Two sides to every coin.

I wrote on Friday about my terrible low a week from yesterday. Wouldn’t you know? This past weekend, my BGs were all terrific. That’s a nice change from the past two weekends, which included a bad low (see Friday’s post) and a couple of wicked highs, punctuated by multiple glucose checks immediately followed by screams of “You have GOT to be kidding me!”.

This past weekend, of course, is how we want our lives to always be like with diabetes. Yet so often, when I have a few days in a row like this, I’m the first person to ignore it. Prick your finger, move on. For me, that means I miss an opportunity to pat myself on the back. It also means I miss the chance to go back and find out what happened.

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What went right? Were my basals dialed in perfectly? Did I bolus like I invented the term? Got lucky is more like it, because I had pasta salad for dinner last night.

Whatever the reason (or reasons), getting a handle on what works for me is often as important as finding out what doesn’t. Here’s hoping your research is coming from an equally good place too.
 
 
 

Let’s talk.

I feel like this must be Hypoglycemia Week or something. I’ve already read two excellent posts on the subject this week, which I’ll link to during my post today. First, let me share a few photos with you:

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I received these scrapes and bruises (plus a couple of bruises on my head) thanks to a Sunday night low that happened around midnight. I was alone in the house, and I fell down once getting to the kitchen, and once in the kitchen. I never lost consciousness, and everything turned out okay in the end. But I had a serious fog that lasted for a while. I also spent some time after cleaning up spilled juice and a broken candy dish, so I wound up getting about 4 ½ hours sleep before heading to work on Monday.

I should mention that I believe this low was a mistake on my part, borne out of frustration for a remarkably stubborn high the previous Sunday. I didn’t want to face that again, so I over bloused. When Allison Nimlos wrote of her Sunday low, she did a great job of describing, clinically, what I think happened to me on Sunday night too.

For me, writing about this now is more of a thought process, stream of consciousness thing rather than a “Look at my bumps and bruises, feel sorry for me” thing. Scraped knees, bruised elbows, and a bruised head just serve as outward reminders of what happened. But how do I talk about it?

When I put on a pair of shorts and go outside, what do I say to my neighbors when they ask what happened to my knees? Do I come right out and say what happened? If I do, I don’t want to invoke pity. I don’t handle pity well. I don’t want to draw attention to myself that way. But I also don’t want to admit to a mistake in front of someone who doesn’t know me well and doesn’t live with diabetes day after day. Because the truth is, I can have 364 great days of diabetes management in a row, and one bad night can happen anyway. Every day is different. I don’t want someone thinking that the bad night is the norm, or something they have to worry about.

It’s weird because I want to look like I’m handling my diabetes well, but I need to be realistic and recognize that I’m not perfect. I think this is the kind of thing that people mention when they talk about wanting to be “normal”. We just want to live our lives, and not do or show anything that makes us stand out. We just want to be seen as “normal”, when really, our life is already normal. For someone living with diabetes.

So we keep it all inside, which leads to frustration and feeds the feeling of guilt over what happened. And the feeling of being alone, because we’re keeping it all to ourselves. Let’s face it: I made a mistake. I can’t make that mistake again! If I do, I’m less than perfect! No one will appreciate me or love me if I’m not perfect! If anyone knows about it, they’ll know I’m not perfect!

Then we complicate things by thinking: What does it hurt if no one really knows? If I don’t talk about it, no one will know that even though I’m doing better than ever in my constant battle with this condition, I still screw up one percent of the time (or maybe two percent). Or maybe I do everything right and my endocrine system doesn’t cooperate anyway. But as long as I don’t say anything about it, they’ll think I’m sitting at 100 mg/dL all the time. Problem solved, right?

The hard reality is that if I’m going to own my diabetes, I need to own 100 percent of it. One hundred percent of the time. That’s really difficult to admit, and even more difficult to put into action.

But if I don’t, I’m being less than honest with myself. It’s hard to keep that up for very long without imploding. And if I’m less than honest, less than forthright with my story, I miss the opportunity to share how incredibly dangerous living with diabetes every day can be. I miss the opportunity to explain why new technology, new drugs, and new therapies are crucial to saving lives, and in our country, saving money.

Understand me: It is really difficult for me to share a story like Sunday night’s outside of a forum like this one. But… It is very, very important for me to do so. People need to know how serious diabetes is on an everyday basis, and the damage that it does. I think many don’t know, or they forget. Not everyone is going to give us a pass for one slip-up. But if we’re honest with ourselves and others around us, the truth is that some people will. I also know this: Every generation that doesn’t bring their diabetes out in the open means another generation goes by thinking everything is just fine with us. And not understanding when it isn’t.

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I’m doing the best I can. But every day is different with diabetes, and so every day the potential exists for me to kill myself with too much or too little insulin. Sometimes that happens because we can’t get the supplies we need to test our blood sugar as often as needed. Sometimes that happens because people are over 65 and Medicare won’t approve a CGM. Sometimes that happens because my body used insulin a lot better today than it did yesterday, and different from the way it will use it tomorrow.

And sometimes, it’s because I made a once in a year (or five years, or ten years) mistake.

I’m not perfect. Diabetes is unpredictable.

Smarter, more accurate technology will help minimize those errors and keep me out of the emergency room. Better coverage for CGMs will help seniors live longer, more meaningful lives. Better drugs and delivery systems will help me live a more normal life. More diabetes research will help today’s children achieve more than anyone can imagine. And why not? Why shouldn’t they?

I know… life is tough, and we all have our problems. Why shouldn’t we all have the same opportunities? My pancreas has failed. I am not a failure.
 
 
 

Decision 2014: Pump update.

So… A quick update on my pump search. As I mentioned back in May, the warranty has expired on my Minimed Revel pump. I still have a fair amount of supplies on hand, so I’m taking a little while to learn more about other pumps out there on the market. You never know… I might re-up with Medtronic. But I don’t want to do so until I’ve had a chance to see what else is out there.
 
 
I may or may not have mentioned this, but I did get the chance to check out the Animas One Touch® Ping® during my last clinical trial. It seemed to work pretty well. I like that it’s waterproof. I also like that insulin bolus delivery is exceptionally fast compared to Medtronic. To be honest, that’s not a deal breaker or a deal maker for me, but it’s something I noticed. Another thing I noticed was how much there is on all of the menus on this pump. Just to prime and begin insulin delivery using this pump requires a lot of button pushing. Again, not a deal breaker, but if all things were equal, that’s something that could sway me toward a different pump. Overall: Good experience.
 
 
That brings me to Tandem®’s t:slim®. I met last week with one of the local reps for this product. Like the other pumps I’ve inquired about, Tandem is not going to let me do a test drive on their model. But I feel like I got the next best thing when meeting with this rep. We spent over an hour talking about everything t:slim. This was pretty unscripted, though I suppose a couple of his answers were because they had to be. The best part was, I was able to handle the pump (which I had not been able to do up to that point).

I practiced filling the cartridge, priming, setting basal rates, programming a bolus. Our conversation was all over the place, which in this case, was good for me. He showed me how specific things worked, and if I had a question out of left field, I was able to ask it and get it answered before we resumed what we were originally doing. It wasn’t a power point presentation; it was two people talking about an insulin pump.

The other thing I liked about this rep was that he didn’t shy away from the difficult issues. Let’s face it: There isn’t a pump on the market that doesn’t have something less than wow about it. But when we talked about those things, I got honest answers. Which is both refreshing, and the decent thing to do.

I liked a couple of additional things related to this pump. I like the bolus reminder. Set your bolus reminder and it will alarm you if you forget. I also like the temperature gauge that can tell you whether you might be in danger of skunking your insulin due to extreme cold or heat. Again, not deal breakers or deal makers, but nice features nonetheless.

I also like that the battery charges like a phone or tablet, rather than requiring the replacement of a AAA battery every month, which I’m doing now. You might not think that’s a huge deal, but it’s at least a minor deal to me. Changing a battery every month isn’t that difficult. But in the time I’ve had my current pump, I’ve gone through 50 or 51 of them. Multiply that by who-knows-how-many insulin pumpers out there, and you get an idea of how much we’re filling our landfills with dead batteries that we don’t need to use anymore.

Bottom line: I like the t:slim, for the obvious sexy reasons. I’m not in love with the cartridge fill, so I’d have to convince myself it’s not a big deal. And Maureen thinks that sliding the cartridge into place in the way the pump works would drive me crazy. She cites my issues with the battery and SIM card on my cell phone as an example. Any honest answers from current t:slim users would be helpful and very much appreciated.
 
 
Next up: I’m looking into the Asante Snap. According to their website, I might actually get to try one out! More to come as I continue to explore the world of insulin pumps.
 
 
 

July #DSMA Blog Carnival: What would YOU change about diabetes?

The July blog carnival topic is a simple, yet interesting one. I could take this in many directions:

We usually talk about how we deal with different aspects of diabetes, or things that would help us deal with those aspects. This month let’s change things up a bit. We’re going to revisit a question from the Open Chat on June 18th and come up with something about diabetes to change. That’s right, we want to know . . . .

If you could change one thing about diabetes, (besides not having it), what would you change? Why?
 
 
I’m going to answer this a little differently from what you might expect. What would I change?

I would make it so no child would ever be diagnosed with diabetes.

I don’t have any kids, but I always wanted one or two of my own. I know many D-parents will scoff at this, but I honestly don’t know how I would deal with a child’s diagnosis. I know, ultimately, you do what you have to do for your children. That’s the way it should be. But man… even today, I just ache every time I read about another kid added to our little club. No child should ever have to face my kind of life so early on in their own development.

And what about the parents? I’m really just guessing here, but I’ll bet that something like a child’s diabetes affects the parents way more than they ever let on. Sending their child off to school or camp without knowing how their day will turn out. Communicating with the insurance company to get durable medical or prescriptions straightened out. Setting the alarm for the middle of the night so they can get up and check their kid (or kids), every single night for as many nights, weeks, months, and years as it takes. No parent should ever have to face this kind of burden.

And these are the problems of someone who has access to care and insulin and the latest medical devices, which, as we know, isn’t always the case.

I was lucky enough to be diagnosed Type 1 as an adult. By the time I was diagnosed, I had my own job and my own insurance. I had lots to learn and a lot of work to do, but at least I had a bit of a head start compared to the children who live with diabetes. Kids and Parents are blind-sided by this kind of news– at a time when a child is growing, learning, experiencing all the joys of life, they now have to add fingersticks and carb counting and bolus calculations and infusion set changes. There is nothing that’s right or fair about that.

So if I could, if I couldn’t eradicate it entirely, I would make it so parents would never have to hear that their child has been diagnosed with diabetes.

Unfortunately, I can’t do that. But… Do you know what I can do? I can help educate people. I can speak out for better healthcare and greater access to care. I can promote greater understanding. I can participate in walks and rides and other events that help raise money to fund bigger research, better tools, and hopefully, a cure. I can write my elected officials. I can support the amazing D-parents who are courageously telling their story. If I can’t remove diabetes from my vocabulary entirely, I can at least work toward making life a lot better for the kids.

Even though it might cause an issue with the naming of certain conferences around the country, my wish is for no more children with diabetes. If I ever had a child of my own, I’d want that to be what I’d change. I’d want that to be my legacy.
 
 
This post is my July entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/05/may-dsma-blog-carnival-4/
 
 
 

Changing faces for a changing landscape.

Here are some random thoughts for you to chew on this weekend. I’m not suggesting anything here, just doing kind of a “what if?” riff in my head and spilling it onto this page.

I was thinking yesterday of the change at the top happening at both JDRF and the American Diabetes Association. Both CEOs are stepping down. Jeffrey Brewer has in fact already stepped down from his post at JDRF after four years, replaced by Derek Rapp. And Larry Hausner is leaving as CEO of ADA at the end of the month. No replacement has been named yet.

The American Diabetes Association and JDRF are by far the two largest diabetes organizations in the United States. Sometimes competing, sometimes not, they both look to raise both money and awareness for their cause. In JDRF’s case, “Less Until None” for Type 1 patients. And For ADA, to “Stop Diabetes” of all types, though almost by default, a lot of their mission is geared toward type 2s, who represent the overwhelming majority of diabetes patients worldwide.

I thought about this yesterday, and then thought of other big organizations fighting for recognition, donor money (both governmental and private), and volunteers to aid their missions. Love them or hate them, Susan G. Komen is the face of breast cancer awareness. MDA is the go-to group for Muscular Dystrophy. The American Heart Association is, for us in the States anyway, the reliable resource for all things related to heart health.

Yet I can remember, more than once, asking someone to donate to a JDRF fund raiser and being told “Oh, I already gave to ADA”. And Or vice versa.

Am I suggesting that ADA and JDRF merge their missions into one huge conglomerate of an organization? No. Never.Gonna.Happen. For about a thousand different reasons. JDRF is an international organization, ADA is only U.S.-based is the first. The other reasons are so many and so varied that I don’t really need to repeat them here.

But there are a number of facts that are changing the landscape of the diabetes community. Among them:

– An increasing awareness that the diabetes community has spent way too much time and energy in silos, leading to distance and even animosity between types.

– Recognition of the fact that this is changing, and Type 1 versus Type 2 versus insert-your-type-here is a dead end going nowhere.

– A widening awareness of D-stigma, and a growing desire to squash it like a bug on the windshield of a speeding automobile.

– The growing role of social media in our community, and how, like Moore’s Law itself, it is changing roles, perceptions, the number of contributors, and sources of income faster than ever before.

I wonder if this moment in time represents, in a way, a chance for these two organizations, and the greater diabetes universe, to look at their missions in a new light. How can we work together? What can we learn from each other? And certainly: How can we help patients people today while planning and adapting for the future?

I’m not sure these questions can be answered easily. But I think the best time to ask them may be right now.
 
 
 

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