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.

 

Quiet before the sail

We leave on our big vacation in one week. First we fly across the country to spend a couple of days with family, then we board the cruise ship. This will be our second cruise with T1D. We know the drill. And yet I’m starting to lose my shit a little bit as we are preparing ALL the things.

V had her regular Endo appointment last month where we discussed cruise BG management strategies. Endo made suggestions re: some dosage adjustments. But her main recommendation for V was to remain active. Last cruise was 5 days long and she spent the majority of it running high. She felt it and it was not pleasant. We could let it go for 5 days, but this upcoming cruise is 9 days. Running high for 9 days straight is not going to work. We’ve been talking about being more reasonable with food, being even more aggressive with insulin, and about the added importance of moving around. We’ll have to take walks around the ship. There are other fun active things to do onboard and there are more choices than on our last cruise. And we’ll get off the ship a few times to go to beaches and snorkel. This time it has to be different.

Then there is so much stuff to pack. So.much.stuff. I generally love trip planning but packing all the  medical crap is the bane of my existence. We will be in the middle of nowhere for 9 days and I feel like there is no room for error. I’m making a list and checking it twice. The Insulet rep gave us a loaner PDM (pump’s remote) to take with us as a back up in case V’s fails. How many pods to bring? I’m thinking at least 10. No, I’ll feel more comfortable with 14. Two or three vials of insulin for the pump plus a vial of back-up long-acting insulin. Syringes, strips, meters… Do we have any unexpired ketone strips? Must check. Glucagon! How many? I’m thinking at least two? Because you never know and I do not want to take any chances. AAA batteries. Dexcom sensors and charger. Wipes galore. And so much more. I’m half-panicking that we will forget something important or not bring enough of it. Yes there is an infirmary on the ship. No I don’t want to rely on it for anything because I have no idea if they have anything we need. WHAT IF WE FORGET SOMETHING IMPORTANT?!?!?

OK, breathe. Breathe. We got this. Need to bring some snacks for air travel and shore excursions. Also need to pack gels and glucose tabs. At least there will be easy 24 hr access to food/juice. And there are plenty of gluten-free eats on the ship.

Trip insurance was purchased long ago. In fact, it was purchased within two weeks of booking the cruise so that we could get a waiver for pre-existing conditions. With three out of four in the family living with chronic health conditions, there is no way in hell we are going on a trip without trip insurance. Have to remember to print out insurance paperwork. Should probably print out a travel letter from Endo? Though we’ve never needed it before so maybe not…

And then there are other meds and equipment including a nebulizer (because F U asthma and you never know…) Have a duffle bag that will be dedicated to medical supplies. Bought more luggage tags. Need to put tags on V’s diabetes backpack and the duffle bag and clearly label them as medical supplies. Need to make sure all devices are properly labeled.

So.much.stuff.

We got this. I am going to overpack like we are going away for a month but I will leave knowing that we have everything V needs to have a fun and safe vacation. Soon we will be back on the high seas having a time of our lives. All this prep is worth it.

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A Letter of Hope

I am going to kick off November – Diabetes Awareness Month – with a letter of hope. It’s a brilliant idea of Maureen at Mumoftype1 to include these letters in hospital care packages for families of newly diagnosed T1 kids.

Dear family of a newly diagnosed child:

It’s undoubtedly a really hard time for you now. Your world has been turned upside down. You may be feeling scared, overwhelmed, sad, frustrated. You are probably bombarded with so much information and wondering how on earth you’ll be able to remember half of it, let alone be able to do all the things you need to do to take care of your child.

I remember this time so well. Like many other families, diabetes was the last thing on our mind and, in fact, we had no idea what Type 1 Diabetes was. I remember how, in the first days after diagnosis, I was wishing that we could fast-forward a year, to a point where we would not feel so overwhelmed, where we knew what we were doing and at peace with our new normal.

Now that we are more that three years in, I am going to tell you this: it will get better. I promise. It is a steep learning curve but before you know it, you will learn and do so much. You will become the boss of diabetes!

As much as you  can, embrace the hand you’ve been dealt. Dive in and learn. Ask questions, do your research. Learn together with your child. The more you understand about diabetes and its management, the more empowered and confident you will feel, and it will trickle down to your T1 child and the rest of the family. By now I feel like I’ve earned my honorary endocrinology degree and our daughter earned a title of a true diabadass. We have both skills and confidence to handle any situation diabetes can throw at us and it gives us a peace of mind and a feeling of pride and accomplishment.

Diabetes does not stop our daughter from doing what she loves. Be it sports, or playdates, or camps, or sleepovers, or traveling – she continues to do it all. You will learn how to make necessary adjustments, get the right kind of support and ask for appropriate accommodations. The question is not whether your child can do something with diabetes, but how it can be done. If there is one thing that I want to convey in this letter, is that you will learn how to work diabetes management around your life, not the other way around. It’s not always simple and there will be many hurdles to overcome, but I encourage you to start thinking about this right away. We don’t have a choice about having diabetes in our children’s lives, but we have a choice of how to deal with it and how to make the best of it. 

So, welcome to this crappy elite club. Did I mention that this club is full of amazing people? Please reach out to other T1 families in your community and online. Your local JDRF chapter is a good place to start. Our fellow d-peeps are an incredible source of support, encouragement, and wisdom. Our daughter also benefits immensely from having other T1 friends in her life.

Hang in there. Trust yourself and trust your child. T1 kids and families are strong and resilient. You got this. And all of us here got your back. You may not know us but we are in your corner. You are not alone!

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Sound of silence

V asked to take a little break from Dexcom. Just for a day or two, she said, and then we’d put it back on. It’s been two weeks and counting. Sometimes you don’t realize how much something affects you until it’s no longer there. This break is helping me realize that I have a major case of alarm fatigue.

These two weeks have been so much quieter. No more daily high and low alerts. No more waking up in the middle of the night to false alarms. No more buzzing and beeping in the middle of various activities. Mind you, there are plenty of other beeps that keep our senses stimulated. The “Beep Beeeeep, Beep Beeeeep” of the pod, one hour after we change it or a few hours before it expires.  Or the “Click Click Click Click Click STAB!” sound of cannula insertion. Or the “SCREEEEEEEAAAAAAACHHHHHHHHHH” song of its people the pod sang to us when it failed this morning. But those are far less frequent noises compared to the daily onslaught of Dexcom alarms.

There have been times here and there I really missed our “Deckie.” V was not feeling well for a couple of days last week and I wished I had the data to better fine-tune her basal rates.  There were a couple of nights we had to get up in the middle of the night and test, instead of being able to glance at V’s BG on our phones. There were several times it would have been so much more convenient to dose by Dexcom instead of having to test. And there were a couple of times I would have treated high BG a lot more aggressively had I had Dexcom trend data to inform me of how BG was responding.

Despite mentioning here and there that she wanted to put Dexcom back on, V does not seem eager about it, and we are not pushing. Truth is, we are enjoying the sound of silence. In the meantime, we are finding value in going back to basics, staying in tune with V’s body, letting go of micromanaging BG, and using our spidey-sense to make dosing decisions. Tonight V woke up, got out of bed and came downstairs to tell me she felt really low. Indeed, she was 44. Perhaps we would have caught it much earlier with Dexcom, but we caught it anyway, treated, and back to sleep she went. A few days ago, she was 56 after intense swim practice. It would have been so much easier if we could see her BG trend on Dexcom. But V asked me if she could wait it out a little and not treat because she felt OK and because her BG often tends to shoot up after practice. I agreed. Sure enough, 15 minutes later she was 65, and settled on a solid number in lower 100’s within an hour.

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No Dexom? No problem. She scores 100 anyway!

This break won’t last forever. V’s middle school sleepover is approaching in a few weeks and at that time wearing Dexcom will not be negotiable. We will take it one day at a time.  And maybe there is room for a compromise? We could turn off all alerts altogether and use Dexcom solely for trend data. Or we could change low alert from 75 to 55, and high alert from 225 to 350, in order to not miss more serious lows or highs. Or perhaps my alarm fatigue will be diminished so much that I will be ready to go back to our old settings and put up with the alerts in exchange for easier and more precise BG management.

This time will come soon enough. Today, I am letting go.

 

 

ROI = Awesome

Riding on Insulin unveiled their snowboard/ski camp schedule for 2016/2017 and it broke my heart a little. There is no longer a camp within an easy driving distance from us. The closest camp is a monster of an 8-plus hour drive, and that’s in ideal conditions. I don’t know what we will do. On one hand, of course we really want to go. On the other hand, we can’t justify two days of solid driving for one day of camp. And travel expenses plus lodging won’t be cheap either. But we really want to go! But we most likely won’t.

I was discussing this dilemma with my running friend during a recent long run. Oh yes, by the way, I signed up for my third half marathon. I’ll be running Revel Canyon City half on November 12th! So I am minding my miles and getting ready for it. And there is no better opportunity to talk through my dilemmas than on a long run with a good friend. I don’t always find solutions but more often than not I find clarity.

So as I was weighing the pros and cons of going, I had an epiphany of sorts. Why do I want V to go to ROI camp so badly? Surely we can find cheaper skiing lessons nearby. She’s good at managing diabetes and we can stay close by if she needs support. We can do it in a way that is fun and safe. But ROI is so much more than snowboarding/skiing lessons in a safe environment. To me it is all about the people. ROI volunteers are the people I want V to look up to. Not just because many of them are amazing athletes with Type 1 Diabetes. What I love most about ROI peeps is their passion for life, their determination and ability to live life to the fullest, their perseverance in the face of challenges, their desire to push themselves, and their infectious enthusiasm. That is a lot to love and that is the primary passion driving my own ROI fundraising.

Yesterday, 40 ROI volunteers competed in Ironman Wisconsin. 20 of them have Type 1 Diabetes; rest are family and friends. They raced their hearts out and I am so proud of them! They also fundraised their hearts out to grow the program and make camps more affordable and numerous.

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Thank you ROI volunteers for everything you do. Even though we may not be able to make it to camp this season, you are still giving all of us an example of how to live with T1D.

It is with renewed commitment that I carry on with my training and fundraising as a ROI Global Athlete. Please support my efforts by making a donation to RIO.

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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MasterLab 2016: The Lessons

Disclosure: Diabetes Hands Foundation provided me with a scholarship that paid for my flight, hotel, and registration to the MasterLab workshop. All opinions are mine.

I’ve been doing some thinking, some introspection. As I have shared before, I started this blog as an outlet for myself. Soon, I realized that by sharing our story I am also trying to make the world a friendlier place for my daughter and all other people with diabetes. But what lies beyond sharing our story? What diabetes-related issues do I want to focus on? What organizations do I want to support?

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I can advocate everywhere. I cannot advocate for everything.

In his opening remarks at MasterLab, Scott Johnson talked about paying attention to and feeding “your fire.” That message struck a cord. I want to advocate for something I am passionate about, something I truly believe in, something I can throw myself into without any reservations. I need to advocate where my heart is.

My heart is with #DiabetesAccessMatters. Having diabetes is hard enough. We don’t need constant battles to get access to and coverage for needed diabetes supplies. We don’t need insurance companies to play doctors and tell us what treatment is better for us. We don’t need to worry about being able to afford insulin which, for Type 1 diabetes, is literally a life-saving medication.

My heart is with diabetes tech. Sure, a cure would be nice and it will hopefully happen one day. In the meantime, diabetes tech is what continues to make  the biggest difference in easing diabetes burden, improving safety and effectiveness of diabetes management, and improving overall quality of life.

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I got to touch iLet!

My heart is with Riding on Insulin, and not only because they organize amazing adventure sports camps for T1 kids. ROI people are the kind of role models I want V to have in her life. I want her to be around T1’s who can show her via their actions that everything is possible and who will encourage her to follow through on her goals, challenge herself and live her life to the fullest. I am determined to continue my fundraising for ROI until I reach and surpass my goal.

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Proud to be RIO Global Athlete

My heart is with Camp Conrad Chinnock. Diabetes camp is such a special place for T1 kids. It’s a safe place where they can be totally free and where everyone “gets it”. I want to make camp work weekend a family tradition so that every year we can help get camp ready for summer. I may also fundraise for it in the future and participate in other volunteering events/functions. And while I am not officially fundraising for camp now, I have selected it as my charity via Amazon Smile.

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Having a blast at diabetes camp. Image credit: Camp Conrad Chinnock

My heart is with being a patient voice on behalf of my daughter. I want a seat at the table with health care providers, tech developers, policy makers, drug and device manufacturers, and other involved parties. We are all in it together and I want us to have a joint discussion on how to improve care, access and quality of life for all people with diabetes. I’m getting that seat at the table, literally, at the Diabetes Mine Innovation Summit in October. I am so honored to have been selected as one of the Patient Voices winners.

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Not long before I left for MasterLab, I created a new category for my blog: advocacy. Looks like it’s going to get quite a workout. Chaaaaaaaarge!