UVA Endos Speech

September 2, 2010

First off, I love my new diabetes educator. She is awesome. She loves my outlook on diabetes and totally agrees with it. Despite not being diabetic or having a kid with diabetes, she seems to understand a lot about daily life and frustrations of dealing with it every second of the day. She also understands, however, that she doesn’t know it all. And that most doctors sure as HECK don’t understand it. So…

She has asked me to speak at a luncheon for the endocrinology fellows at the University of Virginia (where I am currently a patient). I’m very excited… but very nervous. I’m not the most comfortable at public speaking. Although, most of the major speeches I’ve given in my life were about diabetes, and I feel pretty darn comfortable talking about it. But this…. this is different. I will speaking in front of my own doctor as well as the doctors who are working with me on the study I’m in (more on that once I’m finished with it). And all of the other endocrinologists at UVA which has a very prestigious and well established program.

My speech is going to be titled, “A Patient Perspective on CGMS and Insulin Pump Therapy.” So I think I will basically tell my story from the beginning. I guess they’re mostly used to hearing complaints about CGMS so my CDE wanted me to talk about my positive experiences with it. I also want to talk a bit more broadly about why I’ve been soon successful in diabetes in general. I want to tell them that the best way to live with diabetes is to live with a positive outlook. I want to tell them they shouldn’t scold patients or blame them for bad numbers.

I want to make this speech… not boring. And I want it to be effective. And informative. They’re giving me an entire hour to speak too! So I want it to be long enough. Ha!

I guess what I’m saying is… does anyone have anything they think should be included in such a presentation? I want to make sure I cover all the bases and get the whole message across! Oh and my speech is October 19th. So I have awhile to figure out my presentation.


How I told my pancreas who’s boss

May 4, 2010

Weeks ago I posted on both Twitter and Facebook that I had accomplished what I thought was impossible. In just 3 months I brought my already decent A1C down an entire percentage point to 5.8! This beats my previous record of 6.2 which was my first A1C on the pump.

A few people asked me how I was able to do this. The major component to my new found glycemic perfection was my new CGM. I have been able to see how all kinds of things affect my blood sugar, especially foods. I had no idea what some things (like pizza) were doing to my blood sugar! I was honestly shocked and appalled that I was letting my post prandial blood sugars spike up so high. And I didn’t even know it was happening! To fix this problem I’ve actually cut out a few things. Or modified them at least. For example, I have always loved bagels! But now that I am able to watch my blood sugar spike up after one I’m not really a fan. However, I have discovered a great alternative. Whole wheat bagels! They are packed with fiber which is great for the heart and the blood sugar. Instead of an intense spike, I slowly creep up a little and my blood sugar tops out at a much lower level. The same goes for bread and pasta. You will not find white bread in our house anymore!

I really think the other major reason why my A1C has improved so much is that I’m not as scared of lows, especially at bed time. Before getting my CGM I was constantly worried about going low and not waking up. If I had any hint that my blood sugar might drop even close to low, I would eat something. Now, I feel more comfortable going to bed with a lower blood sugar as long as I have a flat line. My CGM does a pretty good job of yelling at me until I wake up and test! All this being said, I was having some more frequent lows. For some reason right before dinnertime was the worst spot. And I was still having some lows overnight here and there. However, I’ve done some basal testing and fixed things up a bit. Most of those lows are gone and my blood sugar average is still in the range of a 5.8 A1C. Hurray!

I definitely cannot stress enough how useful this CGM has been for me!

My Artificial Pancreas Post

January 15, 2010

On Wednesday, the Juvenile Diabetes Research Foundation officially announced that it is teaming up with Animas Corporation to develop the very first Artificial Pancreas. This has been in the works for a very long time! They’ve been doing proof-of-concept studies for years including one here at the University of Virginia.

The device is going to be developed over the next few months and “should” be starting clinical trials by the end of the year. Depending on the difficulty it could be on the market in 4 years!

The term “artificial pancreas” is a little misleading  I think. The first version of this system will not be fully automatic like the name suggests. It will have some sort of predictive algorithm to help prevent high and low blood sugars. But if it still requires any kid of human input can it really be called an artificial pancreas?

I also think that the term is a bit misleading to people who don’t understand how it works. I’ve already read several posts on message boards and Facebook groups proclaiming that the cure is here. I cannot reiterate enough that this IS NOT a cure! A cure to me means that I am no longer diabetic. I no longer need to have insulin injected into my skin. Therefore, in any form, this artificial pancreas should not be considered a cure.

In fact, calling it a cure could prevent an actual cure. If the world believes there is a cure, then they will stop pushing for the real cure. For example, when insulin discovered it was announced as being the cure for diabetes. I suppose at the time it was the cure because it kept people from dying. However, we now know that it is definitely not the cure. Yet, according to the ADA 1 in 10 people think that diabetes is cured and 19% aren’t even sure if it is!

I know that there also a lot of people who are upset that JDRF is giving money to this project instead of an actual cure. In response to these concerns I would like to point out that one of JDRF’s missions has always been to improve treatment until there is a cure. For example, it was JDRF who funded more CGM studies to ensure that insurance companies would cover it more widely.

I would not call the artificial pancreas the cure. I sincerely and truly and wholeheartedly believe that it is a huge step forward in more effective treatments that will keep all of us alive and healthy until there is a cure.

So far… so… not quite what I expected.

January 12, 2010

Well, my first few days using CGM have been interesting to say the least. The first 3 days were a bit stressful. My numbers didn’t really seem to be anywhere near close. I kept going low. And the pump never showed it. It would trend down but only drop to the 80s when I was really almost 40. It did this for two days! I was a bit stressed but just kept going. I set my low alarm to go off at 90 instead of 80 which helped a lot. It actually woke me up to check in the middle of the night when I was low.

This weekend my parents came to visit us for my birthday! It was a lot of fun. But while we were out doing wine tastings I had to restart my sensor. I knew this ahead of time and was ready for it when it timed out. But for some reason it kept doing weird things when I tried to restart it. It kept asking me to enter BGs when I shouldn’t have had to. After several hours of it doing this I just decided to turn it off to keep it from totally ruining the day. When I got home I decided to just take out the sensor and start a new one to see how it goes. Once I did that it went back to working. In fact, it has been far more accurate now!

Tonight is another sensor restart night so I’m anxious to make sure it goes well. I think I’m making progress and slowly learning how to read it and how the numbers on the pump relate to the numbers on my meter.

Tomorrow is also my endo appointment. My last one with my doctor who is leaving. Should be interesting. I honestly don’t know how my A1C is going to be compared to my last one (which was 6.5). My meter reading my 7 day average as 133 (!) and my 30 average as 153. I’m hoping my A1C turns out more in the 133 range because that would put the A1C at about 6.2 which would tie for the lowest it has ever been!! Keep your fingers crossed for me!

The day has finally come…

January 6, 2010

Today is finally the day! After years of anticipation and hope, I am FINALLY connected to a Continuous Glucose Monitoring System!!!

Waking up today was like Christmas morning. I could hardly contain my excitement! We had to take Jovi to the vet this morning which is probably good because it kept me from bouncing around the house all day. Turns out she has worms in her tummy. Poor little baby. I guess it’s not that unusual for a shelter cat to get worms. We just had to give her one dose of dewormer today and she’ll get another one tomorrow. Hopefully this will help her feel better so she can start becoming more comfortable in our house!

So once we got back I started frantically straightening up the house and trying to be busy to pass the time more quickly. Luckily my trainer, Michelle, called way earlier than I expected her to. She was only two minutes from our house! I did a little happy dance and gathered everything up on our kitchen table.

She started by having me turn off my the connection between my One Touch UltraLink Meter and my pump. Which I still don’t understand why they have it programmed the way it is. It forces you to manually enter all your blood sugars which is fairly irritating seeing as the pump doesn’t have number buttons. Buuuuut whatever. We got all the alarms set up. It was really helpful to have her input because I had completely different ideas of what numbers to set my alarms at than what they actually SHOULD be set at.

While we were doing this Michelle kept telling me how amazed she was that I already knew how to do everything. Apparently a lot of people don’t even look at the instructions before they meet with the trainer? And she was even worried that I might not have tried to charge the transmitter. I informed her that she definitely did not have to worry about any of that with me because I’ve been so anxious to get a CGM on that I kind of know everything there is to know about it without actually wearing one.

So, then we get to the only part I was a little nervous about. Insertion! I’ve always described the Sen-Serter insertion device as being just like the Sil-Serter device for the silhouette infusion set. This, in my head, made it seem like no big deal. But then I started thinking about how much I have bled in the past when I insert a silhouette. Needless to say I was a bit concerned. But again, it was great to have Michelle there to literally show me how to do it properly. She used the inserter on my skin to show me the best possible angles and the best possible sites. And eventually I pushed the button! I didn’t feel a thing! I do have a little bit of blood, but apparently that’s not a big deal.

Once you start a new sensor you have to wait 2 hours to actually get the thing working and to start getting numbers. So I said goodbye to Michelle and began another wait! I swear it was the longest 2 hours of my life! But eventually I checked with a fingerstick. 130. Awesome. So now I was officially getting continuous numbers!

Not long after that I started feeling weird. Like low weird. The pump said I was 84. I checked… 60. I thought “Hmm little off but not too bad” and treated the low and went about my business. About two hours later I felt low AGAIN but my pump said 82. I did a fingerstick… 46!!! Aaahh! The sensor screen didn’t even have arrows on it to tell me my BG was dropping or anything. So I got a little upset and was almost in tears thinking that my CGM wasn’t going to accurately tell me when I’m low. I was all sorts of depressed.

Luckily, thanks to my years of diabetes camp I have the advantage of having instant contact with other diabetics. So I sent a text message to Sara (She’s my best friend from camp. No really. We’ve been friends since we were like 11 and even lived together in college). She’s been on the CGM for awhile now and she told me not to worry that the first day is usually not as accurate! So I calmed down. A lot. Michelle also called to check on me and I explained the problem and she explained that the sensor can kind of get a rush of “other stuff” at the site of insertion because your body is trying to heal the little wound you just made. So after a little while it’ll be a little more accurate. So far since the low it has been pretty spot on within 10-20 mg/dl. Hurray!

All in all it’s been an exciting day, and I’m *SO* excited to see some results from this thing!!!!