Feel World Diabetes Day 2012

I've spent some time recently thinking about what World Diabetes Day meant to me, what did I want from it, what did I hope it's existence would leave for those that witnessed or participated. On Monday night I found the answer to my question...

Arden brushed her teeth before bed, she put on a silly pair of pajamas and climbed under the sheets. Her voice called to me and said that she was ready to be tucked in. When I entered her bedroom she had the lights out, her face was illuminated softly by a stream of dimmed light from the hallway. Her eyes were closed, she was pretending to be sleeping so that she could try and scare me as I approached. I stopped halfway into her room to tease her, she was trying so hard not to move, carefully holding her lips together so that she wouldn't smile. I looked at her face for a long moment before I sat next to her so that she could scare me. She popped up, I acted frightened, and then we laughed. We talked about the next morning and she expressed how happy she was that I was able to schedule a play date for later in the week with one of her friends. It was a wonderful few moments, some of the best that I had that day. 

Our party was crashed seconds later by the electronic beeps of Arden's CGM. Three beeps to be exact. It's urgent bells told me that her blood glucose was falling, I looked at the clock but I knew that it was doing so far sooner then I planned. Those beeps brought me right back to reality. We tested and continued to mess around, Arden's spirit was unchanged. I decided that Arden needed a juice box, she didn't want it, actually Arden hasn't enjoyed a juice box in some years because they feel like medicine after all this time. I could tell by the slight change in her face that she didn't want to drink the juice but she didn't make a fuss. I smiled and continued to talk about the next day as she forced herself to drink. It occurs to me now that we were both putting on a brave face for the other.

I hope that World Diabetes Day allows one new person to see my blog today, anyone's diabetes blog really. I'd very much like it if as many people as possible could understand more about type I diabetes. I'm not talking about the tried and true stuff. No talk of how many shots or pokes, those things suck but you can't fully appreciate them if they aren't your reality. But feelings, we all understand feelings.

This may seem on the surface to be a minor thing, a petty inconvenience but please trust me when I say that it's very much more. I sat on the left side of Arden's bed as she forced down a juice box that she didn't want. She did it so that she could go to sleep without worrying that her BG would fall to a dangerous level, she did it because she had to, did it because that's what she does. She tried to keep the happy in her face, tried to hold on to the joy that we made together only moments before. She did a good job, I may be one of the only people in the world that could have seen through her mask. 

Watching my daughter with that juice reminded me that there are forces in each moment of her day that manipulate her life. These moments aren't scripted, we don't know when they will happen, how they will end or if we are responding to them correctly. They demand that we stop living and pay attention to them so that we may continue to live. It probably only took her three minutes to consume the juice, but those minutes and all of the ones like them, they steal from us and they take more then time. My hope for WDD is that someone takes the time to understand a little better that which is the life of a person with diabetes, and that they feel as best they can what it means to carry type I through each day. I think that understanding will make an advocate out of even the most casual observer, and that understanding will lead all of us to a brighter tomorrow.

Arden hates drinking juice, I loath having to ask her to do it. Each time acts as a mallet that strikes at my soul. I can't be sure of what it does to Arden, I probably couldn't handle knowing. Please don't think of this as a story about a juice box, it's a story of a chronic disease and it's effects on an innocent person. I began this post with the intention of describing the sadness that watching diabetes do what it does has on me, but I can't find the words. I guess I'll simply say that it hurts, physically hurts me. It changes me. Some days and in some ways for the better, sometimes for the worse, but I am inarguably changed. 

November 14th is World Diabetes Day, November is Diabetes Awareness Month, people that live with diabetes do so bravely each and every second of their lives. Please try and feel what that means, let it change you.

First Impressions: DexCom Platinum G4

It's been about a week since Arden's new DexCom Platinum G4 arrived and I've spent enough time with it to share my initial thoughts from the perspective of a type I CareGiver. 

The G4 is smaller, lighter and more modern looking then the 7+. All good stuff. The wire that inserts into the wearer is smaller to try and further minimize the pain felt at insertion. A number of people have mistaken it for an iPod. The signal range is vastly improved and I'm seeing more accurate readings. Best of all, Arden loves it.

Arden's Reaction

Arden's face lit up when she opened the box and found a pink CGM looking back at her. Her excitement level was just as high, if not higher then when we bought an iPad. She was genuinely happy to get the G4. I never thought that I would see a person, let alone a child, that joyous over a medical device but wow was I wrong. 

BG Accuracy

The G4 began to send accurate and reliable readings immediately after the two hour marrying period. We've only inserted one sensor thus far and perhaps we won't get the same instant feedback next time, but I was not accustomed to being able to rely on the 7+ on day one, so hour one was not even in my mind. I'm also seeing a great deal of numbers within what I would call acceptable range of finger stick testing, both up and down the spectrum, 400 - 75 (Arden hasn't had a significant low this week). Last evening, I missed on a late night snack bolus, and when I tested Arden around midnight I got this...

Even though I have no scientific data to back up my statement, I'm comfortable saying that the G4 is more accurate then it's predecessor. Which is to say that it seems, so far to me, to be closer to finger sticks then the 7+. Time will tell how true my initial observations remain.

Signal Range

Sadly our bedroom and Arden's are at completely opposite ends of our house, not even the vastly improved range of the G4 can reach my bedside. While that was a momentary bummer, the rest is all great news. Arden is able to untethered herself from the CGM in our house and other relaxed situations while still benefiting from it's feedback. The range is quite impressive. A few days ago Arden had dental work performed and I was able to wait in the lobby instead of lurking around her during the procedure. The G4 sent it's signal to the receiver in my pocket, the distance wasn't great, maybe ten feet but I was on the other side of a wall. The 7+ couldn't even send a signal through Arden's hip so drywall is a a big leap forward!

We kept her a little high for the procedure

In the past I would have needed to go in and out of the exam room to watch Arden's BG, interrupting the doctor and making Arden feel awkward. But now I'm right where I should be...

Ease of use

We found no confusion moving from one version to the other. Even though the button configuration is slightly different and the screen is redesigned, neither Arden or I experienced any slow down or inability to use and understand the new receiver. There was no transition to speak of, I found the change completely intuitive and unremarkable.

Wrap

The DexCom G4 is smaller, lighter, nicer looking and it works better. Arden has never once mentioned that the transmitter is taller or that she in any way misses the 7+. I haven't asked her level of comfort during the insertion yet, I will, but asking her the first time wasn't going to yield an accurate reply, she was too jazzed up as we put in on.

Meanwhile her poor 7+ is just sitting on the counter as I search for a way to legally donate it to a child in need, which is not as easy of a task as you may think.

More information and final thoughts

Everything you need to know about the G4 can be found on DexCom's website. Colors, size comparisons, tutorials, cute little videos... it's all there. I can't tell you for certain that I would stop using a working 7+ and rush to buy a G4, I'm far too thrifty for that. We were lucky in that our 7+ had run past it's life expectancy and was about to be replaced by our insurance when the G4 hit the market. I would have waited for financial reasons if that was not the case. Never-the-less, if you are eligible for upgrade or thinking about using continuous glucose monitoring technology for the first time, I can't recommend the G4 Platinum strongly enough. It makes our days and nights better and aids me significantly in my daily dance with type I diabetes. I'll post more thoughts when we've been with the system longer. Please feel free to ask any questions that you may have and I'll do my best to answer them. 

Neither I or 'Arden's Day' is compensated for my thoughts or opinions. There is a "I'm not a doctor' spiel at the bottom of this and the main page, please remember it when you make decisions about health matters.

Update on Monday, December 3, 2012 at 11:22AM by Scott Benner

The second part of my review DexCom G4 Platinum: Second Look, can be found here.

Spry's D-Hero Interview: Scott Benner

Nita Cure is on Twitter @NitaCure4T1D, she is also the creator and mod of @thecandoc.

Spry Publishing (my book publisher) is featuring interviews with several different people from the D.O.C. for Diabetes Awareness Month. They recently asked me who my D-Hero is.

There are so many heroes in the diabetes community. Bloggers who share so that others can be comforted, parents who don’t sleep, and people who lead by example. Every person living with type 1 diabetes is a hero. These people do something brave in the name of their health every second of every day.

But if I had to pick just one person…

You can read the rest of my answer on Spry's blog. 

Hurdles and hoops

I believe that we all lead similar lives. Our homes are different shapes, our sofas different colors, but generally we all struggle with similar issues and think about many of the same things. On any given day I wake up, go directly to Arden's room, check her BG and then begin my day. In the course of that, and every other day, I have tasks to complete, responsibilities to see to, worries to ponder, and relationships to foster. The minutes pile up to form hours and in the seeming blink of an eye, the day has ended. Most days feel like I've navigated, instead of lived them. 

Each of our two children has their own life that we oversee. School, friends, activities, hunger, health, questions, morality, free time and entertainment. I have the same issues in my day, as does my wife. Additionally, there is work, commuting, debts, and this one strand of carpet that I have to glue back into place as soon as I can find a free second.

Leaves fall from our trees, we pick them up. The floor gets dirty, we sweep it. I get sick, Kelly is tired, my son is learning to be a young man. Cooking, cleaning, shopping, paying. I don't eat the way I should, and that reminds me that I don't exercise the way I should. I reacted poorly to something my wife said, I don't know why but I want to think about it, I want to apologize and really mean it. I would too, if I had the time.

The garbage disposal stopped working, it's okay, I fixed it. Laundry, oh the laundry, it won't stop. Last week we had the JDRF Walk, Hurricane Sandy, my car broke down, and my son left his bat bag across town. Tick, tick, tick, the days fly by, this is life, I'm not saddened by it or even slowed down. This is about what I expected, it's fair, it's what we all do. I'm not complaining, merely shining a light on it so I can say this... People's lives are full, on any given day we all have enough to deal with. An average day offers enough challenge, it's normal hurdles are plenty to keep us busy. When a chronic illness is added to your life everything is magnified by a million. The work, worry, struggle, pain, sadness, effort, it's all magnified. One day a piece of technology comes into your consciousness, a gadget you can't really afford, and don't actually want, but it will help you manage your day a little easier, keep you a little more healthy. Perhaps it can stop something bad from happening. It's like an oasis when you realize it's potential, music plays in your head, stress begins to lift... and then the hurdles appear.

My fuc*ing insurance company changed some bullshit rule and now I have to jump through even more hoops to get Arden her DexCom G4. I need, I really need some bureaucrat, some bastard whose only interest is creating a new process that squeezes two more cents out of the consumer. I need that bag of crap to push a paper from this side of his desk, to that other and make my day just a little more stressful and complicated. I need another hurdle, another task that takes time from the things I actually wish that I could do, the things I want to do, the stuff that might make our lives; better, more loving, fulfilling, easier. 

There are always going to be people and entities that pray on others, but I hope that there is a special place in hell for the ones that line their already full pockets by forcing people that live with diabetes and other life changing, and chronic illness to experience more stress then they already do. Be ashamed.

"I'm sorry but this isn't approved for people under 25". "We only cover 6 strips a day". "Has she had a seizure... she has, good!".

We live a life that includes the possibility of seizing if we take or give too much medication. As screwed up as that is, it's also a life where some faceless person on the other end of a phone call will act like having one of those seizures is good news. They don't have that reaction because the are callus, they have it because the system they are trying to exist in requires something bad to happen to you before it will let you protect yourself. Then, just in case all of that isn't bad enough. Just in case my family actually having to live through a seizure wasn't enough. Even though I'll never, ever, as long as I live, forget the helplessness that I felt as Arden's brain scraped and sputtered to stay alive. Now I need to recant the story to a phone jockey at my insurance company just to keep a benifit that we already have, and then she says, "good". She didn't mean "good", I know that, she meant, "I can use that information to get you..." but she said good, and I had to act like this was happy news.

I didn't have the time or energy to correct her, I just wanted to get off the phone. I had dinner to make, my son needed help with a project, Arden's BG was too high, our dog needed to be walked, my car picked up, there was just a hurricane. Oh and I'd like to sit down for five seconds before I stay up half the night to watch my daughter's BG. 

After a week, countless phone calls, dozens of left messages and emails. Three misunderstandings and an argument that I still don't understand. Arden's DexCom G4 is on the way. In the past, I would have just called DexCom and it would have shipped in a day, but now, now there's a third party supplier, insurance questions, phone calls, emails, and a thousand hoops and hurdles. The best part is that in the end, the exact same thing happened as before. They shipped it. I lost hours and days from my already over-taxed week, but I don't think that they care.

Ignorance + Greed = more money for them and less life for us. Next time my insurance company needs to make an extra dollar I hope they just break into my house and take it. At least then they'd be a proper criminal. 

Please remember that my story is about a CGM, many people have this same story about insulin, test strips, and other much more basic and needed supplies. We shouldn't have to fight to be healthy, and we certainly shouldn't have to give up our already precious minutes to wage that fight.

I want to thank the good people at DexCom for helping me to navigate the third party medical device supply world. This would have taken so much longer and been even that much more aggravating without your guidance.

I'm Blue

Our 2nd JDRF Walk shirt, circa 2007

Today is the first Blue Friday of Diabetes Awareness Month. Wear something blue today and then tell a stranger why you are. Continue throughout the month to wear blue, and each Friday of the year.

Wear blue, spread the word!

Follow the hashtag #BlueFridays on twitter.