Diabetes Blog Week: The Blame Game.

Diabetes Blog Week is just like it sounds… diabetes bloggers all over the world, blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up, CLICK HERE.

This is my 6th year participating in Diabetes Blog Week. The week is rolling along pretty fast! Today: Step up everyone, and get ready for The Blame Game.

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!  (Thank you, Brian, for inspiring this topic.)

First of all… In case you haven’t read my post from last week, I’ll let you click on this link to find out how terrific my endocrinologist is.

I’ve got a fantastic endo. But the two that I had worked with prior to this one definitely fall into the judgement and authoritarian figure categories. One was female, one was male. Both were awful.

I remember one of my previous endos, who would make me wait in the waiting room for an hour and a half, then have me spend 20 minutes with medical students who knew next to nothing about diabetes. After that, I would get about two minutes with her, just enough time to get new prescriptions written. When that happens, there is no time for deep conversations or questions and answers. How can you learn anything about your patients this way? I would always walk away from those appointments feeling like I didn’t matter, and my A1c results reflected that.

Another endocrinologist got red faced when I questioned why he doubled the dosage of my high blood pressure medication without doing a check of, you know, my blood pressure. I told him my primary doctor thought doubling my dosage was dangerous, because I had been in a good range up to that point on the dosage I was at. He looked me in the eye and said, “I am the doctor. Your job is to do what I tell you to do!”. Yeah, no.

I think I would actually enjoy turning those two into puppets, and completely changing their demeanor toward their other patients.

I would love to turn the grumpy my-way-or-the-highway doctor into Big Bird from Sesame Street (Big Bird is sort of a puppet, right?). Regardless of my questions, Dr. Big Bird could help calm me down and be understanding when I’m not so sure about my next steps. Just what we need sometimes.

It would be really cool if I could turn my overscheduled endo into Bert, of Bert and Ernie fame. Bert is always organized, and he prefers to know about who he interacts with, rather than just letting Ernie handle everything. A time and a place for everything for Bert. The more time he makes for others, the happier the story ends.

Truthfully, I don’t usually bandy words about with doctors who don’t get it. My time is too valuable. In the case of those other two endocrinologists, I let my feet do the talking. But…

Wouldn’t it be great if we could just change bad care behavior by turning a doctor into a beloved puppet?

Diabetes Blog Week: The Cost of a Chronic Illness.

Diabetes Blog Week is just like it sounds… diabetes bloggers all over the world, blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up, CLICK HERE.

This is my 6th year participating in Diabetes Blog Week. I am happy and honored to participate again. Today’s topic: The Cost of a Chronic Illness.

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?  (This topic was inspired by suggestions from Rick and Jen)

To be sure, cost is a factor when it comes to living with diabetes. As I’ve noted before, I’m one of the really lucky people who has a good job that comes with a good insurance plan. I have access to an insulin pump, insulin to put in it, and a continuous glucose monitor.

And I still spend about $3,000 out of pocket for drugs, infusion sets, reservoirs, doctor co-pays, and countless other diabetes-related items every single year.

That’s enough money to take a really nice week-long trip to Europe. It’s money that could have been spent on my nieces or nephews. Money that could have helped fund even more research toward a cure for diabetes.

And I’m one of the lucky ones. Others in the United States don’t have access to even good food, let alone good tools to help them take care of their diabetes. That’s because so many in this country have the power to withhold that right from our citizens, and are comfortable with doing so. They equate health with worthiness. There’s a special place in hell reserved for people who are comfortable with doing that.

That said, I’ve now spoken with at least two people living outside the USA, who have helped me understand that their health care systems aren’t exactly fantastic either. Either coverage is spotty around the country, or there is a sizeable tax supporting the universal health care they enjoy. The one thing they do enjoy is the right to a certain amount of basic medical care. The one thing we’re in danger of losing in the USA is the right to a certain amount of basic medical care.

What I’ve learned is this: there are still people struggling to afford the basic needs of living with diabetes. And there’s still a lot of education needed to get everyone to the point where they understand that taking care of everyone helps to make their country better, wherever they live.

I fear the cost of living with diabetes will only continue to grow. For the people and companies benefitting from rising prices, there’s no reason to shrink the cost.

Our ability to convey the compelling, absolute, time sensitive necessity of caring for everyone living with every type of diabetes, regardless of what our insurance policies or bank statements look like, wherever we live, could make a life and death difference for millions over the coming decade.

That kind of message is worth the cost.

Diabetes Blog Week: Diabetes and the Unexpected.

Welcome to Diabetes Blog Week 2017! Diabetes Blog Week is just like it sounds… diabetes bloggers all over the world, blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up, CLICK HERE.

This is my 6th year participating in Diabetes Blog Week, and I’m probably the least prepared this year that I have ever been. Chalk it up to a crazy work schedule and even crazier things happening at home. But, hey, everyone deals with that kind of stuff. No excuses… I love Diabetes Blog Week! Let’s get this party started with our first topic:

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? (Thank you, Heather, for inspiring this topic!)

I have to confess that I’m not really very good when it comes to the unexpected. Oh, I think I’m really good at handling diabetes curveballs (an American baseball reference) in the long run, but when those unexpected happenings happen? I freak out. I overreact.

I’ll just pause for a moment while you get over your shock…

I know, I don’t usually seem to be the kind of person who gets upset over something. And it’s true, I try to be Mr. Even Keel most of the time, and let’s face it, this blog is named Happy Medium for a reason. But when something unexpected happens diabetes-wise, I’ve been known to react in a less than rational manner.

I’m no psychologist, but I think that’s kind of a coping mechanism. Because once I get over the shock, and scream about it (and even pout a little), I get down to the business of solving my problem.

And how do I do that? I usually start by thinking about what is absolutely necessary. Do I have insulin? Do I have a way to get it into my body so I can survive? As long as the answer to those two questions is yes, I know I’ll be all right for a while.

Then I move on to the specific problem at hand. Dexcom receiver not working? A few months ago, I was perfectly okay with that. I am still here, and I’ll likely be here until a new one arrives. Let’s call the company and get the new receiver here as soon as possible.Side note: this actually happened a few weeks back.

Unexpected lows two nights in a row? Very frustrating, but guess what? I survived. Now I know to be careful before I go to bed, and make sure I set the Dexcom alerts to the loudest setting possible, just in case I need to be woken in the middle of a deep slumber. Side note: this happened a couple of times in the past year.

There’s also something else I do. The Great Spousal Unit has made a point of discussing these scenarios after they occur, and discussing either possible solutions or possible ways to handle them to make them less stressful. This helps keep these situations in perspective for me, and helps us both work through these situations so we both know what to expect, and we both know how to handle them the best way possible.

Let’s face it… if you live with diabetes, expect the unexpected. But just like living with diabetes, everyone has a different way to handle the unexpected. And that’s okay. Find what works best for you. Talk to others to find out if they have found successful ways to deal with the same scenarios. And most of all, don’t blame yourself. If you have trouble with that, it’s understandable. That’s the time when friends and family can help.

The unexpected will happen. You are not alone. Make sure the most critical things are accounted for. And you will figure out the rest.

I admit it… I’ve got a great endocrinologist.

I like my endocrinologist. There, I said it.

Endos are sometimes a source of dread, or frustration, and some people wind up having to explain a lot about newer technology or drug developments to theirs because, let’s face it, diabetes changes sometimes move faster than their doctor.

But I don’t experience any of that. My last appointment a couple of weeks ago included the typical A1c, and a little blood work. Cholesterol, kidney function, that kind of thing. Vital signs, download of the pump data. Everything checked out okay, though I’m carrying around slightly more calcium than I should be. Who knew you could have too much?

We spent the rest of the time talking about a clinical trial I’m considering, about insulin pricing, and about a recent NBC Nightly News story on a family that peruses Facebook groups to find insulin their child needs, trading insulin their family’s insurance covers but their child is allergic to (“I wish some of my patients would ask about freebies… I have lots of samples!”).

Yes, she told me that she wished more of her patients would ask about insulin samples, if that’s what we’re even calling them now. Funny, I didn’t think to ask why she doesn’t suggest freebies for her patients. I’ll put that on the list to ask her next time.

We talked about starting on my Dexcom, since I was only about two weeks in when I saw her the last time. I told her, honestly, that wearing it on my arm has made it seem far less intrusive than if it were in my midsection. Which, by the way, is part of my trepidation of doing this clinical trial, because I’d be required to attach both the pump and the CGM around the middle of my body for the duration of the study.

I also mentioned that the CGM has given me real confidence that my basal rates are still very good, because once my trend graph lands in a good place, it tends to stay there for hours at a time. “But you’re going to let me know if you start training for something again, right? I remember that’s when you’ve had real trouble in the past”.

She knows me well.

We also talked about Dexcom Share. I don’t have an Apple phone, or a Pebble watch, and I’m not sure if the G5 is compatible with that anymore. We don’t agree on everything. But I trust her judgement enough that when she suggests something, even if I have questions, there’s a pretty good chance I’m going to do it and do it with gusto, because I trust her judgement that much.

Working with a medical team you can trust means a lot. The give and take between patient and doctor is a relationship that requires a fair amount of nurturing. And it’s changed over the two and a half decades I’ve been living with Type 1 diabetes.

But when it works out, the end result is terrific. It happens when both sides of the conversation engage freely and openly. It’s really great being with People With Diabetes, because they just get it. I consider myself quite lucky because I have an endo who gets it too. If you can’t talk about diabetes with another PWD, or your endocrinologist, who can you talk about it with?

I feel like I’m healthier, and making better, more well informed decisions than I’ve made under any other medical care team, endocrinologist or not. Finding people who help you with your diabetes and your diabetes knowledge are worth the effort. YOU are worth the effort. And I support you… no conditions.

What good is new technology if you can’t pay for it?

My great nephew celebrated his second birthday this past weekend. I celebrated another day on the blood sugar roller coaster.

It was a busy day. Maureen’s sister and two of her children had been visiting for a few days, and they left Saturday morning for the trip back to Ohio. So we were up at 6:00 a.m. to see them off. Maureen also had to pack and leave for a few days taking care of some pets in another part of town. Add in another event on the other side of town prior to the birthday party.

I don’t know if it was the choreography of putting the day together, or my eat-whatever-you-can-whenever-you-can-eat-it dietary selections, but I was sitting over 200 mg/dL for hours. The correction doses of insulin I had been giving myself were finally paying off around 4:30 in the afternoon as I headed off to the birthday party.

My glucose level was coming down, though not fast enough to cause alarm. I was at 109 mg/dL when I arrived. I added a pre-bolus for dinner, and thought I was set.

But as luck would have it, I didn’t time dinner perfectly. It was a little later than I thought it would be, and as we finally sat down to eat, my eyes glazed over and I got that “Stop Talking and Eat!” look from Maureen.

Everything righted itself eventually, but I’ve had a couple of days like that back-to-back now. It shows me that I’m good with my diabetes management, but I’m not perfect. That’s usually a good time to remember that there are tools and technological advancements on the way that promise to help reduce the burden of days like this. In the case of artificial pancreas research, Someday is a lot closer than ever before.

Then, almost in an instant, the next thought popped into my head: But… what good is a great new device if you can’t pay for it?

The U.S. House of Representatives passed their version of “repeal and replace” health care legislation on Thursday. What was already expensive could get prohibitively expensive should the Senate follow suit. We know there are already people using Facebook groups to try and get the insulin they need. Test strips are $1.00 or more per strip, which adds up fast. The retail cost of a new insulin pump is thousands of dollars.

For people who desperately need insurance to help defray some of these costs, purchasing insurance through a high risk pool that costs more (someone my age living with diabetes might have to pay $20,000 or more per year) creates an impossible dilemma.

There are 14 doctors and nurses serving right now in the House, and 3 doctors serving in the Senate. In the House vote, 10 of 14 voted for this legislation. Do No Harm, my ass.

From govtrack.us

Managing diabetes was already expensive before Obamacare. It was still expensive under Obamacare. It will be prohibitively expensive under this new legislation. The House of Representatives, at least, are exacting an impossible price on Americans simply because they hate the previous president.

But I’m not giving up without a fight. And I will remember at the ballot box. I’m going to call and send e-mails consistently, even after this fight is over. If I’m going to have to manage my diabetes every day while protections for myself and my loved ones are being taken away, only because they’re expensive, I’m not going to let them rest. I will make their victory a difficult one. I will make their victory unworth the price they have to pay to get it. What about you?

Let Congress know that you’re not going down without a fight. And if they try again, you’ll fight again.

CLICK HERE to download the DPAC app. With the DPAC app, you can get timely alerts, contact elected officials without going to a website, and insert your own diabetes voice into the conversation faster and easier than ever before.

THIS PAGE has every member of the House of Representatives listed, links to their websites, and most importantly, their phone numbers.

THIS PAGE lists contact information for every member of the U.S. Senate.

Please call!

%d bloggers like this: