Back in the good (?) 'ol days...
Most diabetic blogs and bloggers seems to come from the US. That's not so surprising. After all it is the birthplace of the internet, where there has been the most IT innovations and the largest English speaking country. However, for me it is also good to hear from someone living in Europe. Cassie from Belgium, I therefore appreciated your comments. And oh - also I am planning to move to Belgium this summer:) I will move to Leuven which is only half an hour from Brussels. I will attend the 12 month MBA programme at Vlerick Leuven Management School.
Cassie also wrote some questions about doctors and how the remote services from a US Certified Diabetes Educator (CDE) works for me. I do have a doctor in Paris, but I use him only to write prescriptions. He is great at that;) He is also a likeable chap.
Doctors have (almost) always disappointed me when it comes to helping my diabetes. The only exception was some of the endicronologists I met when I lived in the US. It is a complicated disease/system to control, and the general doctors - and most specialists - I have been in contact with in my 26 years as a diabetic, have neither had the time nor the knowledge to help finetune a lifestyle of living with diabetes with insulin, carbs and exercise. It takes lots of time, energy and empathy from someone.
With a diabetes remote consulting service (Gary Scheiner and Integrated Diabetes), I feel I have someone that has the expertise, and that takes the time needed to do the finetuning. I also find empathy and understanding that I ususually do not see in non-diabetics. One example is the last endocrinologist I saw in Paris. He wanted to take my pump away and put me on lantus / humalog shots. Clearly, that is what *he* felt comfortable with. I felt comfortable dropping him, and the hospital (thank goodness I had a choice!)
The consultations with Integrated Diabetes happens once a month over the phone, and in addition I can email him logsheets or questions if I have something I want their feedback / input on. This adds another convenience: no time spent in waiting rooms. Oh man, do I have stories about that. I must have spent months in waiting rooms. The longest was in Norway back in the '80s. There we had no choice of doctors. The hospitals were socialist controlled - no freedom to choose either a hospital, nor a doctor. Independent doctors/hospitals were illegal, so there was no CDE equivalent. Doctors in the state hospital were semi-randomly assigned, which for me meant a new doctor at every visit. The wait was typically between 2 hours and 4 hours in order to meet a doctor for 10 minutes to half an hour. Oh well, at least it gave me a doctor's note to take off from school for the day. I'd simply arrive 2 hours late and with a book...
New logsheet
I now have used the new simple logsheet for 4 days. I decided to review my logsheets every Sunday morning. Even, with this simpler system it will need some willpower. I like sleeping. I also like playing with my kids / wife. But as I see it, this should not be a question of one or the other. I plan to do both. Will it stand the "tests of time"? I don't know, but so far so good...
This is what it looks like for me after the first 4 day review:
I have the following observations:
1) 9 lows, 15 "normals" and 6 highs.
2) Some are due to other factors than the carb bolusing & basal rates. Carb guessing is a big variable for me. I added a "comments" column to the sheet to reflect this.
3) My post breakfast looks a bit low and my pre dinner a bit high. I'll wait to do any adjustments until next week, when I have more data...
Logsheets (part 4)
I talked to my CDE about my logging. Or rather my lack of logging.
We agreed on me using a different, much simpler, logsheet. The idea is to spot the trends in my values instead of tracking all the things that happens. I will therefore only log my BG values, and for now drop writing up food, exercise and other values.
Oh, and I should alsoo let you know that my CDE is Gary Scheiner. He is a T1 diabetic himself, and his remote services at
integrated diabetes is something I strongly recommend if you are looking for expert advice!
Newcomer...
I have a son!
He arrived on the 6th of May, and he is in good shape, weighting in at 3600 grams and 51 cm.
Both he and my wife are doing OK, and we are so very happy to have him with us.
Another reason to reduce the damage of diabetes on my life...
Continues Glucose Monitoring System (aka 'Yippee')
I feel so very happy: I just received the news that I will get my hands on a CGMS system: the
DEXCOM STS system. Yippee! I have hoped for this for at least a year!
What can I do with one of these babies? Well for starters I plan to:
1) set the low alarm. If this baby works it will warn me every time I go below 80mg/dl. A life saver.
2) set the high alarm. Can I say goodbye to enduring blood glucose levels above 200?
3) analyze rises in BG levels after each meal. How long before my breakfast
pain au chocolate should I bolus to avoid a spike?
4) get readings on the fly to verify if I am in the OK. Furthermore I will see if I am heading towards the non-OK. This CGMS has a 1 hour, 3 hour and a 9 hour graph.
5) get high or low alarms during the night... One of my favourite bands,
Cake, sings "when you sleep, where do your fingers go? " For me it is "when I sleep, where do my BGs go"?
I don't know exactly when it will arrive but I can't wait!! I'll keep you posted...
Logsheets (part 3)
Since my last post I have received a few comments and I really appreciate it!
Megan, thanks for your ideas! I do sometimes enter the carb information in my Ultrasmart. And by the way: Ultra-smart!?! What marketing whiz came up with that? The machine is about as smart as a toaster oven. I like this meter, it is fast and efficient, and it lets you enter useful data. But it is not smart. For periods I enter what I can (carbs, insulin, exercise). However, I am currently not doing it. The reason? I get tired of all the button pushing in order to enter data. I also find it restricted in that I cannot enter any notes (for example: "bicycled for 45 minutes" or "low caused by delay between bolus and dinner"). In addition, it does not have a nutrition database.
Here's one idea for the company in order to put some "IQ" into the machine: put a bolus wizard in it. At least then there is few or no buttons to push to enter the insulin dose. In addition, a wizard could be of help to many diabetics out there.
Scott, great suggestions! I looked at "my other checkbook" and I like the size it comes in. One of the problems I have with my current log sheets is that they are in single sheet A4 format. Not exactly the best for carrying with me... Just like you I am principally against logging on paper. It is such a waste NOT to enter things digitally. When it is in a digital format you can do so many cool things with it!
Even a bigger waste is that my meter does not talk to my pump, my pump does not talk to my PC , my PC software does not print out useful logs, and none of the systems I have contains
all the info I want. It's quite surprising considering we are in the 21st century. Even more surprising is that there must be many (hundreds of thousands?) of geeky diabetics out there hungry to buy. I wonder what is holding back the medical companies from finding a customer oriented solution?
Could it be the same reasons of why my MM512 pump does not talk to my PC? In this case the reason is not that the engineers do not know how to implement it. They do. And in addition they have created it. Instead it lies with Medtronic and the regulatory affairs in Europe. Medtronic do not want to sell the software to me because I currently live in France instead of the US. They do not want to pay the price of approving it here, providing customer support etc.
So Megan, for my next pump I am also considering getting an Animas or a Cozmo!
Logsheets (part 2)
I have a new goal: to master my overnight BG values. The first step towards this is that I write a decent logbook. Using this, I can analyze what goes wrong and then take actions. This is where my blocking point is today. I find it time consuming and awkward to keep logs.
This is how I do it now: I am using a Medtronic 512 pump (where all my insulin boluses are stored), and a Onetouch Ultra Smart meter (where my BG values are stored). I transfer the BG results to a Lifescan OneTouch software on my PC through an interface cable. Then I enter the insulin values, and carb values manually. Finally, I step through the PC programme and write everything on a paper logsheet, including exercise, meals, irregular events (most of my life seems to be irregular)
Needless to say the process is painfully slow, and with data in 4 places (pump, meter, my PC, my head, and on paper) , I sometimes forget to list events that might have affected my results.
So now I am looking for a new way to do this.
I’m thinking about going digital, carrying a pocket PC with a program for diabetic logbooks (there are several out there), and would appreciate any feedback from other diabetics on how they do this. Are you happy with your logging?
Logsheets (part 1)
My latest "tattler value" (HBA1c) just came in the mail: 7.0%. This value does not surprise me, rather it (slightly) disappoints me. My last one was 6.3%...
The good (great) news is that I have much less lows. The bad news is that I don't really know what causes the rise.
I suspect it is caused by a decline in overnight BG values. After all, if the night time BG's are high, it means 1/3 of the days values are bad. Assuming, off course, you sleep a decent 8 hours per night. And if the overnight basal rates are good, and the evening meals matches the evening boluses, it should be a relatively easy win to have stable overnight BG values. Night time, after all, provides a stable environment: no exercise, no food, no food... The only problem is I have no logsheets of what my BG does overnight.
How much time do you spend managing your diabetes every day?
This question was floated on the
insulinpumpers.org mail list a while back. The answers ranged from the exhuberant 24/7 to the equally surprising 0. Surprising because it came from guys under great control. I find myself somwhere in the middle. Off course I spend some time on giving boluses, counting carbs, taking BG measurements and changing sites, but this is not really taking that much time (I guesstimate about 30 minutes per day).
What takes more "resources" is that I always monitor myself for signs of highs or lows. So, in a way, it is 24/7. This monitoring is not always concious. Nevertheless, it is there. Sometimes it interupts me. In the middle of a good movie, for example. When I take my BG it shows me I need a correction bolus. Sometimes it gives false warnings. Often it warns me correctly. It always manifests itself when I change from doing one activity to another. Before I start writing a blog, for example. It probes the question: how do I feel?
Tired (often low)? Hungry (sometimes low)? Energetic (often meaning I have a "solid" BG (180 220))? Cold (dropping bloodsugar)? Thirsty (high)? Like Peeing (high)? Dizzy (low)? frustrated (low)? Sad (low or high)?
These feelings are all completely natural. Most of the time the diabetes is not the only reason, nor the main reason. For example, I can be thirsty and frustrated at the same time (what do you feel after waiting more than 5 minutes for a beer at the local bar?)
It is like a subroutine in my brain. Sometimes it wakes me up during sleep. At times it has saved my life. It never goes on vacation. And untill I have a Continous Glucose Monitoring System hooked to my hip, I will not let it.
Back on track. But to where?
I received the new pump, as expected last night. What a relief it was to hook it up... As I said in yesterdays post my replacement pump is a Paradigm 511. This is one version lower than my regular pump (I use the Paradigm 512.)
The 512 is much better.
For example, the 511 doesn't have a
bolus wizard. It's interesting how a simple feature such as a bolus wizard can improve my quality of life. By calculating (instead of me guessing) boluses for each meal, it impoves my control. And improved control means improved quality of life.
These kind of shortcomings can be expected when new insulin pumps are launched. The 511 was after all a leap forward from the 508. And Medtronic improved it by launching the Paradigm 512 "shortly" after. Then they launched the 515 giving even further improvements and better usability.
But I live in the wrong country. The Paradigm 515 is not available in Western Europe!
Why? I have called Medtronic about this and apparently it has to do with the regulatory offices. Just like the US has the
FDA , so does Europe have its own agencies. In France it is called
AFSSAPS.
So what do these offices do? One thing they do is to create barriers to innovate products. Everything has to be approved in the name of safety. This takes time, and costs money for the companies involved. For users (like me) it means getting access to products later. The development of new features is slowed down.
Their justification is to protect the users from hazards, and thereby save life. However, the software gets thorougly tested by the company that make it. Any faults would be damn expensive for a medical company. Word spreads quickly, leading to reduced sales. In addition, willing and ambitious lawyers are plentyfull around negligence cases.
It is seldom mentioned how many tragedies could have been
avoided had the FDAs and the AFSSARS' of the world
disappeared. How many lives could have been saved? Launching products to the market 5-10 years before (new insulin pumps, but also new cancer drugs, vaccines etc) can save lives. In addition it would mean lower costs for introducing new treatments, and it would open up the market for smaller companies. More competition would be the result. more choices and lower prices for the end consumer.
But is this limited to only Europe and the US? No! In Australia, for example, they are now using the Minimed 508. This is the dinosaur of insulin pumps! Poor bastards. But atleast they get to practice their math at each meal...
