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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MasterLab 2016: The People

 

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I am traveling home after a full day of MasterLab in Orlando – a diabetes advocacy workshop put together by Diabetes Hands Foundation. I spent a day flying across country to spend 8 hours in workshop and then turn around and travel another day to come back, and it was worth it. I will write a little later about what I learned. Today it’s all about people.

I love my d-peeps of all types. None of us asked to join this elite crappy club but somehow we beat some serious odds and got in. Turns out it’s a club filled with incredible and awesome people. Maybe it’s the diabetes that makes them awesome? Or maybe you have to be awesome in the first place to get into the club?

Diabetes creates an instant bond and a feeling of trust between people. By the virtue of being in this elite club we have a lot in common, we speak the same language, we share similar stories. I knew some of the people from DOC (Diabetes Online Community); others were perfect strangers. I finally got to meet them in person and it was fabulous.

I loved talking to adult T1s and learning about their journey with diabetes. A few of them shared how, at the time of their diagnoses in the 70s, they were told that they would not live past 40 years old. Let that sink in. Imagine what it’s like to hear it from the doctors when you are a child, a teen or a young adult. Imagine what it’s like as a parent to have a doctor tell you that your child has 20-30 years to live, tops. And that they would die slowly from awful and painful diabetes complications.

Fortunately, treatment of Type 1 Diabetes has come a really long way. These people who were not supposed to live past 40 are living healthy, productive, active lives. And when V was diagnosed three years ago, the only message that we received was that it was going to be OK, that diabetes was manageable and that V would be able to live a normal, healthy, happy life. We never considered any other alternatives. I am so grateful for that.

It was also interesting to learn that most, if not all, PWD (persons with diabetes) I spoke with don’t care about the cure but are very excited about new treatments and technologies. There is a shared acceptance that the cure is far, far away but better treatments and technologies are here and they are making diabetes management easier, safer and more effective.

I am thankful for the opportunity to hang out with d-peeps. There is nothing like sitting down over a few drinks and having an honest talk about life with diabetes. I got to hear a few diabetes war stories too – some shocking, some funny, some a little scary. One person was concerned that she was scaring me off with all the information she and others were sharing. On the contrary! Being surrounded by people sharing their real-life experiences gives me hope for V’s future. We cannot protect V from the reality of life with diabetes, but by understanding it better we can give her the tools to do well. There I sat, surrounded by vibrant, resilient people, who surely had their ups and downs and made many mistakes along the way. Their diabetes management was not perfect and perhaps at times it was downright awful, but they found ways to live well and thrive. That’s good enough for me. No, it’s better than good, it’s inspirational.

Thank you for allowing me to into your lives and giving me a glimpse of my daughter’s future. Her future is bright.

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Disclosure: I applied for and received a scholarship from Diabetes Hands Foundation that covered my flight, hotel, transportation and registration. All opinions are mine.

Riding on Inspiration

On Saturday, we left our kids on the mountain. They learned how to snowboard while hubs and I had lunch and went sledding, without a care in the world. Typically, an event like this would require one of us to stay with V, or at the very least be nearby and available to help at a moment’s notice with diabetes care. But this time both kids were in excellent hands, as they participated in a day camp ran by Riding on Insulin . At the end of the day we came back to camp base and had dinner with the entire group of campers, families, ROI staff and volunteers.

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What an awesome day it was! ROI staff and volunteers took care of a million logistics, provided expert coaching, assisted with diabetes care, supplied lunch, snacks and dinner (including gluten-free food!), and ensured that every camper was well cared-for and had a great time.

Ready to go!

Ready to go!

They are out there somewhere, falling a lot and having fun

They are out there somewhere, falling a lot and having fun

Of course there was the obvious: safety of leaving V in competent hands; giving her an opportunity to learn a new sport without worrying about diabetes; making new friends and bonding other Type 1 kids and adults. There was a bonus: siblings and friends were welcome to attend, so V’s brother participated as well.

And then there was inspiration. We spent a day around some real diabadasses and amazing Type 3s (friends and family members of Type 1s.) A few of them recently completed an Ironman. Imagine completing an Ironman with Type 1 diabetes! I can’t think of better role models for V – people who are healthy, athletic, happy, passionate and living life to the fullest.

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Thank you ROI! We can’t wait to participate in more events with this amazing organization.

He had me at cross-contamination…

As we arrived to the restaurant for our first breakfast aboard Disney Wonder cruise ship, I surveyed the buffet and asked for assistance. At Disney, they don’t mess around with food allergies. This became clear to us as soon as we boarded the day before, as the staff were very attentive, knowledgeable and helpful. I’ve heard from other people that gluten-free dining on Disney cruises was wonderful, and our first day was certainly great. But now we were confronted with the abundance of choices of a buffet. How do we safely navigate it? At once, they summoned the chef. I explained to him that my daughter needs gluten-free food, and could he please show us what items in the buffet were gluten-free.

“I can certainly show you gluten-free items in the buffet. However, with the buffet you always risk cross-contamination. If you tell me what she wants to eat, I’ll be happy to make it for her.”

Please excuse me while I pick up my jaw from the floor. In fact, I am getting a little verklempt. Talk amongst yourselves. I’ll give you a topic: gluten-free foods are neither healthier nor low-carb. Discuss.

After I recovered from the shock, I wanted to hug him. And after he told V that yes, in fact they DO have gluten-free doughnuts, I think she wanted to hug him too. It’s not often that you come across someone in the restaurant industry who really gets Celiac, someone who understands that cross-contamination IS a big deal and that no, you can’t just take the croutons off of the salad. Our love with Ralf, chef-extraordinaire, was at the first sight. Or perhaps at the first mention of cross-contamination.

Half-way into our breakfast, Ralf came back to check on V. We started talking about all things gluten-free. He asked V if there was anything particular she really wanted to eat, something that perhaps was hard to find or make. She mentioned lasagna. Ralf started to enthusiastically think out-loud about possible ways to make it happen. “You are having dinner in my restaurant tomorrow? I’ll see what I can do.”

The following day, he presented V with this masterpiece: Lasagna made from egg batter, cheese and bolognese sauce. It was to die for. And because it did not contain pasta, it was on a lower-carb side to boot.

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We ate breakfast at Ralf’s restaurant every single day. He came out to say hi to us, brought V more gluten-free doughnuts and treated her as a princess.

Meanwhile, I decide to check every single restaurant and cafe onboard. I was determined to find a place that did not accommodate a gluten-free diet. (Nor did I expect that every dining venue would be able to do so.) Alas, my mission was a total bust. Gluten-free pizza? Sure. We just have to make sure the chef is back from break to make it. (It appears that only head chefs are allowed to deal with food allergies.) Gluten-free sandwiches? Absolutely. Gluten-free desserts? We got plenty. The only thing that they did not seem to have was gluten-free cones for the soft-serve ice-cream. Or maybe they did not have them out on the deck for everyone? Since V was managing perfectly well without I did not bother to ask.

By the way, this is what happened when V asked for a tuna sandwich with fries and fruit for lunch one day:

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On our last night, Chef Ralf prepared a surprise dinner for V: coconut crusted chicken strips. It was finger-licking good. Trust me, I am generally no fan of coconut, but it was so amazing I’d gladly gobble up the entire plate if it were mine.

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It’s been two months since our cruise but our memories are still fresh and vivid. Thank you Disney Cruise Line for providing an amazing gluten-free dining experience. Thank you for taking food allergies seriously and educating and training staff to provide guests with safe and wonderful dining experience. And a special thank you to Chef Ralf who went above and beyond to make V’s experience extra special.

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The biggest lie I ever said about Type 1 diabetes…

Before I get to my post topic…

WELCOME TO DIABETES AWARENESS MONTH!

November is Diabetes Awareness Month, which means that the lull of October is over. I was purposefully lying low, gathering energy and post ideas, because I am going to spam you every.single.day. this month. Not every post will be deep and profound because this Mama ain’t got all the time and energy it takes, and not every post will be new or mine, for that matter. But there will be something every day, either here or on my Facebook and/or Twitter page, which I will dutifully cross-post everywhere.

Without further ado, let’s return to the topic of the biggest lie that came out of my mouth multiple times about Type 1 diabetes:

“V can eat everything she wants, she just needs insulin to cover the food.”

OK, technically it is not a lie. She can have carbs and sweets and pizza and whatever else. But she can’t have everything she wants every time she wants it and not pay the consequences. It is fair to say that I was in denial about it for the longest time but recent events drove the point home loud and clear, completely shuttering my denial bubble.

A couple of weeks ago we went on a 5-day cruise. We went from our active lifestyle of rigorously working out a minimum of 3-4 days a week and a fairly balanced diet, to 5 days or rest, relaxation, and decadent dining. If you’ve ever cruised before, you know they don’t starve you there. And they aim to please – the chefs were bending over backwards to accommodate V’s gluten-free dietary needs. We tried to be reasonable – after all, no one benefits from pigging out and stuffing their face for five days straight. But we were also on vacation, so we wanted to be more relaxed about it and let V be a normal kid on vacation who can have treats and ice cream and all kinds or yummy things. And we were also a lot more sedentary. Hanging out by a pool for a couple of hours does not substitute one our of intense swim team practice or two hours of BMX clinic.

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Very quickly V’s BG started to climb up. We tried to guess on the carbs the best we could, we followed CGM trends closely and adjusted dosages accordingly, we increased background insulin, all with minimal results. Even when we increased V’s background insulin to 200% and rage-bolused with abandon, at times shattering all previous pre-meal insulin dose records, we were barely making a dent.

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For a healthy human with a functioning pancreas none of this is a big deal. For a diabetic with a broken pancreas, this is an insurmountable challenge. With decreased activity and increased eating comes insulin resistance, so the usual amount of insulin becomes insufficient. The longer the BG stays high, and the higher it is, the harder it is to bring it into a normal range. We battled high BG for five days straight. On days when V ran around the ship with her friend and spent a couple of hours at the pool, BG was beginning to normalize for a few hours here and there. On days that were more chill, we were happy to get BG closer to 200 as opposed to 300. We had to get up in the middle of the night almost every single day to administer insulin correction.  Fortunately, V was feeling OK through all this, mostly unaffected by high BG. She felt a little more tired – surely partially because of running high all the time – and was napping a lot, which of course contributed to the vicious cycle of decreased activity leading to higher BG. Our frustration eventually turned into resignation and acceptance of it being a short-term situation, and a determination to do the best we can but not worry about it too much. If our cruise were to last longer, there is no way, NO WAY it would have been OK to continue with status quo.

Here it the truth: a person with diabetes cannot live a high-carb and low activity lifestyle and be well. Of course, this lifestyle is not good for anyone’s health and can lead to all sorts of problems. However, a person without diabetes can go on a relaxing vacation and indulge, and have no immediate consequences. A person without diabetes can eat poorly and be sedentary and not develop any health issues for years, or ever. A person with diabetes will feel the adverse health consequences pretty quickly and it will only get worse with time. It is a guarantee.

We went on a little vacation…

…and nothing bad happened!

OK, so maybe going away for 2 days does not even count for regular people. But for us, T1D and gluten-free people, going away for two days takes as much preparation as going away for two weeks. Besides, we were going up to the mountains, where they most likely do not have a 24-hr pharmacy and we can’t easily get our hands on any needed supplies. You never know what could happen, T1D has a sick sense of humor and you have to be prepared for everything to go wrong at the most inopportune time. And since I still have a little bit of residual trauma from not packing properly, I wanted to be extra careful.

I packed diabetes stuff first. I made my list, I checked it twice, I packed the box, I checked it, I had hubby check it, to make sure we did not forget anything important. So here you go: extra insulin, extra strips, syringes for just in case, extra pods, extra Dexcom sensor, a small food scale and amazing collapsible measuring cups (I love those things so, so much!), tape, extra wipes, extra fast-acting sugars, and Zofran in case a stomach flu or food poisoning strikes. I’m tired from just writing all this out.

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Pack ALL the supplies!

After diabetes is taken care of, comes the Celiac part. We always have to bring some food with us. Will we be able to find gluten-free groceries? Most likely yes, but we need to bring with us at least some basic necessities. I packed cereal, bread and GF granola bars. Then I got on Find Me Gluten Free website, researched restaurants in the area, and then called them when we were on our way to confirm that they indeed served gluten-free options.

To be honest with you, I hate going through all this prep. Packing sucks as is, but this takes it to the next level of suckage. It’s not hard but it is tedious, time-consuming, and rather exhausting. Spontaneity is a little scary when going on a trip. We have to have supplies. We can’t just stop at any restaurant to eat. So we learn to always be prepared and then we can be spontaneous within the confines or our limitations.

And that is exactly what happened once we hit the road. We had plenty of snacks if anyone got hungry. We picked out a few possible restaurants we could eat at but decided last minute where and when to dine out. We could comfortably say yes to all activities knowing that we had everything we needed. Sure,V had some highs and lows, but nothing was out of ordinary. There were no pod failures. Dexcom kept working despite pushing 2 weeks. All devices remained stuck to skin, thanks to extra tape we brought. All lows were easily treated with fast acting sugars we brought with us. And so we went hiking and exploring, dined out, made food at the condo, swam in the pool, chilled out, spent time with friends, took naps, and enjoyed a change of pace and scenery. And it was wonderful!

Enjoying gluten-free crepes

Enjoying gluten-free crepes

Hiking

Hiking

Our traveling adventures, or how NOT to pack for a trip with T1D

I took my kids on a first real trip since T1D diagnosis. We went to Disneyland last year but we drove there, only stayed for a couple of days, my husband came with us, and we were fairly close to home. This time I flew solo with kids to visit friends who live in a small town in a different state. This presented a first-time challenge of packing all of the diabetes supplies. Now, packing for T1D is like Noah’s Arc on steroids. You have to pack two of everything, and then some more, to be prepared for every contingency. And there’s lots of “everything”: meter, strips, lancets, pods, sensors, tape, various wipes, fast acting sugars. And there is a bunch of paperwork, just in case: a letter from the Endocrinologist, a list of all medications, notes from the pump and CGM regarding TSA screening and safety for X-rays. I made my list, I checked it twice, I packed. I felt very prepared.

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Going through TSA was fairly simple. Since the CGM could not go through the X-ray machine, we requested a visual inspection. I was a little concerned about how long the process would take, since we were also carrying enough sharps to poke every passenger on the plane 50 times, plus insulin and other liquids that would be too much of a pain to put in a zip lock baggie separately. I also prepped my daughter that she may need to go through a pat down. Imagine my surprise when it was I who got frisked by TSA. “We do not pat down children”, they said. Interestingly, I have heard of some other T1D kids getting pat-downs, so I do not know if there are different rules for international flights, or if TSA agents don’t always know what they are doing. Nonetheless, it only took a few extra minutes for us to get through security, they looked through our belongings but thankfully were not perplexed by anything. We were at the gate with plenty of time to spare and found a spot to finally eat our breakfast.

V opens her diabetes kit and asks: “Where is the poker [lancing device]?” Umm, what? We look, it’s not there. We go through her bag, it’s not there. We must have left it in her room in the morning. But hey, we packed double of everything, so I go to our back up supplies and pull out another lancing device. Whew. Crisis averted and I am feeling pretty smug about being so prepared. So smug that I snap a picture of the back-up supplies bag at the airport while we are waiting to board.

About a day into our travels I realize I should have packed a plastic container for sharps. Normally she disposes lancets in a small container that she carried in her bag, and we dump it out into a large container at home. And it just so happens that my friends do not happen to have a plastic container that would work. Besides, I would not want to leave it there, and would need to bring it back with us to dispose of all the sharps. I got lucky there. I happened to put some of our airplane snacks into a tupperware container, which I was able to re-purpose for a sharps container for the trip. Of course I could have made a trip to the store and purchased a suitable container, but still… OK, lesson learned and I am feeling less smug.

Moving along, things are going pretty well for a few days, and then it’s the night before going home. It is 10:15 PM and I see that V is down to 2 test strips in her kit. But hey, I brought more, so no worries. I reach into back-up supplies bag. I do not see the strips. How can it be? I packed them for sure! I was absolutely certain. I crossed it off the list. Maybe the box of strips fell out when I was getting something else out? I tear the room apart but alas, the strips are nowhere to be found. And we are in a small town. Almost everything is closed down. ALL the pharmacies are closed. The next 24-hr pharmacy is at least a 45-minute drive. O.M.G. Breathe. Do not panic. There must be a solution.

Somehow my reptilian brain kicks in with a memory that I saw diabetic supplies on the shelves of a CVS store, not exclusively behind the pharmacy counter. Hang on… You don’t need Rx for most diabetic supplies. It’s just ridiculously expensive without insurance coverage. So maybe, just maybe, if we find a store that is open, we can find something there. To my relief, the Walmart is open until midnight. I have never been happier about going to Walmart, which I generally prefer to avoid. But on that night, Walmart = love. My friend takes me there, and on the way mentions that she has a diabetic friend and, if nothing else works, she will call and wake her up and see if we can get strips from her. I’m deeply grateful but crossing fingers that we won’t have to use that option. I also ask my friend about where they would get their medication filled if they needed it in the middle of the night. Is there a pharmacy at the ER? And perhaps if I cannot find anything at Walmart I can go to the ER to have a heart attack and ask for some test strips on a side.

We get to Walmart, where indeed there is a diabetes supplies section. There is hope. I scan the shelves like a hungry vulture. I find several brands of test strips. The cheapest box is over $50. Who cares, I’m willing to pay whatever it costs. Except none of the brands are compatible with the two meters that we have. I scan the shelves again and spot a kit that includes a meter and 20 test strips. It’s not a brand we use or will use in the future, but it will do! And it’s under $20 to boot. I walk out with much needed supplies and without a heart attack. I get back to the house, test out the meter and the strips and everything works well. Breathe and eat chocolate ice cream. Crisis resolved.

Next time diabetes packing will be a two-person job. One of us will pack and the other one will check everything against the list. And maybe we will pack triple of everything, just in case.