Wednesday, October 30, 2013

First Threshold Suspend on Medtronic 530G(!!!)

Ok, so clearly my devices were confused during my last post, but now I am low (60 or below) and got my first Threshold Suspend alert/request. Here is a picture of my pump, Dexcom and meter readings about 45 minutes ago.

This was spot on. In fact, I drank a juice and walked to pick up a burger and I felt LOW when I got back. Then I hit 60 and I accepted the Threshold Suspend option, which I could not photograph, because I just wanted to cram down my burger.

My Dex says I am 72 right now, I am not. I can tell. So, awaiting the juice, burger and the lack of insulin to bring me up. I have 1.1 units of active insulin, so it is going to take more than that box of juice. I am tempted to eat everything in my snack drawer. But I will wait.

I like this. A lot, but I am concerned about my first two days of readings. I hope this is just a fluke, poor sensor placement or some other anomaly because I like this low glucose suspend. I feel safer. More later.

Got My Medtronic 530G with Enlite Sensor (Notice, no exclamation point)

I am on day two of wearing my brand spanking new Medtronic Minimed 530G with Enlite Sensor. I got purple. I put the Enlite sensor on Monday night and it was a bit of a rocky start with accuracy. I kept on my Dexcom G7, as it was a new sensor and I thought the comparison might be useful.

By mid-day yesterday, the readings were so off that I restarted the sensor. Things then seemed close, but not all the time. It had me dropping more than 5 mg/dl per hour or rising that fast. By last night things seemed smooth and comparable, but this morning, I am completely confused. I did drink coffee and ate some oatmeal 10 minutes before these readings.

I need to be an investigator and work some things out. Perhaps: 

1. My very first Enlite Sensor was bad or poorly placed (stomach)
2. It takes a few days to "warm" up
3. It doesn't like me
4. This proves that no matter what machines we have, diabetes is crazy. (Update: WINNER)

I don't have time to analyze all these, but will check back when I can. I hope to report that this was a fluke. I'm probably calling Medtronic this afternoon to get a replacement sensor.

Saturday, September 28, 2013

Minimed 530G Artificial Pancreas. It's All I'm Thinking About.

It really is all I can think about. I called my doctor yesterday afternoon to get the upgrade to the Medtronic Minimed 530G with Enlite Sensor started and they jumped right on it.

The other night I had an occlusion, so I changed my set and bloused for the high even though I had insulin on board. It was clearly not working. But, apparently some of it was. I was asleep and at 1:00 a.m. bolted upright disoriented.

My Dexcom G7 sensor had ended and I didn't want to start a new one while sky high and then falling with a new set. I took my blood glucose and I was 40. I drank a juice. I was still 40. I drank another juice. Still low, so I drank milk and got some toast with peanut butter. I hit 65. Ten minutes later I was 55. I drank more milk and ate cheese. Finally, I began climbing. About 5:00 a.m. I bolused for a 200, which considering how much I ate, was pretty reasonable.

If I had the Minimed 530G (and my sensor was active), none of this would have happened. I actually had any Glucagon laying next to me in bed, just in case all that food wasn't enough and my husband found me unconscious.

So, for those of you that follow me, you know I did the trial for the Enlite Sensor that comes with this shiny new pump. I have lots of posts about the Enlite Continuous Glucose Monitor sensors and the things I LOVE, including this post, so check them out. I was so disappointed not to get the Low Suspend pump, but one a couple people in Austin got it for trail.

One thing I think is weird, and I'd love to hear the engineers talk about their reasoning on this, but why did they change "Low Suspend" on the Veo in available in Europe to "Thresh Suspend?"

"Thresh," is more understandable? Thresh. Ugh. Maybe that was an FDA thing, because it is that stupid. One of my biggest issues with Minimed is their lack of concern regarding user interface. It is at the bottom of their priority list. However, they are kicking out technology that works well and is reliable and on the cutting edge, which means I buy it. I love shiny, but if it isn't the best medical technology my insurance company can buy, I don't want it.

So, I am working on ordering for both my daughter and I before our insurance changes from 90/10 to 80/20. Are you interested in buying this for you or your child?

Friday, September 27, 2013

Medtronic Minimed 530G Low Glucose Suspend and Enlite FDA APPROVED!

Just announced!  

Medtronic Gains Approval of First Artificial Pancreas Device System with Threshold Suspend Automation

Read more here!

This is what we have been waiting for! Read about what I experienced in my trial of the Enlite CGM Sensors that come with the pump. It is SO much better than the sensors offered now. I did not have the low glucose suspend pump, but I can't wait to have that for my daughter and I!

More later!

Sunday, August 4, 2013

My T1 Kid is at Camp for Three Weeks! Freedom or not?

It is day 14 and I feel SO much better than I did on day seven. Day six and seven, in fact, I was a wreck. It was so quiet in the house and I hadn't made any plans. That was a mistake. Now, I used to think that quiet and solitude was all I wanted. I'd think, "If only I didn't have so many things to do, so many things to think about."

As the mother of a 12 year-old daughter with Type 1 Diabetes, my mind rarely gets the luxury of quiet. The space to do nothing; to think about nothing. Although, this usually has more to do with the "being 12,"  than with diabetes. I spend a whole lot of my life with some question, instruction, request, point of clarification or command right on the tip of my tongue. But with her gone to camp for three weeks, day six and seven kicked my ass.

We both knew she would be gone a long time. For years, she was very hesitant to go to this camp, but a buddy with T1 said she would go, too.  So we booked her first full summer session to Camp Sweeney, a camp for kids with T1 in North Texas, about an hour and a half from Dallas. It's been around since the 1950s and is a wonderland for play, fun and friends. They also learn a helluva a lot about being a kid with T1. They normalize it and prioritize it.

My busy mind enjoyed helping her pack for the adventure. We bought stationary, a journal, shampoo and conditioner, special name stickers, so her stuff wouldn't get lost. Lots and lots of stuff to buy, think about and do.

Delivering her to camp resulted in one tear spurting. While waiting in the medical check-in line, she pushed my camera out of her face...and my own blood sugar was low.  I could not stop the leaking. Thanks goodness I was at a diabetic camp; they had juice.

After making her bunk and kissing her goodbye 10,000 times, my husband and I went to a museum in Ft. Worth. This was our first freedom stop after 13 years of non-stop parenting and 9 years of non-stop diabetes care-giving. We had a blast! We were silly and laughed a lot. We even mailed our first postcard to our camper from the post office next to the museum.

The week flew by. I wrote every day, watched every live broadcast and worked. But the quiet of Saturday morning undid me. By Sunday, I was depressed. I could not get motivated to do anything. I just sat and thought. I had lots of existential questions and few answers, but fundamentally, I didn't know who I was without my role as MOM.

It felt like what I would imagine empty nest syndrome feels like. I felt very sorry for myself. It was rather pathetic, but it felt kind of cathartic, too. Like maybe this was less about my daughter going to camp and more about my daughter growing up.
Riding in my husband's 1966 VW Bug is like a happy pill!

My stasis didn't last terribly long. My husband grabbed me by the hand for a ride in his bug to the local snow cone stand. I got pickle juice, which matched my sour mood, but it really cheered me up.

I still tune in (almost) nightly for the live broadcasts from camp. I check the "cabin highlights" webpage daily, I send cards and emails, but I got into a new groove. I am far more comfortable in my skin as a woman, outside my roles as worker, wife, mother, caregiver. I feel settled and I hope she got settled with herself at camp, too.

This time apart may have had far reaching benefits for us as a family. And, I can't wait to pick her up Friday!

Sunday, July 7, 2013

Next Gen Pumps with CGMs Around the Corner?

After some vacation time, I am just getting caught up on diabetes news. Did you all read this from Reuters? "Medtronic Takes 'first step' U.S. sale of artificial pancreas."

I really, really want Medtronic Minimed to make this happen before December 31, because my insurance may change significantly. It has been a lot of years since I've upgraded. I'm ready now!

More details in the 80+ stories I found on Google.

Thursday, April 11, 2013

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

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. 

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

Wednesday, March 6, 2013

Artificial Pancreas Bluetooth Based at JDRF T1 Now Conference

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.

Monday, March 4, 2013

JDRF T1 Now Conference: I learned a lot!

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!

Saturday, March 2, 2013

Attending the JDRF T1Now conference in Austin

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

Sunday, February 24, 2013

Wow! Exercise make your blood sugar go low

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.

Tuesday, February 12, 2013

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

...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!"

Wednesday, January 16, 2013

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

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.

Thursday, January 10, 2013

When's it Going to be All About Me?

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.

Friday, January 4, 2013

Wow! Highest A1c Ever for My Tween

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.