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.

IMG_4400.JPG

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. 

IMG_2224

My really pathetic attempt at whipped cream art, created on one of V’s diaversaries. The message spells “T1D Sucks”. Because it does.

 

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.

IMG_4670

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.

cropped-fists-in-the-air-cropped-jpeg-9-29-15

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.

IMG_4669

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.

IMG_0903

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.

california-1