Moments of Wonderful

…rather than a lifetime of nothing special. A diabetes blog.

Moments of Wonderful - …rather than a lifetime of nothing special. A diabetes blog.

The case to make diabete-ezy

Last week I got a message on facebook wondering if I could help out the friend of a friend who was in town and in need of infusion sets. I was more than happy to help considering I have been on trips where I (separately): forgot reservoirs/cartridges, forgot insulin, left my only meter in a hotel room, lost my lancing device, and had a Dexcom receiver self-destruct two days before Christmas.

I think part of my problem in traveling with diabetes is the difficulty in finding the perfect case to carry my medications and supplies. During Friends for Life last July I noticed a new case at the Medtronic booth, and a few months later I had the opportunity to give it a try.

diabete-ezy caseI have only used it on a weekend road trip, but I like that the hard shell case would also hold up in my carry on bags on a flight. I don’t know exactly how to describe it because it is just hard enough that my supplies won’t get dented or damaged inside but it still has a little give to it (1).

There are some many pockets zippers and elastics bands when I open the cover (2) that I hardly know what to do with all of them (here’s a link to the company website that ACTUALLY shows what fits where). If I used insulin pens, I am sure that some of the bands would be more handy for storage. As of now, on the left it holds: my contact information, a spare battery, the different tapes for my infusion sets and CGM sites, an ice pack (not insulated but was a short trip), and an insulin vial. The center elastic band holds a spare vial of test strips. On the left I included my ketone meter and the scissors for my tape. The ketone meter sits on one of the Velcro patches. There’s also a small zippered pouch that I suppose I could use for spare lancet drums or to hold used test strips on future trips.

Perhaps the best feature of the whole case is the large underneath compartment (3). So far, I have been able to fit a few pump infusion sites, a few pump reservoirs/cartridges, more tape, and a CGM sensor.

I saw a conversation recently in the CGM in the Cloud group on Facebook that some families use the smaller version of the case to hold their child’s CGM rig in their backpack.

I’m really hoping that by having most of my supplies in one place I can break the bad habit of leaving something behind, especially for the upcoming holiday season.
bahhumpug
Disclosure: I received the Diabete-ezy case from Medtronic Diabetes a few weeks after speaking to a representative about it at the Friends for Life conference. I was not asked to write about it, and the thoughts and opinions in this post remain my own. The Diabete-ezy case can be purchase directly from the Medtronic store here (which now includes guest checkout for those of us who are not pump customers).

Wordless Wednesday – New

new Dexcom

New Dexcom. That didn’t take very long at all thanks to a fast response from the doctor’s office and a quick working supply company. Now to test out the new slimmer transmitter with the new software algorithm. I was running the new algorithm on my old system but I didn’t really notice much of a difference. I don’t think that’s necessarily a bad thing because I’ve never really had noticeable accuracy issues either.  But better is better, right?

Starting over… again

The warranty on a Dexcom transmitter is six months. The warranty on a Dexcom receiver is one year. I have passed the end of the warranty on my transmitter and am closing in on the deadline for the receiver. I feel like my diabetes devices are living on borrowed time (see also: my momentary panic after my presentation this week).

My new insurance became effective at the beginning of the month, so one of my first actions was to call Dexcom. Due to changing jobs and changing insurance companies at those jobs, I have now attempted ordering a Dexcom system from four different insurance companies.

waka waka - dexcom beepMy favorite (read: not) part of the process is that every time it is just as if I have never had a Dexcom before. Each company needed a new prescription from the doctor. Each company needed a new assignment of benefits, because they’ve all used third party providers who need permission to charge me if insurance doesn’t pay. They also have all needed a certificate of medical necessity – because maybe the doctor will decide it ISN’T necessary anymore, especially after writing the prescription.

If I remember correctly, in addition to the standard paperwork, the first company needed a BG log with some high and low values recorded. The second company and third companies had no additional hoops, although the second company unsuccessfully tried to deny the claim a few months later.

This week I started jumping through the hoops for the fourth company. New prescription. New certificate of medical necessity. New assignment of benefits. And for additional fun, this company is requiring chart notes. I’d love to see those –

“This patient has type 1 diabetes. Sometimes her blood sugar is low. Sometimes her blood sugar is high. She wears the Dexcom CGM system 24/7. It helps. Here is her A1c. Here is her Dexcom data. This device is cheaper than paying for a hospital visit. Please authorize.”

I am obviously being sarcastic, but I really would like to know what is required in a doctor’s chart notes to authorize a CGM system. I wish there wasn’t such fraud in our healthcare system that makes the insurance companies feel like these steps are necessary.

The countdown started on Tuesday. I wonder how long it will take for me to get my system and I hope it happens before the transmitter is finished.

It’s everywhere

I had the opportunity through work yesterday (reminder: disclosure) to present to a group of over 100 school nurses. Similar to the post by Christel a few weeks ago, the presentation started with a description of the types of diabetes medications and devices a person with type 1 diabetes would use on a daily basis and the cost for each of the items. Since I personally own spares of just about everything, I was able to pack a small backpack with examples so that they could become familiar with the items before seeing it on a child in their office.

these test strips are GOLD!The part of the presentation that surprised me was when I asked how many of them had a child with type 1 diabetes at their school. As members of the fifth largest school district in the country, almost everyone in the room raised their hand.

I didn’t go to huge schools while growing up – a few hundred in my elementary and middle schools, and a graduating class of about 500 in my high school – but I did not know a single person with diabetes. I don’t think there are too many school-aged children who can say that now and while I suppose it’s good for awareness, otherwise this is not a good thing. I wish we could figure out what is causing this increase!

I was back in my office a few hours after the presentation and I thought I heard my Dexcom vibrate. A quick glance at the Nightscout app on my watch didn’t show anything that would inspire a vibrate alarm. A coworker was standing in my doorway and mentioned her cell phone so I decided it must have actually been her phone. A few minutes later I heard the vibration again at this time it was followed by the tell-tale beep. Again, nothing on the watch that would explain it. I checked my actual Dexcom receiver and everything looked normal. The confusion was building! I was panicked that my out of warranty transmitter was sending out final warning signals.

pumping very expensive insulinThankfully another set of vibrations and beeps redirected me to the actual source of the beeps and buzzes. It wasn’t coming from my purse but from the small backpack next to it. I had given the nurses my old Dexcom receiver, transmitter, and a very expired sensor to look at. I guess one of them had been a little curious, because someone had turned the receiver on and “started” the sensor. Two hours later, the receiver was letting me know it was ready for the calibration values.

The good news is that the audience was involved and curious during my presentation and the even better news is that a Dexcom receiver that hasn’t been turned on for 3 months still has a little life left in it.

In my shoes

Or more precisely, on my shoes.

First, it looks like I haven’t officially mentioned it yet here on my blog, but about a month ago I accepted a job working for JDRF. I suppose that would explain why I have written two posts in the same amount of time. Not only am I busy trying to finish off the fundraising for my personal walk team, but I am trying to make sure that the entire walk is successful as well. I LOVE my job but it is awesomely exhausting!

walk sneakersObviously this means that I can’t exactly WALK the walk route this Saturday. I still wanted to do something to acknowledge the people who have helped me along the way.

That’s why I found the perfect pair of high tops sneakers and a white fabric pen and will be taking everyone with me as I meet all of our teams, cheer on the walkers, and thank everyone for all the work that they are doing to to make a difference for those living with type 1 diabetes (and I guarantee more steps than I would have on the actual walk route!).

A gluten free update

I was tested for celiac during the Friends for Life conference in 2013, but even before I received the results I decided to try living gluten free. In my mind, it was worth an attempt because I had a history of allergy and gut related issues tracing back to early childhood – long before diabetes – that had never been fully treated or resolved. I discovered that by removing the gluten trigger from my diet (more on that here and by Kerri here), most of my symptoms and complaints resolved. It hasn’t been hard to stay gluten free knowing how much better it makes me feel.

When I got the first round of results back from the Friends for Life screening – the negative celiac result – it stated that the genetic testing was still pending. After a few more months of waiting, I didn’t think much about how I had not received my results because I didn’t see how it would change my grocery list.

celiac screening

I was quite surprised when I got an envelope in the mail from Massachusetts General Hospital and Dr. Fasano a few days ago. The celiac result is consistent with the original result received shortly after the conference (with my history of lab errors), and now the genetic testing adds another dimension to the picture.

celiac HLA compatible gene

I tested positive (compatible) for the HLA-DQ2/DQ8 genes. This does not mean that I will develop celiac, but had I tested non-compatible it would almost certainly mean that I would not develop celiac disease. Researchers have found that 96% who have celiac confirmed by a biopsy have the DQ2 gene, DQ8 gene or some combination of the two (source). In addition, they believe that having the genes makes a person 10 – 14 times more likely to develop celiac (source).

And so I will continue to eat gluten free, feel better, and deal with the people who think I’m doing it just to follow the latest fad.

%d bloggers like this: