Tag Archives: chronic conditions

This is my diabetes.

March 21, 2018 – 10:11 am


This is my insulin pump. It is my lifeline of sorts, in that it allows a steady rate of insulin to be infused into my body throughout the day. Also, it lets me add extra insulin to cover the carbohydrates I eat, and to correct any high blood sugar numbers that might happen from time to time.

If you’ve never lived with diabetes… imagine this external device as part of your life 24 hours a day, seven days a week, forever. The only time it comes off is when you swim or take a shower. It can also add a level of concern about what might happen in the future, should something break, or should insurance stop covering some or all aspects of this therapy.

It will also be the subject of additional scrutiny from TSA agents when you go through security screening at the airport. As I’ve found out firsthand, that’s including when you go through the TSA Pre-Check line.

This is my diabetes.

Here’s a Dexcom Clarity report. It gives me valuable information on glucose trending for the past seven days. Among other things, it helps me to know if I need to consider changes to the basal rates on my insulin pump.

If you’ve never lived with diabetes… imagine an extra level of concern about what might happen in the future, should the report not be as well as expected. Imagine living with concern over just the anticipation of a report or a simple lab test. Concern about the future is something I try to put in a box, safely stored away until the time when I might have to address it.

Frankly, I don’t know if I could handle it if I started to worry about potential complications all the time.

This is my diabetes.

I have a quarterly appointment with my endocrinologist next month. I have a meeting with my primary physician a month after that. I’ve already been to the ophthalmologist this year. And I have to schedule time with a podiatrist and my dermatologist too.

Meanwhile, there are prescriptions to fill. I have a couple of everyday medications that are refilled every 90 days. Add in the insulin I need, which I need to have refilled every 90 days too. Then there are strips for my glucose meter, sensors for my CGM, infusion sets and reservoirs for my insulin pump.

My out of pocket expense for all of this, the amount that insurance does not cover, has passed $3,500 per year.

If you’ve never lived with diabetes… imagine spending the price of a European or a Caribbean vacation every year just to stay healthy. Think about not finishing college, just so you can afford your medication and supplies.

And that’s not counting the cost of the time it takes for all of those things mentioned above.

This is my diabetes.

If we handle all of this well (and who can do that all the time?), we’re considered obsessive about our disease, making it a bigger part of life than it should be. If we don’t handle it well, we’re considered “non-compliant”, or worse. And that’s without any outside influences like stress at home or in our careers.

In addition to a constantly vacationing pancreas, we go through these internal struggles too, all the time, every day.

This is my diabetes.

By StephenS | Posted in Diabetes | Also tagged , , , | Comments (1)

This is my diabetes.

March 19, 2018 – 10:11 am



This is the most recent infusion set I used to pump insulin into my body. You know, the thing I need to do 24 hours a day, every day, or else I die.

When you inject insulin, either by syringe or by insulin pump, you run the risk of drawing some blood out at the same time. It’s just part of the landscape. You learn to live with the possibility of blood coming out while you’re trying to get insulin into your body.

If you’ve never lived with diabetes… imagine pulling an infusion set from your body and small (and sometimes, large) amounts of blood comes from the site. Imagine having to pull a set early because you can see that blood is on the outer portion of the adhesive used to hold the cannula (the small plastic tube that winds up inside your body, through which insulin is pumped) in place.

Then imagine the idea that this will happen many times if you’re lucky enough to live many years with this condition.

This is my diabetes.


This is the site on my leg where that infusion set was placed. I took this photo within five minutes after pulling the set. My leg will look like this for a couple of days, at least. I need to be careful not to use that site again for as long as I can, because the scarring that has gone on under the skin could keep me from being able to pump insulin through that spot for some time. If I overuse that site, repeated scarring could make it impossible to pump insulin through there permanently.

If you’ve never lived with diabetes… imagine looking at a site like that after three days (or less). Imagine knowing you’ll have another site just like it to look at in three more days (or less). Do the math and imagine how many of these wounds you’d willingly give yourself over the years just to keep from dying.


This is my Dexcom sensor site after two weeks. The sensor sits under the skin and measures glucose in the interstitial fluid between your skin and your blood vessels.

After about a week or so, the adhesive around the sensor starts to pull away from the skin. To continue to hold the sensor in place, I add something called KT tape. It’s the tape you see beach volleyball players wear. It’s flexible and stays in place and is fairly water resistant.

Using the tape allows me to get an extra week or two worth of wear from a sensor. Sensors are expensive, and they’re just one of the many things we’re required to purchase if we want to manage our diabetes as well as possible.

If you’ve never lived with diabetes… imagine getting out the tape every couple of weeks and carefully cutting a hole (hopefully better than the one above) and even more carefully placing the tape over the sensor, placing it so it will hold the sensor and surrounding adhesive in place for a little while longer, so you can afford to purchase something else you really need.

This is my diabetes.

The crazy thing about all of this is that I’m one of the lucky ones living with this disease. I actually have access to an insulin pump and supplies, a continuous glucose monitor, and other tools of diabetes management.

But I’ll never outlive the scars. I’ll never get a chance to rest. There will always be one more thing that needs attention. Every day of my life. It is never ending.

This is my diabetes.

By StephenS | Posted in Diabetes | Also tagged , , | Comments (2)

Living with a chronic condition is like : Laundry.

January 4, 2018 – 10:08 am

With a rare extra day off and nothing on my schedule, in between watching hockey and football on New Year’s Day, I worked to catch up on laundry.

And there, somewhere in between the Sabres and Rangers, and LSU – Notre Dame, it hit me: doing laundry is a lot like living with diabetes.

It’s not enough to just throw everything into the washer. You have to add soap, and fabric softener. Maybe bleach. Do you have soap, fabric softener? What about bleach? It’s not likely you have an abundance of all three of those in your laundry room at the same time. You might even have to pretreat an item or two before you get started. Every load is different. You can’t count on anything.

You’ll have to eventually shift each load from the washer to the dryer, or possibly hang up the more delicate fabrics. Do you use fabric softener sheets? Do you have fabric softener sheets? Do you need to make a trip to the grocery store?

Now you’re probably thinking you’re through with your laundry. Not likely. Because you’re going to have to fold or hang all of those clean clothes. All of them. The truth is, this is the part I hate the most. It never feels like I’m going to get to the end of what’s in the dryer.

And still, you’re not finished yet. You have to put it all away… unless you just want to select what you’re going to wear from your laundry basket. Personally, I wouldn’t think less of you if you did.

Just like the laundry, living with a chronic condition like diabetes means that I have to keep track of medications and supplies, at least one of which seems to need to be refilled every couple of weeks. I have to treat each circumstance differently. Whether it’s exercise, diet, stress, or something else, no two days are the same.

And here’s where living with a chronic condition is different from laundry, or anything else:

You’re never finished.

If my dirty laundry piles up and I just don’t have the time or the desire to get started on it, if I want, I can try to get away with wearing the same shirt or the same pair of pants twice. But even though I have days where I’d like to just kick back and ignore my diabetes, that’s just not possible.

Every situation, every piece of food I put in my mouth, every workout, every single day brings another factor I have to deal with. I can send my clothes out to the dry cleaner if I want, but I can’t pass off my diabetes to anyone else.

If you want to get a taste of what it’s like to live with a chronic condition, grab your dirty laundry and get going. If you really want to know what it’s like to live with a chronic condition, imagine doing laundry all day, every day, for the rest of your life.

By StephenS | Posted in Random Glucose | Also tagged | Comments (4)
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