Diabetes Blog Week Wednesday: The Blame Game

Today’s Prompts is: Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!

I’m pleased to say that we are very fortunate. We have a fantastic healthcare team and are surrounded by supportive friends, family and local T1D community. The only one really bad experience we had was at the water park last summer, when V was rudely confronted by a stranger who felt she was cutting the line and, since she did not look sick, did not have any reasons to have a disability pass. I wrote about it in detail in this post.  To be honest, I really don’t feel like revisiting it. When someone passes judgment inadvertently because of misinformation, but without an intent to be hurtful, I am more than happy to have a discussion. But there is no reasoning with a jerk and, aside from standing up to them, I’m not going to waste my time and energy with someone who has no desire to be supportive.

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I can, however, offer a few advanced tips to those who have to deal with us, crazy D-parents and our T1D offspring.

-Instead of asking “How is V’s diabetes?”,  ask “How is V doing with her diabetes?” When asked the former, my knew-jerk response is “Eh, it’s still there.” But even if I’m not trying to be a wiseass (hard to believe, I know), I don’t know how to answer this question. When you ask me how V is doing, I can give you an honest and specific answer. Often it’s “She has good days and bad days.” But sometimes I can share that we’ve hit a sweet spot and things have been relatively uneventful. Or that V is really struggling at the moment.

-Please don’t tell us that you “could never do it” – give shots, or count carbs, or poke fingers multiple times. If you life depended on it you would. Instead, you can say “All this sounds painful and scary and overwhelming.” And personally I take zero offense if you say that you are grateful your kids are healthy and don’t have to deal with any of this crap. No, seriously – feeling bad for us does not preclude you from feeling grateful that you don’t have to go through what we are going through. Trust me, we would not wish it on anyone.

-When V tells you she hates immunization shots, please don’t say in a very surprised tone “But shouldn’t you be used to shots by now?” First of all, have you seen a diabetes syringe? The needle is tiny and the shots are usually painless or sting just a bit. Now, compare it to a needle that is used for immunization shots. It’s a monster in comparison. Secondly, pump and CGM insertions involve needles too. They may not always be visible but they are bigger and they hurt. So the last thing V needs in her life is another shot. You can say just that.

-Last but not least, when you hear about another “breakthrough” or exciting discovery/tech development in the news, please curb your enthusiasm.

 

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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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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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