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…

IMG_7236.JPG

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.

IMG_7241

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!!!

IMG_7310.PNG

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!

IMG_7264.JPG

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.

 

IMG_7279.JPG

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!)

Advertisements

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.

IMG_6649.JPG

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!

Awareness, More Awareness…

Oh hi there! Come here often? I was totally shocked when I realized my last post was at the end of August. Has it really been that long? I guess I put a few things here and there on my FB page, but haven’t blogged in a while. November is Diabetes Awareness Month and in past years I’ve been blogging up a storm. This November I’ve stayed pretty quiet. I don’t have time or energy to post every day (or every month – HA!). I was not going to post anything today either but blogging material landed on my lap.

V’s diabeetus may have been feeling neglected, because just as World Diabetes Day got started on November 14th, diabeetus decided that we needed more awareness of it. To that end, Dexcom low alarm went off. And boom – one minute we are sleeping peacefully  and completely unaware, the other minute we are totally aware!

What a better way to mark Wold Diabetes Day than to battle lows in the middle of the night. (That was sarcasm.) Why was V’s BG so low? Diabeetus, that’s why.  According to all rules and logic it should not have happened. She went to bed at a solid 80 with no active insulin in her body and trend arrow holding nice and steady. She has walking pneumonia, which technically could have/should have raised her BG overnight, not lowered it. And in the past few days she’d been steadily going up overnight, even if she started with a good number before bed. We have not made any recent changes to her pump settings. We have not administered any insulin at bedtime. And yet, we had to pump her with four glucose tabs and suspend insulin delivery for an hour, and it took us about 3 hours to stabilize her BG and get it into a safe range.

IMG_5923.PNG

Over the course of 3 hrs alarms kept blaring. We kept getting up. V kept waking up. We poked her fingers multiple times. We could have given her more sugar right away but we did not want to over-treat and end up with an epic high, so we kept monitoring and doing it one step at a time. It was stressful and exhausting. Welcome to another night in our humble T1D adobe.

So why am I writing about this now, you may ask? Because I want to bring to light something that we don’t often talk about. What happened last night is great example of “shit happens, T1D edition.” People with diabetes have to face a lot of judgment. One reason for it is an assumption others often make that the person is doing something wrong: they are not eating well; not exercising enough or exercising too much; they are not following their doctor’s orders; they are not taking the correct amount of insulin. That surely there is a way to get BG under better control, to prevent most highs and lows, but the person is not making enough effort.*

Sure, there is always room for improvement and better glucose control. But what I want you to understand, really want you to understand, is that there are times when T1D makes absolutely no sense, follows no rules, and is completely unpredictable. Like last night, when it decided to act like a jerk, just because.

diabetes2

The one thing I really want you to take away from this post on World Diabetes Day is that diabetes management has so many moving and unpredictable parts. Please don’t assume, never ever assume, that the person with diabetes or their caregiver are doing something wrong or not doing enough. And be prepared that if you ask me “why”, the only answer you may get is “diabeetus, that’s why.” Usually delivered with a shrug.

shrug.jpg

*Disclaimer: People with Type 2 diabetes have it one hundred times worse when it comes to these types of judgments and assumptions. Sadly, sometimes it’s my fellow T1 peeps and parents who, in their defensive reactions of “I/my child did nothing to get T1D!”, throw fellow T2 brothers and sisters under the judgment bus. But that’s something to address in a separate post.

 

Good to go

In the past, new situations would require a more detailed explanation of T1D. My daughter has type 1 diabetes. “Here is what you should be aware of; here is what to do if she is high or low; here are the supplies; here is how to use glucagon; here is what she may need help with.”

Now that V is fully capable of handling all aspects of her diabetes care, things are different. One week before babysitting camp, I tried emailing who I thought was the right contact  to give them a heads up about V. I never got a reply and things got too busy for me to follow up. So on the day of drop off, I introduced myself to camp counselor and said this: “Just so you are aware, V has type 1 diabetes. She has all of the supplies with her and she knows what to do, she is completely independent in her care. She has her phone on her, she needs to keep it to call us if she has any questions or needs help. Please feel free to call us if you have any questions or concerns. Otherwise, she’s good to go.” The counselor asked if V had snacks for low blood sugar and I assured her that she had plenty. And that was that.

Today was back to school day. I prepared V’s supplies for health office. I like to take a minimalist approach, pack only the necessities, and refill as needed. As she is flying mostly solo, she only visits the health office if she’s unwell or runs out of supplies unexpectedly, and she always carries a glucagon and glucose tabs in her backpack.

Back up supplies, snacks and fast acting sugars will do. All fits in a relatively small box. Not pictured are a vial of back up insulin, string cheese and a couple of back up frozen gluten free meals, that go straight from our fridge/freezer to the one in health office. No letter, no flow charts, no detailed explanations.

When we arrived to school, we learned that there was a new nurse. I found her by the front gate, introduced myself and asked her where to drop off supplies. “I am V’s mom. She has type one diabetes and celiac. She’s completely independent in her care.” The nurse asked me if V was “the one with the pump” and told me she’s heard great things about her. And that a wonderful health tech who was there last year is going be there every day except Monday. Alright, this makes for a good start! I told her I’ll have V drop by and introduce herself at some point.

And that was that.

IMG_5402

Off to 7th and 4th grades they go. One is fake smiling. The other one is completely honest about his lack of enthusiasm. 

P.S. After V reads this post, I’m sure she can comment on how annoyed she was with the school not informing the new math teacher about her T1D, and her having to spend 10-15 minutes explaining it to her. She can also tell you how stupid diabeetus completely refused to cooperate and she fought highs all day long for no good reason. And we can also talk about our ongoing struggle of getting V to wake up to CGM alarms in the middle of the night, as it makes sleepovers more challenging.

But aside from that, she knows what to do. She’s good to go.

Most-wanted gadget

V’s annual Celiac blood panel was done recently, and results are not great. Four years after diagnosis and her antibodies are still positive. Worse yet, the numbers crept up a little from last year. Last year things were heading in the right direction and her doctor was hopeful that with this blood work result everything would be in the negative. Not the case.

I’m really frustrated. What are we doing wrong? Obviously somewhere, somehow, V gets exposed to gluten. But where? Is there cross-contamination at home? We are not 100% gluten-free. We keep regular bread and bagels, cereal, some pre-packaged snacks, and that’s about it. All meals we make are gluten-free. We are extremely careful about cross-contamination. We have a dedicated toaster oven and a cutting board. But perhaps it’s not enough and we need to go completely gluten-free at home?

Or is the problem with restaurants where we eat? Once again, we found a few that we consider safe. However, because V does not typically have any reaction to gluten that she can feel or we can see, we have no way of telling if what she is eating is actually safe.

Or perhaps the issue was during the cruise, where getting a safe gluten-free meal proved to be rather a frustrating challenge? Since we did the blood work shortly after we returned, it may be reflective of possible cross-contamination there?

How I would love to know for sure. And guess what? There is actually a gadget out there that could help us. Nima Sensor will analyze a food sample and tell you if it contains any gluten. If we bite the bullet and go 100% gluten-free at home, we can test food at restaurants and maybe finally track down the source of cross-contamination.

There is one little glitch. The price of Nima Sensor is a cool $275. And that’s just for a starter kit. Since each food sample requires a new capsule, those will run you more. The website recommends a subscription of 12 capsules per month at a cool price of $60 per month. If we don’t do subscription, we have to pony up $72 for 12 capsules. Those capsules will go quickly if we want to test V’s meals when we dine out, even though we don’t normally eat out more than once a week.

So here I am, staring at this cool gadget, really wanting it. But it is simply too expensive.

What do we do? I have no idea. If you are reading this post and you have Celiac, I’d love for you to weigh in. I’m also curious if it’s a reasonable expectation for tests to be negative. It is really possible? Would you eat a product that, according to the label, was made on equipment shared with wheat, or is that a no-no? What about a product that is made in a facility that also processes wheat? It is unreasonable for us to think that we can live a normal life where we don’t wrap V in a bubble, allow her to eat at places other than home, and don’t have to be on edge about everything she puts in her mouth?

We are going back to the GI doctor later in the summer to discuss all this. Perhaps we can squeeze in another round of blood work just to rule out vacation cross-contamination. Aside from that, I’m at a loss.

As safe as it gets: samples that we got at the Gluten-Free Expo

 

Diabetes Blog Week Throwback Thursday: What Brings Me Down

Today’s Prompt: Today let’s revisit a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

I asked V what brings her down about living with diabetes. Without skipping a beat she said “Low blood sugar brings me down.” She’s a wiseass. Wonder who she takes after?
I asked her to give it some more thought. “Think about it. What gives you the sads?” After mulling it over, she said “When I can’t eat when my BG is high. My life revolves around food, so it gives me the sads.” And then she happily scampered away.

Perhaps it’s no use asking a 12-year-old what brings her down about living with diabetes when it’s the last thing on her mind. And to her credit often she does this whole T1D thing way better than us, adults. She’ll wonder from time to time how much easier life would be without diabetes. She’ll get annoyed and frustrated about having to deal with the hassle of it. A bad high will add a generous portion of extra upset and anger when she is already upset and angry. A bad low will make her feel really lousy. Sometimes there will be a painful pod or Dexcom change. But she keeps moving along and happily living her life. How I hope that it stays this way.

IMG_4400.JPG

I hope she keeps this joy forever and ever

As to what brings me down? I don’t go there too often. I stay away from “what ifs”, take things in stride, and laugh at diabetes whenever I have a chance. When I do go there, it’s not so much down as worried. Worried about bad lows and future complications. Worried about V giving up on her diabetes care as she navigates adolescence. Worried about V being able to maintain good health insurance and access to healthcare when she becomes an adult. Worried about her quality of life with diabetes.

It’s not so much down as defeated. Defeated when we do everything right and still don’t get desired results. Defeated when we can’t put a dent into our credit card debt because medical expenses are relentless. Defeated when that stubborn high BG won’t come down no matter how aggressively we treat it. Defeated when we work so hard to tighten control but the A1C won’t move anywhere but up.

It’s not so much down as angry. Angry every time I hear about a cure in mice. Angry about so much ignorance and misinformation about diabetes. Angry about diabetes and diabetics being the butt of everyone’s jokes. Angry about judgment and hate.

It’s not so much down as exhausted. Exhausted after being up at night because of V’s highs or lows. Exhausted from fighting with insurance. Exhausted from having to shlep to so many doctor’s appointments. Exhausted from having to think about diabetes 24/7.

While V is young, I carry these emotions for her. It is my job as a parent to lessen her burden and I do it gladly. But I can’t do it forever. It is her diabetes and eventually, sooner rather than later, all these burdens that come with it will become hers. It is the one thing that really brings me down. 

IMG_2224

My really pathetic attempt at whipped cream art, created on one of V’s diaversaries. The message spells “T1D Sucks”. Because it does.

 

Diabetes Blog Week Wednesday: The Blame Game

Today’s Prompts is: Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!

I’m pleased to say that we are very fortunate. We have a fantastic healthcare team and are surrounded by supportive friends, family and local T1D community. The only one really bad experience we had was at the water park last summer, when V was rudely confronted by a stranger who felt she was cutting the line and, since she did not look sick, did not have any reasons to have a disability pass. I wrote about it in detail in this post.  To be honest, I really don’t feel like revisiting it. When someone passes judgment inadvertently because of misinformation, but without an intent to be hurtful, I am more than happy to have a discussion. But there is no reasoning with a jerk and, aside from standing up to them, I’m not going to waste my time and energy with someone who has no desire to be supportive.

a2f8031a463bb57a50c0593445eeef65

I can, however, offer a few advanced tips to those who have to deal with us, crazy D-parents and our T1D offspring.

-Instead of asking “How is V’s diabetes?”,  ask “How is V doing with her diabetes?” When asked the former, my knew-jerk response is “Eh, it’s still there.” But even if I’m not trying to be a wiseass (hard to believe, I know), I don’t know how to answer this question. When you ask me how V is doing, I can give you an honest and specific answer. Often it’s “She has good days and bad days.” But sometimes I can share that we’ve hit a sweet spot and things have been relatively uneventful. Or that V is really struggling at the moment.

-Please don’t tell us that you “could never do it” – give shots, or count carbs, or poke fingers multiple times. If you life depended on it you would. Instead, you can say “All this sounds painful and scary and overwhelming.” And personally I take zero offense if you say that you are grateful your kids are healthy and don’t have to deal with any of this crap. No, seriously – feeling bad for us does not preclude you from feeling grateful that you don’t have to go through what we are going through. Trust me, we would not wish it on anyone.

-When V tells you she hates immunization shots, please don’t say in a very surprised tone “But shouldn’t you be used to shots by now?” First of all, have you seen a diabetes syringe? The needle is tiny and the shots are usually painless or sting just a bit. Now, compare it to a needle that is used for immunization shots. It’s a monster in comparison. Secondly, pump and CGM insertions involve needles too. They may not always be visible but they are bigger and they hurt. So the last thing V needs in her life is another shot. You can say just that.

-Last but not least, when you hear about another “breakthrough” or exciting discovery/tech development in the news, please curb your enthusiasm.