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

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.

Milestones

***Two months. It’s been two months since my last post. I’ve been meaning to write about this or about that, but ultimately life got in the way. I think it’s my longest break between posts. I don’t know how to feel about it. I miss more regular blogging but it’s still not happening for whatever reason.

***Braces, round two. No one is excited about it. Between restrictions that come with braces (no hard or chewy foods, among other things) and restrictions that come with Celiac, V gets, well, more food restrictions. And pain and suffering. Because braces are painful and annoying. Yay…Nope.

Enjoying final corn on the cob before braces.

***1:5. This is V’s shiny new daytime insulin to carb ratio. To translate from diabetes to real world, this means that for every 5 g. of carbs V needs to give 1 unit of insulin. It is a LOT of insulin. It used to be around 1:15 back in the day. This means a few things. One, she is receiving much higher insulin dosages with a much smaller margin for error. If we overestimate the carbs, she is at a much higher risk of a bad low. If we underestimate, her BG can shoot through the roof. Both happened. We are learning to adapt and deal with it. Secondly, we are going through insulin like water. At V’s next Endo appointment will need to address changing the Rx to increase the amount because running out of insulin is about the worst nightmare anyone with diabetes can experience. Thirdly, the pods are only lasting about two days. They can last up to three, if they don’t fall off or run out of insulin. A pod can hold a maximum of 200 units. She usually burns through about that much in a couple of days now. Again, to put it in perspective, in the beginning we used to fill it up with about 75-80 units and it would last three days with some insulin to spare. Fourth, this means that unless the food is truly carb-free, such as meats and cheese, she needs to cover it with insulin. There is no more such thing is a little bite of this or a little bite of that. There is no more not needing to bolus for low carb foods that are 5 g. of carbs or less. Got carbs? Better break out some insulin.

Why so much insulin now? In one word, puberty. Raging hormones, growth, changes. And it may get worse before gets better. And speaking of worse…

***Highest A1C since diagnosis. It is what it is. And it is not really all that bad of a number. Still, it’s higher than desired. Why? In one word, puberty. We increase insulin dosages, things stabilize for a few days, and then V starts going up again. Up up up she goes and we can’t seem to catch up. But then she’ll have random days of lows, lows, lows. It’s hard to find patterns. Sometimes there are no patterns. So, FU puberty.

***Babysitter, officially. She’s 12. She got her CPR/First Aid Certification. She attended babysitting camp. I helped her draft her very first real resume. She has been helping out with neighbors’ kids for quite a while, and now she is ready for bigger parent helper/babysitting jobs.

 

Reality Check

Dear gentleman at the Aquatica Water Park:

At about 1:15 PM today you saw my 11-year-old daughter run up the stairs of the Tassie’s Twister ride with two of her friends and beeline straight to the head of the line. You called her out for cutting the line. I understand why you were upset: line cutting is not cool, and you purchased a quick access wrist band after all. But then my daughter showed you her RAP (Ride Accessibility Program) pass and explained that she has a medical issue that entitles her to go to the head of the line. You were still upset. She did not owe you an explanation – if park staff issued her a pass, this means she qualifies for it, and it gives her no joy to discuss her medical condition with total and unsympathetic strangers. However, she still tried to politely explain that she has Type 1 Diabetes. You proceeded to sarcastically tell her that she was still able to run up the stairs just fine. She tried to defend herself but you were mean. She was upset enough that she chose to turn around and leave.

What you do not know, and did not care to even try to understand, is that diabetes, water parks and long lines in heat do not mix. My daughter can be in a real danger of experiencing low blood sugars. Swimming and playing in water makes her BG plummet more than any other activity. Add heat and waiting, and it’s a ticking time bomb. She does a great job of managing her BG, but things can unravel very quickly and unpredictably sometimes. That’s just the nature of T1D. My daughter normally carries a backpack with all emergency supplies with her, so that if she starts to experience symptoms of low blood sugars she can test and treat. However, this is a water park. She is running around in a wet swim suit. She cannot simply carry her supplies with her. Where could she even leave her backpack before going down the slide/water ride and how could she pick it up afterwards?

IMG_3002

V’s diabetes backpack goes everywhere she goes

My daughter has been living with T1D since age 8. We’ve been to a number of theme parks in the three years since her diagnosis, and even though she is usually eligible for a disability access pass, we have never before asked for one. For starters, we have no tolerance for long lines. But even if she’s stuck in one, she has her supplies on hand, and it is easy to step out and take care of her medical needs when necessary. As I explained earlier, it’s both not so easy and more dangerous in a water park. I did not want to hover over her all the time – she wants to be a normal 11-year-old and run around with her friends. I am sure you remember being 11 and enjoying your budding freedom, and you’d agree that she deserves to experience it too.

So for the first time in three years, I asked for a disability access pass, a pass that gave her front of line privileges on four rides in the water park. This gave her safety. Safety that she should not be stuck in a long line without any of her supplies, feeling sick and not being able to take care of a potential medical emergency.

The disability created by Type 1 Diabetes is invisible. Aside from the cyborg parts and various diabetes paraphernalia, you see nothing. Yes, my daughter can run up the stairs without problems. Yes, she looks fine. And yes, she has a real, serious medical condition that creates a real disability. For the most part, she lives a perfectly normal life. However, there is a lot of diabetes management work that happens in the background that allows for this normal life to happen. And at times she has to deal with real limitations.

Unknown

My daughter did not look right when she came back to me. When I asked what was wrong I fully expected her to tell me she was feeling low. Instead, she proceeded to tell me about you, what you told her, and how you treated her. She was hurt by your words and taken aback by them. So far, we’ve only encountered supportive people. Sometimes they were uninformed, but always kind and willing to listen. You were judgmental and mean. Sadly, there are many people like you out there. I’ve heard all kinds of stories from other people with diabetes, so I knew it was just a matter of time before my daughter got her first dose of harsh reality. People with diabetes are routinely the butt of everyone’s jokes, the recipients of unsolicited advice, the targets of insults and ridicule. This was unavoidable but knowing it did not make it any easier.

I gave my daughter a hug, told her that I was sorry, and told her that unfortunately there are lots of people like you out there – people who judge quickly and are not interested in learning or understanding; people who, despite not knowing anything about diabetes, feel compelled to make hurtful comments about and to people with diabetes. I told her to try to shrug it off and not allow mean people and comments to ever, ever ruin her fun. Then I sent her back to the ride, reminding her that you must have been long gone from there and the coast was clear. My girls is a tough cookie. If having diabetes is not bad enough, she has to develop thick skin and learn how to deal with the deluge of ignorant and hurtful comments. After a few hugs, some venting, a show of support from me and her friends, and a blood sugar check, she went back to having a blast.

In the highly unlikely event you are reading this, let me leave you with a few parting words. You will undo all the wrong you did by learning more about Type 1 Diabetes and educating others about it. Also, please understand that just because you cannot see someone’s disability, it does not mean that it does not exist. And if someone tries to explain it to you, please listen and refrain from judging. If you think someone is cheating and taking advantage of a disability pass system, address your concerns with a staff member. And please be kind. All of us can surely use more kindness in this world.

hug_a_diabetic_tshirts-r7fcf904c017e48edb422dd138facd904_804gy_324

Three Years

Three years ago our lives were turned upside down. What was supposed to be a routine well-child appointment with minor concerns about a few weird symptoms turned into a three-day hospitalization and a T1D diagnosis. 

But here we are, three years later, thriving. Going into this anniversary, I was feeling some sadness and was fully prepared to blog about it. But as I sit today typing this post, the primary feeling is that of gratitude – for excellent care V receives, the resources and tools we have to manage diabetes, the support of our family and friends, and the amazing resilience V has shown from day one.

Our first diaversary was a non-event because we were busy with life, which is a good thing! We made up for it last year by having a more elaborate celebration. Today we had plans to go out for breakfast so that V could load up on her favorite pancakes. Alas, both me and my son were sidelined by a nasty cold. Hubby took V out for a quick father-daughter date of yogurt and park instead.

Here is to three years of living well with diabetes, and to many many more ahead!IMG_3012

Diabetes Awareness Month, Day 6

Cross-posting from Facebook:

#‎diabetesawarenessmonth‬
It’s late, I’m tired and need to get to bed, so I will make this short and sweet. V had her Endo appointment today and her A1C is back to 7.0, down from 7.5. I knew her A1C would be better this time than 3 months ago but it was way better than I expected. And we heard the words “fabulous” and “great control” come out the Endo’s mouth. Happy Day! I’m totally using the occasion to recycle a photo from an old blog post.

b364b191553dcdec6690ffd25c02f9c1

Second Diaversary

Diaversary: an anniversary of diabetes diagnosis. We need this anniversary like we need a hole in our heads. Yet, here it is, like it or not, so we may as well mark the occasion with all the fanfare we can muster.

Two years ago, May 22, 2013, our life was suddenly turned upside down. We went to a scheduled well-child appointment, oblivious to all signs and symptoms of T1D, and ended up in the hospital. I think that counts as a bad day, right?

Things were crazy and new and overwhelming at first. Two years later we are old hats at beating diabetes into submission. Granted, we don’t always succeed, but we are not doing too shabby, if I may say so myself.

This morning I made a lame attempt at whipped cream art to kick off the festivities.

IMG_1392

It’s supposed to look like “No T1D” sign. Instead it looks more like abstract art. OK, you can stop laughing now. Hey, in my defense, this was before I had my coffee. V appreciated the effort and I will keep my day job.

Then I dared V to do this stint at school: stick a syringe into her gluten-free lasagna entree and sing “Diabetes you suck” to the tune of Happy Birthday song. She accepted the challenge. Our wonderful school nurse documented the occasion.

IMG_1394

She also gave V this lovely card:

IMG_1400

Our school nurse is the best, hands down!

And then for dinner we headed to one of our favorite restaurants so that V could feast on scrumptious gluten-free cinnamon roll pancakes. With bacon, of course (not pictured.)

IMG_1396

This is definitely bolus-worthy. How many carbs did I guess for this carby, sugary beauty? 100! Gave 10 extra for a glass of milk, resulting in a largest single bolus in two years.

Best part? We were totally prepared to battle high BG. After we got home V played outside with her brother and next-door neighbor and did some running around. Two and a half hours after dinner she tested: 111! Who knows how the night will go, it’s quite possible that the high will catch up with us, but at least for one brief moment diabetes gods smiled at us and gave us a reprieve. We’ll take any reprieve we can get.

F**k off diabeetus! We live well and we will continue to beat you into submission one bolus at a time.