» 2011 » March Strangely Diabetic

Lessening the Cognitive Load

March 29, 2011 — Scott

At the JRDF Government Relations Day(s), there was a lot of discussion about the Artificial Pancreas Project (APP) and it’s benefits. I am a firm supporter of the APP as I believe it will help patients obtain control much sooner than they could using current techniques/technologies.

One of the points that was made several times was the amount of cognitive load a type 1 diabetic has to deal with on a day-in-day-out basis. We are constantly counting this, calculating for that, the list goes on and on. This is one area where the APP could really help alleviate some of the burn-out we have all experienced, of which our daily mental processing is certainly a major factor.

But, as with every good thing, there can, unfortunately, be a down side as well. However, I believe that it is one that can be overcome. Let me give you a couple of real life examples of things that have actually happened to me involving the various components of an artificial pancreas (insulin, pump, cgms, etc).

Last week I blogged about how my insulin had “gone bad” somehow (FYI, it contains just a bit of profanity, you’ve been warned!) ironically enough at the JDRF event itself. So there is one point of potential failure.

Next, let me described something that happened to me just over a year ago. In January 2010 I received a Dexcom CGMS, I love the device but our relationship had a rocky start. Rocky as in having to have 8 out of my first 12 sensors replaced. Since then, things are much better except for one thing that I believe is a major safety issue.

I am talking about the ??? status that appears every once in a while. This happens when the receiver doesn’t quite understand what the sensor is saying. From a technical point of view, this is normal and the device is working as it should. However, from a patient point of view, the device is not functioning in a manner where we can use it. The safety issue arises because the Dexcom will not alarm to let us know it is no longer monitoring our glucose; no matter how “normal” the ??? are, from my perspective the device simply is not working at that point.

I have hypoglycemic unawareness and the Dexcom has saved my rear-end plenty of times, and living alone most of the time I am very grateful that I have one. But there is one time where it didn’t.

I regained consciousness in the middle of one cold winter night. I knew that I wasn’t just waking up for a couple of reasons; one, I was drenched in sweat and two, I was paralyzed. As in totally unable to move. I knew I was was in serious trouble, drifting in and out for lord knows how long until I was able to get a hold on my pump. I couldn’t operate it, but somehow had the sense to pull the cartridge out so the insulin delivery was stopped. This may have been as close to being killed by diabetes as I had ever been.

When I was finally able to reach the glucotabs on the nightstand, I looked at the Dexcom. It showed ???. I have no idea whether it alarmed and I just didn’t hear it or just plain stopped working and didn’t warn me of that little fact. This is another potential point of failure.

The APP will contain multiple components that all must work flawlessly for it to truly be effective. An undetected failure in any one of those components could lead to tragic consequences.

While the device maybe able to do a lot on its own, we will still need to be able to do everything we do now. As in count carbs, test our levels, correct highs and so on so that we will be able to monitor this device to make sure it is working properly. This will be a machine and, no matter how rarely failures occur, they will happen.

And this is where “lessening the cognitive load” comes in to play. Yes, it has the potential to make life a lot easier than it is now and that is incredible. But we must make sure that we still know how to do things on our own, without the aid of that device to ensure that tragedies do not occur.

As I’ve said, I’m a proponent of the APP, but as with everything, there is a trade off. The trade off here is making sure that we are trained and have regular “refreshers” to make sure we know how to handle that “cognitive load” when we have to; so we don’t become a tragic victim ourselves.

Scott

Today’s recap of this long-winded post: Whatever tools are available, don’t become lazy about being able to do it all yourself!

** Disclaimer: The JDRF covered my travel, hotel and meal expenses for this trip to Washington, DC. They did not ask me to blog or not to blog about my experiences and these were my own thoughts and opinions **

Posted in dblog diabetes support. 2 Comments »

It’s Time

March 23, 2011 — Scott

Today’s post has nothing to do with the Juvenile Diabetes Research Foundation Government Outreach Day(s) and I’ll try to keep it to a minimum of cursing.

Mom has been in a skilled nursing facility (SNF) for about 7 weeks now and they have informed us that she is ready to come home. Friday is when they are kicking her out the door!! And, who knows? There may be cupcakes and sprinkles.

Except for a very few individuals and situations (which were all taken seriously and resolved by the facility), mom’s stay there has produced incredible results. Between the therapists and mom, she looks better than I have seen her in probably a year and more lucid as well. She’s worked very hard to regain her strength and I am very proud of her for her accomplishments.

She was in ICU for a few days in late February for pneumonia, but recovered and returned to the SNF. I was honestly suprised at how happy the staff was to see her back. I thanked one them for that and, with a sad smile, she said “We’re happy she came back because so many don’t”.

With all my focus having been on my mom, that made me take a closer look at the people in there. It is a mixture of hope, joy, grief and acceptance I think. Some know when they get there what the future holds. Others, like my mother, aren’t so sure. Either way, you get to know a few of them a little and you always take a minute to say hi and ask how they are and you are greeted with a smile in return.

One of my sister’s is coming to stay next week and I will, of course, be there overnight. We’ll have someone also come during the day to be with her while I am at work. And there will be therapists, nurses, etc at various points during the week, so I’m not really too worried about the daytime hours after my sister returns home.

It’s the night’s when it is just her and I that worry me. Will I be able to care for her properly? Do I know everything I need to know? Had all the training I need?

Will she wait in the evenings and let me prepare dinner, or at least help, instead of doing it alone? I can barely keep my medications straight anymore, will I be able to make sure her pill box is properly filled and ready to go?

All the details of doctor’s appointments and making sure she has someone to go with her as I won’t be able to take that much time from work (I work about 45 minutes from home now).

I’m usually out the door by 7am, if she’s still asleep should I wake her? If I leave for work, can she handle her own breakfasts?

What if she should happen to fall when no one is there with her, will she be able to push the button on her pendant?

If I am there, will my numbers always be so that I can help her and not need her to help me?

So many unknowns. It’s a lot like diabetes in that regard it seems, so I guess I tackle it in the same manner. Learn from every single experience. Do it because it not only needs to be done, but because I want to.

Posted in Uncategorized. 11 Comments »

The Blame Game

March 21, 2011 — Scott

Once again, I am going to dive into blame, guilt and diabetes. But for the first time, I’m not blaming myself or feeling guilty about having diabetes.

This time I am blaming insulin, and doubt if that little b***h feels one bit of guilt. And therein lies the story

Circa Mid-February, 2011

Time for a new vial of insulin, like countless times before. My numbers had been running higher than normal for the last few days and I had just attributed that to stress (on a scale of 1 to 10, my stress was rated at a 3,432 on the Holy Crap, You’re Stressed scale). And on into February, the stress increased and my numbers trailed right along. After a few more days of this, I changed by Dexcom High Alarm from 200 to 300 because I was fucking tired of hearing it go off.

On into early March, another new ~~vile~~ vial and the numbers stay consistently high, running right around 200. Then comes the weekend for the Juvenile Diabetes Research Foundation Government Outreach Day(s) and time for the DOC Blogger roundtables (There were actually 2 roundtable sessions, but the second hasn’t found it’s way onto the intrawebz yet). A little stress before a presentation is normal for me, but the numbers weren’t. I’d been through 5 or 6 infusion sets by this time and was running a +80 basal rate and my numbers continued to edge upwards.

After staying up way too late with my blogger comrades I was rewarded with an alarm. Not only had I hit 300, but I had an up arrow as well. Realizing that something was really wrong and that I was in the “box” (I’ll explain that in today’s snarky comment) it finally occurred to me to switch to my back up insulin vial. And that did it. 3 hours later I am at 116. I had been spilling large ketones since I switched at about 2am and assume I still was as I went to breakfast, trying to convince my body to go back to burning glucose. I bet the vial that I had been using before this was from the same lot and had been contributing to the high numbers I had been seeing for weeks.

And of course, the session we bloggers had with Jeffery Brewer was that morning at 9am. I was definitely not on my best game and felt so bad once it was over that I headed out almost immediately. I therefore missed the group pictures (word on the street is that I’m going to be photo-shopped into one…). Kelly Rawlings tweeted that they looked for me but thought I had “disapparated”, to which I replied “more like DKA-apparated”.

Come 10am I had to go to the bathroom for the first time since about 3am, despite the fact I had been drinking as much water as I possibly could, and I was still spilling ketones. My sugars though were holding under 150. I probably should have gone to the ER, but they would have probably wanted to admit me. I really didn’t need admission, I just needed a few bags of fluids and a little time and just did not want to have to argue with a doctor about it; I absolutely did not have the patience for that discussion. Granted the ER would have made me feel better a lot faster…

So here’s you, little fucking bottle of insulin, you made me realize that I need to make sure I’m not in the box when I’m having odd issues. Fucker.

Scott

Today’s snarky comment: I hate the phrase “think outside the box”. The trick is to realize you are in the box in the effing first place, moron!

Posted in Uncategorized. 17 Comments »

What’s $1,900,000,000 Between Friends?

March 18, 2011 — Scott

Yes, that is $1.9 billion. A sizable chunk of change. A plethora of moola.

And that is how much the JDRF Government Relations Office has raised thru the Special Diabetes Program thanks to volunteer advocates telling their stories of how diabetes has affected their lives and thanks to the Senators and Representatives in Washington, DC that listen to those stories.

These dollars are part of the mandatory spending portion of the federal budget; that means they cannot be cut without a separate Act of Congress to explicitly remove them.

Now what really surprised me about that number is how little I have heard about it and, speaking with some of the advocates that attended the JDRF Government Relations Day, getting local chapters to publicize that is hard. The chapter directors are not compensated based upon that number, so getting them to throw a bone to the JDRF Government Relations Office (GRO) about their efforts can be like pulling teeth.

Now here is what I think the local chapters may be underestimating: The effect of knowing that $1.9B has gone directly to cure research only over the last 10 or 12 years. The program sends federal funds to the National Institute of Health (NIH) (more specifically the National Institute of Diabetes and Digestive and Kidney Diseases) and all the funding is mandated by Congress to be used for cure research only.

As someone who has been very critical of the JDRF; that fact is important to me and it makes me want to be more involved at not only the federal level, but at the local level as well. And guess what? I spend most of my time here, not in DC.

Now you may be asking yourselves “Interesting Scott, but how does the Artificial Pancreas Project (APP) qualify as a cure? Seems to be just more of the same with added automation.” (I still find that level of automation a bit concerning, but I’m old and set in my ways)

I have two responses to that

If you delay complications you dramatically increase the number of diabetics that will survive long enough to see a cure and will also see a dramatic increase in their quality of life. Not to mention the potential reduction in healthcare costs for all of us. Right now 1 in 3 Medicare dollars is spent on diabetes.
When a cure is found, the APP may be a component of that. It is much easier for the body to heal when sugars are controlled. How ever our beta cells are replaced, be it by regenerative medicine, stems cells or whatever, those cells will need a healthy environment to flourish.

And maybe, just maybe, the APP device(s) will have a “special alarm” sound that will go off when it hasn’t pumped you any insulin for a day and two and your sugars have been normal. Wouldn’t that be cool? Walking down the street and suddenly hearing a roaring crowd come from the device tucked into your clothes. (PS I think it should do a Mission Impossible countdown as well. “This device shall self-destruct in 10 seconds. 9 Seconds …” but that’s just me)

As an Adult T1, that is a number that I would be very interested in more hearing about. The APP is really the first “message” the JDRF has had for the adult audience; it is something all diabetics can take advantage of and, if the FDA would get off of its butt this may happen soon.

Now for once, the advocates weren’t after federal funding. They were simply asking their legislators to sign a letter urging the FDA to speed the approval of the APP for large-scale outpatient trials. That right, boys and girls, outpatient trials; as in let’s see how this bad boy does out on the streets where we live our lives.

The effect that the GRO and the advocates bring to Washington is simply amazing. There were 500 meetings with congressional offices scheduled for this event. That’s a huge accomplishment and I want to thank all the JDRF advocates that made it happen.

Hopefully, more local chapters will share this information with everyone they can.

This the first of several posts that will appear about this event

Scott

Today’s snarky quote:

“Today I am not here to ask you for $300,000,000.” – brilliant JDRF advocate to their legislator

Posted in dblog advocacy jdrf diabetes, Uncategorized. 4 Comments »

JDRF Government Relations meets the DOC

March 15, 2011 — Scott

This is a quick post and I am actually trying to do it from my iPhone whilst typing with my thumbs. I’m running on a lot less sleep than normal but I did find Diet Coke in the basement cafeteria of Longworth Building as I wait for a meeting with MO Representative Cleaver. It’s a good thing spelling is opshunal and that my thumbs are somewhat opposable

I think overall this has been a really great experience and I have several topics rolling around the empty portions of my brain (of which there are also several) that will appear over the next week or so.

I want to thank the DOC for their support and keeping up with the twitter feed. I was also amazed, and a little humbled, to see several outstanding blog posts over the last couple of days from friends that were not here but based on the tweets coming out of the event on the #JDRFGovDay twitter tag. I’m not sure I have ever heard of that type of an occurrence before, let alone been a part of one.

I would also be remiss not to thank the JDRF, especially Mike and Hassan, as well as all the advocates and other staffers for making us feel welcome.

Meeting Kerri, Kelly K, Mike H, Allison, Chris, Dayle, Hallie, the Pumping Princess and Meriam for the first time and catching up with Cherise, Scott J, Kim, and Kelly R has been totally awesome. Honestly, I met and spoke with so many great people, it was amazing

I was part of a DOC presentation with Allison, Kelly R and Mike that seemed to go pretty well. The audience was open to what we were saying and asked some very intelligent questions. Thanks to all of you as well!

We had a chance to meet with Jeffery Brewer, JDRF President, on Monday morning. I like the man. I believe that the envisioned expanded mission of the JDRF has an incredible opportunity to change so many lives for the better.

When asked about the problems that some adult T1s experience with various local chapters, his response was short and sweet. “That’s going to change”. No excuses, no being “unaware” of the problems. In those four words he acknowledged us, our needs, and most importantly; took personal ownership of the issue.

I really believe this will happen, but we all have to realize that it is going to take some time. They understand that they need to deliver on this; but the reality of it is that there is a lot of cultural “inertia” to overcome and that is going to take time, patience and effort from us as well as the JDRF to succeed

That’s enough for now; my opposable thumbs don’t feel quite as opposable as they did when I started this..

Posted in Uncategorized. Tags: advocacy, diabetes, jdrf, type 1. 10 Comments »

Mr. Strange goes to Washington!

March 11, 2011 — Scott

Jimmy Stewart stars as a… wait… I think that’s already been done… Darn the luck!

But seriously, I have been invited, along with a list of other bloggers much more distinguished than I, to the JDRF Government Day in Washington, DC.

The “day” is actually a 4 day event that brings about 150 JDRF Advocates together for advocacy training, networking, and to put diabetes on the radar screens of members of Congress by meeting with them to tell them how diabetes effects the lives of so many people in their own districts.

The other bloggers and I will be participating in a round-table discussion focused on the Diabetes Online Community and how we and the JDRF can leverage each others strengths in a way that can benefit us all.

I’ve been pretty hard on the JDRF in the past for seemingly ignoring those of us residing in the Adult Type 1 world. But a few conversations that I’ve had with the JDRF has made me feel that there is a change for the better in the works.

JDRF President & CEO recently did an interview with DiaTribe describing the new support functions the JDRF will be offering for the Adult Type 1 Community through their chapters.

This new outreach is still in its infancy and is a totally new mission for many chapters. True mentoring programs were few and far between; you might find a program to “mentor” people on how to help with fund-raising but not find one on how to help to cope with the day-to-day of diabetes. Previously, Adult T1′s were viewed as either a volunteer, a donor, or a fund-raiser.

Not as individuals needing the support of other diabetics with the mental and emotional baggage diabetes can bring. Nor were we viewed as mentors; people who could bring years of experience to the table. People who have already struggled through situations and can offer feedback and advice to those that are just reaching those situations as they move through life.

And just so you know, I understand that I do not have the letters MD, CDE, MSW or even a Jr. after my name. But I can still listen, I can tell of my experiences and how things have affected me over the years. We all can.

If you have any questions or topics that you would like to see discussed, submit them to JDRF Advocacy staff (@JDRFAdvocacy) on twitter and follow the discussion there on Sunday, March 13 at 2pm Eastern by searching for the hashtag #JDRFGovDay.

There are 9 bloggers attending and we will be broken down into two separate discussion groups. One of the round-table discussions will streamed live via JDRF Advocacy USTREAM channel. The recordings of both discussions will be archived and available for later viewing.

We will also have a chance to speak with Jeffery Brewer, President & CEO of the JDRF and Dr. Dick Insel, Chief Scientific Officer of the JDRF. So please submit questions you might have. You can also post any questions or topics here or drop me an email.

** Disclosure: The JDRF is covering the cost of travel, hotel, & meals for this event. I am not representing my local JDRF chapter, but am going simply as a member of the Diabetes Online Community. Any comments or blog posts I make about this event will be my opinion and will not be affected by the invitation to this event. **

Thanks for stopping by and have a great weekend!

PS: This is the first event of this type that I have been invited to participate in and, honestly, I’m feeling a little out of my element. Over the years, I have made presentations to folks who could just look at me and say “Get out, you’re fired” and haven’t felt even a tinge of anxiety. This one has me feeling a bit edgy tho. Oh well, I imagine I’ll be just fine once it gets started…

Posted in Uncategorized. 13 Comments »

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