Diabetes Life Balance

What's in a Name? Type 1 v. T2. My Thoughts on a Petition to ResolveConfusion

2013-04-11T17:23:00.001-05:00

I have to say that I was hesitant to post this, but then I thought I would like to see where this goes. Two moms started a petition to get the names clarified or changed for Type 1 and 2. The petition says very specifically why this is important and frankly, I agree.

Revise Names of Type 1 & 2 Diabetes to Reflect the Nature of Each Disease

I've been annoyed for years. Whenever I'm in public and pull out my pump or CGM, I get, "what's that?" I explain and then, just yesterday and almost every single time, I get, "Oh! So it runs in your family?" Or, " My sister got it from eating too much candy." Or, "So you have to watch your sugar, don't cha?"

I have had diabetes, T1, for 29 years and it is only in the last five or so that this has become a really issue. Some confusion, but mostly, folks didn't know much at all, so the questions were limited. Now that Type 2 is increasing in children and more and more media and wellness programs are focused on it, folks don't really even realize there are two types. One autoimmune and one metabolic. Damn. They are not the same disease at all.

Today at work, standing by the elevator, there as a poster for a new Diabetes Management Program where they are going to help us control our diabetes and possibly stave it off. No reference to Type 1 or 2, let alone gestational or The other forms being discovered. Normally, irksome and I grumble under my breath and blow it off, but something's have changed and the name has a whole lot to do with it.

You've seen my posts about my tween. In 7th grade and she does everything possible to avoid letting anyone see her manage her diabetes. Few know and she wants to keep it that way for now. The main reason, other students only know about type 2. It's what grandma has or Uncle Joe. He's real overweight and had his big toe cut off. "It's real gross."

That is what my daughter wants to avoid. What do you say to that? Communicate with fellow 12 and 13 year olds? "Oh! You have this all wrong. I don't have what your grandma has, I have something that is completely out of my control. It's an autoimmune disorder..." Glare. "Whatever." On goes life. Misconceptions remain.

This poses a safety hazard, too. If friends don't know, what if there is an emergency. Wi makes the call for help? Maybes teacher who thinks the same thing?

So, I supported the petition because I'd like to see how it is responded to by the National Institute of Health and the others in the list. I'm not dying on the hill over this, but I am willing to talk about it on a forum at reaches a lot of people. The signatures were at right about 2,219 when I post this. Why not get a mass of signatures and see what happens. Type 2's don't care about this (according to my type 2 husband). They can have the "diabetes" brand. We can come up something more fitting of the disease we have to deal with daily forever. The disease that is not "cured by modifying our eating plan." Not angry, just irritated.

Let's make these numbers soar and see what kind of response is received. Click below to review:

Revise Names of Type 1 & 2 Diabetes to Reflect the Nature of Each Disease

Artificial Pancreas Bluetooth Based at JDRF T1 Now Conference

2013-03-06T07:30:00.000-06:00

Here it is!! This is a shot (I only got one chance, so excuse the glare) of a smartphone that has an artificial pancreas program installed. It uses Bluetooth to take data from your CGM and your pump (Bluetooth enabled...hello Medtronic?) and combines the data into a program that can determine whether you need more insulin or less.

It watches your blood glucose and that gives micro blouses if you are trending high, or micro-suspends the pump to stop delivery of insulin in you are trending low. I wish I had the chance to get shots of all the screens, but one screen shows the CGM data in a graph and also how the pump is told to react, so you see the micro-blouses like a bar chart by hour/minute and also how the pump will suspend for short periods with the bar graph that goes below the line. So you see everything.

On this screen you can see it is connected to the CGM and the pump. You can see the "Closed Loop" is active. You have screens for adding food, medications, or exercise. He explained that much like autopilot on a plane, as captain, you want to take off and land the plane yourself, so you are active in the process of blousing for meals. But, if you are like my tween and forget, the AP will watch you trending high and bonus to keep you in target range. This is harder for your body than just planning and blousing, but let's say that pizza was really 45 carbs and not 60? The AP will watch you dropping and suspend insulin delivery to stabilize you. I bet that may not be enough in some cases, but what a help.

Tom Brobson, National Director for JDRF, who showed me this device, told a story about how when he got this thing, he went straight to a burger joint and ordered a huge burger and a huge order of fries. He said he took about 2 units of insulin for that huge meal and watched what would happen. You know what? He never got above 150 or so. The AP worked great at trending and anticipating his bodies needs.

The unit he was showing us was in a simulation mode now. But THIS is exciting. When he used the functioning device, he used it with his Omni Pod and his Dexcom G4 Platinum, both Bluetooth enabled.

While I had Mr. Brobson's attention, I proceeded to have a little rant about the FDA and Medtronic Minimed. More about the results of that conversation in my next post, but I feel better.

JDRF T1 Now Conference: I learned a lot!

2013-03-04T18:46:00.000-06:00

Wow! I learned an awful lot at this conference. I totally enjoyed hearing Tom Brobson, JDRF National Director, talk about the artificial pancreas he got to wear. I'll talk about technology in my next post with a photo of his cell.

But really the biggest boost I got was from Dr. Stephen Ponder, who talked about how to get the most out of your CGM and how to time you meals with that constant flow of CGM information.

OK, long timers, who thought that when "faster" acting insulin was invented in the 90s (Novolog, etc.) that that meant we could take insulin as we sit down to dinner?

I grew up the "Regular" insulin, which meant I had to take my insulin 30 minutes before I ate. I was under the assumption, probably falsley planted by my doctor or diabetes educators of long ago, that the new insulin would work in about 10 minutes. So, I thought, "Ahh! Time to eat my pasta dinner, better take insulin for the 45g of carbs." Well, 15 years later, I find out I was kinda wrong and CGMs help us see why.

Dr. Ponder explained that if you take insulin 20 minutes before a meal, you can see on your CGM that a slight bend downward in your blood sugars happens at 20 minutes post insulin and THAT is when you should start eating.

So, yesterday was my husband's birthday and I did a little experiment with this new process. I took insulin 20 minutes, maybe 25, before we sat down to eat surprise donuts! Yep. Donuts. My blood sugar never went above 165. How cool is that!

I also learned that when you correct a high, you shouldn't see much in terms of results for at least two hours. It seems awful silly that I didn't know that. I mean I did know it, but no one ever said to me, "You won't see results for two hours." I just experienced it. There is something so valuable about hearing a doctor or professional give you concrete information about something you have experienced intrinsically for more than two decades. Is that weird? To be so thrilled with info I generally knew, but now have specifics on and can apply to my management?

More on the horizon of diabetes care in my next post. Lot's of info that I'm trying not to get my hopes up about, cause it would be too awesome!

Attending the JDRF T1Now conference in Austin

2013-03-02T09:23:00.001-06:00

JDRF Director, Tom Brobson speaking now. Will post thoughts later.

Wow! Exercise make your blood sugar go low

2013-02-24T12:48:00.003-06:00

Ok, I'm not dumb about this fact, but I just started a couch to 5k app this morning. My sister and I are going to try to do it together, even though she is 200 miles away. We figure accountability is the key, at least for me. When I walk with friends or go to the gym and meet them, I go. I hate mustering the energy to exercise alone.

Anyway, my sister couldn't believe that I started this morning. Really, she probably thought I was the last person to step up before her. She is three years younger and in much better physical shape than me. But the spirit moved me, I bought new, expensive shoes and I'm off. I also thought I might as well track what I'm eating in another app. Baby, baby steps as I make my health more of a priority.

So, on my walk-to-jog day one, I figured it would kick my butt, so I reduced my basal rate to 75 percent. After 12 minutes I had to suspend my pump and when I hit the cool down I has double arrow dropping from 80. I had to stop, missing the five minute cool down. I also skipped a couple of the jog portions when I was walking up a hill or I was just wiped out. As my fanny hit the couch I was 55. I slurped a juice and ate some fruit and cheese.

I ate breakfast and took my normal insulin before I left. I'm thinking that i might need to do a 50 percent basal reduction next time, or maybe even suspend just before I go. Any advice here? Can't wait to use my CGM to figure out this puzzle.

If I ever led you to believe T1 diabetes was easy...

2013-02-12T08:59:00.001-06:00

...I'm sorry. Because it isn't easy. In fact, I have learned to cope so well that I'm surprised when I stop and look at all I have to deal with every single day. Stunned. Stunned by how much my daughter has to deal with every day.

Last night I was just too tired to get up and help my girl with a low, but o was awake and worried. My husband got up and took great care of her, even feeding her a completely unnecessary bowl of cereal and fruit with real whipped cream. She was starving at 3:30 a.m.

But at dinner she was 436. This after a long, long conversation on Sunday with her about being accountable for the food she eats and taking her blood sugar at school AND insulin. She is really struggling to keep her diabetes under wraps in middle school. Which means she is really struggling to keep it in control, too. I completely understand, but we challenged her to find a way to do it. She is smart, creative and capable of taking care of herself. So, she proudly told me as she got off the late bus that she checked her BG and got her insulin before lunch. Small victories. Then, she checks at home and she is 436. She burst into tears because she did everything right. Her infusion set was clogged. That doesn't make either of us feel better.

So emotionally, last night was rough. We had middle school drama to attend to and a diabetes triumph with the crashing realization that maybe no one is in control of this freakin' disease.

She was 115 when I went to bed at 11:00 pm, so I thought we were good until she stumbles in low. So this morning, I'm staring at her tired face sleeping and I know she isn't going to get up. She has standardized testing today and has to be there, but she just can't wake up.

I have crashed this morning. How can everything swing so wide in 12 hours? How is a growing girl supposed to manage this physically and emotionally? How can I have so little control over all of this? How can she be SO amazing and balanced and strong with so many obstacles that other kids her age don't face. I am so incredibly fortunate to have such an amazing kid.

I know I'm am a good mom, but really, I wonder everyday how I could do more to help her. I wonder if giving her so much responsibility is hurting her or helping her. She is 12. I wish I could send her to the school nurse so she could help take care of her, but that isn't my kid. She wants to do it herself. I wish I could have teachers gently remind her to check her BG before a test, but that isn't her or her school either. I wish she didn't have amazing field trips 9 hours from home with no cell coverage, so I wouldn't have to tag along.

And I also wish I didn't have diabetes, too. I almost can't write about it in the same post, because it is that big. My diabetes and her diabetes live in two separate worlds, because I struggle to do both successfully at the same time. I'm not "worried" about me. But it is totally there. I use a CGM to keep me from diving off the deep end. That's the best I've got.

I really wanted to post on Facebook this morning (or scream out to the world), "To anyone that I led to believe that managing T1 diabetes was easy, you were wrong." But I can't say stuff like that on Facebook. I don't want pity. But my friends have no idea what I deal with as a woman with T1 and a mom of a child with T1. I make it look easy. No one would ever understand. It is impossible to explain how much energy and spirit is required. None of my friends were up all night, worried all night, for their child's well being. It's just a tuck of the covers, a sweet kiss with a whispered, "Good night, sweetie! Sleep tight!"

New Years Resolution Update: I Quit the Gym. Boy, I Feel Better.

2013-01-16T08:12:00.001-06:00

Yeah, I went to the gym, inspired by my walk challenge, which has been, well, challenging. I actually hadn't been in awhile. They supposedly renovated the place and when I walked in I saw new paint and stuff moved around and a lot (whole lot) of people working out like drones in front of the TVs. I wanted to swim. My body was achy and I heard the pool area was new, but it didn't look new, save for paint.

Anyway, I loaded up my gear and went to the desk and told them I quit. Whew! I feel better. No more feeling bad for not going. Paying and not going. Spending 20 minutes to get ready to go. No 20 minutes to unpack and get dressed after going. No more feeling like crap when I look around at all the college students who look just like I did at 23, but I didn't have to work for it then.

So, I came home and pulled out my Mari Winsor Pilates DVDs from like 1995. The 20 minutes workout was scratched (my copout go to) and won't play, so I did the hour. I did it Sunday too and when a friend asked if I wanted to take a walk that day, I said, "sure!"

Yesterday, I did my video again and am already stronger. Interestingly, even after my first workout, I had to adjust my car rearview mirror because my back was straighter. That was actually at the top of my list of priorities, work on my posture. Pilates does that and I love that I workout laying down almost the whole time (or rolling like a ball).

The steps challenge to do 5,000 every day, well, that is hard. In fact, I am super impressed my doctor does 10,000 every day. On an average day of just taking care of the kid, working, coming home I average about 1,200 steps with no extra effort. Sunday, when I went for a long walk, I only managed to hit 4,750. That is my peak since my last post. The days I'm doing Pilates, I'm generally not walking. I take me stairs...going down, and am trying to get more steps in, but other than going on long walks (time), I don't know how you hit 5,000.

So, I'm adjusting my goals a bit. If I do Pilates, walking be damned. If I don't, I need to take the dog on a long stroll.

That's my plan. I just need to move and the Pilates is stretching me like I need, lengthening my muscles and not killing me yet. I do need to accept a couple of the more challenging moves in the video that I have skipped. I did two new ones yesterday and was surprised I could get my legs over my head so easily. Anyway, stay tuned.

When's it Going to be All About Me?

2013-01-10T08:23:00.002-06:00

I don't really want it to be all about me, but I need it to be at least front and center in my life. I am the caregiver of a tween with T1 diabetes. I am a mom with T1 diabetes. It's hard enough to be a mom and pay any attention to self care, but I think that I have slipped comfortably into the role of martyr. On any given day I wouldn't say that, but if you look at my health vs. my kiddo's, I have consciously or unconsciously put her right in front of me, which provides me a battery of excuses for letting my self go.

So the New Year is upon us and I see carts in the grocery stores stuffed with veggies. My gym, the one I pay for each month and haven't seen in awhile, keeps sending me personal trainer promotions, and I need a new pair of jeans. Ones that fit me both vertically, as I am really tall, and in circumference, which has become more challenging that it should be.

I'm not yet at my mid-40s and I have absolutely noticed the five pounds a year they say women stack on just through the aging process, but my own diabetes care makes it so much harder. Insulin, technically, makes you hold on to calories and store it away, that way you aren't letting it run rampant through your body and out with your urine.

Well, viscous cycle, here we come. As I gain more weight, I need more insulin. As I take more insulin, I gain more weight. Screwed, if I leave things alone, which is what I want to do. I want to focus my energy on my kid and family and community and everything else, because focusing on me is exhausting mentally. The games we play in our heads are so disruptive and completely unnecessary.

So, I downloaded a pedometer app and am trying to hit 5,000 steps per day. This is a bit of a challenge when I sit at my desk for my day. Yesterday I hit 3,755 because I took the dog for a walk, but that kinda makes things interesting. How can I add more steps to my day? I am mildly challenged by this, which is saying a lot, because exercise is on my list of to-dos just below emptying the dishwasher, which has become a 20-year battle between my husband and me. I fill, but I don't empty.

Anyway, I am not promising any miracles, nor am I trying to meet some ideal body weight. I would like to fit into easier-to-find-jeans and I need to make an effort at putting my health on the list higher. You know the oxygen mask airplane spiel, right?

I am going to visit my dietician and have her tell me what to do. I haven't seen her in 10 years, so I probably have some stuff to learn. I am also dumping all the clamor and dialog swimming in my brain around what I "should" be doing. Or how I should look or what my outcomes should be.

I know many moms read my blog who have kiddos with T1. I know self-care is hard for you, too. If your willing to share, I wonder how you set aside your responsibilities for them, in order to take care of yourself? Let me know.

Wow! Highest A1c Ever for My Tween

2013-01-04T08:02:00.000-06:00

We visited my daughter's endo after wearing the Dexcom G4 Platinum Continuous Glucose Monitor for about two weeks. They actually had some numbers to work with when they looked at changes to be made.

I really hate visiting this practice. In fact I hate it so much we hardly ever go. Every appointment is two hours minimum and they want us back every three months? Crap, who has that kind of time with a middle grader in magnet school? I was dreading this appointment because we switched doctors so we could get in at the time I wanted. She is new and I was anxious.

Turns out I love her. She is young and related to my daughter really well. But she delivered some harrowing news. News I shouldn't have been surprised by, but it was a shocker. 8.8 Hemoglobin A1c. Dude. 8.8.

I remember being 15 and hearing the numbers 11. Yeah, really. I would sit in the endo office waiting room filling in weeks of my log book with 151, 127, 210, 101, 98, 164, 175, 97, 120. I remember the him looking at the numbers when he asked to see my hands. He looked at my finger tips and them showed me. Busted. No evidence of taking my blood sugar and back then the lancets were fat and damaging.

All throughout the holiday my kid has been drifting in and out of the 200s. Only when I give her a 125 percent basal increase does she stay closer to normal. Her sensor died a week ago and begged to have a break from it, so I'll put it on her today, but this is freakin' hard. Hormones are a real bitch!

By the way, she wore the first sensor nine or 10 days and the last one more than two weeks. It started irritating her where the corners of the rectangle poked into her skin, so I think we'll stick with one restart.

Updates on my non-blogged about husband in the next post. Bad news. Type 2 is real diabetes.

Technology Only Gets You So Far: You Can Bring A Horse to Water...

2012-12-24T11:46:00.001-06:00

So my daughter has been wearing the Dexcom Platinum G4 for about a month. It is SO nice to have her numbers, but it hasn't improved her memory. It is better, but she can't remember to take insulin before, or sometimes even after, she eats. Dude. What do I have to do? She has a thing buzzing at her to remind her! Ahh! 12.

Merry Christmas and Happy New Year to all!!

Amazing! Love Dexcom G4 Platinum

2012-12-04T08:07:00.000-06:00

Anyone who has followed my blog for some time knows my daughter, 12, has T1 and refused to her core to wear a CGM. I forced the Minimed one on her in 5th grade for exactly one week and she promised me to never, ever wear it again. It took me an hour and a half to get the thing on her and the only thing that worked was a threat that she could not attend a birthday party until she had it on.

The threat worked, but I did damage. The whole, "this hurts me more than it hurts you," may not have been true. It broke my heart. Here I had in my hands THE thing that could make my life easier as a mom of a child with T1 and she didn't want it. She resented me forcing it on her. It also hurt.

Well, she is in 7th grade now and this morning her blood sugar was 135. In fact, in was in that range all night. I checked it by rolling over and looking at a hot pink Dexcom G4 Platinum Continuous Glucose Monitor!

My daughter and I were headed out of town Friday with her best friend. We planned to leave at 4:30 p.m. and she got off the bus at 4:00. She hopped in the car and I handed her the already charged receiver and she thought it was too cool!

I had everything ready to go to put on the sensor on and was all smiles when I said we needed to get it on before her friend arrived at 4:30. We danced in anticipitation for about six minutes, but I didn't lose my cool. I stayed smiling and encouraging and finally she said, "Just do it!"

I counted to three, pushed the plunger, pulled back the collar to remove the needle an carefully removed the inserter from the sensor base. Putting in the transmitter is awkward and was probably the worst part, because you have to push down hard to get it to click twice into the sensor base, but she was OK. We agreed, that was indeed the worst part.

She and I were both surprised that the transmitter is so much thicker than the Dex Seven Plus. Really, it is tall, but right now, in winter, it isn't an issue, but come summer, we are going to have some issues I suspect.

Anyway, we hit the road and she calibrated in the car two hours after starting the sensor and about an hour from our destination. Interestingly, her first BG check was 237, so she entered it as one of the first two calibrations. Her next BG was 135, so she entered that. The receiver asked for another check, thanks to the wide disparity, so she checked again and it was 132. The calibration took! I think the Minimed would have just said Cal Error and I would have had to wait and try again later.

Spending the night at my sister's house was to be the highlight of our trip. I was going to stay with my mom and my daughter and friend with Aunty, Uncle and baby. Her first night, my sister was up with the baby at 5:30 a.m. and she heard this crazy beeping. She text me to ask if she had an alarm set, but I was zonked out. She finally went in to investigate the sound and found her Dex buzzing and beeping. It said LOW in red letters, 55. My sister had trouble waking her up, but finally got a glass of juice in her. I am SO grateful! So, so grateful!!

It has been within 10 points accurate and is supposed to be stellar from day four to seven.

I asked my daughter last night what she thinks of it so far and she said she loves it!

More later about the pros and cons. I downloaded and used the software, have issues with the alarms and the transmitter size, but need a few more days to evaluate. For more info, read Kerri Sparling's blog Six Until Me for her first and second impressions of the Dexcom G4 Platinum.

Dexcom G4 Platinum On the Truck

2012-11-28T00:00:00.001-06:00

Adolescent Needs: We're moving on Minimed to Dexcom G4 Platinum

2012-11-25T12:31:00.000-06:00

I'm buying the new Dexcom G4 Platinum Continuous Glucose Monitor (CGM) this week. I've been waiting on the Minimed Enlite Sensors to get FDA approval, but my daughter (12) and I can't wait. I am floored by the changes her body is going through and how that impacts her blood sugars. One thing I know, she needs the latest technology available TODAY. I don't even want to wait for shipping.

I was up at 3:00 a.m. last night as her blood sugars have been near 300 for a few days. I keep bumping her basal to 120 percent, but last night, she was 275 after adjustments and I overrode the adjustment my a unit and set the temp basal at 130 percent. Then went back to bed and said a little prayer that it wasn't to much. She was 120 when she got up.

I've been sitting and waiting for the Medtronic CGM, but the FDA is too slow. I actually wrote a letter to President Obama with tears streaming down my face asking him if he could put a bug in the FDA's ear to hurry the hell up! It was more polite than that. I know it was going to fall on the desk of an intern, but as a mother, I have to do everything in my power to protect my child, so I'm buying the Dexcom G4 and she actually said YES to wearing it. YES!!! She called it "her CGM" the other day and you have no idea how big this is for us. She wants it!

I
I can keep this by my bed and if my daughter's blood sugar goes low or high in the night I'll hear the alarm! It was 20 foot range! I won't worry in my sleep anymore! I'm going to keep all alarms off and download nightly to see what she needs, but I don't want it interrupting her in school. I just hope she'll look at it once in awhile. I'll update when we have it, but I can tell you that I'm happy! The Dexcom Seven Plus works great. I just really dislike having an extra device to carry around.

Medtronic Survey of New Pump Style Options

2012-10-13T13:40:00.000-05:00

So, I got an email from Medtronic Minimed yesterday to take a survey. It was supposed to take 25 minutes, so I as hesitant, but decided to go ahead and do it on my smart phone. I couldn't believe my eyes and I am SO mad I didn't take the survey on my desktop so I could capture some screen shots, a task I have yet to figure out or need on my phone. Anyway, the survey was comparing four different styles/functions of pump/Continuous Glucose Monitor (CGM).

There were technically two styles, but one offered artificial-like pancreas functions and one was just a pump with no CGM options, which just seemed weird. They both offered color screens on a remote control to manage pump/CGM functions. One was a rectangle about 1 1/2" x 2 1/2". It sat on a baseplate infusion set and had a "pump" with 200u of insulin inside. This affixed to your skin directly via the base plate infusion set. You had options to bolus from the pump directly, but there as no screen, so probably just an audible system. This would come in handy if you left the remote at home and were out.

The second style was a 2" round disc. It also had an infusion set that went with it and looked like the ones now, but the disc was a pump that held 300u of insulin. The pump could also be affixed directly to your skin or you could clip it to your belt, put it in your pocket and maybe your bra. It had no function for bolusing on the pump, but shared the remote shown with the other one.

The biggie deal here was when selecting which ones you liked best, it was clear they were trying to see if you were really interested in a CGM based artificial pancreas, because the questions said the pump would cease insulin delivery if blood sugar dropped below determined levels, or would correct for high blood sugars if it went above certain levels. The options given were one step beyond the Minimed 530G, the American version of the Veo.

So, while anxious to just get the 530G and the Enlite Sensors, this is exciting stuff. I was really confused why they would ask if I preferred a pump with a CGM that could shut off or auto bolus vs. a pump with nothing but a remote. Dude. That is so Omnipod!

One Last Idea on Manual Insertion of Medtronic Minimed Enlite

2012-10-02T08:15:00.004-05:00

OK, I'm going to try one last time to get a sensor on manually and I think I might have an idea about how to fix this. I have been flattening my skin to make it more taught, like I do when I put on a Quickset infusion set. I think that could be my problem; creating too much resistance for the spring loaded needle.

I'm going to try to squeeze up a pooch of skin, so it is softer and squishier. Maybe that will allow the needle to slide in more effortlessly and not trigger the release of the needle. Wish me luck!

Oh! Someday these post may be relevant...when we can actually buy these in the U.S.

Just sayin'...

For What It is Worth, I Asked the President for Help

2012-10-01T09:02:00.000-05:00

Tears streamed down my face this morning as I wrote a letter that will be read by an intern and probably never be seen by anyone who could offer help. I had to try though. Maybe if I write every single day, the White House can knock on the FDA's door and ask them what the hell is taking so long.

I simply can't understand. I won't understand how a product being successfully and readily used since 2009 in Europe, can take so long to approve here in the US. What is WRONG with this picture. And, when it is finally approved, American's will be falling over ourselves thankful to have four or five year old technology. I certainly don't blame the President for this, but I do think he could help. Just asking the question, "What is taking so long?" and "When is the Medtronic Minimed VEO and Enlite Sensor being approved and made available to Americans." It would be nice if there was a question about what the hell took so long, but I'm not picky. I just want this pump and CGM for myself and my child.

My frustration is palpable. My desire to take care of my child and myself with the most comprehensive technology available is beyond words. My anger that I can't have what has sat on market shelves for more than three years in Europe literally brings me to tears. Problems this illogical really get to me.

So, I better get to work and hope that someone is doing something out there for the millions of people living with this disease. Something beside making another stupid glucose meter in a new shape or color.

Manual Insertion of Enlite Sensor...Fail.

2012-10-01T08:04:00.000-05:00

I have only found this video online and not one single set of instructions for manual insertion of the Medtronic Minimed Enlite Sensor. The video is helpful, but I have found that on my adult skin, her technique was just not that simple. Repeatedly the needle would spring back into its holder as I plunged it into my skin. She does not show the insertion, but does a good job of explaining her process, however, since I have only had success with one sensor manually, I'm pretty frustrated.

Does anyone in Europe have the instruction manual and does it offer a manual insertion technique? What if you were traveling and left the Serter at home? There must be a way to do this without launching the needle back into its casing. I'm not leather, but I do think that a two year old might have the softest skin on earth. So, if any of my European friends who have the Enlite can share their experience, please comment.

My daughter is 12 now and I am watching her blood sugar spike for reasons that can only be hormonal. It is hard to manage. I can't be with her or monitor her anymore. Some days she has band sectionals at 7:00 a.m. and doesn't come home until after a volleyball game at 7:00 p.m. I sure would be nice to have this CGM. Seriously, what is the deal?

Really, an expert advice from lucky folks in Europe, would be appreciated!

Bayer's Contour Next LINK Meter Now Medtronic Standard

2012-09-12T08:12:00.002-05:00

Looks like Medtronic is moving from the One Touch Ultralink to the Bayer Contour Next LINK I used in the trial! According to medGadget, it will now be the Medtronic standard, even shipping all of us the new meter. I want to thank Gene Ostrovsky for linking to my blog post on my meter use during the trial!

As I mentioned in my post, I liked the meter. It was a nice change from the boring, no-frills Ultralink, but I have about a million One Touch strips to use up. I'm trying to be patient, but it isn't the meter I want, its the Enlite Sensors. Happy for the new meter, but let's hope it is the next step before releasing the Enlite!

medGadget posts meter benefits as:

Enables fast and easy bolus dosing and continuous glucose monitoring calibration

Pass-through feature allows for easy downloading to Medtronic’s convenient online CareLINK software, replacing the CareLINK USB device

Bayer’s No Coding™ technology makes testing easy by automatically setting the correct code each time a test strip is inserted

Easy-to-read display with large, clear numbers (my favorite feature and the only thing "new" enough to matter)

Fast 5-second countdown and small 0.6 μL blood sample

Optional pre- and post-meal markers with audible reminders

This isn't a revolutionary product, but it is much more pretty and readable!

Here is the news release from Medtronic, posted on Tu Diabetes by Emily Coles.

Playing With Leftover Medtronic Enlite Sensors

2012-09-12T07:48:00.003-05:00

So, I found another Medtronic Enlite sensor from the trial I packed up for a trip I took this summer and I have been playing with it a bit.

First, I had to insert it manually and this is much more difficult than it looked without proper instructions. But I got it and have worn it for nine days. Shhhh! Don't tell anyone. I'm actually going to restart it again this morning and see if I can sneak another three days with accuracy.

I am of course, using my old Medtronic Minimed Revel 723 pump, so it thinks the sensors end after three days, so I have to restart each time. At the end of the sixth day, I disconnected the transmitter and charged it, then reconnected it and started it like a new sensor. I got three more days, so now I'm going to try another restart and see what happens.

I'm so desperate to keep these sensors, I want to stretch them as LONG as possible. Over the trial I wore a sensor every single day and got mighty used to always knowing my blood glucose. I have grown reliant to the alarms to tell me when things are awry, so not wearing it creates a problem. I stubbornly refuse to use the harpoon sensors, but may be forced to if the FDA doesn't get its a** in gear and get this approved.

I'll let you know how it goes, but I want to be clear, I am stepping outside recommended protocols for using this sensor. I don't recommend doing this. I simply have nothing to loose as the end of my sensor life is very near and I want to see how long I can stretch it with accuracy!

Medtronic Enlite Trial: Over and All I Got Was Deep Longing!

2012-09-01T08:31:00.004-05:00

The Medtronic Minimed Enlite Sensor Trial was great, but I am truly missing the whole set up. I did have a few sensors I found tucked in a suit case after my trip and have tried to insert them manually, but it is HARD to do it well. So I lost one, feeling like an idiot, and am wearing one now. I've had it on for 9 days. Shhh! Don't tell anyone.

I am wearing them with my old transmitter and when I say old, I mean old. Like 2009, old. But it works well, I just have to restart the thing after three days (I'm back on my pump that doesn't know they new sensors work for six days without restart). At the end of day six, I unplugged the transmitter and charged it, then plugged it back in a started over. Seems to be working very well.

To wrap up my thoughts about the Enlite Sensor:

1. It is simple and painless to insert with the serter. Harder, but not impossible manually.

2. Six days works great and I am certain you could try for more, but that would be a personal choice because this would only be approved for six day use.

3. The accuracy is spot on. Seriously. The variance I see with my harpoon sensors can swing, not wildly, but with more frequency. This Enlite is accurate with very minimal issues. I did have some, but they were temporary and fixed with calibration. One time I had to End the Sensor and restart, but I think that was somewhat a user error issue.

4. I want it for me. I want it for my 12 year old daughter. I want the MySentry for both of us. I want it now.

I can't understand what takes so long. This product has been available for three, going on four years, in Europe. New pumps are being released by small companies with better looks and cooler UI, but I want this. It isn't fancy looking, but it works. We can blame the FDA, but I blame Medtronic for not starting all this sooner. They move much too slow and the FDA brings progress to a trickle.

I am optimistic. The time is passing the same as ever, but I have worn this CGM since April with few breaks and I now rely on it to keep me safe. I can be a mom, focus on my child's care and not worry about myself. If there is a problem, it will be and I love the beeps are minimal.

Medtronic Trial: Enlite Sensor Questions

2012-05-11T07:42:00.001-05:00

Still a little bummed I didn't get the Minimed Veo, but I've been thinking more and more about the Enlite Continuous Glucose Monitor Sensor and what it's introduction might mean.

Well, it would mean freedom from harpoons, but really, technologically, it would mean a pump upgrade. Rumor has it they would use the Revel in the US, not the official Veo from Europe, but that wouldn't mean we get to keep our current Revel model.

The current Revel's are programed for the Minilink CGM with a sensor life of three days. The Enlite is six days.

Also, I wonder if they will upgrade the transmitter technology. I'm not thinking so, because I still have issues with weak signals on my trial version. I really need a new transmitter for my personal system, but I don't think I want to upgrade until all of this stuff comes out.

While I totally appreciate the trail on the Veo, and I want it bad, I more than anything want the Enlite sensors for me and my 11 year old. However, I just bet the next major upgrade offered is a combo of a new "Revel" (with Low Glucose Suspend) and the Enlite together. I guess I initially had this thought that I could just order new sensors when they came out, and maybe a new transmitter for extra juice, but that is pretty wishful thinking.

I have amazing insurance (my husband works part-time for UPS and coverage is KILLER), so I'm actually not worried about cost, but this might mean we have to wait for both to be FDA approved, which scares me. I'm eternally sick of waiting on the FDA for new technology. Oh! So weary!

Will you upgrade if a new pump and new sensor system comes out as a packaged deal?

Medtronic Trial: No Veo

2012-05-07T12:37:00.000-05:00

Coincidentally, my headline, "No Veo," or "I don't see," in Spanish, is true. My number wasn't drawn in the randomized trial for the Minimed Veo Low Glucose Suspend Insulin Pump. So, no new pump today. Apparently, very few people in Austin got their number drawn in this national study. Boo hoo!

However, I will continue with the Enlite Continuous Glucose Monitor (CGM) sensors and the Bayer Next Link for another 13 weeks! YAY! I really love the Enlite.

I really would love your questions. I take a lot for granted and may not be telling you everything you want to know. I have a really busy week coming up, so if you post some questions you might have, I'll get answers to you before my next full post. Thanks for all your support!

Medtronic Trial: Headed to Appointment...

2012-05-07T07:52:00.001-05:00

..to see if I get the Veo. Stay tuned this afternoon and cross your fingers!

Medtronic Trial: Upload Complete! Now the Wait. Veo or No Veo?

2012-05-01T08:22:00.001-05:00

Today I uploaded my pump for the trial folks to analyze and see whether I am able to continue and be put in the random selection for the Veo Pump with Low Glucose Suspend. If my Carelink log meets some mysterious criteria, my number goes in a hat. If I am picked, I go Monday, May 7 to get trained on the Veo.

Either way, I will continue with the trial, but I may only be testing the Enlite CGM with a Revel pump and not the Veo. I hope to make the trial, mostly so I can tell you all about it! Cross your fingers for me!

Medtronic Trial: Bayer Contour Next LINK Investigational Meter

2012-04-22T10:02:00.000-05:00

I promised details on the investigational Bayer Contour Next LINK Meter provided with my pump for the trial, so here you have it. A picture says a thousand words, so I'm going to take advantage of that. Forgive me, however, for the not-so-great picture quality. I had to use my phone camera today, as the other camera's batteries were dead. FYI - If you click on an image, you can see it in a larger format. You also have the option of clicking through all the image up close.

Bayer Contour Meter has a USB connection for charging and downloading readings,

Results are displayed across the screen first in a big bold font, then it shoots to a smaller font as seen as it sends the results to the pump. Tough shot: Green bar says, "Results Sent."

There is a useful "Notes" screen that includes this and the following image.

Notes also includes "Activity," which isn't pictured

The meter also includes a reminder to recheck your blood sugar. I haven't used this yet, but this is a new feature, so I'm trying it out.

This is the Menu screen.

This is what you see when you select "Trends."

The is an image of the Logbook. The text under this reading has a scrolling, "Sent, High Blood Sugar."

Same scrolling text and amber color for a low. Font is white if reading is normal.


Easy on/off button, which seems like a silly thing to show you, but if you have the One Touch UltraLink, you understand. Just try turning the sucker off without throwing it out the window. Such an incredibly simple thing to make so hard.

Pretty cool! I didn't give it enough credit in my first post, but I also hadn't played with it much at that point. I don't upload the meter into Carelink, all results are sent to the pump, so they are uploaded with the pump info. However, if you needed to upload the meter only, you could. Whatcha think?