It’s Never Just a Number

Now is a really exciting time to have type 1 diabetes. I realize how absurd that sounds, but just 18 months ago we joined the diabetes world with a bag of syringes and a log book. A few months later our three year old transitioned to a pump and continuous glucose monitor (CGM). However, the data from pump and CGM were not compatible with a Mac. We found a workaround for the pump’s data through Diasend, but at the time it wasn’t approved for use in the States. Dexcom didn’t send data to anything other than the receiver. So these great tools existed, but they spoke different languages.

Thanks in large part to a vocal patient base, now a plethora of diabetes devices are working to speak the same language. The FDA is releasing products and software faster than anticipated. Just last week Dexcom G5 came out, which means a smart device can stand in for the receiver. Also, there’s the new Mac compatible software, Dexcom CLARITY. Here’s the great part: it works with Dexcom G4 and Dexcom Share. You don’t need Dexcom G5 to use Dexcom CLARITY. All you need is an account at Dexcom to download Dexcom CLARITY on your computer.

Information is power in the world of diabetes. Here’s the CGM data from the last two weeks.

Screen Shot 2015-09-07 at 10.41.36 AM

This is our best day; 74% of the readings were in range. On our best day we got a C-.

There are three common mantras in the diabetes world: numbers are just information, it’s never just a number, and keep calm and treat the number.

A few months after diagnosis, an adult friend with diabetes shared wise advice, “Never call a number good or bad. Just call it high or low.” We adopted this practice immediately, but are only now starting to see the reason.

Before programs like Diasend and Dexcom CLARITY, we looked at one number. If his meter said 70 we gave him a glucose tab or two. If his meter said 220 we corrected with an ezBG. Now we’re looking at aggregate data.

To keep our son’s blood sugar in range my husband and I have to work harder and more consistently on this than most of our daily tasks. We’re doing our best, so it’s easier to hear that he has, “significant time above the threshold from 9:50 p.m. to 12:20 a.m.” than, “those are some bad numbers.”

Right now, our best is a C-, but we have information we’re using to study for the test we’ll take in two weeks when we download the CGM’s data again. We have adjusted his basal program and decreased his bedtime snack bolus.

Here’s a question from next test:

Q. If a number is just information, what’s a gaggle of numbers?

A. Hopefully, a B-.

Advertisements

Wanda’s Diagnosis Story

Diagnosis stories are powerful teaching tools that help people learn to recognize the symptoms of type 1 diabetes. For the person diagnosed with type 1 diabetes, a diagnosis is the day his or her life changes and goes forward. Semisweet is sharing the diagnosis story of someone who’s lived with T1D for 53 years. Here’s Wanda’s Diagnosis Story in her own words.

Wanda, diagnosed at age 12, December 19, 1962

About two weeks before Christmas in 1962 I developed a tremendous thirst and along with it, numerous trips to the toilet to pee. This was not immediately noticeable to my mom, but after a week of this, I required a parental note so that I could be excused from my class to go the bathroom, which was an embarrassment for a twelve year old.

My mom’s initial thinking was that I had a bladder infection, so thankfully she set up an appointment with our family doctor for the following week. By the time of the appointment, I was drinking (and peeing) over 1 gallon of water, plus other fluids, each day. I had a huge appetite, but was listless and quickly losing weight, almost 20 pounds in 2 weeks. Our doctor did a quick urine test in his office and diagnosed me with type 1 diabetes, which was called Sugar Diabetes at the time. I was twelve years old and in Grade 7 when I was diagnosed with type 1 diabetes.

I was admitted into the children’s ward of the local hospital and spent one month in the hospital. I remember being worried I would miss Christmas, but the doctor said I could go home for Christmas day if I returned in the evening, which is what we did. I was in hospital for about 4 weeks as I learned the complexities of diabetes care. They also figured out how much insulin I would require to manage each day. Glucose testing was mainly done with Eli Lilly urine testing strips, which certainly weren’t as accurate, but gave you idea if you were in trouble. There was no sliding scale, and pumps weren’t yet invented. I measured food in “exchanges” and ate the same amount every day, so 1 ounce of meat was 1 meat exchange a slice of bread was a bread exchange, etc.

Wanda 1 year after diagnosis

Wanda 1 year after diagnosis

The diabetic care back then was a bit of a nightmare, initially. I had a stainless steel needle that my mom sharpened on a matchbox (the gritty strike edge), and she then sterilized by boiling it in a strainer along with a glass syringe. She did this every night so I was ready for my single shot in the morning. I took snacks to school for mid-morning and mid-afternoon, as well as my carefully measured lunch. I was on the school track team and also played field hockey, so if I needed extra sugar, I drank some juice.

By the time I was 19 we had disposable syringes and needles available at the pharmacy, but with the appearance of recreational drugs on the scene, I would get a hard time when I purchased them, so I had to show them my medical card stating I was diabetic. I got my first home glucose-testing machine when I was in my thirties, and it was about the size of a paper back book, but still fit in my purse. It cost about $250 and was not covered by our medical plan at the time. Thankfully, managing diabetes has gotten easier.

There was NO history of type 1 diabetes in my family, so no one was on the lookout for it. The signs are great thirst and consumption of liquids, resulting in increased urination. Fast weight loss and lethargy come quickly afterwards. I lost weight two weeks after the symptoms appeared. A simple blood glucose test can diagnose diabetes.

Wanda on a Caribbean cruise, having lived with T1D for 51 years

Wanda on a Caribbean cruise, having lived with T1D for 51 years

Here I am­— 53 years (and still counting!) after diagnosis. I really have 2 jobs in life: one is regular life, school, employment and the other is managing my diabetes. It makes for a busy schedule, but I am still here, enjoying the results of good management and great medical care. I have travelled the world: Australia, England, much of Europe, Hawaii, the Bahamas and many of the U.S. States, without a single incident. May every newly diagnosed child take heart; there is a great life ahead. You just have to believe it and go for it. Diabetes doesn’t have to run you; YOU manage IT!

Test Strips Cost $1.40 Apiece Without Insurance

Let me be the first to say we have good health insurance, for which I am thankful, but many people do not. Type 1 and type 2 are expensive diseases for the patient and the insurance company. The burden of caring for a chronic disease with no or inadequate insurance is stressful and cruel, particularly for a disease of higher occurrence in a pediatric population. I read posts from families in the Diabetes Online Community (DOC) where there’s a six month or year waiting period for a pump or CGM, or only a certain number of test strips are covered. Underinsured diabetes care is thick with irony. For many people with T1D, pumps and CGM’s  are the very products that make management easier, and thus decrease the chance of negative long term complications, but these are the products  for which the insurance companies can have extreme waiting periods. Thick with irony. Sometimes, there are insane diabetes moments, which can run the gamut from frustrating to humorous, but there’s always a touch of irony. Here’s mine from last week.

The scene: chain drugstore, mother picking up a prescription twelve hours after returning from vacation, which included attending a diabetes conference, a 7 year old non T1D child is accompanying the mother on this pre-lunch errand and intermittently asking for candy that is for sale on the drugstore counter, pharmacy tech places several large bags on counter…

Mother: And the test strips are in the bag?

Pharmacy Tech: (looking through 4 prescription sheets) No, it doesn’t look like it.

Mother: But I got this text from you (shows text) seven days ago saying the prescription was ready for pick up.

Pharmacy Tech: We text you when the prescription hasn’t been picked up in 1 week.

Mother: I have the test strips on autofill, and we were out of town at a diabetes conference.

Pharmacy Tech: We text one week after no pick up and then we can only hold the prescription for one more week after that. After 14 days we have to return them because insurance won’t let us hold them for longer. If you haven’t picked them up in 14 days, the insurance thinks you don’t need them.

Mother: I had no idea about this policy. My son needs these test strips, that’s why I’m here. We have five test strips at home, not enough to get through the day.

Pharmacy Tech: You can buy them out of pocket.

Mother: How much will that be?

Pharmacy Tech: Let’s see. At $1.40 per strip, hmmm, that’s more than I thought they would be, with a prescription of 400, that would be $560 dollars.

Mother: Wow, just wow.

Pharmacy Tech: Yeah, that’s a lot. Insurance won’t cover these until next month, but you can call us a week early and we can try to fill it early if that will help.

Taking a Pancreas in Your Pocket to the Beach

In everyday normal life with diabetes we search for the meter-remote, a vial of test strips, new lancets, batteries, the Dexcom receiver, glucose tabs, juice, the Dexcom receiver, the phone/s to which the Dexcom Share data is downloaded. Repeat. Repeat. Repeat.

Despite being organized (the up-cycled D-Bag aside), I’ve managed to run over a Dexcom receiver in the preschool parking lot (the up-cycled D-Bag’s fault). In the frantic moments when I’m searching for a needed medical device while fixing lunch or getting ready to run an errand, I’m overwhelmed with the impossibility of replicating a human organ, which is, of course, impossible. However, thanks to technology, T1D is getting easier to manage. Pumps, continuous glucose monitors (CGMs), and hopefully closed loops systems will make management of T1D easier. We’ve certainly seen innovation since the first insulin pump in early 1970s.

model of first portable insulin pump, early 1970s

Our son is 4, so finding creative ways to carry his Animas pump, CGM receiver, and the iPod to which the data is downloaded is challenging. The challenge triples at the beach. Yesterday, the new Dexcom receiver took a *quick* dip in the kiddie pool. Now it’s spending some time in a bag of rice with an ocean view. If you’re not a member of the FB group Dexcom, consider joining this group as it offers great suggestions for using Dexcom, especially when it’s been swimming.

People with diabetes can do everything anyone else can; however, there’s more planning and worry involved. This is our first summer at the beach since diagnosis. We’re learning a lot about pumping in hot weather and conducing some experiments in regards to “waterproof” versus “water resistant.”

Our son has diabetes, but we’re lucky enough to be at the beach. We are at the beach. We are at the beach, but so is diabetes. We are at the beach.

diabetes at the beach in the foreground

diabetes at the beach in the foreground

diabetes at the beach with beach in background

diabetes at the beach with beach in background

Both are simultaneously true.

D-Bag Roll Call

Having diabetes sucks, so my husband and I take every opportunity to find humor in odd d-moments; therefore, we call the bag that carries the glucagon kit, Animas meter-remote, glucose tabs, and all the other supplies, “d-bag.” Yup, the d-bag. We might be going out to eat or dropping Henry off at preschool, and while locking the door, one of us will call to the other, “Hey, you got the d-bag?” We live in a nice, midwestern neighborhood, and we are those neighbors.

When Henry was diagnosed, the JDRF gave us a the Bag of Hope that contained Rufus and a camo green d-bag, but we quickly out grew this d-bag.

JDRF d-bag from Bag of Hope

JDRF d-bag from Bag of Hope

 

Then we graduated to the beauty below, an up-cycled bag that a kid’s lunch from the San Diego Zoo came in. I’m proud that we carried this bag without one scrap of shame for eight months.

IMG_6058

a classy d-bag made from a recycled water bottle

When I realized we were also dumping used test strips, tissues, crumpled receipts, and treasures like pine cones discovered on walks into the bag, it was time to upgrade the d-bag. A couple of FB groups for diabetes posted about the Smartstar Multi-functional Outdoor Sports Chest Bag Pack. We ordered it and love it. There are long inside pockets perfect for the glucagon kit and juice boxes. We use a carabiner to clip the CGM (constant glucose monitor) to the outside d-ring.

IMG_7710

We’re going to add the international symbol for diabetes, a blue circle, and some flashy blue paracord and max out this d-bag. Pockets galore! This d-bag will be able to hold many, many pine cones.