Tag Archives: diabetes

Universal truths.

Truth
I’ve been back on the workout bandwagon for a while now. I’m still finding some time to get on my spin bike at home, and I’ve been getting to the gym so I can run on the track instead of going outside when it’s 20 degrees.

But I’m no different from other People With Diabetes when it comes to working out and fears of hypoglycemia. To combat that, I don’t think of it as managing my diabetes as much as I think of it as managing my insulin. If I can manage my insulin properly, I can avoid the lowest of lows. It seems like I can’t avoid having any lows. I’m not that good at it. But remembering that I might need to tweak basal rates or bolus amounts due to workouts, and doing that properly, is really key. Just about everyone knows that.

Still, working out more often, and the worries of hypoglycemia, coupled with the fact that adding this to my schedule more often, well… it seems like there’s this double-edged sword: Volunteer for something that, in the past, has helped lead to serious hypos; or let the fear create inaction, which is never going to be something that will help me live a good, long life.

Add in knee surgery last year, and worries about how I would come back from that, plus the fact that I really hate how I look right now, and it just seems like a good excuse to either get going or sit right back down and have a drink.

While thinking of all this over the weekend, I came to the realization that there are actually some universal truths that apply to both management of our diabetes and working out. Remembering these truths has helped me embrace working out again, which I have not done for some time due to the reasons stated above.

It’s really hard to get started.
And the older you get, the harder it is to get started. The sooner you get over that, the better you will do. Trust yourself that you will, you can, get started again.

When you’re not on your game on a given day, you feel guilty.
Every day I’m not at the gym, I want to be at the gym. Which means if I don’t go, I feel bad for not going. After every day where I (try to) ignore my diabetes, I feel like I’ve done a disservice to myself and those who care about me. But we live with this disease all the time, right? We need a break (such as it is) once in a while. Which brings me to:

Yesterday is only a benchmark. The future is unwritten.
I’ve written variations of that line a number of times. This past week was when I first realized that it applies to working out as well as living with diabetes. Regardless of what yesterday tells us, there are many chapters left to life, provided we’re still game enough to author them.

Surprises can come at you pretty fast.
Since I started seriously working out again, I’ve had lows in the middle of the night that I didn’t expect, and I’ve had an injury to a toe that I was completely unaware of until my run was over. It helps me to keep in mind that the best planning includes planning for the unexpected. It’s gonna happen.

We are stronger over time than we seem to be an any one moment.
Our lives are not defined by one single day. At least I hope not. With diabetes or with working out, it’s easy to give up when the going gets tough, you’re worn out, and it’s so easy to just say I’m Done. When we don’t do that, well, that’s where champions are made. And People With Diabetes are better at not giving up than any other group of people I’ve ever known.

Maybe the real universal truth is that remaining active is actually part of managing our diabetes. That makes sense, but how often do we think of it that way? I know I don’t… or haven’t… until lately.

Have any other universal truths you’d like to add to the list?
 

8 Hidden costs of diabetes.

Everybody knows diabetes is expensive. We spend a lot of money on insulin, syringes, infusion sets, sensors, and more.
8
But there are a lot of hidden costs in diabetes. I found at least eight things that my doctor never told me about at diagnosis, and they cost me a lot.
 
 
1. Juice, candy, glucose tabs, and other “in case of lows” supplies.
About every other week, I head to the grocery store for some juice. I also need to make sure I don’t have a shortage of candy for those times when my refrigerator isn’t so close. Supplies in the bedroom in case of overnight lows, juice boxes and crackers in my desk drawer at work, hard candy in my truck. I’ve lost track of how much I’ve spent over the years on stuff like that.

2. Extra doctor visits.
Almost all of us visit our endocrinologist every 90 days or so. But what about all of those visits with our primary doc, even if it’s just when we’re “real people sick”? A podiatrist? An ophthalmologist? A dietician? A Certified Diabetes Educator? My insurance plan’s plan year is only a few months old, but I already have a stack of receipts for co-pays to the other healthcare professionals I see throughout the year. And while we’re at it:

3. Time.
Ever consider the time you spend on your diabetes? Just all those HCP visits take up a lot of time we’d like to spend on other pursuits. Add in blood sugar checks, set changes, and the myriad other tasks we perform on a regular basis, and I figure diabetes is gonna owe me a few extra years at the end. It’s a big, giant cost that bothers me more than I can tell you.

4. Education.
A lot of this is of my own doing, but honestly, I want to know more about diabetes, and more about advances in research and development on drugs, devices, and the mental cost of living with this disease. Often, that means spending money so I can get to where the information is being given. Of course, there is much to be learned via the internet, which is what I’m trying to do when I can’t get away to a conference. But a portion of my budget is now permanently earmarked for diabetes travel.

5. More time.
This is the good part of time spent on my diabetes. That includes spending Wednesday nights on Twitter, communing with my D-homies while doing the question and answer thing during #DSMA. When I’m lucky enough to see my diabetes friends in person, I love just being in the moment and soaking up all the goodness. Life ain’t all bad, right? But then there’s:

6. Extra costs for extra conditions.
Many of us living with diabetes get cursed a second or third time over with another condition like Celiac or high blood pressure or, in my case, an annoying skin condition that I’ve been told will also never go away. My extra isn’t anything that anyone needs to worry about, but it still comes with a cost, and even my dermatologist (another HCP cost) says it might be related to a compromised immune system. Thanks diabetes.

7. FItness.
I’m a believer in trying to stay as fit as I can. I don’t look like it, but I still exercise on a regular basis. Because it helps my body use insulin more efficiently, and because I feel better when I exercise. But it doesn’t come cheap. I will say this though: the cost for my road bike, for my spin bike, for workout wear and even my gym membership has been worth Every.Single.Penny.

8. Worries.
This could come under Time, or More Time, but let’s be honest. This deserves its own category. From fears of a future low, and fears of what a previous low has done to our brain cells, to fears of complications that come with years of diabetes unknowns, the cost of this chronic condition goes far beyond anything anyone should consider reasonable.
 
 
This list doesn’t include the money spent supporting my friends and the great causes they work tirelessly for. And it doesn’t count the money I spend on special things for The Great Spousal Unit because she indulges me by letting me write a blog and podcast and go to diabetes events, and oh yeah, she makes it easier sometimes when I’m dealing with a difficult low. No doubt this list could be a lot longer.

There you have it. Next time someone suggests that diabetes is as simple as take insulin and go on with your merry little life, remind them that diabetes comes with a lot of extra costs. And they’re not all covered by insurance.
 

Imperfections.

What is it about diabetes that just knocks us off our game now and then?

Nothing about diabetes is wonderful, unless you count the people you meet who are dealing with the same things, either by living with diabetes themselves, or living with someone who lives with diabetes. The rest of it pretty much sucks.

Still, sometimes we put on airs of “I’m a tough hombre” because we deal with everything this disease throws at us, and yet we get through it… we’re strong enough to suffer the slings and arrows that diabetes sends in our direction, and often we emerge from the battle stronger than ever. How many people with completely healthy bodies do you know who can put up with what we put up with on a regular basis?

I can’t say that’s how I was feeling the other night when I went to bed. But it had been a long time since I’d experienced an overnight low, and nothing about that Thursday night was any different from a thousand Thursday nights before it.

Insert diabetes… begin chaos.

I woke up around 1:30 a.m., feeling sweaty, and a little irritable. If I’m sweaty at this point, it means my blood glucose level has already sunk pretty low. Normally, when this happens, I just need to get up, go downstairs, get the juice from the fridge… I’m good. This night, I didn’t, couldn’t, get to the fridge. Instead, I sucked down a juice box sitting next to the bed. Then another. Then a package of peanut butter crackers. Then some candy. Then some peanut butter. Another juice box. In all, it took around half an hour for me to actually feel like myself again. Like I could even stop to check my BG. Prior to that, it was all about feeling well enough to remain upright.

Therein lies the problem with feeling like you’ve nearly nailed your management of diabetes. You get surprised when you least expect it. It’s also the point where a lot of People With Diabetes feel a lot of guilt. I was a little guilty in this instance. I had a snack that evening that I probably over-bolused for. It happens. It happened Thursday night. But unless I make a habit of it, I’m not going to feel bad about it. That kind of thing doesn’t work for me. And while I don’t want to tell you what to do, I think you should consider what I’m saying here.

This might sound a bit harsh, but when it comes to diabetes, guilt is for suckers.

It’s not that we’re perfect… no way are we perfect. But what’s done is done, and feeling any guilt about anything that happens to you because of a disease that you did nothing to contract is like blaming your parents for your eyes being brown. Sure, your parents had a lot to do with it, but your eyes are still brown. After the moment passes, we still have diabetes.

So Friday came, I went to work (tired and hungover and a little afraid of my next bolus), and I continued living. That’s the final victory.

If you want, think of it this way: our imperfections are only a trivial botched play in the middle of an otherwise victorious game. If we live, we win. I want to improve my game so I’ll be successful more often. But I’m also going to realize that sometimes, a botched play is going to happen anyway, and the best way to deal with a botched play is to make it trivial by making the rest of the game spectacular.

I’d rather concentrate on the spectacular.
 

Not a schmuck.

SpareARoseBanner

Today, I finally got around to making my donation to this year’s Spare a Rose, Save a Child campaign.

I consider myself very fortunate, because sometimes I have a few dollars to spare to donate to worthy diabetes-related causes. More importantly, even if it were a real stretch, I would still want to find a way to give to Spare A Rose.

That’s not because it’s visible right now, it’s not because it’s the flavor of the month, it’s not because people I know and like are involved.

It’s because Spare a Rose, Save a Child saves lives.

The bad news: Children diagnosed with or living with diabetes in a developing country can die without access to the insulin, meters, test strips and more that are part of my simple, everyday management of this chronic illness. Why should those kids be left out? Why should they be denied the very things that will keep them alive?

The good news: I can do something about it. I can’t get CGM approval for Medicare patients approved all by myself. I can’t keep companies from marketing cinnamon/okra/yogurt treatments or “diabetic socks” all by myself. I can’t cure this stupid condition all by myself. But I can, all by myself, make a contribution that will make a measurable difference in the life of a child who could die without my intervention.

That’s pretty powerful stuff.

It’s a simple idea. The cost of one rose on Valentine’s Day? That’s about the cost of one month’s worth of life-giving insulin for a child living in a developing country. The International Diabetes Federation’s Life for a Child Programme has boots on the ground in those countries, saving lives where they otherwise would be lost. Partnering for Diabetes Change helps gather donations through the Spare a Rose, Save a Child campaign and get them to the IDF.

Look at the next child you see. Imagine that child not having access to the insulin they need to life the life they deserve. Then imagine what you can do about it. I’ll bet you can come up with something.

Giving to Spare a Rose, Save a Child means I’m more than just a schmuck with a blog. It means I’m a schmuck with a blog who’s a life saver too. Not the butterscotch kind, though those are pretty good. Think of yourself as the kind of person who saves lives. Then go do it. Give, so children can live.

CLICK HERE or on the banner above to donate to Spare a Rose, Save a Child.
 

I need to write a letter.

A little noise came about earlier in the week when people noticed that the stock price of Eli Lilly & Company, a large producer of insulin, had slipped six percent in a single day due to concerns that complaints of price gouging could ultimately hurt their bottom line. According to the Nasdaq report, the price of Humalog increased 10% just in the past quarter alone.

A lot of people focused on a quote from Lilly’s CEO, John Lechleiter, who, in the company’s quarterly conference call, when asked about the big increase in the price of Humalog, said that while the treatment is costly, the disease itself is a “lot more expensive.” Well, thanks a lot for that. Part of why it is expensive is because of Humalog. I think that’s what he was saying there, right? The disease itself is a “lot more expensive”, so the price of Humalog shouldn’t be a concern then, m’kay?

But it was a similar comment on the call from Jan Lundberg, Ph.D., Executive Vice President of Science and Technology, and President of Lilly Research Laboratories, that made me cringe the most. He was asked by an analyst about the “drug pricing debate”, the upcoming elections in the USA this November, how he had mentioned earlier that the industry was beginning to defend itself regarding pricing, and how he sees it all playing out over the next few years. Here is part of his response:
 
 
“In terms of what we can expect after the election, anybody that thinks they can predict the nominations, much less the election right now, I would love to talk to them. But I think this is going to continue to be an issue, or it’s going to continue to be on the radar screen because of demographics. And to some extent, as people get older, they are going to be more and more reliant on our medicines. I think we’ve got to continue to demonstrate that there’s value in the medicines we bring. Yes, they can be expensive, but disease is a lot more expensive. And emphasize the fact that low-cost generics, which account for over four out of five prescriptions today, represent ultimately the legacy of these investment efforts on our part, and provide the American consumer with tremendous value. So I think you can assume the industry is going to continue to maintain an active dialogue with each of the candidates, and to work across party lines to make sure that the views that ultimately translate into policy — and that’s what we’ve really got to be focused on — remain balanced and factual over time.”
 
 
Last time I checked, there were still no generic insulins available on the market, nearly 100 years after the discovery and implementation of insulin as a means to keep People With Diabetes alive.

Just trying to remain balanced and factual here, folks.

So, that really bothers me… the clearly false dialogue that it’s okay to overcharge patients for drugs they cannot do without, because there will eventually be generics available, which there won’t. Ever, without a fundamental change in policy at the governmental level. For heaven’s sake, Humalog was approved for use in the USA nearly 20 years ago.

That’s the frustration. What can I do about it?

I don’t know if there’s much I can do about it at all. But I know what will make me feel better. I need to write a letter.

I say a letter because on the Eli Lilly website, there is not one single e-mail address available. But they did publish the address of the home office in Indianapolis.

Do you want to write a letter too? Does this comment bother you enough to voice your concern?

Address it to:
Jan Lundberg
Lilly Corporate Center
Indianapolis, Indiana 46285 USA

Use your words. Tell your story. Be fair. Be kind. Above all, speak from the heart.

I will be putting together my own message, which I’ll share once it’s sent. I don’t know if it will do any good, but I know it will make me feel better. And it can’t hurt.

It should be noted that Eli Lilly & Company provides a lot of insulin to the IDF’s Life for a Child Programme, which also is helped through donations to Spare a Rose, Save a Child. So we’re on the same team there. Lilly helps provide assistance for people having trouble meeting the cost of their medicines. All initiatives that deserve praise.

They also have an executive who made a disingenuous comment on their most recent quarterly conference call, and that should be noted as well.