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.

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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. 

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

 

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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?

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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.

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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.

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Diabetes Blog Week Tuesday: The Other Half of Diabetes

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

Emotions. There are so many emotions surrounding diabetes. Her feelings. Our feelings. The feelings of everyone involved. Mental and emotional aspects of diabetes are tough, maybe even tougher than physical aspects. Because you get used to blood, and needles, and finger pokes, and bionic parts, and beeping. And, come to think of it, it’s more visible, more tangible, more straightforward. The emotional stuff is trickier, harder to notice, harder to understand.

Lots has been said about stress and burnout of T1D parents. I’ve written several posts about it before. When we are on our best behavior, we handle well. So much so that I wrote a column for Insulin Nation on tips and tricks on handling burnout.

But enough about us. Let’s talk about V. While she’s generally a rock star and takes it in stride with remarkable resiliency, humor and optimism, it’s not always easy. What makes it even more complicated is that in addition to managing emotions about diabetes, she has to manage emotions directly caused by diabetes.

I remember how several weeks leading up to V’s diagnosis we noticed that she became really emotionally volatile. There would be meltdowns seemingly out of the blue, over-blown reactions to minor things. She’d be sent to her room, raging and sobbing, acting and feeling completely out of control. My husband and I watched in bewilderment. What was going on? Was this a preview of what is to come in adolescence? But she’s only 8 years old, how can it be? But then I’d talk to some friends and they would share how their daughters sometimes acted the same way. So maybe it’s normal girl drama? But V was fairly even-keeled before. Something did not make sense.

We’d talk to her, trying to help her manage her feelings and behaviors. What is going on? We just want to understand so that we can help you. She could not explain. She’d be sobbing and telling us that she did not know why she was so upset or angry, and that she could not control it. It was especially bad around mealtimes. Suddenly hunger became intolerable, an almost certain trigger for an epic emotional meltdown.

T1D explained it all. V’s undiagnosed BG swings created tsunamis of mood swings. Highs translated into intense and uncontrollable rage with a generous side of strong upset. Lows brought out the whining, complaining and crying at the drop of a hat. But at least now we knew what was going on and we felt more empowered to handle it.

Not that it’s straightforward. How do you tell a difference between a “high angry” or “regular angry”? How do you know when the tears come from feeling beat and tired due to a stubborn high or low, or due to some unrelated upsetting event? How do you tell “hangry” from bad attitude? How do you know when to hug and comfort your child or when to discipline her for talking back or lashing out?

Helping a T1D child manage her emotions requires us to rely heavily on trained intuition. If something feels amiss we must first rule out BG as the culprit. “When in doubt, test BG” is our go-to motto. Another one we had to adapt quickly is “Don’t make decisions when you are high.” Closely related is “Don’t try to deal with a conflict when you are high.” And there’s always the good old “FOR CRYING OUT-LOUD DON’T JUST SIT THERE, TAKE A FAST ACTING SUGAR!!!” Wait, that’s not a strategy, it’s our own reaction. Because you know what, when you are a parent operating in an exhausted and sleep deprived mode, sometimes the last thing you want to do is be in tune with your child’s emotions. You just want your child to listen, comply and “act normally”. As you may have guessed, this does not work out well.

In some ways things have settled down a lot since diagnosis. Now that V’s BG is more tightly controlled, these meltdowns are far less frequent. Her emotional reactions are still very much affected by highs and lows but we all spot and understand them better. In other ways, things are getting more…well…interesting. Puberty is fast approaching and that emotional volatility is inching up regardless of what diabetes is doing. It’s for all of us to figure out. Even in V’s 504 there is a line addressing behavioral aspects of diabetes, and instructions to test BG if V’s behavior appears out of character before considering any disciplinary actions.

The roller-coaster continues. Strap yourselves in, it’s one hell of a ride.

The only roller-coasters I approve off.

The only roller-coasters I approve off.

Diabetes Access Matters!

Yesterday the diabetes online community (DOC) became abuzz with the news that effective July 1st, United Healthcare (UHC) was partnering with Medtronic as their ONLY in-network insulin pump brand. While people who are using other pumps still on warranty would be covered until that warranty expired, and the change does not apply to pediatric patients, this is a significant restriction of choice. Many people wrote eloquently about numerous implication of this collusion. Here is a comprehensive coverage of the news and reaction from DOC.

This new change does not affect us directly. We are not using Medtronic pump and our insurance is not through United Healthcare. But we are affected nevertheless and I’m about to unleash my emotions here. I.AM.ANGRY. And also a little scared.

I am angry that UHC and Medtronic colluded to restrict patient choices in the name of profit. They say it’s for patients’ own good but come on, really? We are not stupid. Whenever did restricting choice and access improve outcomes? Access and choice are not luxury, they are necessity. Diabetes is damn difficult to manage and no insulin pump is created equal. People have good reasons to pick one pump over another. It may be due to integration of Continuous Blood Glucose Monitoring (CGM) with the pump, or ease of using it, or amount of insulin it can store, or possibility smaller incremental delivery of insulin, or pump being waterproof. For example, we chose OmniPod partially because our daughter is very active and we did not want to deal with tubing and disconnect for physical activities. This proved to be a very wise decision. Turns out that discontinuing background insulin (which is what happens when one needs to disconnect form the pump) has a drastic effect on increasing V’s BG.

I am angry that the two companies made the decision in the name of patient outcomes without consulting with patients and doctors. Of course I don’t buy that line of “we are doing it for your own good.” And yet, if they claim to be listening to patients, how is their decision reflective of what patients need?

I am angry on behalf of all people who will soon be directly affected by this decision. People who have to give up the pumps they use and love for the one that may not be right for them. People who may have worse outcomes because of this change. People who will have to endure yet another fight with their insurance company to meet their needs.

I am angry specifically at Medtronic for entering into this deal with UHC. I would expect this from an insurance company. But from a company that is supposedly working to help diabetics improve outcomes and quality of life? It feels like a low blow and a serious breach of trust.

I am angry of how this decision makes an already difficult and frustrating disease even more difficult and frustrating to manage.

I am scared of how this sets up an ugly precedent. Which other insurance companies will follow suit? Which other pump manufacturers will jump on the bandwagon? Are we next?

I am scared of what this will mean a few years down the road in terms of innovation. Will other companies be driven out of business? Will this impede collaboration between different companies in their joint effort to bring better tools and technology?

I am scared of what this will mean a few years down the road in terms of Artificial Pancreas technology. Will our daughter be able to choose based on her needs? Will there even be more than one choice?

I am angry and scared. And I am energized. I stand with all those who are immediately affected by UHC/Medtronic collusion and with everyone else in the diabetes community who believe that a major line was crossed. We will fight this and we won’t go down quietly.

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Image Credit: takechargehealthcare.com

Random, with a chance of foul language

No, not T1D, though it can definitely be that way…

My hubby asked me the other day if I was running out of ideas for this blog. Nope, plenty of ideas, but little time or energy to organize them. But then I thought, why not use this post as a giant dump of all some things T1D and gluten-free that have been occupying my head space for a while? So her we go, in no particular order.

Parental distress and T1D

In regards to the findings of this research study, which was the topic of another Insulin Nation article (not written by me): no shit Sherlock, T1D parents are stressed out. I think healthcare professionals forget about it so much that we need to have research from Yale to show them that it’s a real thing. But some parents were up in arms about the 33.5% average of people who reported distress. Only 33.5%?!

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An average can be rather useless. (Quick demo: you take a test and get a 10; I take same test and get a 90; our average is 50.) The researchers pulled and aggregated data from various studies that used widely different measurements of distress, from general parental distress to PTSD and clinical depression/anxiety. And the prevalence ranged from 10% to 74%. Most likely 74% reflects prevalence of more common and general distress, while the 10% is a figure more reflective of a clinical diagnosis. So the 33.5% means nothing, so let’s please not focus on it and instead focus on how to help T1D parents find the support they need, OK?

A recent gluten-free find that made me insanely happy:

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Refrigerated cookies ready to bake. Take them out, lay them on a cookie sheet, bake for 12-15 minutes. Perfect, easy, and so unbelievably good. Available at our local supermarket.

I made them for our fabulous New Year’s Eve celebration.

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I was going to take better pictures of these beauties but by the time I got around to it they were all gone. Eaten. Devoured. I got to inhale a few crumbs. Also, I’m too lazy to get off my chair now to look in the freezer, where we have a small stash, and look up the carb count. It doesn’t matter anyway, they are carb-worthy.

(Speaking of things that are gone… Remember my love letter to Trader Joe’s meat sticks? They had issues with supplier and no longer carry them, and may never ever again carry them. Which makes me really sad. Good thing we have these wonderful cookies to cheer me up.)

When there is a real problem with the pump

Like, when you put more air than insulin in the pod, and the pod does not realize it, and it keeps thinking it’s delivering insulin whereas in reality it’s delivering insulin-flavored air, this happens:

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Fortunately we caught on quickly enough and rectified the problem within hours. It involved changing the pod AND doing an old-school injection to speed up insulin delivery.

Ted Cruz, you are an asshole

And an ignorant one, at it. Let me be more specific: I am referring to his promise to remove gluten-free food from military, because it is just PC or a social experiment. Of course gluten-free is just a fad and the US military is trying to keep up with the Joneses. Headdesk. Facepalm. OMGWTFBBQ.

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Diabetes Awareness Month, Day 24

I left you with a teaser yesterday. Today I will finish the story.

V has been at her grandparents’ house for a few days because of Thanksgiving break. When she is there, she is essentially flying solo with our support. We dropped her off on Sunday night and talked about night-time management. The challenging thing is that V is a deep sleeper and in the past has always slept through every single Dexcom alarm and through our phone calls. I would have to call grandparents and have them wake V up if she needed to do something in the middle of the night. This time, we took Dexcom out of its case and put it in a glass. We also made sure that V’s ringer volume was all the way up and chose a ringtone that she felt would wake her. We left hoping that it was a better system of communicating that would give V more independence and remove some of the stress and night-time burden off of her grandparents.

I woke up several times in the middle of the night to check Dexcom app and things were looking pretty good. Then at 4:53 AM I woke up to low alarm. 4:53-effin’-AM. I sat up and hesitated. Did V hear it? Is she waking up now and about to call me? Dexcom was showing a 74, so it was no reason to panic. I decided to give her a few minutes first (and to give myself a few minutes to wake up, get the brain going, and sneak into the bathroom.) V never called, so I picked up the phone and called her. Would she hear it?

Ring, ring, ring…

V: (very sleepy) Hi Mom

YES! She heard the phone. Success.

Me: Hi baby, did you hear Deckie?

Her: No.

So much for all those hacks. The child still can’t hear Dexcom alarm. Ugh.

Me: I’m so sorry to wake you up. Deck says you are low.

Her: (still very sleepy) OK

Me: I need  you to test now.

Her: OK

And then there was silence. For a few seconds I wondered if V went back to sleep. But then I heard some rustling and the familiar sounds of lancing and beeps of the strip in the meter. Whew, she was awake and following the plan. While she was testing, I was mulling over options. Glucose tabs? Gel? Decrease temp basal or leave it alone?

V: It’s a false alarm. I’m 134.

Me: You are what?!?

V: I am 134.

Me: (OMGWTF!) OK, please calibrate Deckie and you can go back to sleep.

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Because there is nothing more fun that waking up to a false low alarm at 4:53 AM. 

Diabetes Awareness Month, Day 9

I hope you slept well last night. Us, not so much.

Due to a combination of several reasons V was high yesterday evening. And, in spite of knowing better, we did not treat high BG more aggressively right away by temporarily increasing both correction and background insulin dosages above recommended levels. We waited it out until BG was high for a few hours. If you’ve been retaining some of the info from my earlier posts, you may recall that high BG turns into a quick vicious cycle: the higher BG and the longer it stays high, the higher insulin resistance and the harder it is to bring BG into a normal range. We knew it but for whatever reason we did not act on our knowledge and experience. We gave V normal doses and nothing happened. She stayed high and went to sleep high. At that time we realized that we had to do more and finally deployed our true and trusted strategies. Within 1.5 hrs BG was dropping into a good range. Good, right? Not so fast. It was dropping and dropping and dropping. It’s like all the insulin that was previously delivered was finally absorbing into V’s body, and it must have been a LOT of insulin.

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The first low alarm sounded around 10:30 PM. I tested V and she was about 60. I woke her up, gave her some juice and temporarily cut insulin delivery. This would typically solve the problem and stabilize BG. Except this time when I tested 15 minutes later, V was…drum roll…29! Our new low record. Sheesh. I ran to the kitchen and got her more juice. She drank the juice and went back to sleep. I actually stood there and watched her for a few minutes. I don’t worry easily but a thought of her possibly going into a seizure crossed my mind. 15 minutes later BG started to come back up, but just as we thought we could get to sleep she started to crash down again.  My husband took over at about midnight because I was dead tired. But I could not really sleep through all the low alarms that kept going off. And so it continued until about 3 AM.

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We all woke up completely exhausted. V said it was “worst night ever.” I don’t know if it’s worst ever, but at the very least it gets an honorable mention. Possibly a podium finish? I’m too tired to make that determination now.