high numbers made sense.  During her cycle her numbers were beautiful.  Actually, steadier than ever, no lows, no highs right on the target where we wanted her to be between 90-120 all day and night. 

So, a few days later, maybe about a week later we had another Endo appointment and again we were seeing the NP and not our regular Endo…starting to see a pattern here huh?  Much to my surprise, I LOVED this NP.  She was attentive, listened, and for the first time in two years did not scold me for everything we did.  Actually, the first thing she said when she walked in the room was, “Well, I know you have to come here every three months to get your prescriptions and you A1C, but other than that I don’t know why you’re here, you guys are killing it!”.   She then told me that her A1C was at a 6.5%.  So, in 3 months we had brought her down from a 7.3% to a 6.5%, even with the highs and puberty and growth spurts.  I finally got my questions answered about target numbers and correction factors and discovered I was scared of them for nothing but to lower them slowly so I didn’t have a ton of lows.  We also talked about making Abbie fully independent at school, since she had shown a ton of responsibility lately.  She was no longer sneaking or hoarding food as she now understood the consequences and her and I were texting back and forth throughout the day about treatment decisions. However, she still had to go to the nurse to be able to do anything which required a lot of missed class time. 

Unfortunately, she said she couldn’t change Abbie’s DMMP (her Medical Plan that is required for school), that her primary Endo would need to do that but she would notate that she thought it was a great idea and that it should be done before she entered Middle School if not sooner.  She also notated that I had been making changes in settings on my own and was very competent to do so.   All around I was very excited to see her again. Oh, how one phone call conversation about 3 weeks later would change all of that….  

Coincidentally, this was about the time I discovered the Arden’s Day Blog and the JuiceBox Podcast. Let me tell you, if you are newly diagnosed or even if you have been diagnosed for a while, this blog and the podcast has a plethora of information. It has been a Godsend for me and allowed me to validate what I do on a daily basis. It has allowed me to show my husband that I am not crazy and not the only person alive that is not scared of insulin, that is aggressive or #boldwithinsulin as Scott Benner calls it. So go check out the Podcast and the blog at Ardenday.

Next up…. What do you do when you have reached your breaking point with a doctor that does not understand what your child needs or what you want for you child?