Refill accomplished

What every T1’s fridge butter compartment should look like:

A thing of beauty

What we won’t be doing again: signing up for auto-refills, because for some reason they box is into a rigid 90-day refill schedule. If we refill manually we can do it after about 70 days.

What no one should ever be faced with: a ridiculous retail price of insulin. This is so wrong. Thank goodness we have GOOD insurance.

Down to the last vial

This is gonna be close. Next refill is on 12/8. One vial was opened today, not pictured. There is one more at school. And this last one in the fridge.

V has been going through ridiculous amounts of insulin. Puberty is largely to blame for her skyrocketing insulin needs. Add to it sometimes forgetting to bolus, which results in being stuck on high BG, which then takes even more insulin to bring down. Add hormonal surges when insulin is like water for a couple of days. Her insulin prescription was increased last time (to from 9 to 12 vials per 90 days!!!) because we were dangerously close to running out. Oh, and a couple of months ago she dropped a nearly full vial and it shattered. First time it ever happened! So now we have one less vial than we were supposed to and it’s making me feel increasingly uneasy.

This is new territory for us. We always had at least one or two unopened vials before refilling prescription. We always had a bit of a cushion. We should be ok. If I’m doing my math correctly. If she doesn’t drop another vial. If she is more mindful about bolusing on time. If hormones semi-cooperate for the next couple of weeks.

If it looks like we will be running out before refill is available I’ll reach out to the Endo. I’m sure we will find a solution and make it work somehow. But in the meantime it’s making me very, very uneasy.

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.

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.

 

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

Diabetes Awareness Month: World Diabetes Day

November 14th is World Diabetes Day. Never in a million years did we think just a few years ago that we’d become members of this select and crappy club and become so invested in this cause. But here we are, and awareness we must raise. I decided that for today’s post I will do my honest version of “the good, the bad, and the ugly”. Except there is not much good about diabetes, and ugly does not fit all that well. So I’m tweaking it: The Lows (some of the worst moments and memories that diabetes brought to us), The Daily Grind (the day-to-day things we have to do and think about ever since T1D diagnosis), and The Gratitude (because regardless of how hard it gets we always have a lot to be thankful for).

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The Lows

~The night we came back from the hospital after initial diagnosis, looking at V’s desk, syringes and wipes spread all over it, insulin vial as a grim centerpiece. There was no escape form the reality of the fact that my baby had diabetes. The one and only time I cried about it…

~One beautiful and sunny Sunday morning shortly after diagnosis, holding sobbing V in my arms after saying no to ice-cream from the ice cream truck because we were on a strict meal plan then and did not yet know how to dose insulin for treats and unplanned foods. Comforting her, reassuring her that she will be able to have ice cream soon and that we will figure out, hugging her tightly, holding back my own tears…

~Hearing from V that her friend had to pick someone else to go to her birthday Disneyland trip with her because of diabetes. Understanding and agreeing it was the right decision and feeling heartbroken about it at the same time…

~Watching V vomit repeatedly due to stomach flu, not able to keep anything down. Pushing liquids and sugar, trying to keep BG from plummeting down, checking ketones, bracing to leave for the ER if things don’t start improving…

~Standing by V’s bed and watching her sleep. Wondering if she’d have a seizure any minute if BG of 29 does not start going up soon…

The Daily Grind

~Finger pricks, smell of insulin and wipes, beeping devices, lugging supplies everywhere…

~Doing complicated math, adjusting dosages, measuring foods, counting carbs…

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~This glimpse into decision-making that it takes to get things right…

~Interrupting whatever is going on to test, treat, adjust, regroup…

~Correcting misinformation and confronting ignorance. No, she won’t grow out of it. No, someone’s diabetes is not “really bad” because they have a pump. Yes, she can have sugar. Yes, she can eat that…

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~V having to explain to others her pump, her diabetes, her CGM, again and again and again…

~Waking up in the middle of the night to test, treat, correct, adjust. Getting up in the morning feeling exhausted and beat up…

~Spending hundreds and hundreds of dollars on insulin and supplies…

~This glimpse into an ordinary day in our life…

The Gratitude

~It’s not cancer, or some other horrible life-threatening illness. It could be worse and we don’t take offense at this comparison.  We got this. V can live well with diabetes…

~The technology. It’s made diabetes management so much easier and it continues to get better. But even if nothing else gets better, what we have now is awesome enough…

~The timing. It would have been so much harder if V was diagnosed when she was a toddler. Or not until adolescence, when acceptance and compliance can be so much harder…

~The people. Our family and friends, V’s school nurse, other T1D families, people in the diabetes online community. We’ve been surrounded by love and support from Day 1…

~The hope. One day, some day, perhaps V’s dream will come true…

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