"Lessons" From The Past

This was originally posted to my blog, Diabetes Odyssey.

I’ve had a bad week. Lots of things have gone awry in my life (most pertaining to electronics) over the last several days. While in the midst of all this stress and aggravation I found myself realizing that the way I deal with stress and negative emotions has not changed.

First, several of our electronic devices around the house decided to give us trouble all at once. Then I had an occlusion (something blocking the cannula of my pump set) that caused my blood sugar to rise (600 at it’s highest, no ketones). I was dumb, angry, and bull-headed so of course I refused to change my set and just went with the high and injected bolus’ with my pen.

Obviously this cost me lots of insulin and I ran out of my emergency supply (of which I don’t keep a ton of) as well as my regular supply (of which was already low). So I called in a refill. I got a call back from the pharmacy the next morning (the day I needed to put in a new set…of which I should have done a day and a half earlier) telling me that my insurance is denying the refill because “it’s too early”. I asked if I could refill my pens, then. She informed me my pen prescription had been canceled and no longer existed.

PANIC

I totally began to panic. I called my doctor’s office and explained the situation and asked for a new prescription allotting more insulin vials. The nurse assured me the request would be sent to my doctor. I made sure she knew this was an emergency and I needed the prescription TODAY. She assured me she understood.

Time passed, I got no calls from the pharmacy or my doctor’s office. The stress level was rising steadily with my blood sugar. What would I do if I couldn’t get the prescription? I can’t afford to pay out-of-pocket for my insulin! I guess I could always buy some Novolin R, but that stuff sucks.It’s like buying Cheez Wiz instead of Provolone.

In the early afternoon I got a call from my doctor’s office. I was hoping it was news that the prescription was sent. No, it was questions to clarify exactly what I needed. Did I need pens or vials? How much insulin do I use in a day?

I always drop my jaw at that question, especially when it comes from a person who specializes in type 1 diabetes. “How much insulin do you use in a day?” Really?! How can you ask that? I hope you’re not asking for a solid number, because it changes massively from day to day depending on my activity level, food choices, caffeine intake, menstrual cycle, and a million other factors.

Once the need was clarified, I reminded the nurse how important it was that I get this prescription TODAY. She assured me the doctor knew of the urgency.

Hours passed. It was after four now. I broke under the pressure and stress. I paced the floor crying like a three year old who is exhausted but doesn’t want to go to bed. I cried myself out to the point where I could speak clearly and then I called the pharmacy. I asked if the prescription had gone through.

Nothing yet.

I felt like I was on the verge of hyperventilation.

Time passed. I was running through my head all my options. OK, we’ll have to go buy a vial of R and use it until my prescription goes through. What a waste of $25…

It was just about six o’clock when I got the glorious call from the pharmacy. “Your prescription is ready.”

Oh, thank goodness!

I got my blessed insulin. Let me take a moment here and say I hope any non-diabetics reading this can now get a feel and understanding of how very much we diabetics depend on insulin to stay alive. I wasn’t just stressed and upset because things got off the norm, I was truly frightened for my life. Insulin is my lifeline. We don’t just get sick without our insulin, we will die without it! Non-diabetics make their own insulin an don’t have to worry about running out and not being able to get their hands on it. Diabetics do have that worry. Diabetics in third world countries die everyday because they don’t have access to insulin.

In any case, you know what other dumb thing I did once all was better?

“I need chocolate.” I said to my husband. And I got it…and other comfort food. Lots of CARBOLICIOUS comfort food. I made use of that insulin. This is another habit of dealing with stress that has never changed but needs to.

So now that you know it all worked out, you might still have the question, “Why didn’t you just change your set as soon as you knew something was wrong?” The answer to that question is simple, reasonable, and also very, very dumb.

I spent seven years without insurance or money. In that time I had to make things last. I had to make my insulin last so I used as little as possible to stay alive (but very unhealthy). I had to make my syringes last, so I used the same one over and over for a month! They would get so dull I had to push hard to pierce my skin.

Once I got insurance and a bit better income, I had access to proper health care and prescription coverage and no longer had to worry about making things last. But the psychology of preservation is still there. So when I got the occlusion and knew I needed to change out my set, subconsciously I thought “don’t waste supplies!”

Yup, that’s it, that’s the dumb-■■■ reason I didn’t change my set.

Now it’s time for me to get back on track.

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Tamra - I identify with a lot of the emotional turmoil you’ve faced but I’ve always been blessed with good solid access to my diabetes supplies.

When my doctor’s office asks me how much insulin I “use” in a day, what they’re really asking is how much you need in total for your body’s actual need plus wasteage from infusion set changes and other delivery anomalies. If my body actually needs 30 units per day, I have no problem answering that question with 45 units. I’ve never had a doctor or office staff challenge me on my request. Like you said, insulin is a matter of life and death. No one should be infuenced by their fear of running out. In my book, this is a civil right! I don’t see anything wrong with maintaining a “buffer supply” of insulin that helps keep you sane when unplanned events happen.

Our insulin needs are not always the same. I’ve doubled my daily dose when fighting an infection. I once lost several vials due to inadvertantly brushing up against my refrigerator thermostat wheel. Insulin doesn’t work if frozen. The same goes with leaving your insulin unintentionally in a hot car. Life happens; doctors get that. Insurance companies don’t.

Great line! I haven’t used Regular insulin since 1996; I’m sure I would feel the same way.

I recently had my supply of CGM sensors threatened due to miscommunication at the supplier. For a brief half hour, I went through some strong emotions of anger and panic. As people with diabetes, we struggle to control endless factors that mess with our metabolic well-being. When the world wants to add a completely man-made challenge to the heap we already face, it just seems preposterous. And the non-D world just doesn’t get it!

I see nothing wrong with making the best use of the diabetes supplies you have. You shouldn’t, however, threaten your safety and health with that ethic. You are much more important than someone seeing you as a good steward of public health assets. I suggest you seriously reconsider your take on this. When in doubt, put yourself first.

I enjoyed your account. You are a very good writer!

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when I didn’t have insurance it was always a struggle to get insulin and syringes without a script. I have had pharmacies outright refuse to sell me insulin

And yet it comes up again and again in these conversations with medical bureaucracy. Arrgh!

These two things–

and

–kind of go together. This is basically why so many of us end up with The Diabetic Supply Closet of Doom, filled with all manner of stuff we don’t necessarily even use anymore, because you just never know! I have old BG meters, a box of BD syringes, all kinds of junk I’m really hesitant to throw away because of that you just never know! feeling. I think I finally threw out some chemstrips a few years ago, but even those… Not to mention that when prescriptions are being renewed I ALWAYS grossly and intentionally over-estimate my usage so as to not take any chance of running out because it’s safer to have those extra vials or pens sitting in the fridge for a year and not needing them than to run out, because you just never know!

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You had me on the edge of my seat wondering what the outcome was going to be.

Our past definitely affects what we do today. I spent time in college very poor and very hungry, so every meal was totally consumed, I barely had to wash my plates. Today, I still eat just about everything, even when I know I don’t need to or maybe haven’t bolused correctly for everything on the plate. This is a particular problem when I go out and have a meal served with rice. I have worked hard in the last year or so, to have the extra put in a “to go” box, so I can feel like I haven’t wasted the food.

This is an area where I use the feedback from my CGM to help with the discipline needed to leave food on the plate … sometimes.

Will you use this most recent lesson to change what you do today?

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Novolin N and R are not required to have a prescription, but when I used that type of insulin and went to multiple pharmacies to compare prices, half of them knew and understood no prescription was needed, the other half tried to insist I needed a prescription.

So true! I never throw anything awy that has to do with my diabetes.

I will not neglect to change my set when needed. This “lesson” has also reminded me of what it feels like to be very high. It doesn’t feel good at all.

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