Diabetes Blog Week Tuesday: The Cost of a Chronic Illness

Today’s prompt is: Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

For those of us living in the US, this is a hot, scary and depressing topic, especially considering current political climate and escalating insulin prices. Living with diabetes is expensive! In our family, we have three people living with chronic illness. We spend thousands every ear on medication, medical appointments and supplies. And we have good insurance! And don’t even get me started on the price of gluten-free food. I think I will save that rant for a separate post.

Once upon a time, before T1D and before we had kids, hubby and I tried a high-deductible plan. At that time we were pretty healthy, so we figured it was worth a shot. It was definitely a lot cheaper than a standard plan. Turned out that getting reimbursed for our upfront expenses took a really long time. They lost just about every claim we submitted. We eventually got our reimbursements, but knowing that we would have to front a significant amount of $ for even basic medical care really deterred us from seeing doctors. Thankfully nothing bad happened that year, but I clearly remember postponing appointments just so we would not have to deal with costs. How that we live with T1D and other chronic illnesses, I can’t imagine having to deal with a plan like this again. And yet, many people have to.

What advice do I have to share? Is moving an option? Somehow the rest of the developed world figured out how to provide affordable quality healthcare to their citizens.

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For those of us staying put, we need to organize and educate ourselves. First and foremost, do you understand the terms of your health insurance? How much is your monthly premium? Do you understand that the monthly premium does nothing except providing you with access to insurance, and that you are going to incur additional out-of-pocket costs? Do you know the difference between annual deductible and annual out of pocket maximum? What is your individual vs. family deductible? When does your deductible re-set? Do you know the difference between co-pay and co-insurance, and when you are charged one vs. the other? Are your medical supplies covered under pharmacy benefits or Durable Medical Equipment (DME)? What Rx is on the formulary and what meds won’t be covered? Do you have a separate deductible for your pharmacy benefits? Do you know who the in-network vs. out-of-network providers are? Do you know what procedures and equipment require pre-authorization? How often? How much is your ER copay?

Second, you need to advocate fiercely. Don’t take “no” for an answer. If you get a denial, appeal. Work with your doctors to document medical necessity. Learn the language, what to say, how to say it, and who to say it to, to get better results. Ask for help from your device reps – they often know how to get through the hurdles.

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Third, be strategic. We try to schedule medical appointments and supply orders strategically in the beginning of the year so that we can meet our family deductible spending the least amount of money possible. It worked well last year. This year it was a total fail. A similar strategy may work well toward the end of the year. If you met your deductible, and especially if you hit your annual out of pocket maximum for the year, stock up on those medications and supplies. Squeeze in that extra doctor’s appointment if you can/need to.

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Our little stockpile. Note the adorable doggie photobomb 🙂

Fourth, I’d tell you to be financially prepared and set some money aside for healthcare expenses. But I won’t tell you this. BECAUSE IF WE ALL HAD ENOUGH MONEY TO SET ASIDE TO PAY FOR OUR EXPENSIVE HEALTHCARE, MAYBE IT WOULD NOT BE SUCH AN ISSUE?! Yes, I just yelled. It makes my blood boil when some people insinuate that people with chronic health conditions don’t prioritize their healthcare expenses and instead spend money on stupid and unnecessary things. You know, like shiny new iPhones.

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Fifth, pride is stupid. If you need help, reach out. I belong to a vibrant and awesome group of local T1D families. At times people post on our Facebook page asking for a vial of insulin or some test strips to tide them over until their authorization goes through, or their insurance kicks in, or they get their paycheck. Other times people post giving away extras they no longer need. I’ve been on both giving and receiving end. Most T1D peeps will gladly help you out. I personally sleep a lot better at night knowing that if we are in a bind, I know who to ask for help.

Sixth, do your part in educating others about T1D and what it’s like to live with a “preexisting condition.” Help people understand the cost for someone with T1D just to stay alive. Your story and your voice matter. The better everyone can understand the human side of the cost of healthcare, the more we can achieve.

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Diabetes Blog Week Monday: Diabetes and the Unexpected

It’s time for 8th annual Diabetes Blog Week! Thank you Karen of BitterSweet Diabetes for putting this together.

I need this #DBlogWeek badly. I haven’t been blogging much lately. I’ve been overwhelmed by various things in my life and blogging/social media presence/diabetes advocacy has taken a backseat. I am hoping that this week will provide an injection of fresh motivation and inspiration.

Today’s prompt is: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

The best way to prepare for the unexpected is to expect it. Ideally, you become clairvoyant and can accurately anticipate all future problems. In reality, we all learn from our mistakes. The main lesson I learned (or rather am continuously learning ) from my mistakes is to not leave without any supplies that we cannot do without for more than an hour, no matter where we are going, how close to home we will be, etc. We always carry extra supplies with us, except when I get stupid and forget about this rule. Like that day when I took V to her Endo appointment and didn’t bring her diabetes backpack. And of course her insulin pump’s pod failed there. Thankfully they were able to hook us up with an extra pod and a vial of insulin, though for a few minutes they worried that they ran out of spare pods. Or the time when I took V to a traveling swim meet 2 hrs away from home and decided to leave her Zofran behind. Because why all of a sudden would she get a stomach virus? Of course, she was hit with the worst stomach virus I’ve ever seen, and we were stuck overnight in a hotel room in the middle of nowhere, with V violently vomiting several times per hour, hardly able to keep any liquids down.  And the battery in the ketone meter was dead! We narrowly avoided a trip to the ER, only because I was able to find batteries for the ketone meter in a store nearby and my husband was able to drive to us and bring Zofran.

Cue our last vacation. I wrote earlier about the hassle of packing all diabetes stuff, or “diacrap”, as Rick aptly suggested in his comment. I packed enough pods for daily changes. Of course, who would expect that a pod would fail every day? They are supposed to last at least 2-3 days. Nevertheless, I was not taking any chances. Sure enough, we had to change a few pods in rapid succession. One day involved two pod changes in 3 hours.

The truly unexpected part? One of the pods could not handle all of the vacation excitement and fell apart. Like, literally. It was quite amazing. These things are bomb proof. They are sturdy, waterproof, designed for all kinds of abuse, and if anyone ever tried to break one apart to see what’s inside, they will testify that it is not a simple tasks. And yet, while the bottom part was still attached to V’s arm via adhesive, this happened…
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What on Earth caused this? We have no idea. We are sending this pod back to Insulet for them to examine and figure out. Perhaps it could not handle the excitement of the FlowRider?

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And here is a close-up of what a broken pod looks like. You are welcome 🙂

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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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Gluten-Free Expo Review

Disclosure: The Gluten-Free Media Group provided me with a complimentary admission to Gluten-Free Expo. All opinions are my own.

Gluten-Free expo was amazing. So many different products to explore! I was quite familiar with some products and approached those vendors as a true fangirl. And there were many more that were either new to me or that I have not had a chance to sample in the past.

All the swag! All the vendors!

Without further ado, I present to you some of my favorites.

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Everything by BFree. Like, everything. Breads, bagels, pita bread (yes, GF pita bread exists), breadsticks – everything is so good! I’ve heard of the brand before but this was my first time sampling it. A+

 

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These things are like crack. Seriously, you can’t eat just one. Very tasty and make great appetizers/party food.

 

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So many yummy things by this company that was completely new to me. See that chocolate cake mix? Tried it. Tastes amazing.

 

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So Delicious is so delicious. Also so blurry, sorry. Why yogurt, you ask? Isn’t yogurt normally GF anyway? Well, yes. I loved this for my own selfish reason. In my early twenties I developed mild lactose tolerance. A few years ago it got worse. Thank goodness I can still have cheese and most processed dairy products, as well as just a little bit of milk/cream. But I had to say good bye to yogurts and ice cream altogether, because doubling over in pain is so not worth it. So Delicious makes yummy coconut milk based yogurts and ice-creams. Trust me, I tried many and it’s not that easy to pull it off.

 

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Using the swag I brought back, I assembled V’s lunch later that day: a sandwich with BFree bread roll, So Delicious yogurt, and sun butter.

 

The following day I decided to bring V along. It felt great to be able to tell her that she could eat everything. How often does that happen? Almost never.

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Some of V’s favorites were Sun Butter and Milton’s chips. Yum!

So it’s lovely when everything is GF and I could say yes to everything. Except that stupid diabetes thing that did not agree with all of the sampling V had. We tried to estimate carbs best we could but ended up severely underestimating.

 

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Oops! We fixed it, using mainly insulin. For bonus points tell me at what time we arrived to the Expo? How were you able to tell?

 

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V was excited to assemble her lunch for the following day, using some of her favorite products.

 

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Last but not least, we got to try Keli’s Sauces. Sweet N Sour sauce was hands-down favorite. Not only is it delicious, it’s also pretty low in carbs, at 5 g per 1 TBS. V dips everything into it. It’s taken an honorable place alongside ketchup and it’s a place hard-earned.

I can’t wait to go to the Expo next year and if I’m lucky I’ll make it to other Expos. I highly recommend you do the same. If you go, I have a pro tip for you: go hungry or else you won’t be able to get through even a fraction of samples. Also,  you may not need another meal that day. Or ever.

Giveaway Results!

I feel like Oprah. You get a ticket, and you get a ticket, EVERYONE GETS A TICKET!

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Image Credit: Giphy

Everyone who commented on my last post gets one free ticket to the Gluten Free Expo in San Diego! Please email me using the Contact tab and I’ll give you the code.

Missed the giveaway? I have a 20% off coupon for you!

1. Visi ticketing page: http://ow.ly/t0j7306YzeQ
2. Enter promotional code ADVANCE at the top & click apply
3. Select the ticket(s) you want and & click order now

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Gluten-Free Expo, At Last!

And I’m doing my first ever giveaway! Just keep reading 🙂

I’ve heard about various gluten-free expos. I’ve read other peoples’ experiences about attending. I was ware that there was at least one big expo right here were we live. I’ve been wanting to go for-freaking-ever, but something always came up. Not any more. Move over diabetes, I’m giving Celiac some well-deserved time in the spotlight.

Because really, sometimes Celiac is even more annoying than Diabetes. Yes, really. For example, V was going on a field trip to the ice-skating rink with her class a few weeks ago. Afterwards they were going to have pizza and snacks. My very first question was, could they get GF pizza for her? Because if they could not, V would have to bring her own lunch. Not fun. And traveling while maintaining a gluten-free diet can present another set of challenges. For starters, wherever we go, we have to stay in a place that has at least a fridge and microwave, so that we can either bring food with us or buy it at a store. Finding a restaurant with gluten-free options is not always possible, so we always have to be prepared to supply V’s food on our own.

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No trip to Target is complete without stocking up on some of our GF favorites

Random fun fact #1: when we find some gluten-free products on sale, we buy them up in ridiculous quantities. Like this:

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When our favorite GF bread is on sale…

 

Anyway, I’m really excited to finally attend a Gluten-Free expo here in San Diego on February 12-13. (Random fun fact #2: Gluten Free Media Group – the company that puts together the expos – is also the same company that’s behind Find Me Gluten Free app and website. This app is a life-saver for us when we are traveling and I’ve found amazing GF restaurants with its help.)

While I know of many GF products, there are many more that I’m not aware of, and I can’t wait to explore the wonderful GF world at the expo. I am going to be  on a particular lookout for products that are GF AND diabetes-friendly. I’m also hoping to discover more local restaurants, stores, and other businesses that cater to Celiac community. And perhaps I can learn something new about GF living.

Want to join me at the expo? I have….DRUMROLL….a GIVEAWAY!

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I have five tickets that are good for FREE admission to one day of the event (Saturday 2/11 or Sunday 2/12). Comment on this post by Saturday 1/14/17 telling me what your favorite gluten-free product is and why you love it so. I will select five people randomly on Sunday 1/15/17. 

 

 

Fully Loaded

The holidays are here and we are ready to eat all the things! Tomorrow we are having a Christmukah Eve potluck with our friends. Sunday we are having Christmas Day potluck with the same group of friends. Because why have one holiday meal if you can have two?

Last night we had company over for dinner, which gave us a good opportunity to do a dry run of holidays diabetes management. In line with how we handled Thanksgiving dinner last year, I decided to be aggressive with insulin and rely on Dexcom to monitor trends. I eyeballed the meal, overestimated the carb count, gave V a generous amount of insulin upfront, and spread out the other half of the dose over three hours. She wanted more dessert and we said yes, and gave more insulin. “Mom, do you realize I already have 11 units onboard?” “Yep. Give yourself more!”

All evening V’s BG stayed in the 130-180 range, which is fantastic. She gave herself some insulin before bed, which brought her into a nice low 100’s range for the duration of the night. It was a thing of beauty. This weekend’s goal: replicate this as closely as possible.

It was time to change V’s pod tonight. I was about to fill it with around 170 units of insulin, which normally lasts for 3 days with some extra to spare. Then I remembered about all the eating that will happen this weekend. For the very first time in three years of pumping, I loaded V’s pod with 200 units, filling it to the maximum capacity. Pod is fully loaded and we are ready!

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Wishing for good BG numbers this holiday weekend