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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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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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.

Alarms

The other day I was setting an alarm when I thought about how I have four of them on my phone. It got me thinking about their purpose and how I feel about them. Let’s take it from the bottom.

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3:00 PM: School Pick-up, Tuesday.

About a year ago I started working at a new office on Tuesdays. It’s a little farther from home and kids’ school, so I need to leave work promptly at 3 PM to pick up my two kids and two more kids from our carpool. One lovely Tuesday, shortly after my start at the new office and in the beginning of the school year, I lost track of time at work. I was plowing through tasks, felt accomplished and got a lot done. On my way out I stopped at a colleague’s office to say bye. “Aren’t you late, she asked?” “No, I’m exactly on time, it’s 3.” “Umm… No, it’s 4,” she said. I looked at her wall clock. “No way, it can’t be 4, you clock is wrong.” Then I looked at my phone. “OMG it is 4!” “What time do you have to pick up?” “3:45!!!”

To make a long story short, I made a few frantic phone calls and got someone else to pick up the kids. They were second to last to be picked up and they were not pleased, though a little amused. I was mortified. Ever since I have a recurring alarm at 3 PM on Tuesdays so that I am never ever late for school pick up again.

5:55 AM: STFU and Run!

This alarm is my favorite. A couple of years ago a friend of mine made a comment about how, when she was in the Marines, if they were too tired to run, they were told to do this nice and easy thing: STFU and run. The phrase instantly became my running motto, so much so that I had it written with a sharpie on my arm for the 2014 Marine Corps Marathon.

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Saturdays have been my sacred running days for a number of years now. Saturday mornings I get up and run. I usually meet my running group at 7 AM, but even if I’m running solo I still wake up early and get going. It’s rarely an easy task to get myself up on a Saturday morning, when my family is peacefully sleeping. But I’ve never regretted forcing myself out of bed and lacing up my running shoes. STFU and Run!

3:58 AM: Alarm

I have no idea what this alarm is about. Obviously I used it at some point. It may have been to test V’s BG, or it may have been for travel. I don’t know why I haven’t deleted it – I guess you never know when you can use another alarm, right?

At this point, you may be wondering why I’m writing about all these alarms in the blog about diabetes and Celiac. This brings us to the 2:00 AM alarm. In our family, we don’t do Midnight, Three and Six. In fact, we don’t routinely get up in the middle of the night to test V. When we do, we roll with Eleven, Two and Five. I usually test V before my bedtime at 11 PM. She may need a correction or a change in a temp basal rate. Sometimes we are battling highs or lows because of illness, change in activity, or what she had for dinner. If we determine that a middle-of-the-night check is needed, we set the alarm for 3 hours later, at 2 AM. My husband is up at 5 AM to get ready for work, so he can check on V then. I am usually up for the day at 7 AM for further follow-up. It works out quite nicely and we share the 2 AM duty so that we can take turns getting a night of uninterrupted sleep. We have it all worked out, and yet I hate this stupid 2 AM alarm, aptly named “Diabetes-related sleep disturbance.”

I hate the 2 AM wake-up. I hate that diabetes disturbs our sleep and our peace. I hate that I tend to wake up to it even if it’s not my turn to be up. I hate that my body is so accustomed to it that I tend to wake up at 2 AM even if we don’t have to set the alarm. I hate that diabetes, while manageable, is also so serious that there are times each week we need to be up in the middle of the night to make sure V’s numbers are in an acceptable range. I hate that sometimes us being up is not enough, as we have to also wake V if we need to treat her low BG. And I hate that at some point, sooner than later, we have to pass the torch to V. For now we completely take over her diabetes care at night. She sleeps soundly through all alarms and vast majority of finger pokes. As she gets older and becomes more responsible for her care, it will have to change. She will have to set her own alarm to wake up and test in the middle of the night, and we will have to step back and learn to trust that she will act responsibly.

I am also hopeful that, as diabetes technology continues to improve, more tools to improve nighttime safety and ease the burden of management will soon become available. It would be so great if no one has to set an alarm in the middle of the night to deal with diabetes. And it would be so great to delete the 2:00 AM alarm from my phone for good.

Like music to my ears.

“Hi Polina,
Dr. N reviewed the results of V’s labs and reports the following:
EMA IgA antibody is now entirely negative (was positive) and TTG IgA antibody continues to trend down and is close to normal (was 22, is now 14, with normal < 10) Indicating dietary adherence and mucosal healing. This is all very good news 🙂
Please let me know if you have any further questions or concerns.

Best,
RN J,
Gastroenterology Care Coordinator”

Everybody say HELL YEAH!

You probably have no idea what this means unless you are familiar with Celiac. These labs are part of regular Celiac panel, something that V has to do at least annually, sometimes every 6 months. You can read more about Celiac screening, including the labs she had, here. At the time of diagnosis almost two years ago, all numbers were through the roof. When V did the labs about 8 months ago, her results were still elevated but significantly decreased compared to when she was initially diagnosed. We were supposed to repeat labs a couple of months ago but it got delayed because V had a major glutening incident: she accidentally had a whole regular bagel. So we were instructed to wait at least 3 more months to re-test.

All this time I was a little concerned. Were we on the right track? I knew we were doing well with food at home, but were we careful enough about cross-contamination? We designated a special area in the kitchen for regular bread. We acquired separate toaster oven and George Forman grill for gluten-free prep. But what if that is not enough? What if, despite carefully selecting restaurants and foods, V is still getting exposed to gluten when we eat out?

Dr. N – V’s gastroenterologist – reassured us at our last appointment that complete healing can take up to two years, and that it was normal to not see negative results until then. She said that if the labs keep trending down, then all is good. If the numbers are not decreasing, then she will recommend we see a dietician, because “gluten-free diet is difficult.”

Say what? Cue Amy Winehouse. I don’t want to go to rehab… I mean dietician. No, no, no. I won’t go, go, go. Been there, done that. There’s nothing they can tell us that we don’t already know about gluten-free diet. No, gluten-free diet is not difficult. We got it. It’s not the foods that we are giving V that we are concerned about. It’s the other foods that we may not be adequately protecting her from that worry us.

We can breathe a huge sigh of relief now. V’s innards are obviously on the mend, we are doing things right, and we don’t need to go to a dietician.

Also, major props to Dr. N for choosing the word “adherence” over “compliance.”

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V is enjoying gluten-free pancake breakfast after successful lab draw for Celiac.