The price of staying alive

Here is our CVS receipt for insulin. V needs it to live, plain and simple. And thanks to puberty she needs a lot of it. The retail price of each vial is over $300. Retail price for V’s 3-months supply is nearly $3000. With insurance AND discount program from Novo Nordisk, our price goes down to $75. We are very fortunate to have decent insurance. This is fucked up.

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Disaster-ready…or not?

The wildfires are raging in CA. Dry Santa Ana winds are supposed to return tomorrow and it is making me nervous. In 20 years of living in SoCal, we’ve had our share of big fires. Fortunately, we did not need to evacuate for any of them but I know plenty to people who had.

Side note: people who don’t live in CA tend to think that the biggest natural disaster we, Californias, are afraid of is an earthquake. Ha! Nope. Yes, earthquakes happen here from time to time. Sometimes we even feel them. And perhaps one day we may get a “big one.” But who knows if it will be in our lifetime and who will be affected? Wildfires, on the other hand, happen every year, and there is a good chance we will be affected directly or indirectly.

View from our backyard four years ago. This fire was small and was stopped quickly.

Emergency evacuation under any circumstances is stressful. Add T1D and Celiac to the mix, and it’s about 100 times more stressful. There are many things we can survive without, but Vic literally cannot survive more than a couple of days without insulin. And she has a million other important diabetes supplies. Plus, she has to have some safe GF food she can eat.

What we (and everyone, really) should do is have an emergency bag always packed and ready to go. Unfortunately, we are not that organized. But as I noticed that our complete lack of preparedness was contributing to my level of uneasiness, I decided that I can at least start organizing some things.

First up: diabetes supplies! I went through everything, spent about 20 minutes looking for the ketone meter, moved things around, and consolidated. In emergency, we grab 1. V’s diabetes backpack that contains opened insulin, pump, glucagon and fast-acting sugar; 2. Box of extra supplies from out bedroom; 3. Insulin from the fridge and 4. Pods and sensors from the family room.

Second: gluten-free food. After surveying our kitchen and garage, I now know that most of the non-perishable GF food is in the kitchen pantry and garage storage. In an emergency, we will grab as much of possible of cereals, bars, trail mix, and oatmeal packets. This will tide us, and especially V, over for a bit.

Third: water. Which maybe should be a priority over food? But in my brain, GF food takes priority over water. I can’t explain it. Anyhow, we usually have 5-gallon jugs, unless it’s a day or two before delivery and we may be running out. For now I’m comfortable taking our chances on one being available.

Fourth: asthma meds and nebulizer. V’s brother can be seriously affected, especially if it’s fires and the air quality is bad. Now they are all in one box that we can quickly grab.

We are nowhere near done, of course. We should have a bag on the ready with extra clothes, toiletries, and other emergency stuff. We need to make sure all important documents, such as passports and birth certificates, are together in one place so we can grab and go. And then we have our two dogs, so we will have to grab their leashes and food. Luckily, it’s all already organized and should not be difficult.

Best case scenario is that we will never have to evacuate. Second best case scenario is, if we have to evacuate, we will have time to pack and get ready. If we don’t have time and have to grab and run, I feel better now that we are more organized and I wrote down our plan. Of course worst case scenario is that we are not even home and are not able to go home to get our supplies. V always carries a backpack with insulin and some other basic supplies with her, so we should be OK for at least a day or two. And in that dire scenario we will have to wing it somehow. May we never need to execute our emergency plans!

Have you ever had to evacuate in an emergency? What have you learned from it? Am I omitting any important things specifically related to diabetes and Celiac? Please let me know in comments.

T1D Adventures, Swim Team Edition

We hardly ever get weird/ignorant comments about diabetes, but I guess V’s number finally came up sometime in August. First, V almost got disqualified by an official for wearing a pod at a swim meet. According to the USA Swimming rules, swimmers cannot have anything attached to them. So one official took an issue with the pod on V’s arm. He first went to the coach, who tried to explain to him that it was an insulin pump. Then the coach had to pull V in, so that she could re-explain to the official what that thing attached to her arm was. The official asked if my daughter could take it off, to which she said “are you fucking kidding me” NO. He finally left her alone and let her swim.

I now have a screen cap of USA Swimming rules pertaining to swimwear saved in my phone. The rules do not forbid in any way, shape or form attachments of medical devices necessary for swimmer to, like, LIVE.  They are designed to prevent swimmers from wearing anything that would give them an advantage over others. I haven’t needed to throw the rulebook at any of the swim officials yet, but I’m prepared!

Then about a week after that meet, V was getting swim team photos taken. The photographer, upon noticing the pod on her arm, asker her if she wanted it to be photoshopped out. The conversation went something like this:

V: No, thank you.

Photographer: Are you sure?

V: Yes, it’s OK.

Photographer: Are you really sure? It’s bulky. I can photoshop it out for you.

V: No, it’s OK.

Photographer: I think your parents would want me to photoshop it out.

V: No, they are OK with it as is.

I was not around for either one of the events and only found out after the fact. But I am happy V advocated for herself, and I am even happier that she feels confident and not in the least self-conscious about her robot parts. Besides, if you ask me, I think the pod makes her look more badass. Or, I shall say diabadass!

Sometimes they get it right!

As I was driving to work today, I was thinking of what to post about, feeling a bit intimidated about making 30 posts in a row. Then I thought it was silly. Diabetes makes itself known and present every single day of our lives. Surely an opportunity would present itself.

Indeed it did as soon as I opened my work email. In my inbox sat a monthly health and wellness newsletter. I don’t pay much attention to these newsletters, to be honest. I scrolled quickly and was about to hit delete. Then the headline of “diabetes month” caught my eye. So I decided to see what the article had to say. I braces myself for the worst. To my amazement, it launched into an explanation of T1 vs T2. And it described things scientifically but simply. And it talked about genetic predisposition for T2. And the tone was free of stigma and shame. And the links were pertinent, credible (ADA), and helpful.

We see so much misinformation out there and it was refreshing to see someone doing it right. Surely, I would rather them not open up with description of complications. And I’d prefer they mentioned insulin therapy and medication as important components of T2 treatment. But overall this was so much better than what I usually see, when T1 and T2 get lumped in together and there is an implication that diabetes can be cured with diet and exercise. I decided it was important to email my positive feedback:

Five Years of T1D

5/22/18 marked five years since T1D diagnosis. It’s hard to believe that five years have already done by. In five years, our family turned into T1D (and gluten-free) pros. So this Diaversary was a cause for celebration of living well with and despite T1D and Celiac.

The morning of 5/22/18 started with a breakfast complete with a heart-felt whipped cream message, and V sporting her new awesome T-shirt. Pop quiz: Who can tell me what the T-shirt design means?

V wanted to mark the day by getting a treat from Starbucks. Unfortunately it was thwarted by diabetes…

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The trip had to be postponed until the following morning. But fear not, V got to check off her bucket list wish of showing up to school with a cup of Starbucks in hand.

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Then the following day came V’s quarterly Endocrinology appointment. I was curious about her A1C. Her meter and Dexcom readings were suggesting improvements. I was also curious about some other goals that V was working really hard on. When V’s endocrinologist walked into the exam room, she was practically beaming at us. She was so pleased with everything. As she was gushing praise on V for doing a great job, I tried to peek at the paper in her hand with A1C result scribbled on it. Since I was looking at it sideways and upside down, I decided that I was not seeing it right. I didn’t believe it until the Endo announced it. 6.8! V’s best A1C ever!!!

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Better yet, the Endo was also pleased with the range of V’s numbers, which is a different way of measuring quality of BG rather than only looking at the average. And there has been progress with the other goals V had been working on. In other words, success on all fronts!

The Endo suggested that we really ought to celebrate, and who are we to go against medical advice? A couple of days latter we hit our favorite breakfast joint, where V feasted on amazing gluten-free Cinnamon Roll pancakes. 100% bolus-worthy!

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As V’s Diaversary Fest was wrapping up, we decided to update our T1D and GF family photo, with all four of us wearing our matching amazing T-shirts.

 

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So, FU T1D! Here’s to 5 years of kicking its butt, and may V have her entire lifetime of living well with it!

(P.S. If you still don’t know what the T-shirt means, please guess in comments!)

Flying Blind

“So, Mom, I have a question. Umm, what’s my insulin to carb ratio?”

V remained in her seat and waited for all of her carpool buddies to exit the car before asking me a little sheepishly. And confessed that she left her PDM (pump remote) at home. This was the first time in four years of pumping that she forgot to bring PDM to school, though we’ve had a number of close calls. OK, let’s problem-solve. I told her what the ratio was. She keeps insulin and syringes at the health office, so she would be able to give herself a shot to cover lunch. I reminded her that she could go off of Dexcom data (continuous blood glucose monitor.) “Umm, I left my phone with the PDM.”

Oops. Dexcom transmits readings to her phone. If her phone is at home, she has no way of knowing what her BG readings are.

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On the left is the PDM, which also acts as a BG meter. On the right is V’s phone displaying Dexcom data. When the numbers match, it’s call a Unicorn. When BG is 100 it’s also called a Unicorn. Therefore you are looking at a rare double Unicorn and it’s a thing of beauty.

So, without access to Dexcom data she’d have to test to know her BG. I was thinking hard and fast. I just happened to have a case with extra supplies with me, which had an extra meter. I found it, turned it on to test it and… Dead battery. But wait, I had an extra battery! I was standing in the school parking lot, fumbling with the battery and I could not take it out for the life of me.

“Forget it! I think you have an extra meter in the health office.” I knew for a fact that she had a meter for ketone strips. There was a good chance she had compatible blood sugar strips with it too.

I sent her off to school and hesitated for a few minutes before driving away. It was 8:40 AM and I had to be at work by 9. I could

A. Go back home, get her stuff and bring it to her, and be really late to work. OR

B. Let her go by feel and manage with supplies she had at school. It was a short day anyway, so I’d be picking her up about 4.5 hours later.

Her morning BG was in good range, her pod would continue to deliver background insulin regardless of where the PDM was, and she had supplies at the health office. She could give herself a shot to cover lunch carbs. And there were helpful staff and other resources at school, in the event something bad were to happen. I took a big breath and decided, for better or worse, to let her fly blind, and drove off to work.

At about 12 I noticed a missed phone call from a different number and a voice message. “Mom, I’m calling from my friend’s phone. There are only ketone strips here. I don’t have test strips for this meter so I can’t test.”

Well, shit.

I took out the spare meter again, and this time I was able to figure out right away how to replace the battery. It’s amazing how much better your brain works when you are not in a big hurry. I would be picking up V and her brother from school in about an hour. She could hang in there.

As I was driving to pick up, V called me again from someone else’s phone. “Yes, I got your message. I was able to replace the battery so we can test your BG when I pick you up. I am on my way. See you in a few minutes.”

When I picked up the kids, V told me that she gave herself a shot for her lunch plus an extra couple of units just in case. I pulled out the meter and reached into the spare supplies bag to get test strips except… they were not there! Murphy’s law never fails! Back to square one. I drove the carpool buddies home and then hesitated again. We would normally drive straight to piano lesson and I had no extra time to spare. I could

A. Go home first to grab V’s stuff and be very late for piano lesson. OR

B. Continue to fly blind for another hour-plus.

V was feeling OK. She ate lunch, so she was not starving. She was not experiencing any symptoms of high or low blood sugar. We had plenty of fast acting sugar with us. I took a deep breath and again, for better or worse, decided to continue flying blind.

V turned away from me looking upset. “You have no idea how stressful it is to not know what your blood sugar is! I already felt low in the morning and treated even though I didn’t know if I was actually low!” Good decision, kiddo!

I think it’s the longest she’s ever gone not having any information about her BG and going completely by feel. I do not doubt it was very stressful for her. To be honest, I was pretty nervous too, but proceeded to drive to piano lesson anyway. I have faith in V’s ability to listen to and trust her body, and lately she has been feeling both her highs and lows more consistently. And I have faith in our collective ability to deal with whatever situation may arise. If she felt low, we would treat. And if she felt high, while it’s not ideal, we could wait an hour or two before giving a correction. It would be OK.

Piano lesson was uneventful. When we got home, V immediately beelined for her PDM and tested. 60. Whew. *

“I can’t tell you how happy I am to finally test my BG!”. Not the words you hear often from a T1 tween.

File this under “lesson learned.”

Also, file this under “all is well that ends well.”

Also, file this under “go straight to D-Mom hell for being so reckless.”

*60, while considered hypoglycemia, is not necessarily a bad number for V, nor it is necessarily an indication of her BG dropping even lower. I know of at least a few T1’s who consider 60’s to be within acceptable range for them, just as I know a number of T1’s who cannot be below 70+. Sometimes we let her ride it out in the 60’s as long as she is feeling well, not trending down, not doing any physical activity, and does not have any active insulin in her system. At times she feels utterly crappy in the 60’s, and then we treat immediately regardless of circumstances. There does not seem to be any rhyme or reason. Why? Diabeetus, that’s why!