I have to give it back...

I got a call from my Endo's office today to remind me of my final appointment related to the CGM study. It is on Friday, March 9 and no, Abbott did not choose to extend the study. Sad, sigh...

I have been running high all week...made adjustments to my basal rate with little effect. It is PMS; hormones make diabetes so difficult! Even with the CGM it is hard to"watch" and evaluate yourself all the time. Definitely more to share on that subject later.

Adding Insulin and Food Data into Navigator

I just had a great question from Val about how the insulin and food information is input into the

Navigator, so I thought I'd post some more photos to show you how.

Next, you have to go back to the main screen as pictured in the second image and select "Meals," then:

Freestyle Navigator Software--CoPilot

Thought it was about time I posted some screen shots of the Navigators software--CoPilot, so you can see how this works. I have to admit, I haven't downloaded my stuff very often, but obviously the potential for achieving very tight control is astounding. I thought these screen shots could be enlarged, but they look very lo res (aren't). Don't know how to fix that.

This is a shot of the Daily Combination screen. The line graph is obviously my blood sugars over a day, the circles as sized in relation to how many carbs I ate and the bar graph (largely irrelevant visual) shows how much insulin. The nice thing is that you can see patterns how highs in relation to boluses or food. The screen on the program is not sizable, so here is the bottom half of the screen shot:

Shows actual carbs and insulin numbers. Could eliminate the bar graph for insulin and just show on one screen under food, but I really like the circles. I am very visual, so I see patterns easier than just looking at numbers.

This is the Diary List. Pretty impressive amount of data. I like the apple, indicating a meal. Neat-o!

Glucose Modal Day shows multiple days of readings together. I am showing three days, but you can look at as many as your eyes can handle. Great for showing serious dips or highs at specific times each day. The triangles indicate a finger stick test at calibrations.

Straight ahead Histogram Report. Pretty green , eh?


Gotta love the Pie Chart. There are a million more charts below the first row, but you get the idea. My favorite is the absence of yellow!

Stats, stats and more stats. Plenty of data and oh, by the way, if your Endo is hooked up, you can link to his/her computer and upload your info when you need assistance or adjustments to your insulin levels. Haven't used that function, but it is cool!

Good stuff. Lot's that can be improved upon, but overall, the most helpful program I have ever downloaded related to my diabetes equipment. Again, the Daily Combo is my favorite, but the software doesn't have a feature to click through days; you have to enter in the date from the calendar and wait for it to find it. Major silly.

Diabetes Connections

Last night I was at a lovely event called Night in the Galleries hosted by the Austin Fine Arts Alliance. Marshall and I traveled between nine galleries drinking wine, eating lovely bites from renowned chefs and decided to close the evening on South Congress Avenue at Yard Dog, a favorite gallery with folk art and a great back yard for parties. Taco Deli catered at this spot and for the first time all evening, I felt like I was eating real food.

My CGM said it was going to be time to replace the sensor soon, so I opted to just take it off before we headed out; I didn't want the thing beeping at me all night. At our first stop I ran into friends from a wide circle that it turns out all know each other from some past life. One friend, G., is a tremendous advocate for type one diabetes research and her family contributes significantly to JDRF. Well, we all introduced ourselves, it turned out that everyone in our circle had a connection to diabetes.

Later, we ran into my husband’s best friend D., who was diagnosed with T1 while he was in medical school. We compared blood sugars after the gallery stop with fried risotto and cheese balls; we both shot way high on an evening where counting carb was an art form.

As we were taking the shuttle back from our final gallery stop to the after party, D.'s wife asked for Marshall's hand. He put it out and Darren held his finger tight and pricked his finger by surprise to test Marshall's sugar: 104. Dr. D treats Marshall's T2. D. raised the finger sticker in the air concerned for every ones health and called for volunteers, "Free blood sugar tests!"

Did I mention the really good and free wine?

4 and 1/3 slices of pizza; 5 apple slices; one, no, two glasses of milk...

I often take for granted how adept my child is managing her own disease. She is six and a half and uses a Minimed 512 pump and has since she was just four. As we were eating pizza tonight with her friend who spending the night, I watched her shoveling it in. I sat and watched, guesstimating the total carbs as she peeled the cheese off one slice and eat about 1/3 of that crust, then fold another little slice into a rolled pizza sandwich, eating 2/3 of that. She ate five out of eight apple slices and guzzled her milk (did she go get more from the fridge??? No.).

I do some quick calculations and came up with 65 grams of carbs. She pulls out her pump and confirms, looking me in the eye, “65?” “Yep,” I say. She enters the numbers in her pump and tells me her insulin dosage in Spanish, “Dos punto ocho,” then runs upstairs to watch High School Musical with her friend.

Many of the parents I know with T1 kids would be having a heart attack about now. They carefully weigh and measure each serving, even counting the carbs on deli packages of sliced ham. I grew up with measuring cup shaped mashed potatoes; it traumatized me. It traumatized my mother.

The kitchen was not my mother’s favorite place, and then she has a kid with a disease totally dependent of food she has to prepare for me. Our dinners were very precisely thought out; back in those days I had two breads, three meats, two fats, one fruit and one vegetable exchange. She had all the cookbooks and tried to give me the most balanced and predictable meals possible. It was hard on her and my father. The pressure to be perfect as a mom is enough, but to then be judged by blood sugar readings is just too much.

I never really saw how hard it was for her. She is an amazing woman; lots of core strength that I don't think she acknowledges. She framed me and shaped me. Things were what they were, and we did the very best we could to contend.

My daughter has the benefit and detriment of having a mom with almost 25 years of history with T1. I pretty much think I know everything (I am constantly proven wrong). My perfectionist tendencies are around my work, my housekeeping (or lack thereof), her school work, but not around the diabetes. I know she is alright, after all we check her blood sugar virtually every three hours.

Her A1C's are below 7, so there must be something to this. I worry about the big things like her falling on her head out of the tree in the front yard, about the tangles in her beautiful curly hair and dealing with broken hearts over who got the most candy at Valentine’s Day. I am doing the best job I can caring for her diabetes. Her blood sugars are going to be high, they are going to be low, and I know how to take care of that usually. If I can't figure it out, I call her diabetes educator, she'll know. I know how many carbs are in most everything and if I don't, I'm a good guesser because a good guess is really ok. What more can I do? The best I can do is good enough; it has to be because that is all I have.

Sickness

So, last week my six year-old daughter woke up with an excruciating earache. She screamed for hours and the following day she ran a little high, but presented ketones. I got them down with an increased basal rate, but in the meantime, I was awake with her several hours at night helping her manage the pain in her ear (nothing was working) until the doctor finally prescribed oral antibiotics. I slept about five hours a night for five nights.

Saturday, as the medicine began working for my daughter, I started to feel sick. My blood sugars were OK, but I had the most awful feeling in my head (between nose and throat). I took herbs, zinc, vitamin c and thought I would surely kick this sickness, after all I just don't get sick often. Sunday I was stuffy with a sore throat, still believing that I was about to ward the thing off, but then came Monday.

Oh! I felt like total crap. Mild fever at 5:00 a.m., blood sugars beginning to soar, ketones with a blood sugar of 230. Sickness was here. I spent Monday morning ignoring that it was bad; I kept thinking it would be gone in a few hours and around 2:00 p.m. my CGM went dead.

I had a warning that my battery life had one week on it, but that warning was wrong and it died in three days. At this point, I ripped the thing off, because you can't just replace the battery, you have to change out the sensor too. I fell asleep for four hours and woke up feverish and miserable. My ketones were now high and I had to go back to finger sticks.

Somehow I mustered the energy to change my infusion set (which I thought might be occluded), give myself a shot to counter my 300 blood sugar; I replaced the sensor and batteries in the receiver and went back to sleep. That was exhausting!

I did this from my bed with a 102 fever and I swear, it is never just one thing with diabetes. It is the infusion set, your are out of strips for your meter, you can't find a battery, the control solution has disappeared, you are out of juice AND milk; all your syringes are gone, the prescriptions aren't refilled, the insulin fell on the floor and broke open (and you don't have a refill at the pharmacy). I've just come to expect to sit down with every supply I own, because one issue leads to another and I really hate getting up to look for one more thing..

So, the smartest thing I did was get my hubby to call the doctor and get me medicine last night. If they worked for my daughter, they would work for me and here I sit, fever free (although rambling a bit).

My CGM wanted calibration at 3:00 a.m., and I was 60, the lowest I've been in sometime, as I get a warning at 65 and usually correct it immediately. So I had to check again in 20 minutes and again at 5:30 a.m., but I was so glad to know it was on and working.

Last night I slept 11 hours and today I did nothing. This blog is the most I did and it was nice to be quiet, even though I can't breathe through my nose. My dear sweet husband bought me tissue with lotion in it; I never really knew how valuable that gift could be.

Photo from www.parody.org/.../tissue_box_cosy/index.html, where you can learn to make your own fuzzy tissue cozy!

CGM Revelation

So I learned something today that has me pretty jazzed. I was volunteering at my daughter’s elementary school power washing portable buildings before a big painting overhaul. I had to run home for something and I glanced at the CGM because I felt a little like I was getting low. It read 167 with a south east arrow. I had an instinct grab a juice box for the road. Sure enough, thirty minutes later I got a projected low alarm.

The SE arrow was an indicator, but that doesn’t necessarily mean I will go below 60; I may head to 85 and stabilize. But I am beginning to recognize the “feelings” I have and draw a direct correlation with what happens to my blood sugars over the next hour. The CGM is validation of what my body is already telling me very subtly.

So, with information comes trust; trust in my intuition. If I wasn’t wearing the Navigator, I wouldn’t know exactly what was going on and these very slight changes would be easy to ignore. I would have never grabbed that juice and would have found myself surprised and low. The thing that is killing me is how carefully my body tells me what is going on, but when I didn’t have the constant flow information with the CGM, I couldn’t process the very slight changes I felt as a sign of things to come. I am accidentally training myself to recognize how my body reacts .

This is by far the coolest revelation I've had using this device and I will have a much better understanding of my body even when I have to give the Navigator back. I pray they extend the study another three months. I would really love to see how much my A1C changes now that I am learning so much. This stuff takes time. I wonder if this side benefit as been documented by other patients. I’ll ask at my next check in.

Photo by Leslie LeCornu © 2006

Slacker Heaven with the CGM and a Word About Diabetes/Life Balance

Have I mentioned lately that I really love this CGM? I just downloaded the software, which I was obviously very hesitant to do, because I didn’t want all that information. I get diabetes overload. I am approaching 25 years with the disease and I just get plain sick of thinking about it, which is the perfect time to have a CGM. You blow everything off, but an alarm sounds if you creep high, or you slide below 60. This is a freaking miracle! I can blow off diabetes and still know that I am doing well with an occasional glance at the receiver. A-O.K. This is huge for the mental health of the lot of us!

So, it is time to address one of the main reasons I started this blog; I have chosen a life at peace with diabetes, a life with balance. My philosophy on the subject is not particularly common; there is more than enough doom and gloom out there. I don't go there.

Since I was 14 I have had a good relationship with diabetes. I have my moments, but overall I have been very thankful that of all the illnesses out there, I was afflicted with one that forces me to eat healthy and do the things that EVEYONE should do to live long and healthy lives. As I have grown older, I became conscious of the importance diabetes played in my daily life, but it didn’t run my life. Well, actually diabetes had a lot more control of my life until I got an insulin pump (more on my very strong opinions about the pump later).

I rarely went to support groups, because the one or two I attended were filled with a lot of complaining, worry, suffering and misery. I didn’t need that. They were also filled with people who had been living with diabetes for 30 + years and they were experiencing complications I really didn’t want to hear about as a teenager.

In college, I was fed up with having no one around me who understood my daily issues, so I started a support group for 18 – 35 year olds in Austin, Texas; the majority of us were in our twenties. We talked about how we handled going to parties, making sure our friends kept an eye on us. We also discussed dealing with low blood sugars when no one has your back; your room mate is a total slacker or never around and you are left stumbling to the fridge for OJ hoping you don’t pass out on the way.

As the mother of a child with diabetes, I have constantly had to adjust my expectations of our life and of myself. I have lived my life before baby with a “good is good enough” mentality around my own diabetes, but this is my child we're talking about. She is small, sweet and innocent; how can this be happening to us? But trial and error have helped me find that there is no one in the world who can care for my child better than me. No endocrinologist, no nurse--even her diabetes educator can’t be more in tuned with her than I am. I worked to understand what our challenges are and I can see that diabetes isn’t the end of her life; it is part of who she is and part of who we are as a family.

My daughter is six and a half. She wears a Medtronic Minimed Pump; she has since the first month of diagnosis and she knows how to use it. She loves to count her carbs and show off her math skills; she independently takes her insulin after she finishes a meal and has checked with me to confirm her math. She loves to “guess how many carbs” are in things and takes a good deal of pride in not needing help. This skill and comfort with her role in managing diabetes has made trips to day camp, play dates with friends and sleep overs much easier, but that challenge was never hers, it was mine.

In future posts I’ll write about how a life with diabetes can be a life of balance. I'll also fill you in on my new Navigator Co-Pilot software.

Photo by Leslie LeCornu © 2006