Minimed Revel: Jury still out, but underwhelmed

I hate to judge something without ample time to use it, but I am pretty underwhelmed with the Medtronic Minimed Revel and CGM package. I have been using the Medtronic Minilink CGM since it came out, ordering a new one after my other konked out after 18 months.

I had the 722 Minimed Paradigm pump and it has worked really well for me. But, back when I started this blog, I was testing the Freestyle Navigator. I loved it; for the most part.


I LOVED the predicative alarms. I actually stopped lows before I had them. What could be better. So when the Revel promised predictive alarms, I thought, "Hell ya!"


I have received predictive alarms, but many came when I was already low or moments from the threshold. I'm not 100 percent sure exactly what was happening with many of these, because I don't tend to take my BS when I wear the CGM (slap my wrist). It has been really accurate for me the majority of the time. Not perfect, but really good. So several alarms I got were maybe five minutes before the actual low alarm, but I don't know what my actual BS was.


So, I decided to check sugars when I got the alarm and the first time I did this I got the Predicted Low alarm and I was 55 mg/dl. This thing is supposed to warn me 30 minutes before a low and I was already 55. This happened several times with similar results.

Benefit of the doubt wants me to say, "I need to get used to it," "its a new machine, give it a break," but a big part of me is saying send it back.


It isn't any more helpful that the 722 at this point, it just has more alarms.

OH! Big issue, I can't hear the freakin' alarms at night.

I went for two hours with No Delivery and I didn't hear or feel a thing. The alarms were not great to begin with on the 722, but they were WAY too soft on the Revel. They have different low and high chimes, but they are not better and sound softer to me because they are so high pitched.

So, I haven't put a sensor on for two days because it makes me tired thinking about verifying the readings. Easier not to know, but I better figure this out soon, I'm running out of decision time.

Anyone using the Revel have some thoughts to share? I'd love input.

Minimed Quickset Problem, Not Lot 8

I have had four "No Delivery" alarms out of one box of the new infusion sets Minimed has sent me. I reported it on the third time and just reported another.

It is with a box of 9mm, 23in. Quick-Set Paradigm with Lot Number: 9200558

It happens when I am bolusing only and within the three day window of normal infusion set function.

The Lot 8 issue was a fiasco and I wonder how long it took folks reporting their problems to get a adequate response. I bet if the problem had only been "No Delivery" vs. Spontaneous over delivery if it would have taken a lot longer for a recall? Any lack of delivery can be blamed on my scar tissue or improper insertion.

My experience has been that a No Delivery alarm is notice of a serious problem. I only twice or three times have gotten No Delivery alarms with an occlusion. I can be high for hours and never get an alarm, so when these alarms happen, I stop and pay attention.

Just curious if anyone else has had any problems.

Symlin and CGM: Digging it

So, I finally (finally) started trying out Symlin again. I really like it. I decided not to follow the instructions to bump up the dosage of Symlin (15mg, to 30mg to 60mg). I instead bumped up the dosage only if my blood sugars began climbing after meals.

I bumped up to 30mg about a week ago and haven't gone higher yet and I've been on it for three weeks so far. 30 mg makes me a tiny bit nauseous, but not like 60mg. 15 mg didn't make me feel sick at all. My blood sugars are SO stable. I have found when I eat a snack and don't take the Symlin, I bounce above 200 almost every time. With the Symlin I ride with barely a bump in the road.

One of the reasons I was so hesitant to try Symlin again is because of the drastic lows I had. They were scary. Scary enough for me to quit taking it.

My goals are to take less insulin, stabilize my BS and if I lost weight, I would be really grateful. Really.

I would not, under any circumstances, use Symlin without a CGM. It completely freaks me out to think of someone dosing 60 mg after a week or two on Symlin and not knowing their blood sugar afterward. Scary stuff if not monitored.

To conclude, if your doctor recommends it, take a look, but pay attention to your body AND your CGM.

CDC Webcast: H1N1 and People with Diabetes

Late notice, but today, November 18, 2009 at 1:00 pm eastern the CDC will offer a webcast for people with diabetes about H1N1 Flu and the issues faced by folks with diabetes.

In a nut shell, if you have diabetes, it is recommended you get an H1N1 vaccine. See the CDC-Diabetes site for details or the link to the Webcast.

Another diagnosis

On Facebook tonight I learned that a colleague's son was diagnosed with diabetes at two years old. He asked for warm wishes and helpful" We'll get through this" advice. He had 23 comments at last check.

I sent him a message and said I am happy to help them anyway I can. My experience with diabetes for the past 26 years and three days (Oct.13, 1983) will be helpful. My experience with a daughter with T1 for five years and two months will be welcome, I'm sure.

However, my long message offered very little advice; that two of the three available doctors are best, and that it really will be ok.

What more can you say on the eve of diagnosis?

Diabetes Envy? Kids are weird.

My daughter has a friend who is rather enthralled with her diabetes. Her mother told me that she created a blood sugar kit with an old bag, made a fake meter and also put a calculator or something in her pants to look like a pump.

When she came to our house one time, she tripped and cut her leg. Instead of crying and screaming, she immediately jumped up and asked if she could take her blood sugar with the blood.

Today is her Birthday--Party!

Today is my daughter's 9th birthday party. I have the biggest cake on order you can buy and 40 plus people and kids coming to celebrate.

We also just recognized the 5th anniversary of her diagnosis. I remember her 4th birthday party, which was 20 days after her trip to the hospital. We served cupcakes, because I could figure out the carbs easier.

Looking forward to celebrating with friends and family today. It's been a tense and stressful start of school. Diabetes, teachers, nurses, 504 adjustments, big highs, and big lows and no pattern for making adjustments. Looking forward to week two when adrenaline isn't such a factor in BG levels.

Looking for cooler weather too, but I need to give it another three months in Austin. 66 days at over 100 and I think today will put us to 67!

Nervous

I can't help myself. My daughter is spending the night at friends tonight, I got her last blood sugar reading at 9:15 pm and it was 137, but I can't help but be nervous when she isn't with me.

Ugg. She is becoming so independent (4th grade this fall) and she is so capable of taking care of herself, but I am still nervous. I guess that comes with being a mom. To add diabetes to the layer of complexity between a mother and a daughter is a lot to ask of any human being.

"Control" The Dreaded, Overarching Theme with Diabetes

Wow! Control is such a loaded word in diabetes care.

¹con·trol

Pronunciation:

\kən-ˈtrōl\

Function:

verb

Inflected Form(s):

con·trolled; con·trol·ling

15th century

transitive verb1 a: archaic : to check, test, or verify by evidence or experiments b: to incorporate suitable controls in controlled experiment>2 a: to exercise restraining or directing influence over : regulate b: to have power over : rule C: to reduce the incidence or severity of especially to innocuous levels <control an insect population><control a disease>
In diabetes care, it isn't that simple. My daughter (8, almost 9) feels very in control of her situation. I am very proud of her, but my husband and I have very consciously worked to empower her and have made LIFE first, diabetes second.
I would LOVE to hear from parents who have figured out the "control" balance; parents who give their kids space to be, take care of themselves and found a way to "let go," so they can fly.
Please share your stories, I have readers who desperately need to hear from you. How did you move away from diabetes running your lives and go back to living?

First independent shot

My daughter's blood sugar was high adn she needed a new infusion set tonight. She ate a snack and declared that she was going to give herself a shot. She dialed up the Novopen and injected herself in the arm.

I'm so proud of her taking control and doing it herself without my prompting. I have oodles of pride in her this week about so many things. I pinch myself, completely amazed at how in love and fortunate I am to have such an amazing kid.

Pinch!

Self-Care Gift for Moms

This post is especially for moms living with Type One Diabetes. Whether you have diabetes yourself or you care for a child with diabetes, self-care is vital to our survival. It is something that took me a long time to learn and I still have to remind myself that if Mama ain't happy, ain't nobody happy!

With that, and the approaching Mother's Day holiday, I wanted to post a very special offer for Moms (or Dads that have the sense to take this offer and give it to their lovely wives).

FREE MOTHER’S DAY BOOK OFFER
Download a free copy of life balance expert Renee Trudeau’s award winning The Mother’s Guide to Self-Renewal: How to Reclaim, Rejuvenate and Re-Balance Your Life for 48 hours: May 8th-May 10th at http://www.mothersguidetoselfrenewal.com/ Sign up today!

I learned most of what I know about self-care from Renee Trudeau, a career and life balance coach in Austin, Texas. She introduced the concept of filling my cup first (yes even before my T1 child's) and also how to say "NO." She put all she knows into the very loving month-by-month Mother's Guide to Self Renewal.

Happy Mother's Day! Oh! My girl and I are featured in Month Four of the book.

Time goes by...

It is amazing to me how fast things move. A week just shot by in a fraction of a second and it scares me when I hear things just get faster with age.

I'm a less than a month away from turning 40 and have 25 years with diabetes under my belt. I just went to the eye doctor and my eyes are perfect, except for my need for progressive lenses (I'm getting old, duh). Went to my Endo and spent 20 minutes talking with him about a lot of things. Wasn't a ton to talk about with my diabetes. We made some adjustments because I am running high after I eat a bedtime snack. I need to make more adjustments still.

I don't wear my CGM as much these days, but when I do, I seem to run in really good control most of the day and night, except after bedtime snack.

My daughter on the other hand, has been swinging like a monkey in the trees lately. I made some changes to bolus and basal, but I haven't seen things even out. I am watching the trends and then, *snap* a week has gone by and I haven't figured her out. My only thought is hormones must be raging as she tops 4'6" and 87 lbs at 8 years old.

We suffered a serious loss in the past 6 months. My daughter's diabetes educator left the practice we go to. Anyone with diabetes knows that our doctors don't know diddly compared to the Diabetes Educators. She was really our life line. I would call her day or night and she always had an answer. Perhaps it was many years taking care of diabetes peds patients, many years with diabetes herself or all the training she got taking care of her son with diabetes. She is AWESOME and I can't call her anymore. :(

And since she left, I don't feel connected to that office anymore. I like the doctor fine, she is brilliant and loves my girl, but I feel like I lost my "go to." As time slips by and I watch her blood sugars bounce, I start to feel lost and have no desire to call the office for help. THEY don't know my kid like SHE did. Kinda angry about it still, but again, time moves so fast for me now that I can understand how a grudge could linger for half a year or more.

My months may be gliding by, but that has also served me well. Nights and days of worry over fever and flu, days of lows that just never seem to come up. Super-rubber-ball 400s, then 30s in a three to four hour period; they all smooth out over time. I have found, that if I can stop and hit the pause button, breathe, and look at what is going on , do what I have learned to the best of my ability, that things always seem to work out fine. It isn't the individual blood sugar readings that matter so much, it is what is happening over time.

My last A1C was 7.2 and I was thrilled. I know, we are supposed to shoot for 6.0 to 7.0, but 7.2 made me jump for joy. Remember, I ran high for many, many nights at bedtime, but the rest of my 24 hours in a day I did very well.

Can I make improvements? Always! But my averages are good, I have no complications, I am enjoying my life, I am able to care for my girl AND I can stop and hit the pause button occasionally and appreciate all I have learned. I can live with this without being afraid; I am not afraid.

Diabetes Management is FUN; I sweat playing Wii Fit!

Ok, I have to admit, I wanted the Wii Fit as much as my daughter did for Christmas. She almost has me beat doing the hula hoops, but I gotta tell you the yoga and strength training are F.U.N.

I like that the "trainer" can tell you if you are shaky (not from low blood sugar, but I'd pay extra for that) or imbalanced. The balance board tracks your progress in the form of BMI, weight and balance or posture. It really is a marvel.

I did seven yoga poses and six or seven strength training exercises and then did the turbo hula hoops and got a high score. I was actually sweating a little. Amazing.

NOW, imagine if there was a Wii Fit Diabetes Management Edition. You heard it here first! An edition that let's you put in not only fitness goals, but HbA1C goals, average blood sugar goals and meal planning options. Oh! My God that would be so cool.

What if, it was internet based and bluetooth enabled so you can download your pump/meter and give access to your doctor. Ok, fantasy over, but if Nintendo is listening, get busy! There are 23.6 million people with diabetes in the US alone and more than 230 million in the WORLD!

Woke up thinking about diabetes complications at 3 a.m.

This morning I had a first; worry about the future impact of complications on my body. Perhaps it is the pending New Year and the resolutions that always hover. Perhaps it was my husband, who said that he is sick of sitting in front of the computer and wants to get moving. Perhaps it is the Wii Fit and the fun games that are making me think a lot more about my diabetes and my overall health.

I have three months left of my 39th year. I was in the bathroom this morning and wondered if I need a mammogram now. Making my poached egg, I scrapped off half the butter I was about to use.

I put my CGM on four days ago for the first time in months. I thought the transmitter was about to konk out on me when I had a couple iffy sensors and bad readings, so I tucked it away and feigned self-control by "knowing my body." I have to say though, my blood sugars are darned normal most the time and the CGM confirms this for me nicely.

So, in bed this morning around 3:00 a.m., I started thinking about how my body was aching; really in need of a massage (which I got for Christmas). My ankle was stiff and the more I twisted it and stretched it to try to loosen up, the more I realized I don't like to be in pain, or really even discomfort, AND I don't like taking pills to make me feel better. This led to thoughts about how I'm going to feel if I am in pain all the time because of complications. I actually thought. "I'm not sure if I could live with that." I thought, I hope I get killed by a bus or freak train collision rather than suffer as I get older.
Don't worry, I'm not imbalanced or depressed, but it made me think about how much control I take over my health and life. Where does diabetes care fit into my priorities. To be honest, not very high on the list. My health fits in right about where most people fit it in, between kids activities, work, doing dishes and beating myself up over the things I *should* be doing.

I don't spend an inordinate amount of time beating myself up; gave that up years ago, but I have slipped to the other side to virtual complacence. Don't think that is the best place to be either.

My daughter takes most of my energy, time and stamina. Her diabetes takes the rest. How do I teach a kid to make the right choices, when they aren't a priority for me?

So, the Wii Fit really kicks some butt. I ought do be doing yoga now, but I just wanted to start a dialog about reality, not fear. A little voice in me is saying that I should be more mindful, thoughtful about my choices. That self-care is a high priority, no matter my other obligations. I think the example of the oxygen mask on the airplane is perfect here. If I don't get air first, how can I help my child?

Agave Syrup and Homemade Microwave Popcorn

So I am am curious how many of you have tried Agave Syrup as a replacement for sugar or honey, cause I am a sucker for honey on biscuits and have been very interested in this product. There is an article on Diabetes Health, but it doesn't really list the carbs vs. honey or sugar, just exchanges, which I thought was very out of fashion (using exchanges vs. straight carbs).

Any thoughts on agave syrup are appreciated. I do have one recipe to share that blew my mind. Who knew that microwave popcorn could be made without all the crap packed into the pre-packaged bags? Martha Stewart apparently. A friend with celiac hipped me to this homemade version of microwave popcorn with agave syrup and butter for a kettle corn yummyliciousness (we tried it with Splenda and butter, but would love to try agave).

Homemade Microwave Popcorn

Place 1/4 cup of popcorn in a paper lunch sack with a bit of salt. Fold over top of bag and lay on its side in microwave.

Microwave for about 1 to 1 1/2 minutes, but listen for slow popping or it will burn quick.

Plop a dollop of butter in a dish ( Or smart balance butter that I love) and nuke for a few seconds to melt.

Add some agave syrup and pour over your fresh popcorn and toss (more salt is nice).

Yum! Homemade microwave kettle corn.

Think it buying the prepackaged kind is easier? Fine, but look at the ingredients list and just try to scrape off the stuff inside the bag after popping. Hard to believe we ate this stuff thinking it was a good snack. Also, cost per bag is SO cheap. Frugal and healthy snack!

Happy popping!

Camp Sweeney, Here we come

My girl and I are headed out today for a family weekend at Camp Sweeney for kids with T1 diabetes. The weather is supposed to be spectacular, but I think it is still a bit early to swim in the lake.

Last year my girl (then 6) went to Sweeney for a week-long camp and she spent a lot of time crying. She is very attached to me at bedtime and had a very hard time with home sickness, so this year we decided to do the weekend camp together. Little does she know, this weekend is prep for the three week camp next summer. Her daddy and I need a break!

She'll be 8, turning 9 at the end of summer then, and I figure she'll be over us (Ha!). So hubby and I are planning a trip (in our heads) to the Mexican Riviera, even if it is just for four nights or so. We haven't spent "quality" time alone since she was born. Actually, our last vacation alone was during the Millennium New Year where we went to San Francisco. I was pregnant and didn't know it until I got home from the airport at nearly midnight and peed on a pregnancy test.

My man is starting a new position with UPS as a driver, so he can't travel with us this weekend. He has been clerking there for 2 1/2 years, which allowed me the flexibility to start my own business, as UPS provides full benefits to the WHOLE family not no cost (besides his sweat & blood); he just had to work minimum of 25 hours per week. He has worked nights for as long as he's been there and operated another business from home during the day.

So, this weekend is a test run, prep for future spousal vacation. We'll have two weeks vacation next summer to use and I hope my girl is ready for three weeks of fun at camp.

FreeStyle Navigator FINALLY Approved

Well, the time has finally come! The Abbott Diabetes Care FreeStyle Navigator Continuous Glucose Monitoring System is finally approved by the FDA and available!

I started this blog when I was admitted to a three month study of the Navigator and I wrote extensively about my experiences over the trail. It begins with my first day and continues through some trials and tribulations over the following three months.

I included lots of pictures of the unit, of the insertion process and it seems that it is virtually the same unit I used in trail, but they updated a few irritating things, like there was no way to escape out of the reports window without waiting for it to time out.

During the trail my blood sugars were more manageable, but it was only in my final week of the trial that I truly realized how profoundly this technology could improve my control. My doctor could see things that would never be seen with 8 tests per day. I had a drop in my A1C of 10 percent during the trail and that prompted me to buy the Minimed CGM when it came out with the Minilink.

I think there are comparable in technology, BUT the Navigator would give me alarms 30 minutes before I was low and that saved me more than once. Also, you have readings every minute, which can be very helpful as you are dropping.

The insertion of the sensor is MUCH better with the Navigator and you don't see this HUGE needle plunging into your belly like you do with the Minimed.

The Co-pilot software was awesome; way better than the Minimed version. I loved the visuals along with the numbers.

I could not find the pricing information on the web, so I called the hot line and held for 5 minutes. They took my personal information first, then told me the pricing would be as follows:

The receiver and transmitter kit, which also includes one box of Freestyle strips, batteries and lancets will range in price from $960 -$1040. The Sensor kit includes six sensors for approximately $360-390. That is $60 a piece folks. Not sure how much I appreciate that without insurance coverage.

If anything, I think this will give Minimed and Dexcom a run for their money, which I hope in turn, brings about sexier and more sophisticated devices from which to choose. I like my Minimed because it is contained all in one unit, but if I were to buy today, I would absolutely consider the Navigator.

My Seven Year-old Holds onto her Routines--TIGHT!

I have had diabetes for 24 years and I go through periods of great diabetes focus. Then, I get tired and just can't over think it anymore. My blog hiatus since December is evidence of where I am.

My daughter's care has been challenging. Her A1C is up and our vigilance has slipped because this disease is frankly really inconvenient. Let me say, we still test 10 times per day, but I have been more likely to forget to tell her the carbs for her snack she grabs in the middle of tree climbing. Thirty minutes later I have the flash, "DAMN, I forgot to tell her the carbs!"

She rarely goes too high, nor does she go too low, but she doesn't sit at 100 all the time either. You know the infusion sets are becoming a problem in terms of viability. They aren't lasting as long and I suspect this is due to scar tissue build up. I just gave advice to a dad looking at pumps for his eight year-old and said to be sure to promote site rotation right away; this has eluded us entirely. My girl likes it on her rear and that is IT. Just the thought of doing it on her tummy or thigh sends her into a panic.

I have really noticed how routine and the specificity of that routine is extremely important to her. Getting her to try anything new is just exhausting. We went to the video store on a rainy Saturday and I thought she would really dig seeing the Muppet Show; I remember how darned funny it was when I was a kid. Hys-ter-i-cal! She groused all the way home from the store and FINALLY, half way into the third episode with Gilda Radner, she began laughing. Now she is hooked, but it took two and a half episodes and that is a long time in kid time.

So, imagine me trying to get her to try an new type of infusion set or a new site. It is just too exhausting, so for now Good is Good Enough.

Photo from: http://en.wikipedia.org/wiki/The_Muppet_Show

Can I offer you a glass of water?

Stress manifests in the most unusual ways, but for me, I tend to ignore the simplest things, like drinking water. I work and work, organize and strategize, so that my life is manageable and my family's life runs like a well oiled machine. But, at the end of the day, I am exhausted, achy, weary and just overwhelmed.

This morning I woke up with a headache. Not a little headache, but a killer, mind numbing one that had me analyzing what the hell was going on. I quickly realized that I was simply not drinking enough water.

I was clued into the importance of this at a Fit, Family Club night at my daughter's school last night when the session leader was talking about how we often hunger from thirst. That we might be eating more, because in fact we are really thirsty. She recommended that we drink a glass of water before we start a meal; that one action may curb our tendency to consume more food than we really need.

So, I got a bottle of water this morning and drank that before my coffee. I then got a huge glass and sipped on it for almost an hour. I also drank two cups of my favorite tea, Buddha's Bliss from Texas Medicinals. Within an hour, my back and neck stopped hurting, my headache cleared, my energy was back to buoyant and I just felt darned good.

It can be hard to remember that self-care begins with the smallest things, but it is an accumulation of those efforts that end up making us happier and healthier.

Happy Hollandaise

Everyone feeling the crunch yet? The gift giving is off the hook this year. I can't control myself with the eating, shopping, and overall need to consume.

My girl and I made sugar cube houses; a diabetic nightmare if I ever saw one, but they are beautiful. I caught myself eating one of the candy rocks off her stone pathway to the front door and had to slap my own hand away.

They were much prettier before the kitty decided to play with them.

Just got the tree up with family this evening; weeks later than we have ever done it before, but I think I have some holiday blues, which leads to more consumption.

I haven't been wearing my CGM for about a week now. Just tired of everything and I am shocked at my capacity for malaise, even with all the twinkling lights, cookies and yumminess. My blood sugars are great, even without the CGM, so I will settle into the flow and try to enjoy the rest of the holidays.

Serious Symlin Scare--It all worked out, but carry Glucose Tablets!

Oh! My! Last night I was rushing around to get dinner on the table, getting my daughter ready for a sleep over, sending my hubby off to work. I made a HUGE regular pasta (vs. Dreamfields) dinner and took my Symlin, but FORGOT to take half my insulin; I took the whole dosage with a 60g carb bolus.

About 20 minutes after I ate I realized what I did, so I grabbed a 30g carb instant breakfast and got my daughter out the door for her sleep over. As soon as I made it to my friends door I felt myself slipping.

We were touring around her new home, admiring this and that when we made it to her bedroom and I plopped down on the bed. I felt awash in fuzz. I pulled out my pump/CGM and I was 70 with a down arrow 30 minutes after eating. I KNEW I was in trouble, so I immediate drank 30g carb of OJ. I slipped to 60 in five minutes.

My friends were talking about shopping for houses and I just blurted out that I couldn't listen to anything anyone had to say and promptly planted my butt on the sofa. My friends looked at me and I was not all there. I was glassy eyed and pale. I looked at the CGM again, 52! Yikes! I drank almost another full 8 oz of OJ when I realized my Symlin was preventing me from absorbing the OJ properly. It wasn't working!

I remembered (some how in my twirly/speedy low mind) a discussion of serious lows with Symlin from a Diabetes CGMS group, or perhaps from TuDiabetes.com, but someone mentioned that Glucose tablets were about the only thing that worked with these severe lows because they could be absorbed into the blood stream even as you chewed and as they made their way to your stomach.

I ACTUALLY had a Ziploc baggies filled with about 15 glucose tablets and I started eating. Did I mention my CGM was showing a drop so fast it couldn't even alarm. I was 40 with a down arrow and and I know I was MUCH lower. I sat on the sofa and my friends are like, "Hey, whats the worst case scenario here?"

I realized that this situation COULD get bad; this kind of thing hasn't happened to me in seven years, so I asked my friend to go to my house and get my Glucagon kit. She was gone 15 minutes and just as she walked in the door, my blood sugar went to 42. YEA! This is after the whole bag of glucose tablets--maybe 15 or so.

It took me almost 30 minutes to climb over 100. I hit 198 as a high afterward, which was AMAZING as I probably consumed 300g carb. Ok, I exaggerate, but who really knows.

Scary! Mom's, don't let your guard down when you are struggling to get everyone else's life inorder. A valuable lesson for me to slow down and be more caring of my own diabetes needs.

MY CGM saved my life. I would have totally flipped out without SEEing what was happening as it happened. I didn't have my BG kit, so I am unsure of accuracy, but I AM certain that it was incredibly helpful. I was able to keep my cool KNOWING what was going on.

Another thing--I will always have glucose tablets in my purse!

Minimed Sensor Backorder --four business days. Thoughts on CGM and my kid.

I ordered my Sensors for my Minimed Real-time CGM on Halloween, Wednesday,October 31 and got notification today that they were being overnighted. That was less than one week and I ordered a box of ten.

I'm pretty happy about this. Life without readings is basically life, but with no idea what your blood sugar is. Yes, I am supposed to be taking it, but I have gotten so comfortable wearing the sensor all the time, I just can't get back to my meter.

I had a sensor that was really rough on me as my last sensor. I bled like HELL and hurt when I put it in. I read on a forum that the ones that tend to bleed have had longer life, so I crossed my fingers and hoped, but it failed after four days and I wasn't going to mess with it. I just wanted it OUT!

I am still bruised and I took it out almost two weeks ago.

Not sure why this happened, but thankfully is was the first in 30 sensors to do this kind of damage.

I've decided to wait on the CGM for my seven year-old girl. I have come to find out that it isn't the insertion that worries her most (although it absolutely does), but it is the alarms going off all the time. You know what? That happens frequently. It will really extend the amount of time she is thinking or being reminded about diabetes, which is a lot and for right now, in this first generation of devices, I am willing to let her have some space with it.

Also, when the CGM is made so that I get the alarms on my mobile device, that will be a whole other story. It is a lot of responsibility for a seven year old to deal with the various alarms. Trust me I TOTALLY understand the benefits for her and me, but for now...we are going to wait.

Tape is Necessary on CGM Transmitter--I just flushed $35 down the toilet

So, I put in a new Minimed Sensor two nights ago. I put it on my rear, so I had to get my hubby to help me because I don't like it too high on my hip.

I forgot to put on my overbandage (Tegaderm) and I thought about it several times, but I needed hubby to do this too, and he was never around when I thought about it.

I was very careful getting dressed and going to the restroom, but this morning I was bending over to pick up the recycling and a seam in my jeans caught just under the edge of the sensor and pull it right off my fanny.

Oh well!

Symlin and CGM--Wow! This is SO much easier

You know I tried to use Symlin a couple years ago, before the Continuous Glucose Monitor, and it was HARD. I got low...really low and the lows are tough to treat, but I recently decided to give it a try again now that I have the Minimed Realtime Continuous Glucose Monitor.

I am 38 and my insulin requirements have increased significantly in the past year and I am also gaining weight as a result. This does not make me happy, so I'm trying Symlin (which I hear is now FDA approved in a pen).

I have been on Symlin for about a month, using it once or so a day. It is NOT convenient to carry it around with you when you have been reliant on the CGM and your pump, so I usually get Symlin when I am at home eating.

I have to say, it is miraculous to see how it impacts my blood sugars post meal. It works well, but the best is that I can catch lows early and see exactly how it impacts my readings for hours after.

It has been a long while since I posted regularly, but in case you weren't sure, I LOVE having a CGM and I can't imagine life without it. I will live longer and I will see my child grow because I know answer to the only question that really matters with diabetes-- "What's your blood sugar?"

I'm Mad!! Minimed Carelink Software has a Gaping Hole

Just to put this up front--I'm MAD!

Minimed offers Carelink Personal Therapy Management Software, a Web-based system designed to help you take information from all of your diabetes management tools – your insulin pump, continuous glucose monitor, blood glucose meter(s), and logbook – and organize it into easy-to-read charts, graphs and tables. It offers a logbook as well, which is "intended to assist you in analyzing impacts to your glucose control based on delivered Bolus insulin and external events documented in the Logbook."

PROBLEM--The Logbook only offers five "external event" options for documenting what is happening with your diabetes care:

Carbs
Exercise
HbA1C
Infusion Set Change
Urine Ketones

There is no place in this "therapy management software" to make general comments about your health or wellness, like when I have the stomach flu, a major deadline at work and I am stressed to the point of exploding or a sinus infection. My menstrual cycles causes HAVOC on my blood sugars from the day I ovulate through PMS and to the end of my period.

These are not random notes; frivolous nuggets of information. This information is about MY LIFE and every move I make impacts my diabetes control. My doctor, when he reads the files I saved from Carelink, has to know the facts when making recommendations about bolus/basal changes. If he doesn't see what is going on, it looks like I am just randomly out of control.

The very thing that makes the CGM so miraculous is that we get hard numbers 24/7. Numbers are virtually meaningless if you don't know what is happening to my body causing the blood sugar changes.

My doctor will get two weeks worth of reading through the Carelink and the first five days are relatively stable; it shows some lows, but there are notes related to exercise, so that makes sense. There was one super high with a note about an infusion set change, so that makes sense.

Then, day six shows blood sugars hovering between 150 to 200. No notes (after all this isn't related to the five logbook entries provided). Two days later they are high--over 200 all the time. A temp basal is employed, but again no notes.

I'm 250 at bed time on Day 12 and then Day 13 shows a huge drop in sugars; now below 70 all morning and not much higher after lunch. Day 14 is stable again--80-140 most the day.

What is a doctor supposed to do with this if he doesn't know I'm sick or have my period or had a bad batch of insulin or had a tough work week. There is no treatment recommendation that would make sense.

So, my point--I'm mad that the medical companies spend so much energy developing technology that can serve us SO well, but they forget about who is using it or what we have to do to manage the disease they are helping us treat. Who would release software that doesn't allow a user to make general notes. It is absoutely ridiculous!

October 3, 2007 Update

I e-mailed Minimed the night I wrote this post and I have not received a follow up beyond the message that my comments were being forwarded to the Marketing Dept. I sent them another message this morning requesting a response.

T1 Kids--How do you handle diabetes care at school?

Today is day two of second grade for my sweet girl. Day one was awesome. Her teacher was prepared, the Teacher's Assistant who cares for her was on hand and ready. Her blood sugars were 92 for morning snack, 112 for lunch and 85 for afternoon snack. Hooray!

Then today, well actually last night, she was 92 at 11:00 p.m. My husband checked her at 2:00 a.m and she was 174. He didn't know she was 92 earlier, so he only did a partial correction. This morning she was 275. Hmmm. I pause, but figure since she didn't get the full correction last night, things might be OK, after all it is only day two of her infusion set. I correct and we head to school.

Morning snack 230, obviously not great, but lower than before. Lunch, 212, OK, lower and its a post morning snack number, but still not great. Afternoon snack, 427. So up to the school my hubby goes to give her a shot (we live a half block from school). She'll be home in 45 minutes, so we decided to wait on changing the infusion set.

Then I went to pick my girl up after school and her teacher was a basket case. She was SOOOO worried that she screwed up. She said, "I should have seen it coming."

I let her know in no uncertain terms that she cannot claim responsibility for my daughter's blood sugar numbers. It is her job to teach her, get to know her and keep and eye out for the symptoms we discussed for almost an hour and a half. I said that if she is worried at all, to ask my girl to take her blood sugar and to call me if there are issues. Her diabetes management is OUR responsibility and we will do our best to care for her with the information we are given each day.

Now, I should say that my daughter has been under the supervision of one Teacher's Assistant since she started Kinder at the school. It took some months of cajoling the administration, but everyone finally agreed that having one person watch over her care (we have no full-time nurse) was better than her, at five years-old, trying to figure out which of the five people at the school was supposed to help her three times per day.

This angel of a TA named Molly is loving and tender and watchful over my girl. She also cares for several children with Autism and Down Syndrome, but every single day at 9:00 a.m., 11:30 a.m. and 2:00 p.m. she is in the room watching blood sugars be taken, writing down the numbers, helping count and add total carbs, monitoring the pump entries and trouble shooting with me on the phone if there are issues or she just thinks my girl just looks a little off today.

Molly knows my child and loves her dearly and this system has worked great for us. I hate the idea of a teacher being responsible for teaching, managing nearly 20 kids and giving her full attention to my child's diabetes. I like the teacher being an active participant, but not the care provider. It works for us.

Tell me how your little one gets care while at school. What is your biggest worry? Do you trust the people/system caring from you child?

Minimed CGM Update: I've Got a Secret

So summer has been busy and posting fell way off my radar, but I do have a few things to share. First, the CGM makes my life much easier, however it also can drive me nuts. Sometimes I wish I could go back to ignoring my diabetes; "feeling" my way through. I knew I wasn't high and I knew I wasn't low, but I tended to hang in the 150-220 range and that isn't good for anyone all the time.

So here I am, enlightened and technologically hooked up.

For the second time, I tried to insert the Minimed sensor in my upper rear; I love it (day one). It wasn't uncomfortable when I slept, but I was extra cautious when I turned over last night. I really don't prefer to do infusion sets there either, I am a stomach inserter. My daughter is a butt cheek inserter and to show her that the sensor didn't hurt, I had to do it myself.

I have to say, that reaching around to hold the sensor in place with two hands was challenging, but I managed. Next time, I will get my husband to help. The first time I tried to do the sensor in my rear, it went poorly. I did it too high on my hip and it hurt, a lot, so I pulled it out. $35 down the toilet.

So now for my not so secret, secret: I now insert the sensor at night, attach the Minilink transmitter and go to bed. I do not turn it on; I just let it be until morning. When I wake up and my blood sugars are stable, I start the new sensor and within seconds, I get the BG Meter Now calibration request. This lets me skip the first two hour calibration and that is a life/schedule saver for me.

One of the biggest irritations for me is the constant alarms over something or other (which is because the CGM is doing its job), but the calibration alarms have always felt inconvenient. Before, when I would decide to put the sensor on, I would have to think hard about where I was going to be when the first two hour calibration would be required. Usually, I would be in a meeting. Being beeped at, while talking business, then stopping to either snooze the blessed alarm or calibrate, drove me nuts. That is fixed with the evening insertion.

I still have to contend with the six hour calibration, but that is mostly no big deal.

Accuracy is mostly good; within 10mg/dl. I've contended with a few situations that threw me for a loop, but this thing isn't perfect.

Oh! One shocker. My A1C did not come down. It was the same as last time. I have not been vigilantly tweaking my numbers, I have just been preventing lows and highs. After all, I spend most my diabetes vigilance managing my kids diabetes and tend to just ride mine out, but I was shocked that it wasn't lower. I have read all over the place that the CGM isn't necessarily going to lower A1C's, but for me it has reduced the serious fluctuations in sugars. Rather than being high then low, I am more in the middle. I tightened my High alarm from 275 (yes, silly me) to 200. That should help.

I also decided to give Symlin a try again. Haven' t ordered it yet, but will post when I do. I have been gaining weight and increasing my insulin rates with no changes in my diet. I guess age and insulin resistance is the culprit. Not pleased about either, but at least there are options to help with both!

Travel to Maui: Pumps, CGM & Salt Water

We just returned from Maui where my sister got married and it was spectacular! I have proof!

We saw rainbows EVERY day and I even drove through the end of one. I have never seen anything like this, but only caught one rainbow in photos.

I was SO sick of diabetes on this lovely trip. Every time we turned around either my infusion set was clogged or my girl had sand in hers, or my CGM was beeping constantly at me. She was low, I was high, or we were both low and Dad was pulling his hair out trying to understand all the drama. I wore my CGM on the plane with no issues, either in flight or at security. No beeps and no worries with 10 hours in the air.


Maui is the loveliest place I have ever been, even in a draught. We stayed upcountry, which to me is the REAL Hawaii. The place we stayed had an orchid nursery, along with a property full of bananas plants, papayas, lilikoi (passion fruit), tangerine trees, avocado trees and lemon treess. Lilikoi is the best thing I have ever tasted. I walked out of my room each morning with coffee and grabbed a banana off a bunch that was picked the day before. Sweet!

We also spent plenty of time at the beach. No matter what we did to protect our infusion sets, we had to change them every time. Salt water is to blame I bet. As it dries, the salt crystals clogged the holes. A guess, but probably a good one.


Speaking of beaches, this is where I sat for three days when I wasn't in the water.


Aloha!

Three Years and Counting...

Today is the third anniversary of my daughter's diagnosis of type one diabetes.

I was at work when she called me to say that Daddy had checked her blood sugar; I could tell she had been crying. A wave of fear spread from the top of my head to the tips of my toes as I asked her, "What was it, baby?"

She was three, soon to be four and I knew in that moment that our lives were changed forever.

Goodbye

My lovely Mother-in-law died this week. She loved owls and I found this image online,

but couldn't find the artist, or I would credit it.

Diabetes Rhythms--Do you go with the flow?

Curious thing. I have been doing a lot of work on self-care over the past year and have become very intrigued with how out of sync "we" have become with our bodies, with our minds and our emotional and spiritual needs. I work less and play more, but it is so easy to forget that we live in cycles; like the moon, the tides, the seasons, the climate...ah the climate. A perfect example of what happens when we ignore our inner rhythms or when we push for things to be the way we want them, despite what is actually good for us.

Mind, body and spirit are tied; our thoughts tend to be the leader, but sometimes body and spirit don't follow, because they know better! That is what happened when I quit my job as an executive director. My mind was on overload, my body was exhausted, but I kept pushing it anyway and my spirit was on vacation; but I had a job to do. One day, I changed my mind or my wisdom changed it for me. I heard my body's cries, my spirit raised the white flag and my mind finally yelled, "I QUIT."

I have spent a lot of time in my short life fighting what my body is telling me. In the past year I have learned that my body is a barometer to how thoughts make me feel. You know that "feeling in your chest?" It is telling you something; to take action or to stop acting. It is amazing when you listen to that feeling, you almost always end up on the right path.

Scott's recent blog got me really thinking about diabetes fatigue. We go through phases, yet we refuse to recognize that this is normal. We are in a constant state of judgement; we should be 'doing something" to fix ourselves. We should be taking better care of ourselves. We are constantly shoulding on ourselves.

Would we expect the tides to stay high, or the moon to stay full or for our periods to stop, just because we say so? How can we expect our emotional, physical and mental state to stay on an even keel all the time? It is impossible, but we "think" we can fight it, ourselves, our feelings.

The biggest gift I have learned is to recognize when I am at a low point; I'm blue, I'm tired, I don't really care about my blood sugars, and I am going to eat anything I want. In recognizing that I am there, I then give myself permission to ride it out, becuase this too shall pass. Doesn't it always?

If I start feeling bad (emotionally, physically or mentally), I say, "Hmmm. Self, your not feeling so good today. Your in a blue mood. That's OK." Seriously, I have to say this out loud to myself (although not in a crowded room). I have to remind myself that it is OK to be in this place.

What invariably happens is that the blueness doesn't hang around as long as it used to. I also recognize that I might need to do something nice for myself today, like take a walk with my dog, go swim or go buy ice cream or new shoes. I also may do nothing but lay in my hammock for thirty minutes.

I am more respectful of my physical, mental and emotional cycles and what I need to make it through every day. I still have bad days, but not so many very bad days. If I remember to listen to myself and honor the phase I am in, things iron themselves out more smoothly and more quickly.

Do you, like Scott, feel diabetes fatigue phases coming? How do you honor this phase? For instance, I quit taking my blood sugars (less an issue with the CGM, but I quit looking at the numbers), but I always make sure I check before bed or if I feel high or low. How do you go with the flow, but keep yourself safe?

Children should not have diabetes--Our battle with the CGM

I am exhausted. My daughter is six, nearly seven and endures the every three day infusion set changes, the 8 to 10 blood sugar checks per day, but I just endured the longest hold out EVER over diabetes.

I have the Minimed CGM and I upgraded her pump, so she could use it too. Well, today was going to be the day. We went to the Endo and we were going to "give it a try." We have a trip planned to Hawaii and I wanted her to have the CGM with the 5 hour time difference, the constant activity and 12 hours of inactivity during the flights. So much to worry about.

We iced her butt, we talked, we hugged, we iced, talked, hugged, cried, iced, hugged, cried, hugged, hugged, cried, talked, hugged and cried some more.

The damned needle on this thing is LONG. It is freakin' scary, even for me on the first try. On the Navigator, at least you didn't see what was about to be plunged into you.

So we tried again. More hugs, ice, tears, then squirming, then Daddy tries to help. He holds her with a hug and she twists away. He holds her tighter and she cries and twists some more and he gives up. I talk, she cries. I hug, she hugs, she cries and 45 minutes later; totally exhausted and late for a play date, we promise to try tomorrow.

For weeks I tried to convince her that this was going to be a good thing. Less B.G. checks (she says she doesn't mind checking her blood sugar), less worry for me (she really doesn't understand). I talked to my counselor about how to approach this, because she is simply scared it will hurt. My words mean nothing. I had friends with young kids that have the CGM talk to her, email her; she is NOT convinced it won't hurt like hell. Words mean nothing; I can not change her perceptions of what could be.

My counselor said I need to talk from the heart and I did. I told her that I love her more than anything on earth, and that as a mommy who loves her, I have to do everything in my power to keep her safe and healthy. We are fortunate to have access to the CGM and as a mom who loves her little girl, I have to utilizes the most powerful forces in the universe to protect and help her be healthy.

She seemed to buy that; understands that this isn't just about what I "think" is best. But it doesn't changed the fact that she THINKS this is going to be the worst thing ever.

Holding her down and slapping the thing on her butt was what we had to do with infusion sets early on, but it just feels SO wrong to me with my child. I breech a deep trust with her when we have had to resort to that. It has broken our hearts more than a few times.

So I have given her a big job tomorrow, her job is to try her very hardest to use all the tools she has to keep herself as calm as possible. We can't change how she feels, but perhaps (idealistic mommy here) she can help herself be a little less tweaked. Anyway, I am emotionally wiped out. She is playing up stairs and I'm going to go close my eyes.

She cried out, "How did this happen to me? How did I get diabetes?"

What's a mother to do?

Diabetes CGMS Yahoo Group--A great resource!

I found a great resource in a yahoo group titled Diabetes CGMS. It has more than 400 members currently using various CGM systems from around the world. I posted a question about Air Travel with the CGMS and a firestorm errupted over safety in air travel.

I have connected with some really nice folks who either have the CGM themselves or for their child. No question asked, seems unanswerable. Keep in mind, this group is only for those currently wearing a CGM.

I think I am going to set a target date for my daughter and then slap this thing on her bottom. She is not convinced that this has any value to her and the fact that I want her to have it, only makes her resist it more. Is this six year-old behavior, or what?

Howdy Camp Bluebonnet Families!

I wanted to gove a shout out to all my new friends from Camp Bluebonnet, a camp for children with diabetes in Central Texas. This week was a blast, even as rain poured on our last day of camp. I had so much fun sharing with folks interested in the Minimed Real-time System. Lot's of interest.

Have a great summer friends and stay tuned for more info on the Minimed CGMS...I heard they are close to having one site for both the Sensor and the Infusion set; close as in maybe a year.

Feel free to post a comment and say howdy! I'd love to hear from you guys!