Friday, August 5, 2016

Let Go or Be Dragged - 12 Years Parenting a T1D

Today is the 12th anniversary of my daughter's T1D diagnosis. She was three. Yesterday was the first time in more than a year I was able to get her to put on a Dexcom CGM. She's 16 at the end if this month.

 She has grown into the most amazing young woman. She is smart and strong, but beginning last summer, I let her take control of her diabetes for the most part, and now her HbA1C reflects a teenager's truly challenging ability to focus. Essentially, it was like giving my once toddler control. Teens brains are developing at such a rapid rate, their prefrontal cortex at this age is a newly used playscape. Everything we know about the teenage years tells us that the kids have way too much going on to manage this all by themselves. But they also don't want us involved. It's easy to push us away.

 So, as a mother, I'm sitting on this precipice of wanting to take control and wanting to set her free. I feel like overtime I've empowered her with the knowledge to understand her disease, but at this very juncture she needs very specific instructions on how to do this by herself. And it can't come from me.

So, after many months of health issues including fatigue, anemia-type symptoms, overall just not feeling well, trouble fighting off infections, difficult periods, she's come to see the connection between her high blood sugars and her body's inability to keep up. She's not quite there yet, but her denial is lessening.

She willingly put on the CGM yesterday for her endo appt next Thursday. I suggested that she needs to go into the appointment without me there the whole time. She needs to work out a plan with the diabetes educator that will work for her. I'll be there to help her with anything that she needs, but I've come to realize that my presence in the room overshadows her.  I have an awful lot of thoughts about things. Mostly they don't need to be said. She's got to figure out how to work with the nurse/doctors at this point. I'm simply not in control anymore. And she can do this.

Let go or be dragged!

Tuesday, January 13, 2015

T1 and Trying Invokana

Well, I started 100mg of Invokana today to try to reduce the amount of insulin I'm taking. My doctor recently upped my bolus ratio and I'm so tired of gaining weight to get better control, which causes me to need more insulin, which causes me to gain weight. Ugh!

Invokana is not yet approved for Type 1, but I recently participated in a trial to work toward that end. Unfortunately I got the placebo. It was a blind trial, but I knew pretty quickly it was not working. I did hear that a few people I our trial had excellent results. The trial was for 100 mg and 300 mg.

So, my doctor gave me some samples of 100 mg to give a try. I probably ought to wait for my cycle and PMS to pass, which puts me on a much bigger daily dose, but I figure what the heck, let's give it a whirl. I'm on a pump and I dropped my basal 10 percent off my standard rate. I also dropped the new bolus ratio by one full unit. I am wearing my Dexcom with CGM in the Cloud to use Nightscout and the Pebble watch, so I can monitor my BGs closely.

I will be drinking lots of extra water and taking a probiotic daily, which I read is helpful in fighting the yeast infections that have been reported. I have read a lot of forums and they actually seem to be pretty rare, but better safe than sorry.

Wish me luck. I've read very positive results.

Monday, October 13, 2014

Happy Diaversary To Me! Thirty one years with T1

Today on the Columbus Day Holiday off school, October 13, 1983, I grabbed a huge glass of orange juice on my way to the doctor. I was soooo thirsty. Peeing lots too. So headed to the doctor to find out I had Type One Diabetes.

My dad was on a business trip. My mom was awesome on the outside, but inside she was devastated. I know that feeling intimately. I felt it when my daughter was diagnosed. But I remember sitting with her in the doctors office talking and saying how thankful I was that it wasn't some thing more serious. Something life threatening. Cancer.

My week in the hospital was fine. Learned to take shots with oranges. Had syringe water fights with my roommate who had asthma. Asthma is horrible, I would think. Shots are easy compared to not being able to breathe.

My mother also had the bright side in her back pocket, "You eat how everyone should eat! You are so healthy!"

It is true that diabetes sucks. But it isn't the worst thing that could happen. I'm grateful for my mom and her attitude toward diabetes. I'm thankful, I can share that optimistic view with my girl. I am thankful to be completely healthy. Happy. Well.

Sunday, August 24, 2014

CGM in the Cloud & Now On My Watch!

People! It is here! I can see my child's blood sugar all the time!

The Nightscout Project, developed by a group of engineers and hackers with T1 or are parents of kids with Type 1 Diabetes created a way to plug a smartphone into the Dexcom receiver and have it upload to the cloud.

Now I have a website that I can keep up on my desktop, iPad, or phone that virtually mirrors my child's Dexcom readings and will alarm if my daughter is low or high.

I also can upload the info to the Pebble smartwatch, which is what you see on the left.

Now, I don't want you to think this is out of the box easy. I spent a lot of time reading posts on their CGM in the Cloud Facebook page, watched the instruction videos multiple times and spent about a week researching phones, cables and storage containers to carry the "rig."

But, it was easier than I expected. Every time I had a question, I posted on the Facebook group and got an answer, even after midnight.

At first I thought this might be a bit over the top for a teen starting high school. PERFECT for a toddler! But would she want me lurking on her like this, but after talking to her about it, we realized this could be hugely helpful. She is still a growing kid with a brain that is firing at a million times a minute. She is starting high school, in marching band, on the swim team and hardly ever is at home. So this is a win. Plus, she can view her on readings on her phone, which never leaves her hand.

The thought is that I am back up. If I see her numbers climbing sharply around 1:00 pm, I can text her, "Bolus?" to make sure she got insulin for lunch. She can then take care of it before the freight train of highs plague her all afternoon. Forgetting is a big teen problem.

So, here is a screenshot of the website on my ipad.

I'm not going to go into set up, because that is all online at Nightscout and Facebook. But here are the elements of what's needed:

  • Smartphone that can take an OTG cable
  • Specific cables for data transfer
  • Dexcom (extra receiver helpful)
  • Data plan for smartphone (most of us use for about $9/ month and share referral codes that give us $$ credit when someone uses it)
  • Optional Pebble watch, but not necessary.
  • Time

What amazes me is that an engineer and dad like John Costik, one of several founders of the Nightscout Project, made this happen for his own son. He loved the Dexcom, but not having his sons numbers available at a glance was inspiration enough to make what is becoming a very helpful tool for hundreds of T1s or parents of T1s. Six Until Me did a great interview on the process that led to us all having access to this amazing info at our fingertips.

The philosophy behind making it available to all is simply, #WeAreNotWaiting.

#WeAreNotWaiting while our endocrinologist tries to assemble the disjointed pieces of the data puzzle.
#WeAreNotWaiting for competitors to cooperate.
#WeAreNotWaiting for regulators to regulate.
#WeAreNotWaiting for device manufacturers to innovate.
#WeAreNotWaiting for payers to pay.
#WeAreNotWaiting for peace of mind that our children with type 1 diabetes are safe.
#WeAreNotWaiting to get some decent sleep for the first time in years.
#WeAreNotWaiting for our child to be able to safely have a sleepover at friend’s house.
#WeAreNotWaiting to give our child a better chance to succeed at school.
#WeAreNotWaiting for others to decide if, when, and how we access and use data from our own bodies.
#WeAreNotWaiting to build applications that focus on design and usability.
#WeAreNotWaiting to compel device makers to publish their data protocols.
#WeAreNotWaiting to insist that patients have access to their own diabetes data.
#WeAreNotWaiting to allow PWDs to have a choice in how they see their own diabetes data, and not be forced to use substandard software delivered that comes with their device.
#WeAreNotWaiting to make it easier to get data off of devices.
#WeAreNotWaiting to bring together the best and brightest minds from around the world to help make things better for PWDs.
#WeAreNotWaiting for the cure.

Tuesday, August 5, 2014

T1D Diagnosed in my Toddler 10 Years Ago Today

Happy 10 year Dia-versary to my now 13 year-old daughter and Type 2 Dia-versary to my husband.

My daughter was just three when she couldn't stop drinking or peeing and my husband decided to take her blood sugar. It said, "Hi." He didn't believe it, so he took his own. It said, "257." Clearly, the meters were broken.

He tried again with my other meter. Same results. I remember the phone call that drained the blood from my body. The wave of fear that hits like a tsunami. I almost slid under my desk.

My husband asked me when trying to get pregnant what the chances were of having a kid with T1D. I remember that conversation and confidently reporting that it was only a 7 to 10 percent chance according to my endo. Chances are a funny thing.

T1 Traveler...I Had Issues: Part II

We are at the airport in Costa Rica and my blood glucose has been running kinda high all morning. I corrected on the drive (2 1/2 hours), but we also stopped and got snacks. Waiting at the gate for the flight I see the double up arrows and realize I need an infusion set now.

I open my carryon, pull out my supply bag and guess what? No infusion set. I have everything on earth! But no infusion set. So, I quickly decide to go on Lantus. I bolus, give shots for my high BG and everything worked out ok. I still had my CGM connected, so I could monitor the results.

I didn't realize until a few years ago that your dose of Lantus is equal to your total basal rate. Worked pretty well.

So, you can always be prepared, but you also need to be prepared to be flexible!

Monday, July 28, 2014

T1 Traveler...I Had Issues: Part 1

Howdy all! I just got home from Nosara, Costa Rica with my family. It was an amazing trip, but can one ever travel so far from home without incident? Hell, no! One thing I am glad about is that it was me and not my daughter with the problems. I know myself and can judge from the inside what to do next.

So, I was prepared. Really prepared. Tons of supplies and insulin. Blood ketone meter. Lots of back up, so running out of stuff wasn't an issue.

Playa Pelada, Nosara, Costa Rica by Wendy L. Morgan 
My daughter loves to surf. This is partly why we chose our destination. I had to get it all on camera, so I also went out in the surf. We typically checked our BG before going in and typically took an hours worth of basal to carry us over.

One of those days, we had afternoon surf session and I guess I hadn't had much to eat at all that day. Couple corn tortillas and some avocado. It was hot and I wasn't hungry.

 My BG was 130 going into the water, so I didn't bolus any extra as I was worried I'd go low. By the time we got back to our room, I was feeling high and indeed I was about 300 and felt like I had ketones. I had moderate levels and felt pretty crappy for an hour or two. I got my BG down and realized that that was a pretty weird episode. I reviewed my day and wondered if my lack of food and seriously increased activity, along with a hour and a half of no insulin made my ketones spike.

Unfortunately, that wondering didn't stick. Three days later, we had a morning surf session and I did the same things. No bolus for basal. No breakfast. We were also out there longer than I planned.  Two hours later I stood on that beautiful beach wrapped in a towel and felt the ache of ketones spread across my chest, across my shoulders and into my back. I felt nauseous and my body felt sick. It came upon me incredibly fast!

We got back to the room and I began to drink a ton of water. This was hard and it felt very serious. I was in a tiny village in Costa Rica. I checked my BG and it was 250 with 1.2 blood ketones, so I book used. Then 20 minutes later I was 350 and at 1.9.

 I had piled a towel on the table in front of me to lay on because I was afraid to move.  I laid my head down between sips of water. I took a total of 15 units with three different injections, then worried I'd taken too much. I was worried I'd need an IV. I was worried. Period.

I drank and drank and tried to Google (we had wifi in our room) "DKA self care," and got results that indicated I could really be in trouble. That's when I began trying to reach a diabetes educator friend on Facebook messages.

 I typed by desperate plea for guidance and realized I was killing time. As I typed, I think I even wrote that I was waiting for the water and insulin to work and trying not to puke. I needed to be doing something to help myself, so writing to her was it.

She responded promptly! She asked if I had Zofran, the anti-nausea medication, and of course, I did! She suggested I take that to keep from throwing up all the water I'd drunk.

 By the time she responded everything was beginning to work, so I didn't taken the drug, but knowing I was doing everything right was a big relief. I asked her if I should take more insulin, but she said wait two hours and see where I am.

I trended slowly down over the next two hours and my ketones dropped to 0.2. This was great news, but that whole thing scared the holy crap out of me. Ketones from exercise, lack of food and no basal insulin, was new to me.

Most the websites I found during my Google-medical-care-abroad session talked about such basic stuff like don't exercise with high BG or ketones, but nothing described what I had just done to myself.

I ate a big lunch and loaded up for future trips to the water with plenty of food and insulin on board. Lesson learned 30 years into this pain in the ass disease!

Next post, my flight home! Diabetes adventure número dos!

Friday, June 20, 2014

New Tool: Sugar Surfing - The Book

I just discovered this book that is set to come out in the near future and thought it might be of interest. It is written by Stephen W, Ponder, MD, who has had diabetes nearly 50 years and is a pediatric endocrinologist north of Austin. I've seen him speak several times and I love his perspective on diabetes care. The project is fully funded, but you all may be interested in picking up a copy. I've learned more than a few helpful things from his Facebook page and blog, The Power Within, and I bet the book will be cool.

One of my favorite tips I learned was when high from a pump occlusion, take your correction plus two hours worth of basal insulin right away, then set your pump at 0% for two hours. It helps you expedite the descent after a high blood sugar and not crash later. It's worked perfectly for me and my daughter.

Here is a link to the Indiegogo site to read more.

Sunday, June 8, 2014

T1 Teen's First Night at Camp with Major Hypoglycemia

I get a frantic text (6 or 7 actually) about 10:00 pm. She is worried about everything. People, roommates, strange environment. We get her to a place where she is calm and says she can go to sleep. Whew! She was 94.

Thirty minutes later, she texts me and is absolutely having a panic attack. She is struggling with her thoughts, worried about her diabetes and about having a seizure, which she has never had, and was worried she'd be low all day the next day. You name it, she was freaking out about it. She then says she is hot and sweating. Shaking. I tell her to get her key and go to the counselor next door. She argues that it is really late and she is probably sleeping, but that only lasted for a minute.

She makes it next door and the counselor welcomes her in. Her CGM says 74 and dropping. I bet she was already in her 40s. She drinks two juices and turns off her pump for 30 minutes. She gets to feeling better. I change the settings on her pump. I'd rather her run a bit high, than low. Dude. She was in a rough place.

She got to feeling much, much better and realized all her thinking was low-thinking. If you have T1, you know what I'm talking about.  If you're a parent of a kid with T1, low-thinking is not pleasant. Your brain isn't working well. You think erratically and things can feel very bad and pretty scary. It sucks.

Anyway, I had her stay with the counselor until she hit 80.

She spends the day tomorrow in the marshes around Galveston. Say an little prayer for safe equipment (pump and CGM)! May the dry bag keep those items and her safe.

Saturday, June 7, 2014

Sending 13 Year-Old T1 Off to Week Away Camp

My girl is a freshman now! Whooo hooo! And the first thing we're doing is pushing her out of the nest. Tons of supplies packed. Two pages tips and notes for counselors and a reminder to her that she controls the destiny for this trip by looking at her CGM every couple hours and acting on the numbers she sees. Wish us luck!

Wednesday, January 22, 2014

Crisis Averted: Flu is not taking us down!

Well, we all got flu shots, but spending an entire weekend with (a non-symptomatic flu carrying) friend in close quarters for four nights and five days, leads to the flu. My daughter, now 13, got a fever yesterday after her BFF got one the night before. Unfortunately, somewhere along the four hours of napping, her pump became disconnected and we didn't realize that until after two corrections for seemingly explainable highs and a bunch of breakfast tacos for dinner.

587 mgdl. Five hundred eighty seven milligrams per deciliter. That was how we found out. Only moderate ketones, but she was feeling sick. I begged her to drink water, but she couldn't. On the phone with doctor, who I haven't called for help since she was 10, she suggested I wait to see if bolus worked and then maybe head to ER. Teenager said she couldn't wait, so away we went.

It wasn't DKA, but it's hard to communicate with ER nurses in a way that doesn't sound condescending. Especially when all you want is a line inserted and saline dripping. It's all she needs and it is the slowest things coming. We had a good experience except for missing her vein and having to try again in her hand. They were good to us, but it just all takes so long. They come to report that her blood sugar is 570 from the blood they drew an hour ago.

Ultimately it took six or seven hours to get get BG down below 300. Her ketones never climbed, which was our reason for coming to the ER. Her fever is still there and she is sleeping with 140 BG and a new CGM sensor on.

I'm so glad we went to the ER. The flu shouldn't have hit her at all, and with T1, it has a whole new level of worry. She mentioned last night one of her T1 buddies from camp was in the hospital with the flu. I hope he is doing well, and am glad he shared his story with my daughter or we may have waited a lot longer to seek help. Humbled by diabetes today.

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.

Monday, December 24, 2012

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

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!!

Tuesday, December 4, 2012

Amazing! Love Dexcom G4 Platinum

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.

Sunday, November 25, 2012

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

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 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.

Saturday, October 13, 2012

Medtronic Survey of New Pump Style Options

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!

Tuesday, October 2, 2012

One Last Idea on Manual Insertion of Medtronic Minimed Enlite

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'...

Monday, October 1, 2012

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

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.

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!

Wednesday, September 12, 2012

Bayer's Contour Next LINK Meter Now Medtronic Standard

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 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

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!

Saturday, September 1, 2012

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

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.

Friday, May 11, 2012

Medtronic Trial: Enlite Sensor Questions

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?

Monday, May 7, 2012

Medtronic Trial: No Veo

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

Tuesday, May 1, 2012

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

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!

Sunday, April 22, 2012

Medtronic Trial: Bayer Contour Next LINK Investigational Meter

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?