DBlog Week 2017 Day 2- The Cost of 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?

All I can write for this topic is how fortunate and grateful I am that I have insurance that is willing to cover the supplies that I need and that I have a job that let’s me afford the high deductibles that I pay every year. Between the sensors, test strips, insulin, infusion sets and tubing, doctor visits, fruit snacks to treat the lows, diabetes costs thousands of dollars a year, even with good insurance.

It breaks my heart every time I hear that someone doesn’t have a CGM because their insurance won’t cover it and it’s too expensive. Or the horror stories of people not being able to afford the insulin they need to live. The devices and medication that we need to care for ourselves and stay alive should be accessible and affordable for all. End of story.

 

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Diabetes Blog Week Day 5- Tricks

Diabetes Blog Week

Today’s topic: Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other.

For me, diabetes “tricks” are really just more safeguards that I’ve created for myself to cover for the fact that I’m actually not very organized when it comes to my diabetes. But you know what, it works for me and that’s what’s important.

So here are my diabetes tricks, which are essentially tricks that I play on myself so that I don’t find myself in hot water with no supplies left. Or ways to make the supplies I do have last longer.

Hide things from yourself. I don’t have an organized system to remind myself to reorder supplies. And while I know many companies offer automatic refills, it never matches up to when I actually need supplies so I end up stopping it. Basically, when my supplies look like they’re running low, I order more. But sometimes things don’t go smoothly. I forget to order. Or there’s a hold up with the pharmacy and they need my doctor to write a refill which takes longer. Or they mess up the prescription. And then days and sometimes even weeks pass and I start to freak out because I’m running out of insulin and I need it to live! But then I remember my trick, I hide an extra bottle of insulin from myself so even when I think I’m out, I really have one left! Genius! And I do this for all my supplies, I keep an extra bottle of test strips, a sensor, and a couple infusion sets separate from the rest of my supplies just for emergencies (or moments of forgetfulness)

Buy bulk. I’ve used many things to treat lows over the years, but my food of choice are packets of fruit snacks. They’re small and portable, they’re the right amount of carbs for most of my lows, you can eat part of a pack, they don’t raise my blood sugar too high and they work quickly, and they’re cheaper than glucose tabs and other snacks. So I go to Costco and I buy the box of 80 fruit snacks (which are usually only like $10-$12 in store for the box). But I don’t just buy one giant box, I buy 2 and sometimes 3. I keep one in my apartment, I keep one in my car, and I use one to refill all my stashes of fruit snacks in every coat pocket, purse, and bag. This way I can guarantee that I am never without a way to treat a low.

Find good tape. When it comes to my CGM, I wear that thing as long as I am getting accurate numbers, which I beyond the approved 7 days. But I never would be able to wear it as long as I do without the comfortable, sticky tape that I place over it. I currently use Hypafix, the 4 x 10 roll, and am a huge fan. Having strong, reliable tape is a must when you continuously have tubes and sensors stuck in/to your body.

 

 

 

Stress and a Pouch

How does your stress influence your diabetes and vice versa?

It’s a question that I’ve been thinking a lot about lately. Why? I was invited by my friend who teaches an undergraduate class on the Psychology of Stress and Relaxation to come and speak to the class. They’re currently talking about the psychophysiology of stress and the relationship between stress and illness/chronic conditions. I was invited to share my personal experiences with diabetes and stress.

I actually have a lot to say on the topic, but as I was writing up my talking points, I realized that a lot of the stress that I have around my diabetes is this underlying constant stress. It’s the every day worry about my blood sugar control, dealing with the highs and lows, worrying about the long term complications, coping with the unknowns and unexpectedness of the disease. It’s the stress of constant vigilance, alertness, and preparedness.

And as I’ve lived with diabetes longer, what may have originally caused more stress and anxiety, is now just part of what it means to live with diabetes.

But of course, the day before I am scheduled to talk with the class, I had a truly stressful, out-of-the-norm experience.

I keep all the supplies that I need to change my infusion set in a small blue pouch. Inside I keep a couple reservoirs, infusion sets, the inserter, a vial of insulin, test strips and a couple batteries for my pump. I usually keep the pouch in my work bag or workout bag and take it with me for any overnight stays or long days away from my apartment. In the 15 years I’ve had diabetes, I’ve never lost or misplaced this vitally important pouch….until today.

I was busy getting my bags ready for work this morning, I knew I would be running out of insulin sometime during work today so I made sure my blue diabetes supply pouch was packed. However I couldn’t find it. I searched frantically through all my bags, my closet, all around my room and apartment. I went out of my car, no luck. Inside I was mildly panicked, but I remembered that I had taken the pouch in my boyfriend’s car on Saturday so I thought maybe I had left it there. It was 8 am on Tuesday. I’m going out of town on Thursday so if it truly was lost, I would need to have a new inserter overnight shipped to me so that I would have it before I left town.

I sent my boyfriend about 6 frantic texts. But as expected, he didn’t answer. It just so happened that my boyfriend had the day off today and I was sure that he was sleeping in. Since he keeps his phone silenced in a different room, I knew he wouldn’t answer my texts or calls until he woke up…whenever that would be.

IMG_8542So I waited anxiously for him to awaken. And waited, and waited. Finally at 11 am he woke up to my texts and calls.

“It’s not here.”

After making sure that he had thoroughly searched his car and apartment, I was ready to place the order and pay the extra cost for the inserter to be shipped overnight.

“I’m going to your apartment to look. You probably didn’t look that well since you were in a rush this morning.”

How could I say no to such a generous offer? However now I was really starting to worry that the inserter wouldn’t ship in time to get here by tomorrow if I had to order it. “Hurry!”

I waited anxiously for some good news.

“Wtf it’s not here.”

Ugh. My finger was hovering over the “place order” button online. With that confirmation, I clicked the button. I thanked my boyfriend for his thoughtfulness and his attempt to find it. It was unfortunate to have to pay $15 in shipping, but hey, you have to do what you have to do for your health.

Literally 2 minutes later…

“Omg” “I found it!”

Of course. Turns out, as my boyfriend was leaving, he almost tripped on a random paper bag on the floor and felt something inside. Sure enough, the blue pouch was inside the paper bag. I must have thrown it in there when I was getting out of his car over the weekend and completely forgot about it. I was so relieved! I needed that inserter to be able to change my set and now I wouldn’t have to worry about it getting here on time.

I kept the other order so I would have a back up so I could avoid a future situation like this, but called the company and had it changed to the free standard shipping.

Talk about a stressful morning though! At least I have a story to tell tomorrow to the class!

I’m a cord tucker

Ninety-five percent of the pants I own have pockets. When I wear a skirt, my pump is clipped somewhere that is not visible. My pump stays in my pocket, secure and hidden away.

In many ways, diabetes is an invisible disease, or visible only when you want it to be. I don’t think you could look at me and be like, “Oh yea, she has type 1 diabetes.” You might see me checking my blood glucose number, or take my pump out of my pocket to bolus for my lunch, maybe you see that I’m looking a little off from a low, but otherwise I don’t think I look any different than you do.

I’m a cord tucker.

But do you have a cord constantly hanging below the hem of your shirt? A cord through which life sustaining insulin travels. I have a cord. And in some ways that cord is symbolic of the difference between me and you. That cord is a visual reminder of a disease that I live with and manage every single day. But other times that cord is a sign of solidarity. Like when in a random bakery in Detroit, I saw your cord and knew right away that we had something powerful in common. That cord ties us together.

I’m a cord tucker.

Sometimes it’s a safety issue. I don’t want the cord to get wrapped around a knob or something and yank my infusion set out. So I tuck it into my pants so that it doesn’t hang freely. But sometimes it’s not about safety. It’s about not having to talk about my diabetes or answer questions when I don’t feel like it. It’s about remaining invisible when I want to be.

Yesterday, I hung freely.

I let my cord show. Yesterday it didn’t matter to me. I didn’t care who saw it. But you stopped me in the office kitchen, “I don’t mean to touch you, but there’s something hanging off your shirt,” you said as you reached towards my cord, ready to break it off like a loose, dangling thread. I didn’t care if it showed or not. But you did when you told me that my “stuff was all over the place,” gesturing to my cord hanging on my chair. You weren’t being mean, or judgy. You were trying to be helpful and maybe even concerned. You weren’t used to seeing a cord, and now you did. But do you really care if my cord is showing? Do I care? Maybe. Maybe not.

Today, I’m a cord tucker.

Double check

It was a typical morning as I got ready to head to work. I ran through the checklist for the day:

Gym bag. Do I have my change of clothes? Shoes, socks? Water bottle.
Lunch box. Do I have my breakfast, lunch food, and snacks? Silverware?
Do I have my glucose monitor? Enough strips? Do I have my CGM? Is it charged? Do I need the cord?
Do I have extra supplies? Insulin, infusion set, inserter, reservoir, extra syringes?
Do I have enough fruit snacks if I go low? Maybe grab a couple more.
Phone. And charger.
I need my work badge.
Do I have my hat? And my gloves. Where’s the other glove?
Wallet.
Car keys. And apartment keys.

I think I’m ready.

Let’s go.

Twenty minutes later I walk into work, ready to take on the day. I reached into my pocket. Empty. The other? Empty as well.

Insulin pump?? Where’s my pump? Shit.

Back home I go. I’m so forgetful sometimes.

The Diabetes Spooktacular

I love Halloween. Not because of the candy, I love Halloween because of the opportunity to be creative when it comes to costumes. I love to make my Halloween costumes each year and I get really into it. People’s reactions to my costumes is the true reward for all the time and effort. This year, I wanted to extend the costumes to a new subject, my diabetes.

Let’s meet the monsters:

Dracula
Glucose meter

“I vant to suck your blood!”

That’s all I could think about when I decided to dress my glucose meter up as Dracula. I mean isn’t that really all a glucose meter really wants, lots of blood? This Dracula’s prefers to have blood that has the perfect amount of glucose, not too much and not too little.

The Mummy
Insulin Pump

Keeping my diabetes “under wraps” or making sure things are “all wrapped up”. I decided to dress my insulin pump up as a mummy. It was also kind of playing off of the idea of preserving organs and the fact that my pancreas is not preserved in its original working form (yea, that part was kind of a stretch).

Ghost
Continuous Glucose Monitor

I decided to dress Gigi, my CGM, up as a ghost because it seems like my CGM is always disappearing and then randomly showing up. I love how the ghost “glows” with the light of the meter shining through.

Wishing everyone a very spooky Halloween! May your sweet tooth be satisfied and your blood sugar stay in range!