I Feel Really Dizzy
Nothing diabetes can do to us – is as harmful as living in fear.
It took three consecutive wins on one of the most grueling summer days that I can remember, for then eight year old Arden and her friends to become champions of their softball district in the summer of 2013.
If I recall correctly it was around the fourth inning of game two that Arden pushed open the dugout gate waving her hands at me. I jumped up and moved swiftly in her direction, she was repeating something that I couldn't make out until I got closer.
"I feel really dizzy."
Moments later I was in the dugout with Arden, I didn't bother to check her blood glucose before I gave her the first juice box. She would eventually consume over sixty carbs to get her blood sugar up to only 131.
Her BG dropped so quickly that the DexCom CGM didn't alarm until she was drinking her juice, by that time I had already tested – she was 37. The glucose monitor caught up to what was happening moments later and that's when I saw that not only was her BG 37, it was falling at a rate of greater than 3 points per minute.
Arden's spot in the line-up didn't come up in that inning and she didn't go back onto the field after her teammates batted. Arden spent that time lying on the bench with her head on my lap, waiting for the sugar to be absorbed. She told me that she was dizzier than she had ever been, her head hurt, she was flustered, a bit disoriented – it was one of the saddest things that I've ever witnessed as a parent. Until it wasn't.
Arden twice stood up during that time to check herself, hoping to feel better before her friends were finished on defense. She was beyond determined not to miss her at-bat that was due to come up when they got off of the field. Twice she stood in front of me looking ragged while pressing her hands against her temples, trying in vain to make her head stop spinning.
I told this story after it happened but I'm telling again for my #DiabetesAndFear series because even though it's only been a year, I now have a more complete perspective than I did that day.
Last year I was proud of Arden for being tough in the face of adversity. I felt resolute, if not a bit unsure, with my decision to let her hit at her next at-bat. That was the narrative then, proud with a touch of diabetes can't stop Arden.
Today I know that this moment taught us both a greater lesson. We live in a time where many parents try very hard to remove obstacles, no one wants to see their children struggle but I think that a person is made in those struggles and you find out what you're made of when challenged. In a world where I've seen kids leave a sports event because they skinned their knee, my daughter stood at the precipice of having a seizure, she did what she needed to survive – bore down and then won a championship.
This event happened almost 7 years after Arden was diagnosed. I would not have handled this the same way had it happened years earlier. When I was scared of diabetes this would have sent me running for our house and I may never have come out again. It is with great luck that I can tell you that other, smaller events like this happened before last year and they helped me to be able to find a calm focus on this day. Tomorrow, I'll tell you about one of those small moments.
I am reverent of what insulin can do and while there was a time when I was scared of it's power, watching Arden shrug off it's best punch taught me that this is the diabetes version of a skinned knee. Maybe it's not fair that this is our reality, but I am unwilling to allow the added concern to create a life of regrets. I am never reckless with my children's safety but I will be damned if I'm going to allow what was an anomalous event, to bring back the fear that enveloped me when Arden was a toddler.
Nothing diabetes can do to us – is as harmful as living in fear. You can believe me now or believe me later, but I can tell you this with certainty. I miss the time that we lost to being afraid and we can't get it back.
#DiabetesAndFear don't have to go together.
Miss Manners Responds
Miss Manners. Judith Martin & Nicholas Ivor Martin
Lets recap for those who are coming in late...
On February 14th the Washington Post ran a 'Miss Manners' column that included a letter from a gentleman who described himself as an "Insulin-dependent diabetic".
“DEAR MISS MANNERS: I am a businessman who frequently flies both domestically and internationally. I also happen to be an insulin-dependent diabetic.
I currently do my glucose testing in my seat. It does involve using a lancet device to get a drop of blood to test, but is fairly unobtrusive. Of course, all lancets, alcohol preps and test strips are stored in my test kit for proper disposal later.
Am I being rude to perform this test next to a stranger? Injections I perform privately in the plane’s lavatory. In the airport, I use the counter by the wash basin, since most water closets have no room for insulin vials and other supplies.
Many people seem to stare and resent the fact of performing such a function in this space. I have also had children ask, “What is that man doing? Isn’t that a bad thing?” (They’re obviously thinking of their drug education classes.) Am I too self-conscious?”
Different people in the diabetes online community had different responses to Miss Manner's (Judith Martin) subsequent advice. Some thought it was fine, some felt outrage, and others thought that she just didn't understand living with diabetes. Many made their feelings public on social media, blogs and other avenues at their disposal. I wrote about it on the Huffington Post.
Today on DiabetesMine.com Mike Hoskins shared his interview with Miss Manners about the subject, among the things he learned, Judith's 46- year old son Nicholas has been a type I diabetic for almost two decades and he is actually the one who wrote the reply to the gentleman's question. It read...
“GENTLE READER: Absent an emergency, medical applications (like bodily functions and grooming) are properly done out of sight — meaning in private or in a restroom — unless they can be done so surreptitiously as to be unrecognizable as such. Miss Manners does not object to a pill taken at dinner, so long as it is not accompanied by a dissertation on your cholesterol.
The technology associated with diabetes is fast approaching this standard, although Miss Manners draws the line at drawing blood. Restrooms exist to provide a proper location for such necessary activities when away from home, and those who use them have no business monitoring the respectable, if sometimes unaesthetic, activities of others.
You may chose to tell children that it is a medical procedure, or ignore them and let their parents do that. Miss Manners would hope that any parents present would also resolve to teach their children to be more discreet with their curiosity.”
My response to this advice wasn't rooted in diabetes. I did feel as though the advice was antiquated when it came to diabetes, but mostly my response was aimed at how the advice seemed to ignore the tone of the gentleman's letter. I felt like the advice lacked deference to personal freedom, did not address the man's concerns about his actions and ignored, what I saw as, pressure that he was feeling about being himself. The issue felt bigger than diabetes to me and it seemed that I could have swapped the words in the man's note that were specific to diabetes with any number of other lifestyles.
In fact, let's try that. I took diabetes out of the man's letter (just below). Read it again, this time with personal descriptors in place of the diabetes language. I'll bold the words that I've added in place of diabetes related text. What if the letter said...
**DEAR MISS MANNERS: I am a businessman who frequently flies both domestically and internationally. I also happen to be a person who is different from others.
I currently live my life in my seat. It does involve things that others are unfamiliar with and could find uncomfortable, but is fairly unobtrusive. Of course, I do my best not to infringe on them.
Am I being rude by be myself next to a stranger? I go into a restroom when I do things that I know others are uncomfortable with. In the airport, I use the counter by the wash basin, since most water closets have no room for my life and the basic things that I need to live and be happy.
Many people seem to stare and resent me when I'm being who I am. I have also had children ask, “What is that man doing? Isn’t that a bad thing?” (They’re obviously thinking of their drug education classes.) Am I too self-conscious?**
That's how I read the man's letter. I felt him asking for guidance that would alleviate the torment he feels, both from himself and from random strangers who are made to feel uncomfortable by his presence. I read the words of a person who wants to fit in but can't figure how, so he is considering hiding himself. That's why the response that I wrote is called, 'Making People Hide Is Never the Right Answer'. I saw a parallel to all of the other social issues that people have to needlessly struggle with in the name of making others comfortable. Why is it not incumbent upon the "others" to make the people who feel judged comfortable? Why do the wants of the many outweigh the needs of the few? Why is the man, who is made to feel as though he should be hiding, the only one who is concerned about how people feel? How did it happen that people confuse being in the majority with being correct, justified or righteous.
In my mind, this man might as well have been asking for guidance about gay rights, racism or living with obesity - Really anything that the masses are comfortable being judgmental about. You may see my view as a stretch, but its how his letter made me feel. I felt compassion for a man who lives with guilt about who he is, a guilt that is unfair, unfounded and often given to him by others. What I wanted for him more than anything else was to feel free of it. I wanted Miss Manners to help him by telling the world that he is no different then anyone else, and that his humanity deserves the same respect that they demand for themselves. The answers that Judith and Nicolas gave to Mike Hoskins don't indicate, in any way, that they see this connection. I understand that the Miss Manners column is about manners, but, and perhaps it's just me, but I am never in favor of marginalizing a person to protect the feelings of another. No one is more important than the next person, and we all have something about us that requires the kindness of another to help us feel included - some of us just have stuff that's a little more visible than others.
The interview at Diabetes Mine is well done, very balanced and clear - not unlike what I've come to expect from Mike Hoskins. Mike blends facts with opinions in a well-written and conscious manner. Despite their rebuttal, I still feel that the advice that Nicholas (in the voice of his mother) gave to his readers ignored every undertone of the man's letter and I am surprised, especially now that I know Nicholas has diabetes, that he didn't choose to forgo "manners" and connect with the man on a more personal level. Perhaps he would say that isn't the goal if Miss Manners and I guess that would be accurate - but I don't find that line of defense tolerable. I do wonder how Nicholas, removed from his duties as Miss Manners, would respond to the gentleman's letter, so far we don't have the answer to that question because they choose to defend, in a very narrow way, their response to the original letter, ignoring all of the rest.
I say, people first... and then we can worry about when it is permissible to wear white.
Links you need
Miss Manners article containing the advice in question
My response on Huffington Post
Diabetes Mine Interview with Miss Manners (I hope that you take the time to read this)
Thank You!
Thank you...
... for supporting me over the last year while I wrote my book.
... for reading the book.
... for considering reading the book.
... for the wonderful reviews.
... for telling a friend.
... for your touching words of encouragement.
... for the emails, tweets and FaceBook messages.
... for putting up with the blog turning into an infomercial this week.
... for laughing while you read.
... for crying along with me (If you cried when you read it, be sure that I cried while I wrote it).
... for helping to make me a published author.
... for reading Arden's Day.
Next week when you see a new post it won't include the words life, laundry, short, eternal, confessions, dad, stay - I promise. But for this week...
Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad is my first book. Its on sale now everywhere that books are sold in paperback and on your favorite eBook formats.
You can buy it today on Amazon, Barnes and Noble, iBooks, Amazon Canada, Amazon UK, IndieBound and more.
If you've read Life Is Short and enjoyed it, I hope that you consider writing a review at one of the online sellers listed above. And please share your experience with a friend (or twenty).
So that's pretty much it. The links will stay on Arden's Day, reader pictures will continue to scroll on the sidebar, and from time-to-time I'll share book information and reviews on the main page. All ongoing book information will be posted on the FaceBook page that exists for the book or on this sub page of Arden's Day.
This has been one of the most stunning and fulfilling years of my life and there is still lots more to come...
Thank you for everything!
Scott Benner
DexCom G4 Platinum: Follow Up
It's been three months since I first gave my impressions of the new DexCom G4 Platinum CGM and two months since I published a Second Look piece. Today it's time for a follow up...
Overall I am quite pleased to say that everything that I previously reported to you about the G4 still stands as true. Signal distance is vastly improved, insertion is less of an issue from a pain standpoint and accuracy is often spot on. What then you ask prompted me to write a follow up? I wanted to share my experience with DexCom customer service and how they handled my call to tell them that the thumb pad on Arden's receiver was breaking.
Before I get to the thumb pad I want say that not long after we began to use the new G4 I noticed an odd video noise on the screen when the receiver transitioned from screen to screen. It happens mostly when entering a BG, a garbled image appears as the receiver switches from one screen to the next. I never noticed a decrease in the receiver's accuracy so I assumed that the video noise wasn't a critical issue and decided not to call CS over what I deemed a cosmetic glitch.
A few weeks later the thumb pad began acting up. The thumb pad is basically five buttons, up, down, left, right and center. The donut shaped disc handles the directional clicks and the small nub in the middle, selects. Our unit's disc began to not go back into place after selecting down. The disc would rock as it should toward the down selection but then never fully return to it's starting point. I felt like it was only a matter of time before the disc became worn further. I imagined that soon instead of just getting stuck in the down position the disc was going to pop out. I let things go for as long as I could and then I called DexCom this past Saturday morning.
I explained that the thumb pad was loose and getting worse. The kind woman on the phone asked politely if I had dropped it, we hadn't. She verified my address, apologized that it wouldn't be able to ship until Monday and explained how I should go about making the switch once the new unit arrived. The entire call took less then five minutes. It was very pleasant.
It seems that I timed my phone call almost perfectly as nine hours later, as we were preparing to eat dinner for the first time at Harold's in Edison, NJ, (you may have seen the picture on FaceBook of Arden with our "slice" of cake) the thumb pad fell out completely. I used a piece of packing tape to hold everthing in place until Tuesday. Here's what the unit looks like when the thumb pad comes off:
Initially I wanted to be annoyed that the receiver had issues after such a short time, but instead I took a more reasonable position. New technology is prone to issues like this, early adopters take a risk in my opinion. As long as the manufacturer stands behind the product and doesn't make its replacement a headache, I'm okay with stuff like this happening. I wish it wouldn't, but I understand. I hope that my issue is either isolated or promptly addressed by DexCom. Who knows, maybe it already has been in more recent runs of the product.
If you are seeing this issue with your unit, It's my opinion is that you can expect it to eventually become a problem that will need your attention.
New OmniPod Pictures and Information
It's official! The next generation of the OmniPod Insulin Management System has been approved by the FDA!
I've just finished speaking with Sean Gallagher, Senior Director, Marketing for Insulet, person living with type I diabetes and OmniPod user. We spoke for a bit this afternoon and I have some fresh information about the new Pods and PDM to share.
The name remains the same: You won't be wearing the OmniPod G2 or OmniPod Lite. Just good old OmniPod.
Pricing: There will be no price increase for the new system.
Transition: Insulet has been working for "18 months" to make the transition to the new smaller pod "easy" and fast for us the users.
How the upgrade happens: Current OmniPod users will receive an email stating that upgrading is possible. All you have to do is contact them back to get the ball rolling. Sean stresses that the process will be super easy, fast and efficient. They are working hard to make the transition a pleasure.
When? When can I get them?: There is some training of staff, endos and the like that's happening now. Expectations are that those steps will be finished and the new Pods will begin being delivered in the first quarter of 2013. I know you feel like you've heard that before but this time the ball is completely in Insulet's court, they have control, I'd bet anything that this time frame is accurate.
More when: For customers that are currently under warrantee. Your new Pods will arrive after you've exhausted the stock that you have in your home. Upgrades will happen at re-order only.
Any insurance stuff to worry about?: Simply, no. If you happen to be outside of your warrantee there will be some steps to take between Insult and your insurance company but Sean assures me that most of that process will happen on their side of the equation, requiring only a minor amount of effort on your part. The man said, "easy" is their goal, I believe him.
Interesting technical stuff
- The insulin reservoir capacity remains the same even though the pod is smaller.
- I asked Sean, "how did your R&D people accomplish the size reduction?" He responded simply by saying, "they're brilliant!". The slightly more technical reasons however include, the insulin reservoir shape has been changed to an oval and flattened. Plus the new Pods require only three, instead of four batteries because of enhancements that lessened power requirements.
- The new PDM has a dramatically improved stated signal range of five feet, but between you and me, I've seen and used one during FDA required Human Factor Testing... I'd try backing up if I was you.
- The smaller Pods have a new feature called a 'pink slide.' When the cannula deploys correctly, it pushes a piece of pink plastic to be visible through a new, second window on the top of the pod's surface. You can use this together with the regular viewing window for additional confirmation of insertion. - Info and picture added at 5 pm on 12/14 after second conversation with Insulet.
Why the long wait:
I expressed to Sean that the long wait for the newer, smaller, lighter OmniPod made me wonder if they were ever going to see the light of day in the U.S.
Sean indicated that the Human Factor Testing requirement from the FDA was in it's infancy (my word) when they were seeking approval and that both sides lived through a learning curve. He did stress that he genuinly belives that the "process is valuable" and when I asked if it was fair to say that the process provided me (and you) with a better, safer insulin pump, he did not hesitate to say, "yes".
Sean closed out our discussion with two thoughts that I will share.
He hopes, for two reasons, that those of you that may be preparing to begin pumping with OmniPod don't feel as though you should wait for the new Pods to become available. His first point (that I can completely agree with) was simple. The current version is a great device. I can't argue with that. If you start today you will be using a wonderful insulin pump, one that has benefited many including Arden for years. His second point was a reminder that the transition to the new Pods will be so easy that it won't even cause a blip in your day to day life. So there's no reason to wait.
I'm choosing to include his thoughts, that you may read as marketing (and perhaps it is) not just because I believe in the company, but also because I know that Insulet is a small company. I don't know for sure, but I'm willing to guess that they wouldn't do well financially with a less then normal amount of new customers over the next three or so months. That's my honest take on this issue, I make no secret that I'd like Insulet and OmniPod to thrive, it's good for my daughter and for all of you that wear the pump.
Lastly:
Sean wanted all of us to know that he and Insulet appreciate all of our paitence during this long journey. He is thrilled by the reception that OmniPod receives in our community and is touched by the eagerness that the new generation OmniPod is being greeted with. He said, "I am happy and excited to put the new OmniPod into hands".
Now for the pictures, you know you want to see the pictures!
Hi-Res version are available in the Visual Record section of the blog.
I have good news about the new OmniPod for my Canadian friends right here