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

CGM Trial: Gratitude and Curses

Some notes about the things I am most grateful for and some things that have just been bothersome about the Navigator.

Grateful:

• Seeing B.S. 24 hours a day
• Using line graphs to determine trends and problems that I can fix
• Impressive CGM's receiver and transmitter distance range: I left my receiver in my bathrobe pocket after getting dressed and it was still tracking me downstairs for hours.
• Ability to shower with transmitter, but can't really imagine that other companies wouldn't create something with the same capabilities. For God's sake, we take showers once in awhile.
• Love the warnings for projected highs and lows, especially the lows. Avoided a few hair situations
• Transmitter is relatively small
• I just learned that when looking at a particular screen, you can hold the up or down button to keep the screen active and not time out. Wow. Good to know!

There maybe lots more I love, but I am anxious to skip to the curses and get them off my back!

Curses:

• Calibrations lately have been extremely inconvenient IF I don't put the sensor on at night. I changed it at 10:00 a.m. last time and the calibration bell rang at 8:00 p.m., while I was at an event. I waited until I could calibrate it around 10:00 p.m. and the calibration failed because my blood sugar was dropping too fast. This meant I had to wait 30 minutes, and again it failed. This went on until I finally got the calibration about 11:30 p.m., BUT I had to calibrate again in two hours--1:30 a.m. I was TOTALLY exhausted and was very frustrated by this. I will not put this on again in the day time. Same problem can happen with nighttime application if you are in meetings first thing in the morning. Overall, the calibrations have been frustrating when you are not perfectly free to take care of your diabetes FIRST. Sometimes that is not possible and at times this blessing can feel really inconvenient.
• The darned sensor and transmitter are vulnerable--really. I was out of the shower, putting on lotion, and I bumped the transmitter as I was doing my arm. At first I was concerned about the lotion messing up the adhesive (I had no overbandage; I thought I learned this lesson already), but I actually dislodged the transmitter from the senor base. It fell off inside my shirt sleeve about ten minutes after I was dressed. This prompted the above a.m. re-insertion.
• Screen is HARD to read.
• There are no "back" buttons on many screens you would really like to go "back" on, like the line graphs--you are looking at a two hour screen and you want to see the six hour; you have to wait like 30 seconds for it to time out, and then scroll through three screens to go back to the line graphs.
• The alarm sound is annoying; really grating on your nerves. Wish I had sound options (like a cell phone) since this is something I am living with daily and have to hear every day.
• The HIGH blood sugar alarm should have an option that if an "insulin" event is added, the alarm shuts down for 30 minutes. If you are over 300 and you give insulin, it takes awhile for you to come down, but the alarm keeps going off ever 5 or 10 minutes. Now, there is a "mute alarm for an hour" option, but I need to be warned if I haven't dropped in 30 minutes. Otherwise, I just go about my day and perhaps my infusion set is clogged, I won't know if I mute the alarm. Did I mention I don't like the alarm sound?
• Sometimes I can't find the receiver. I leave it upstairs, in my car, in my purse, on my desk, it falls out of my bag, is in my back pocket of my jeans, fell in the crack of the couch, but unlike my cell phone, I can't call it to track it down by sound. This is a real problem, but I can't think of an easy solution. The company that fixes this could rule the market!
  

OK, that is enough. I am obviously VERY grateful for the opportunity to be in this trail. I hope that some of the annoyances are resolved with use and the company listening to the users. This technology is AMAZING. I am awed at the potential, and even how far the technology is applicable to my life. I know the above curses are VERY easy to fix; they are just background noise to the benefits I have received.

CGM in NYC

Well I loaded up my CGM supplies (and a LOT of other stuff) and headed to New York City on Thursday for meetings. When I finally arrived after MANY delays due to weather at 1:30 a.m., I put on a new sensor and transmitter.

The following morning, I was unable to calibrate it--the sensor had failed. SO, I waited until 10:00 p.m. on Friday to try again, because it just doesn't make sense to do it any other time with the 10 hour and 12 hours calibrations (I had room mates and didn't want the thing beeping annoyingly at 1 a.m.).

Friday afternoon, after my calibration failed , I found that my BG kit with both my blood glucose meter AND my CGM receiver had fallen out of my bag at a previous appointment. I trucked back across town to get it, deciding that I MUST leave the Receiver/BG Kit in the hotel in case that happens again.

I put on a second sensor Friday night and it failed to calibrate the next morning. I was furious! Here I am eating NYC bagels (like 80 carbs), gnocchi and pizza and I don't have my beloved CGM. I NEVER thought to bring more than two sensors, because I should have only needed one for a four day trip, so I was out of luck. But I left the Receiver (my back up finger stick B.G. test) in the room safe and sound, then went shopping.

At FAO Schwartz, I started to feel low, so I pulled out my regular blood glucose kit to check my sugar and low and behold--ERROR. Oh! For Gods sake! I tried three more times, trying to warm the battery (which was almost new), tried a different bottle of strips; nothing worked. I ate three glucose tablets and begged my friend, still at the hotel to meet us for lunch and bring my CGM receiver.

Overall, the trip as fantastic, my blood sugars were good, but I expended an enormous amount of energy worrying about my equipment and my blood sugars, and trying to solve these problems. I was dreadfully paranoid the rest of the trip, constantly feeling my bag for the B.G. Kit, my cell phone, my camera (I felt like I was going to lose everything I owned; it all seemed so precious). This was hard on me emotionally and you know what? It is NOT easy to travel with diabetes.

I put a new sensor on last night when I got home and my first calibration failed this morning. I was about to throw the CGM out the window, but I tried again and found that my blood sugar was dropping too fast to calibrate. From 150 to 90 in about 10 minutes, then to 82 in about five minutes. I was up and running after a call to the friendly Navigator Support team. We suspect that my first insertion of the sensor in NY had too much blood (which it did--I was exhausted and didn't really clean it well) and that might have also gotten on the transmitter where it touches the sensor.

I am really glad to be home and glad to have this thing back on my arm and working.

I will be downloading the CGM software tomorrow. I finally upgraded my hard drive and am anxious to test out the Navigator Co-Pilot.

© 2007 Photo by Wendy L. Morgan

CGM: Back to Normal

My test results since last night have been right on target, back within 10 mgdl.

Also, found an article from the University of Clagary Titled, "Discovery opens door to new diabetes treatment: Discovery of a critical role for sensory nerves in diabetes opens door to new treatment strategies." Intersting and worth a look:

http://www.ucalgary.ca/news/december2006/diabetes-discovery/

CGM: Discrepancy

Well tonight is the first time I have seen a more than 10 mgdl discrepancy in my blood sugar readings on the CGM vs. a finger stick test.

I ate a snack and forgot to bolus right away and after while I was 277. I wanted to confirm it with a finger stick and it said 315.

Maybe when my blood sugar comes down a bit, it will be more stable. Interesting note.

CGM: Inserting a Sensor (Photos)

I have finally downloaded the photos of inserting the sensor. I have decided that I definitely prefer having the sensor on the back of my arms vs. my tummy.

First step is to clean the site with alcohol, then use IV Prep to prepare the skin for the adhesive. The next step is to place the sensor inserter against the skin. You peel the adhesive off, before you do this, so it helps keep the inserter in place.

© 2007 Photos by Wendy L. Morgan

Next, you twist and then pull out the yellow safety.

Next you push the big grey button on top with your whole finger, evenly across the top and that releases the sensor into your arm to a depth of about 5 or 6 mm.

Now, you squeeze the blue buttons at the base of the inserter on both sides and gently lift the inserter away from the sensor.

Next you have to check for blood and use a gauze to dab it up. I rarely see this much blood and it does not hurt anymore than an infusion set, actually less.

Now you slide the transmitter into the sensor unit and the sensor base.

You have to really squeeze to get it locked into place. I have started using an overbandage (Tegaderm) every time I put it on, so I have no problems with the adhesive coming loose before the five days are up. Seems to be working fine.

CGM Trial: 30 Days

So, I went to my doctor today and also checked in regarding the trial. I had to answer about a million questions about my experiences, but they also had some surprising questions about calibration time and about the size of the transmitter. Some of them were tough to answer:

• Would you prefer to have your first calibration and readings begin at 2 hours rather than 10, even if it meant accuracy might be compromised for the first eight hours of readings? Hmmm.
• If readings began with a first calibration at two hours, would you be willing to calibrate (with a finger stick test) every two hours for the first eight hours of readings? Hmmm again.
• Would you be willing to insert a new sensor and wear it with the old sensor on during the calibration period? Heck yea!
• If the transmitter was half the size, would you mind if calibrations began at 10 hours? Uh, no! I would love this thing to be smaller.
• Would you rather the unit length and width be reduced or the thickness?

I found these questions intriguing and they made me really happy. They are actually interested in what we think and may make changes based upon our collective comments. I am so glad I get to tell them my opinion, however the questions that were like the above had me really thinking hard. The biggest benefit of the Navigator so far is the accuracy. It is dead on compared to my finger stick tests (within 10mgdl). So, am I willing to sacrifice accuracy (even if it is just a chance of things being off) to get my readings sooner? Probably not, but I could not answer this question with a strong "no." Waiting 10 hours for calibration is a long time, however, if I insert the new sensor at 10:00 p.m., my first calibration test is at 8:00 a.m. Next calibration is at 10:00 a.m. The next is again at 10:00 p.m.

That is not so inconvenient. The real issue is when you insert it a 5:00 p.m. and you have to do a check at 3:00 a.m. and again at 5:00 a.m. There is a simple solution, instruct people to do it at night.

Two hour calibration would be nice though. There is a moment of great joy when the readings begin. My doctor made some basal adjustments today and I have been humming along in range (70-170) all day; just one bump to about 185 after dinner.

I also had a major "ah ha" moment, that I had completely forgotten about since before the birth of my child (that was six years ago). I run high a five to seven days before my period. I was around 200 the whole darned week. The day after my period started, bam! back to normal. I can't believe that it has been so long since I tracked those changes in my body. I really wasn't taking my sugar enough to notice the trend. Hence the brilliance of this little CGM. Doc helped me set a temporary basal patter with a .1 unit/hour adjustment for starters. We'll see how that works; I bet I need more.

One request I made in writing on my survey is that the study continue a total of six months, not just three. By the time I get my first HbA1C in March, I will have just gotten into the swing of things. I really want to see two readings, three months apart. I was in shock at my last reading--8.5; that is the highest it has been in 10, maybe 12 years.

I promise to post more pictures soon. I know, promises, promises, but I have been really short on time.

Personal Renewal Group for Mothers Living with Diabetes

As mentioned in my profile, I am working on a national initiative to help women reconnect with who they areand experience greater balance in their lives. Last year I joined a “Personal Renewal Group” for moms, led by a career strategist and work/life balance coach, Renee Peterson Trudeau (http://www.reneetrudeau.com/). Our small group of mothers (about 15) meets once a month because we all want some kind of change in our lives – less anxiety or perfectionism, deeper connections with family and friends, more satisfying relationships. Working together, we are changing our lives for our own good (and that of our families).

At the urging of PRG moms, Renee has written “The Mother’s Guide to Self-Renewal: How to Reclaim, Rejuvenate and Re-Balance Your Life,” launching in May 2007 (with limited advance copies available on her website). The book is designed as a year-long journal that supports women as they explore their values and attitudes toward parenting, work, relationships and life-long goals.

This spring Renee will train women to start and lead their own groups for mothers in their communities. I have been working with Renee promoting the book and will be trained as a PRG facilitator. I will host PRG groups within my circle of friends, but am also planning to offer PRG's supporting mothers of children with diabetes and also mothers who have type one diabetes in Austin.

PRG has helped me prioritize what is most important and has restored my family’s balance as much as my own--my life has changed so much for the better. Diabetes is an all-encompassing disease that weaves its way into our entire family's life. Mothers usually put their kids first, but caring for children with diabetes is especially draining and it becomes very hard to fill your cup first. Mothers who have diabetes are busy being mothers--diabetes self-care often takes a third or fourth seat at the table. PRG and The Mother's Guide gives stressed and harried mothers permission to care for themselves, reconnect with who they are and create balance from the "inside out."

If this speaks to you and are interested in learning more, please e-mail me at PRG at WendyLMorgan.com.

CGM Trial Day ????

I'm sorry for the long delay in posts. I have been traveling and have had a heck of a time catching up after the holiday.

I had to remove the sensor and transmitter before I boarded the plane. I also had to remove the battery from the transmitter and "unlink" the receiver from the transmitter, so no radio signals would be flying around during flight. Not so technical, but generally accurate.

Other than having to take off the sensor earlier than the five days, this was not much of a problem. My travel schedule allowed me to re-apply the sensor and transmitter when I arrived and by early morning the following day, I was tracking again.

I went to Jackson Hole, WY and I am from Texas, so imagine the weather shock! I found my blood sugars ran exceptionally high during the trip and I had a heck of a time adjusting my ratios. It was nice to have the CGM, but to see constant 200s for hours on end was frustrating. I’d try a third bolus correction in an attempt to bring it down, eventually crash to 50, then bounce right back up again to 200. Not much time was spent above 300, but my insulin just didn't seem to work right at 9,000 feet.

The screen now has a dark spot on it, probably from being in my pocket, but that is where I keep it and it should hold up better.

Also, the adhesives I was provided to cover, and keep the transmitter/sensor affixed to my skin have permanently affixed themselves to the transmitter surface. I have tried to get the gunk off, but it won’t budge. The trial folks specifically told me NOT to use Unisolve, so I will ask at my next follow up visit about keeping the unit clean without damage. They say to use alcohol swabs in the manual, but that does not work.

I have checked my blood sugar against the unit several times and it is still reading within 10 mgdl. I am impressed with the accuracy; however I had two instances where I got a “Projected Low Glucose” (a 30 minute projection of a low that can also be set for 10 or 20 minutes) at about 5:00 a.m., I drank a juice, even though I was about 150 and then just climbed from there. As I said this only happened twice and I wonder if my hormones kicked into gear increasing my blood sugar around the same time my insulin was peaking and starting to show a low glucose trend. It hasn’t happened since, so who knows.

I will post some photos of inserting the device tomorrow. I will also post some photos of the dark spot now on the screen.

I did not have any problems with the unit because of the cold in WY, but that is mostly because I wore it on me. I went dog sledding and it saved me from a low!

Now I am just trying to get over the holidays, and get back on a schedule where I can take advantage of always knowing my blood sugar. The holidays are always tough when it comes to food, and having the CGM was a blessing, but I can’t say it was any easier to control my consumption!

Day Nine & 10: CGM Trial

Howdy Folks!

So my travel day was interesting Wednesday. I removed the transmitter and sensor at 5:45 a.m., got to the airport and waited for my flight. It was delayed, but I got on the plane and waited for another half-hour. The flight eventually was delayed so long that I would have missed the very event I was planning, so we were forced to call the whole thing off. I got off the plane and came home.

When I got home I put a new sensor and transmitter on my right arm. It was fairly easy, although I still struggled a little getting the transmitter snapped into the sensor mount. At about 8:00 p.m., I was digging in the closet for wrapping paper and bumped my arm. Sure enough the whole darned unit popped off. Pretty frustrating as I was one hour from calibration. I had just walked the dog and was a tiny bit sweaty, but no excuse. The adhesive should hold better.

I put a new sensor on my stomach and immediately put on over-adhesive (Tegaderm) and was alerted at 6:30 a.m. to calibrate the navigator with a finger test. I now know the best time to put the thing on is 10 hours before you want to get up in the morning.

I have to say, I am not as thrilled with either this insertion, or the adhesive issues. I peeled off the Tegaderm and re-applied it because it felt like I put it on too tight and it was making the unit edges dig into my skin. Yesterday, it just felt uncomfortable, so I took off the adhesive very carefully avoiding pulling the whole thing out and put on the other brand of adhesive they gave me (forgot, will look later). It feels better today, but I am hoping to try the arm again (WITH an adhesive over it )at the end of this session.

Regarding comparisons with my meter, I have checked four or five times and the results are between two and 10 points different. Works for me!

I got a question about water protection on a previous post and the sensor and transmitter are waterproof up to a depth of three feet. The receiver is not protected and needs to stay poolside, however, if you are within 10 feet of the receiver you can still get readings, which means if you start to go low while swimming, you can take action.

I leave on another trip to snow and cold on Dec 27 through Dec 31. I am going dog sledding, so I'm glad I'll have the Navigator watching over me.

My blood sugars have been really all over the place last day and a half. I changed my infusion set on my pump, but I am hoping things settle today (especially with the Christmas parties this evening).

Will be checking in infrequently over the Holiday break. Happy New Year!

Day Eight: CGM Trial

Today was a very busy work day for me with a PR event downtown. Thank God I had the Navigator because I would have gotten low and never know it. I was running around like crazy coordinating things when I got a warning. I stopped what I was doing, went into the neighboring restaurant and asked for some Coke and proceeded to get back to work with very little interruption.

No emergency, no panic, no worry. I just got it taken care of and it wasn't an issue.

Regarding the sensor and transmitter being in the back of my arm, it was a little uncomfortable last night in bed when my arm is flat against the bed. Turning over on my side, I felt like it was in the way, but throughout the day it has served me well.

Someone asked about comparisons between the Navigator and the finger sticks on my previous post. I did a few in the first few days with very comparable results, but this is a good idea and I will do more in the coming weeks, so look for those.

This is my second calibration with a new sensor (you take finger stick readings at four different intervals from the time you put the sensor on and it becomes active to calibrate it) and I had a discrepency between the Navigator Finger Test and the Navigator CGM readings today by 30 points. I was also hitting a low at that time, just after my event when I waited to take action, so the calibration isn't very effective if you are swinging high or low, so I'll report more as I experience it.

Two more comments, the Navigator screen is plastic and it is becomming really skuffed up pulling it in and out of my pocket, where I think most people would wear it. I also think the read-outs are hard to see without the background light. I have good eyesight, but the black letters and numbers are small (except the blood sugar number) and the grey background is just tough. I think this could be a real issue for people that are older or have vision issues. Wish it looked like the screen of my Palm or cell phone.

Second, I am irritated with the menu and scrolling options. If you go to a report and decide to look at the two hour screen, rather than the four hour that you originally selected, there is no back button. You have to wait for it to time out (12 seconds in the regular menu and longer, maybe 20 seconds on the reports screens). This wastes time and seems like a silly amenity to leave off. You have to wonder who decides what options to include and which one's have to go, and why.

Traveling all day tomorrow, so may not have time to post, but I appreciate those of you sending comments.

For those of you that currently have a CGM, can you post a comment about whether you were able to get insurance to cover it and all the supplies? I am very curious about this and would appreciate your feedback.

106 and heading east-->

Day Seven: CGM Trial

I went to see my doctor today and got a new batch of supplies for the Navigator. I also learned briefly to use the software and I really like what I've seen.

My favorite part of the software is a Daily Combination page that shows blood sugars on a line graph and meals directly below the blood sugars, using circles that are relative in size depending on how many carbs are eaten. Below that is a bar graph showing insulin dosage. I am a very visual person, so I completely dig the small and large circles, right under the line graph. It is so easy to see where you need adjustments based on pre-meal, post-meal and all in relation to insulin dosages. When I get the software downloaded (after the holidays) I will post a screen shot of this page. With the software I went over my readings with my doctor and it was great. We were able to balance my basal vs. bolus ratio in a way that never would have been possible with 4-6 finger stick tests. He loved seeing the line graph floating in the low side of my goal range for hours and hours.

I inserted a new sensor in my left arm this time and it bled for a bit, but we dabbed at it with the corner of gauze until it stopped. Totally no big deal. The insertion was relatively easy. I twisted my straight arm and crossed it over my chest so I could reach the back ; where most folks tend to do injections. I was able to do it one handed, but I would need a mirror to check the insertion and check for blood which can impact the sensor negatively if there is too much. It was a little tough to get the transmitter snapped into the sensor today. Not sure if it was my arm postion or the unit.

I did not use Tegaderm as I need to remove the sensor Wednesday morning and I'd like to see how well the adhesive does this time. I have to wait 10 hours from insertion to get readings.

Basically, the 10 hour window is said to be there because when you poke a hole in your skin, there is trauma. The tissue needs time to heal before it can take readings of the interstitial fluid effectively. That could be two hours with some people and much longer with others, so ten hours should be safe for most everyone to get good readings. Once the ten hours are up I will calibrate the Navigator with a finger stick, using the Navigator receiver, which is also a stand alone meter. I will have to check again in two hours, so that will be late tonight.

Next post I'd like to start a dialog about cost and insurance. I am very concerned about the cost of CGMs and sensors, as well as the timeline when insurance campnaies will begin picking up some of the bill. This technology WILL save lives and WILL save $$$ in emergency room care, not to mention the opportunity to prevent or prolong the onset of serious complications.

I should note that my decision to start this blog was because I felt totally compelled to share this information with my family and anyone interested in the technology. It is not monitored by anyone with the study, in fact, they have no knowledge of this blog. The information I am communicating is based soley upon my personal experiences. I am not a doctor, just a woman living with diabetes and caring for a chld with type one diabetes. If you have any questions about whether a CGM is right for you, talk with your doctor.

Ahh! My navigator just beeped for my first calibration--150 and doing great. Let the readings begin!

Day Five & Six: CGM Trial

Well, Thursday and Friday my daughter was sick, fever and coughing mostly, and her blood sugars went through the roof. It always surprises me how fast ketones develop in children. She was diagnosed with a sinus infection. I don't have much problem with illness and ketones these days--don't know why, but I am thankful.

The CGM has been amazing. I have had so much fun watching the line graph hover between 85 and 100 for hours on end. I still have peaks and lows, but I need to get some basal and bolus adjustments made. The Tegaderm tape is awesome and the unit feels so much more secure against my body. I may put it on immediately with the next sensor.

Friday afternoon around 5:00 p.m. I started to feel really bad. I have had a cough for three weeks that the Dr. has insisted would go away on its own, but I developed a fever. My blood sugars only rose slightly, but it was SO nice to look at the receiver and KNOW where I stood. I rose into the low 200s, put a temporary basal of 130 percent and came down. Being sick is hard; being sick with diabetes is harder; being sick with diabetes AND having a child with diabetes (who is getting over being sick) is just mind numbing. I was totally exhausted yesterday and just did a lot of time in my hammock outside in the sunshine (gotta love Texas--40 degrees one day, 75 and balmy the next).

Yesterday, I got a warning that my sensor had to be removed as I had reached the 122 hour limit, so I removed them easily. You can't keep wearing the unit to stretch your dollar, it will not transmit readings past 122 hours. I was pleasantly surprised that the tiny hole in my skin was not
irritated, the area around it was fine, they only side effect was some residue from the adhesive on my skin.

To my disappointment, I was not provided with another sensor. Tomorrow I go back to be trained on the software and to get a 30 day supply of sensors, as well as insert the new one with their help. I am going to try the back of my arm this time. I am really curious how that will work. I didn't mind my tummy, but that is where I wear my infusion set is almost exclusively and that's a lot for a tummy to handle.

I can't tell you how much I miss this thing when I'm not wearing it. As far as comfort goes, I felt much better about wearing the transmitter after I put the Tegaderm on. The thing is kind big, relatively, so it just felt better with some adhesive support. However, it is much more comfortable that I imagined it would be when I first saw it. Maybe it will be different on my arm. I shot some photos of the sensor itself without the transmitter The sensor is a chip with a tiny tube and only goes 5mm under the skin. My infusion set is 9mm, so this is nothing.

I am already worrying about not having this at the end of the 90 day trial. I really want Minimed to make their transmitter smaller, so I can use it with my pump. The idea of those two devices working together is just awe inspiring, but comfort first and their current model is just too big.

Feeling much better today, but I miss the Navigator. After my temporary basal went off, I found myself at 325 mid-morning. I never would have gotten that high if I had the Navigator on. I will have to travel on Wednesday for business and you have to remove the device before plane trips. It is a one day trip, so I will just take it off Wednesday morning and put it back on when I get home that afternoon.

I'll post after my appointment tomorrow, which could run two hours (how much could there be to know?).

Day Four Continued

I averted a low today! I got a 30 minute warning of a low when I was 153 and on a walk. I got myself home and drank a juice at 105. My B.G. dropped to 88, but turned around before I got lower and I stayed around 112 until dinner.

Nice! Check out the Line Graph over two hours.

I was dropping at about 5:00 p.m. and it turned just after 5:30 p.m.

I am pretty impressed. I always thought about this thing in terms of warnings for lows, not about the opportunity to avoid them. I also thought about it in big wide statements to gain better control, but the idea that this could help prevent an emergency is amazing to me. I have read about the technology for awhile, but to experience it is something else.

Today I barely looked at the thing (compared to my obsessiveness for the past few days), but the alert was very helpful!

Regarding adhesive, it is stuck on good, but the edges are flapping in the breeze. I like the idea of Mastisol, so I may pick that up if allowed through the study.

Got another Projected Low Alarm at 11:30 p.m. and avoided getting low. I was 115, but I drank some juice and I am 95 and holding steady 20 minutes later. Can't wait to see my Dr. on Monday and get some numbers straightened out based upon this tighter control. Also, anxious to know what my A1c was to start this project.

Day Four: CGM Trial

My daughter is watching all this carefully. I am extra sensitive to the serious pain in the neck of blood sugar checks for her as I wear the Navigator CGM. She said she was super hungry this morning and I pulled out the B.G. kit to check her, worried about a morning low. She was 160, actually just hungry, but the fear of my daughter going low in the night is always with me.

I always check her before I go to bed, usually between 11:00 p.m and 1:00 a.m. as this helps me fall asleep.

I titled this blog Diabetes Self-Care: Balance for Families Living with Type One because I have been working for the past year to create better balance in my life as a mother/wife and woman. I left a high profile position in the music industry to work for myself and to develop a deeper relationship with my family and myself.

My daughter was going to be starting Kindergarten when I left that job and the idea of managing her diabetes while traveling monthly and working 60 plus hours was daunting. The process of educating school staff on how to care for her was not easy, but I did it without fear, as I was literally three minutes away if an emergency arose working from home.

Today she is in first grade and she handles the role diabetes plays in her life well. She still asks me when a cure will come, but we stay positive and I try to teach her as much as I can about taking care of herself. She has competently taken her blood sugar almost from the beginning and her math skills are super sharp due to all the carb counting. She reads food labels with ease and she administers her own insulin via the pump with supervision.

One thing I want to instill in her is that knowledge is power. Fear of this disease gets us nowhere. The more we know, the easier it is to handle, which is evident by the information I am receiving through this study. I see mothers of children with diabetes as freaked out as my mother was when I was diagnosed and there is great reason to be concerned, but from the time I was 15 I understood that this is something I have to contend with and I can choose how to manage it; from fear or from faith and hope. My years of living with diabetes have made me a stronger mother and advocate for my child.

Day Three: CGM Trial

Day three was a little rough. I woke up having been in the low 200s all night, got more stable throughout the day and then changed my infusion set around 6:00 p.m.

I experienced the same lows beginning at 8:00 p.m. I did the night before and the warning system seems to be off in terms of time. Who can predict the exact rate a blood sugar will drop; the Navigator does provide a warning and I have it set to give me 30 minute notice, but I drop really quickly and the High sensitivity setting really only gives me about 10-15 minutes.

I got another warning around 9:00 p.m. that I was going to be low and my blood sugar was 105. I immediately drank some milk and it dropped to the 60's before it began to climb.

I am making an adjustment on my pump today to reduce my meal bolus for dinner time and we'll see what happens. My night was interesting as I hit about 180 at 2:00 a.m. and dropped very slowly all night to 64 at 7:00 a.m. Interestingly, the Projected Low Alarm does not sound if the blood sugar falls very slowly and the arrow is ->. It only sounds if it sees a noticeable downward drop, so I was awakened this morning with a 64, but at least it woke me up. It is thrilling to think I would get an alarm while I sleep if things get dangerous.

Had significant problems with the adhesive on day three. The tape is slowly lifting all around the transmitter site, so I put some IV 3000 adhesive film over the whole site. Within an hour it was itching, so I peeled it off to find a red rash around the edge of the adhesive and the glue stuck tot he transmitter and is now sticking to my clothes.

I have different adhesives to try to keep this thing on, but am apprehensive about trying another one. I have used IV 3000 before with no reaction, but I guess if I want to keep the thing on, I'll have to give another one a try.

© 2007 Photo by Wendy L. Morgan

Day Two: CGM Trial Continued

Wow! This thing works and I have had very tight control all day until this afternoon. I got a warning around 6:00 p.m. that I would drop from my current reading of 90 to 65 in 20 minutes. Boy, did I drop.

I was getting kids home from Girl Scouts when at 6:15 I hit 65 and fell steadily from there. I felt fine, no symptoms really, but by he time I reached our local taco joint, I was 58, before then could bring me a drink I was nearing lower 50s, before I could digest the drink, I was in the 40s. It took 15 minutes before my arrow began to show a climb. I was still under 65 when I finished dinner.

When I hit 85 after dinner I administered insulin for my food, only to get an alert at 8:00 pm warning that I would drop from 80 to 65 in 20 minutes. I immediately got some juice, but dropped to 65 within five minutes. I am at 53 now and the arrow is pointing South East, which is up from a dead south direction.

My average since 10:00 p.m. last night has been 137 with 68 percent of my readings within target range, 23 percent above (70-160 is target for me) and 9 percent below. Not bad considering my highest sugar has been 211.

It takes me a lot longer to climb from a low than I thought. I really thought I was up after ten minutes or so, even though I know all the books say fifteen.

My daughter was fascinated, but a little freaked out watching me drop at dinner. She knows what those numbers mean, but I assured her the body takes time to rebound once you drink some juice, and that I would be fine, but watching me hover so low for about 10 minutes was slightly startling.

I am 58, but the arrow is now due east, which means I should be climbing soon. I am changing my warning to a 30 minute advance and see if I can't stop these lows.