Diabetes Self-Care

Medtronic Minimed MySentry $2,400!

2012-01-09T16:53:00.002-06:00

I just got off the phone with Minimed and was pretty surprised to find the newly announced Minimed MySentry costs $2,400 and is not covered by insurance. It is cool, but I think I am more surprised by the lack of insurance coverage than the price. Hmm. Not surprised, but disappointed. Do you know what would have been smart, to annouce the upcoming release with the price, so we could get the sucker budgeted into our flexible spending accounts. The year just started and I've already ordered $500 in diabetes related supplies. There is no way I can forgo $2400 of my yearly allotment to buy this through flexible spending, but I might have budgeted for it in October. Shame!

I would love to have this thing, except I will never get the existing Minimed CGM on my daughter. I am so glad they are working on new products, but they REALLY need to fix the harpoon.

Really, what I need is an app that will read my daughters CGM or even her blood glucose meter and I will get alerts from it or be able to check on her when she is away.

Medtronic makes good products and really are industry leaders, but I am so incredibly sick of waiting for upgrades and better technology.

It is painful to wait for Medtronic Minimed to move and the MySentry product is a huge advancement (that I was promised five or six years ago), but they need to pick up the pace.

Oh! my goodness it is painful to wait. I swear the blood glucose monitors are exactly the same as I had in 1983, except 40 percent smaller and 40 seconds faster. Painful!

What are you waiting to see?

Another Dexcom Pro and Another Con

2011-12-05T07:33:00.002-06:00

I forgot something in my last post about the Dexcom Seven Plus. PRO: I love that I can wear the sensor for two weeks. Shhh! It's kinda a secret, but some folks I know get three weeks out of it if the glue holds.

However, CON: the receiver needs to be charged, so if you can remember to plug it in at night next to your bed, you are safe. Forget and the battery can go caput and you are out of luck until you can charge it again. I was out of town this weekend and forget the power cord, so it ran out of juice into day two and I was left hanging.

Not a huge issue, but a different one from the Minimed which has you charge the transmitter.

FYI- My site is getting hammered with comment spam. Hundreds of posts a week, so forgive me if I can't get them all deleted in a timely fashion. Don't click on them, it only encourages them. Blogger/Google, get your S*** together and stop this crazy madness!

I like Dexcom better than Minimed! Yeah, I said it!

2011-11-18T08:07:00.006-06:00

Jury is in! I have worn the Dexcom 7 Plus off and on for a few months and also switched out with the Minimed CGM. Frankly, the Dexcom is just more user friendly for several reasons. It has cons too, so let me lay them out Pro and Con style:

Pros

Sensor is TINY and doesn't hurt (much) going in. Much like an infusion set.
Lasts at least 7 days
Very, very accurate. Only a couple times I've had it off the mark and it was after the seven days of wear. Often within one or two mg/dl.
Alarms are quite and unassuming, but you know they are there. This is a big one for me. I hate the alarms on Minimed. They are obnoxious and difficult to program. Not impossible, but it requires a lot of effort to shut the thing up. I would need a whole other post to talk about the difference it makes to have the alarms more like Dexcom, so I'll leave it here.
You still get readings after a calibration request. This is also huge. I press the button to check my numbers and a polite little message says "Check BG." I can't, so I don't, but the graph ticks along doing its best without my calibration. I get out of my meeting three hours later and it is still holding my numbers, but I know that I need to calibrate, so I check my blood sugar, see it is really close tot he Dexcom, but I forgot to enter it in the Dexcom before my next meeting. I check the unit half-way through my meeting and see my polite little reminder and think, Darn it! I forgot to plug in my reading. Oh! Well, I can do it when I'm through." AND get no annoying, blasting reminders every 30 minutes. Really, this is BIG for me.

Cons:

Separate unit, which I have lost and then found. Bad for me!
Doesn't talk to my pump.
Can't merge the data

Running out of steam, but that is it in a nut shell. Minimed better get off ther asses. I have been waiting for a VERY long time and upgraded to get their technology coming out. But they have always failed on UI and don't seem to listen to their market.

I still love my pump, but I desperately wish Medtronic Minimed would step it up A LOT!

Better Success with Accuracy

2011-08-26T06:12:00.002-05:00

Well, the Dexcom caught a low in the middle of the night and it was right about the low, but 30 mg/dl off. But juice was administered.

I have to say, my daughter is being a champ with middle school schedules. Rough second day, but overall its been great.

For the first time I can remember, she is feeling self conscious about pulling out her meter and pump. She's worried, because the rules are so strict and kids think she is using a cell phone, which means an automatic detention. So many new kids she doesn't know, so the looks and questions like, "What's that?" get annoying.

Glad its Friday! Saturday, my girl is doing a roller derby camp all day. Should be fun!

Not Accurate, So Far: Dexcom 7 Plus

2011-08-25T10:41:00.001-05:00

Last night I was awakened by an alarm that said 47. Actual blood sugar was 90.

Today, alarm says 401, actual reading is 234. Calibrated and its back to 254, but still.

Like trending arrows: Dexcom 7 Plus

2011-08-24T22:04:00.001-05:00

I like the constant trending arrows; pointing east for level sugars and northeast/southeast for going up or down steadily, but not fast and of course, north or south, which is pretty way to figure out.

I know folks have been blogging about this product for years, but I might as well document mine.

Also, to clarify, I have great insurance, so this experiment is largely affordable. I still like my minimed cgm, but my daughter tried it once and that was the end of that. Harpoons don't play well with kids, do we are giving this a try.

My girl had never really cared about taking her blood sugar in front of folks, but 6th grade its so different. Eyes are on every move she makes and we need diabetes to be as discreet and private as possible.

Can't hear alarms on Dexcom 7

2011-08-24T19:26:00.001-05:00

Well, accurate readings, but the alarms and not loud enough and the vibrating is absolutely not strong enough.

Also, the receiver is easy to put down and walk away from. Potential problem.

Trying out Dexcom 7

2011-08-24T14:49:00.001-05:00

We are trying out the Dexcom 7. My daughter won't wear the Minimed, so we are giving this a try. She just started middle school and I really want her to have this technology, and I am furious that the FDA has held up the approval of the new, rumored improved, Minimed sensor.

First report of the day; couldn't feel the vibrating alarm to calibrate and it was very close to the body. Not a great sign, if you need alarms privately.

More later.

Disorienting Low and a Car

2011-04-16T08:11:00.005-05:00

I had a doozy of a low this week. It has been a LONG time since I got low and felt out of control. When I was younger I had some lows that had me begging for help or caused amnesia, but it really has been years. Now, I usually get low, feel it, drink a juice and move along or more often than not my CGM catches me as I fall.

This week I have been dropping a lot. Don't know why, hormones or absence of them, who knows, but Thursday my CGM was giving me alarms about predicted lows and I was in full work mode. Trying to solve a problem and I just wouldn't stop until I had it fixed. The CGM was reading 70 and I really should know better, that 70 probably means 50, but I didn't stop to take care of myself.

On a mission, I drove home from work to pick up my daughter from school, dropped her off at the house and headed to the computer store to buy a cable. I had a problem to solve and I needed that damn cable.

In the car, I felt so out of sorts. Despondent, anxious, weird, but not so obviously that I recognized what was happening. I had been having a hard week, really under pressure and I was thinking to myself that maybe this feeling I had was a new normal. That I'd feel this way forever. It was weird.

I got to the store and I asked if this cable would fix my issues and they showed me the package and pointed to the info I needed, but I couldn't read it or focus and just asked them to be sure this is what I needed.

I got home (THANK GOD), sat down at the table with my hubby, pulled out my blood sugar kit and I was 37. I looked at the meter and said, "Wow...37." My man got me a juice box and I drank it, but as I sat there I felt strongly that I was supposed to be doing something. I asked him, "Am I supposed to be dong anything?" He said, no. Quiet. I asked if he was sure and he replied yes. Quiet. I said, "I am just supposed to sit here?" He said yes and so I sat there, waiting for the juice to hit.

This is the first time I can remember since I was in my 20s that I was actually "disoriented." I really didn't have a clue what was going on. My CGM was still saying 70, so it was just a little off (HA!), but I somehow instinctively got out my kit.

I am so grateful for adrenaline when I was on the road. Without that, I could have met a very sad and disoriented end.

My 10 Year Old is Now Hooked Up: CGM

2011-01-10T23:09:00.003-06:00

Well, we pulled the trigger and got our daughter the upgrade for her Minimed insulin pump to a Revel with the Continuous Glucose Monitor. I warned her it was coming, but I was not prepared for the resistance to putting the sucker on her.

The pump is great, the CGM sensors, not so much. They are freakin' huge needles and it took me one hour to convince her to let me put it on her. We iced her bum, we talked, we cajoled, we pleaded, we reasoned, but the only reason she consented was because we had a birthday party to go to, the clock was ticking and I refused to back down.

We had to establish the rules of engagement. Three kisses, then I had to count to three, but I couldn't touch her with the inserter until three. Then I had to say "ok" before I pushed the button.

She did it and cried like a baby. Said it hurt like hell. It bled a little, but she said it hurt for a good 20 minutes, but she was fine by the time we reached the party.

We didn't start the sensor until after the party and the sensor had its wick wet, so calibration was immediate. She thought it was pretty cool when the blood sugar numbers finally popped up on the screen of her pump.

She watched it through the afternoon and into evening. We'd ask, "Have you taken your blood sugar lately?" with a smile and she would whip out her pump and tell us the number.

We calibrated at bedtime, but she lost the sensor around 11:00 pm. I positioned it closer to her Minilink Transmitter and she was fine, until 3:00 am. She came in and said she was high, so I wanted to check against her meter and it was off. CGM said 315, meter said 230. That was significant enough for me, because the calibration had about the same difference earlier in the evening. I sat in the dark and decided to turn off the CGM and restart the sensor.

By morning things seemed to match, but she was still running high. She took some Advair for breathing difficulties and I know that was shooting her blood sugars up. She called me from school and said the thing was beeping all morning. High blood sugars, missed bolus warnings, even though she bolused. I reminded her it is going to take time to balance her insulin levels to match what is happening in her body. When that happens, she hopefully won't hear any beeps at all .

More in my next post, but I'm not sure I will be able to convince her to put that sensor on again. We'll see. More later.

Ten is a Magic Number and When Girl's Brains Drain Like a Sieve

2010-09-10T18:30:00.004-05:00

I've fallen off the blog for awhile, but I have a new mission and I welcome your help. My daughter just turned 10. She has been an amazingly compliant and helpful kids with diabetes. She knows more than most people about the disease and has always been very independent in her management.

On one of my previous posts, a reader told me to, "Let go. If you don't want Mutiny how about listening to your child instead of being a constant nag." Fair enough. My post was mostly sarcastic, but the fact is that every single day this week she forgot to take her insulin at one point each day, we ended up having lots of talks. I asked, "What would need to happen for your to remember to take your blood sugar and insulin?" She looked me in the eyes and said she honestly doesn't know.

I asked her what the benefits would be if she remembered and we talked about those. I also asked what the downside of not remembering is and we discussed all the ways that it sucks.

She is a SUPER kid. Bright, fun, loving, not rebelous at all, but she is just not remembering the task at hand. So I started asking friends about their girls, kids without diabetes, and it appears that 10 year old girls develop holes in their brains.

I did some more asking around, teachers of fith grade included, and they all agree that at this life stage, that self-centeredness abounds; that they really can't think the way they did even just a year ago, which explains a lot.

Another friend, who has a 10 year-old girl and a 12 year-old boy, told me he has been reading a book, Getting to Calm: Cool-headed Strategies for Parenting Tweens and Teens, which takes you into the emotional and mental world (brain) of our growing kids. I haven't read it yet and I tend not to enjoy books full of good advice (I read the first 30 pages of How to Tall, So Kids Will Listen. How to Listen, so Kids Will Talk about eight times). But here's what my friend, who has read a lot of it said.

He said that the girls at 10 are in a stage of "pruning and blooming." Their prefrontal cortext is said (simplified) to "orchestrate thought and action in accordance to internal goals." At this age, this is being "pruned," so to speak, meaning that developmentally, this part of the brain is somewhat out of order for a period of years often referred to by parents as teenage hell.

He said that beginning around age 10 for girls, they are very challenged at staying on track; starting one thing and moving to the next and then to the next. Diabetes is very much a series of steps that align with an internal goal of staying healthy and keeping mom out of her business.

So here is one scenario this week.

Snack time at school, 10:00 am
R: "Hi Mom, my blood sugar is 218.
Me: "OK, just please remember to put your blood sugar in your pump if it has gone off screen."
R: "Ok, Mom. I will. Love you. Gotta go!"

Lunch Time, 12:30 pm
R: Mom. Uh. Mmm. Uh, Mom? I don't know how this happened, but I'm 428.
Me: Ok. Did you take insulin for your snack?
R: Uh, I think so.
Me: Can you check your pump please?
R: Uh. Ok, hold on a sec. Mom? No.
Me: Ok. Didn't we talk at snack time? I believe you said you were 218. Don't you remember me telling you to be sure to put your BG in your pump?
R: Yes.

You know how the rest goes. Correction and everything is fine...until Wednesday. Same scenario, but she was at a friends house for dinner.

R: I'm 400.
Me: What did you eat?
R: Barely anything. A few crackers.
Me: Did you have milk?" She shakes her head, no. "Did you have any other carbs?
R: No...Oh! wait! I did have one of those, mmm, what do you call them? Mexican breads with the sugar on top?
Me: What kind of bread? Pan Dulce or the crispy ones rolled in sugar?
R: Uh. Those.
Me: Did you take Insulin?
R: I guess I forgot.

I am actually ok if she has a treat, but she knows full well, that that means she has to take care of that snack. She KNOWS this!

So, I need some strategies to help her remember, because it is obvious to me that everything has leaked out of her brain.

Today, I gave her a green rubber O-ring bracelet and told her that this is a physical reminder to take her blood sugar and take insulin. Her teacher is going to help remind her, but also give her something to tape to her desk which will remind her of these important tasks.

So, any advice you all have is welcome. I am totally willing to support her until her brain is whole again (18 or so they say), but finding ways that don't embarrass her, make her diabetes overt to anyone else and aren't hard for me to manage are the goal.

I'm hungry because I'm low, not because I'm hungry.

2010-07-21T00:12:00.002-05:00

But here I sit eating a bowl of cereal. My blood sugar is 56. I feel low and I feel hungry. I drank a juice box, but no, I could not resist the call on Honey Bunches of Oats and milk. In fact, I think I'll have another bowl.

No, the juice hasn't quite hit yet...

Kids get easier...right?

2010-07-17T23:52:00.004-05:00

Seriously, today has been a long day. We had citywide swim championships today and now my girl is over at a slumber party where cake will be served at midnight. She is nine, almost 10 and she is an amazing kid. She forgets stuff, like taking your blood sugar or bolusing, but she tries. I just hate leaving her in the hands of other families.

It isn't that I think anything will happen per se, but I worry that nothing will happen. They won't remind her to check her sugar before cake and won't remind her to check before sleep, but most important, she won't remember to call me and tell me how its all going...blood sugar wise. Uggh.

Three minutes before cake-o-clock. She was low all evening. She was 58 when I was at their house. She was 63 at 9:30 at the pool (they checked her when I asked!!!!). Wonder how she is doing now. Really, I wonder.

One more minute before cake-o-clock.

Wonder if she'll call me? I feel like a lovesick teenager waiting for a boy to call. "Does he like me?" "Is he thinking of me?" The answer to both ruminations here is, "No! She is at a birthday party! She isn't thinking about you, or your worry!" But I do bet she is taking just fine care of herself. Mommy has some letting-go work to do, but it can wait until she is 25. Goodnight!

Minimed Revel: Jury still out, but underwhelmed

2010-05-05T17:46:00.003-05:00

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

2010-02-18T15:24:00.005-06:00

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

2009-12-06T20:41:00.002-06:00

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

2009-11-18T10:10:00.005-06:00

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

2009-10-15T22:49:00.004-05:00

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.

2009-09-02T23:15:00.004-05:00

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!

2009-08-29T09:50:00.002-05:00

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

2009-08-02T00:08:00.003-05:00

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

2009-07-10T21:16:00.002-05:00

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

2009-06-15T22:19:00.003-05:00

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

2009-04-13T16:48:00.005-05:00

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...

2009-02-22T07:38:00.004-06:00

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!

2008-12-28T14:07:00.006-06:00

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.

2008-12-28T11:01:00.003-06:00

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

2008-07-07T22:56:00.002-05:00

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

2008-04-18T07:37:00.003-05:00

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

2008-03-13T11:52:00.003-05:00

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!

2008-02-22T11:27:00.005-06:00

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?

2007-12-13T16:27:00.000-06:00

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

2007-12-09T21:36:00.000-06:00

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!

2007-11-10T22:10:00.000-06:00

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.

2007-11-06T19:54:00.000-06:00

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

2007-10-05T10:24:00.000-05:00

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

2007-10-02T19:02:00.001-05:00

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

2007-09-09T12:30:00.000-05:00

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?

2007-08-28T19:09:00.000-05:00

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

2007-08-23T08:17:00.000-05:00

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

2007-08-05T19:36:00.000-05:00

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...

2007-08-05T15:50:00.000-05:00

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

2007-07-20T17:25:00.000-05:00

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?

2007-07-09T09:59:00.000-05:00

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

2007-07-06T15:13:00.000-05:00

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!

2007-06-19T20:54:00.000-05:00

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!

2007-06-15T14:52:00.000-05:00

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!

Reminder: Freestyle Navigator Info in Archives

2007-06-11T20:17:00.000-05:00

I was at Camp Bluebonnet today with my daughter and a bunch of great parents and their kids with diabetes and I was reminded of how grateful I am to not only have a CGM, but to have had the experience with the Navigator CGM that is still not released yet. For those of you just tuning in to my blog, and are interested in learning more about the Freestyle Navigator Continuous Glucose Monitor to be released by Abbott Diabetes Care later this year (crossed fingers), I have chronicled three months of trials in the first part of my blog archive.

Keep in mind, that my comments and photos were of a version that isn't necessarily going to be released, and the things that will most likely change are size and calibration times. I love my Minimed Real-Time, but the Navigator was awesome when the CGM projected lows or highs -- really quite accurately. I look forward to the day I can upgrade to the latest technology, but I count my blessings every day I have the sophisticated technology I do have.

There will always be a tomorrow, as with computer technology, but to utilize the best the market currently offers is an awesome experience and My A1C is the better for it. Next steps are to get this and all CGMS covered by insurance, but for now I count my lucky stars...Oh! my blood sugar right now is 138 post dinner.

ARGH! Spoke too soon! Bad Sensor Day Eight!

2007-05-31T17:01:00.000-05:00

About an hour after I posted my last note, I got two "Cal Errors" and a "Bad Sensor."

I am ok with six or seven days, but I am really challenged to keep it on longer. Not becuase I have to, but becuase I love beating the system.

Try, try again!

How to Get Past Sensor Day 7--Minimed CGM Update

2007-05-31T14:14:00.000-05:00

I am once again grateful to have this CGM AND I have figured out (with the help of a Minimed source) how to extend the life of the sensor beyond seven days! Once you see the "Sensor End" on the sixth day, the Minilink transmitter needs to be disconnected and charged 20 minutes or so. Then it can be reconnected and "Start Sensor."

Yea! So, I am on day eight with no irritation and accurate readings. I have promised to do comparisons of reading vs. finger tests, but I don't check my finger blood very often (bad girl).

My daughter is having a blast at Camp Sweeney, but I have to leave tonight and stay in Dallas, so I can go get her Friday morning. I have talked to her "Big Sister" at camp everyday, except today and she is well over her home sickness and doing really well.

Diabetes Camp for Kids--We are ALONE!

2007-05-27T22:01:00.000-05:00

My daughter is not home. She is at Camp Sweeney in north Texas, close to the Oklahoma border. I was SO amazed at what a fabulous place this is and how many competent and extraordinarily friendly people were there waiting to greet us.

She is only staying for the Mini-Session which is Sunday through Friday morning, but for her first time, I think this will be perfect.

I feel so comfortable about the place that thinking about the possibility of her staying for the three week session next year amde my hubby and I giggle. We talked about hitting the Mexican Rivera for a week -- ALONE!

We haven't left our girl in any one's care for more than a sleepover and the idea of us getting some time alone is awesome. I just walked in the door from a very long drive, so I haven't had time to miss her yet, but I am so happy she is having fun and being cared for meticulously!

UTMB gives hope for diabetes cure

2007-05-26T09:28:00.000-05:00

From staff reports The Galveston Daily News

Published May 26, 2007

GALVESTON — A stem-cell cure for diabetes could be one step closer, thanks to a discovery at UTMB that is exciting the medical world.

Researchers at the Galveston facility have found a way to produce insulin by engineering the stem cells from umbilical cords rather than from embryonic stem cells.

Their discovery someday may help cure type 1 diabetes by allowing sufferers of the disease to grow their own insulin-producing cells for a damaged or defective pancreas.

The researchers announced their laboratory finding, which caps nearly four years of research, in the June issue of the medical journal Cell Proliferation, posted online this week.

Their paper called the process “the first demonstration that human umbilical-cord-blood-derived stem cells can be engineered” to synthesize insulin.”

At present, the discovery is extremely basic research, Dr. Randall J. Urban, senior author of the paper, said. “It doesn’t prove that we’re going to be able to do this in people — it’s just the first step up the rung of the ladder,” he cautioned.Urban, professor and chair of internal medicine at UTMB and director of its Nelda C. and Lutcher H. J. Stark Diabetes Center, said: “This discovery tells us that we have the potential to produce insulin from adult stem cells to help people with diabetes.”

The lead author of the paper, UTMB professor of internal medicine-endocrinology Larry Denner, said that, by working with adult rather than embryonic stem cells, doctors practicing so-called regenerative medicine eventually may be able to extract such cells from an individual’s blood, then grow them in the laboratory to large numbers and tweak them to direct them to create a needed organ.

In this way, he said, physicians could avoid the usual pitfall involved in transplanting cells or organs from other people — organ rejection, which requires organ recipients to take immune-suppressing drugs for the rest of their lives.

Huge numbers of stem cells are thought to be required to create new organs. Researchers could remove thousands of donor cells from an individual and grow them in the laboratory into billions of cells, Denner explained.

Then, for a person with type 1 diabetes, researchers would engineer the new cells to become islets of Langerhans, the cellular masses that produce the hormone insulin, which allows the body to utilize sugar, synthesize proteins and store neutral fats, or lipids.

“But we’re a long way from that,” Denner warned. The researchers used human umbilical-cord blood because it is an especially rich source of fresh adult stem cells and is easily available from donors undergoing Caesarian section deliveries in UTMB hospitals.It also avoids the moral and legal difficulties associated with embryonic stem-cell research in this country.

“However,” Denner added, “embryonic stem-cell research was absolutely necessary to teach us how to do this.”Embryonic stem cells have been engineered to produce cardiac, neural, blood, lung and liver progenitor cells that perform many of the functions needed to help replace cells and tissues injured by many diseases, the paper notes.

Among the insights into cell and tissue engineering gained from work with embryonic stem cells, it adds, are those “relevant to the engineering of functional equivalents of pancreatic, islet-like, glucose-responsive, insulin-producing cells to treat diabetes.”

In addition to Denner and Urban, co-authors of the study — entitled “Directed engineering of umbilical cord blood stem cells to produce C-peptide and Insulin” — included Yvonne Bodenberg, Jiangang Zhao, Margaret Howe and Ronald G. Tilton, all of UTMB’s Stark Diabetes Center and McCoy Diabetes Mass Spectrometry Research Laboratory.

They were joined by Julie Cappo, formerly of UTMB and now of Institut Universitaire de Technologie, Montpellier, France; John A. Copland, of the Department of Cancer Biology, Mayo Clinic Comprehensive Cancer Center, Jacksonville, Fla.; and Nico Forraz and Colin McGuckin of the Institute of Stem Cell Biology and Regenerative Medicine, University of Newcastle Upon Tyne, England.

Things are good--Minimed Real-time working well

2007-05-24T21:00:00.000-05:00

It has been awhile since I've written! I am happy to report no issues with the Minimed Real-Time System. It is working well, I just wish I could get my blood sugars down. It surprises me each and every month how steeply my blood sugars climb with PMS. It is shocking really. Last week I was 100...almost all the time, this week I can't get much below 200 and that is with a significant increase in my basal pattern.

The sensors on this thing have NOT lasted me more than seven days. I get a bad sensor reading on the seventh day almost every time.

My daughter is going away to a camp for kids with diabetes. This is her first time and she is really nervous, but I think she'll have a blast. I missed out on camps as a kid with type one. I am sad about that, but hopefully my girl will have enough fun for the both of us.

She put on the camp questionnaire that her goals at camp are to have a lot of fun and to learn how to measure her own food. How cute is that!

Minimed REAL-Time CGM Curses and Gratitudes--Part II

2007-05-16T11:56:00.000-05:00

Having the Minimed Real-time CGM is a blessing, but it can be really annoying, too. I need to be frank and this may horrify some people, but I prefer NOT to deal with my diabetes. I am not motivated to take my blood sugars and I have a pretty good sense of my blood sugars without checking 4-10 times per day. I got the CGM because I thought it would lessen my resistance to diabetes self-care, but at times the thing just annoys me. I don’t WANT to look at my pump or hear that damned alarm. The alarms rarely warn me of problems, this is specifically BECAUSE I have the CGM and am in good control with its assistance, but the darned thing is always asking for something.

Yesterday, I left my blood sugar kit at home and missed a calibration for 5 hours. This means the alarm goes off what feels like every 10 minutes, but it may be 30, and I want to toss the thing out the window. Common sense says, “Just check your BS first thing in the morning and last thing at night, but I forget, so no logical solutions are necessary.

Then the sensor ends, which means stopping, starting the thing again and then calibrating again, then calibrating again in six hours and again before bed. Meanwhile, I get a low reservoir alarm and my battery is getting low and I just want the thing to quit beeping at me. Oh! I put my pump on the left and not the right side, so I also wrestle with “weak signal” alarms.

By the way the Navigator had a HUGE range for transmission--10 feet at minimum. I rarely had a weak signal and in fact left the receiver upstairs in my bathroom all the time and still tracked readings. I put the Minimed pump under my back while I’m sleeping and I get a “weak signal” alarm; THAT is ridiculous.

A friend who started the CGM with me just left the thing off for a week and that sounds good to me because all the blessing I have received are slightly shadowed by frequent alarms of one kind or another.

I am really just not as deeply committed to my diabetes care as I thought I “should be.” I want to reiterate that this CGM is a GIFT and one of the best diabetes technological advancements since insulin. Sometimes I just don’t want to think about it AND I know that if I don't, I won’t do any permanent damage.

Minimed REAL-Time Minilink Doing Well--Need Advice on Longer Wear!

2007-05-12T08:57:00.000-05:00

OK, so I haven't posted in a long time about the Minilink, but things are going really well. The only problem I am having is that I can't get the sensor to last more than 7 days. At the sensor end warning on day three, I unplug the minilink and recharge it for a couple hours. At the second Sensor End warning, I try the same thing, but I get two Cal Errors after I reconnect and then a Bad Sensor. Any advice on moving past this would be appreciated.

Things I am doing:

I have tried inserting the sensor at a deeper angle than 45, I put the sensor in my stomach (tried my hip and for me, it hurt like hell, but I hate infusion sets there, too).
I let the sensor warm up about 30 minutes before I insert it
Once it is inserted, I wait about 15 minutes before connecting the Minilink(to wet the cannula)
I recharge the battery at each "Sensor End" which is every three days

Regarding accuracy. I have found this to be really accurate. I have discrepancies occasionally, but not on the norm. Overall, I am very happy with this and if I wasn't wearing it, I wouldn't know what my blood sugars are. As a busy mom, it is SO easy for me to blow off regular blood sugar checks, so this CGM is saving me (I do have a very good sense of whether I am high or low, but I would prefer to not be 180 all day, which is why I got this).

Send your advice my way on how you get longer sensor wear. I have a friend (medical professional) who has had three weeks of wear (still on her), but I have already tried everything she is doing.

Happy Mother's Day!

2007-05-11T13:35:00.000-05:00

The Joy of the Stomach Flu AND Low Blood Sugars?

2007-05-01T18:26:00.000-05:00

Boy, yesterday afternoon started a doozie of an evening. My daughter had a snack and insulin around 4:30, was 54 at 5:30 and threw up the OJ for the low at 6:00 p.m. and still had insulin on board from the snack at 5:00.

I worked from then until about 10:00 p.m. to get her blood sugar above 55. I worked with her CDE on the phone and we tried honey, tiny sips of juice, the gels that taste like crap; we tried gum with about 8 grams of carbs, crackers, cheerios (honey nut) and finally resorted to a small amount of Glucagon injected to get her up over 100. We gave her some Phenergan to stop the madness; she only puked three times total.

I checked her blood sugars every hour last night waiting for highs, since that is normally what happens when she is sick. At 2:00 a.m. she was in the low 200s, so we gave a slight correction. At 5:30 she was 115, so I thought, “YEA, I can sleep a couple hours”, but at 7:30 she was 34 again. The good news is she drank her juice without argument or puking. The day has been fine from there, but that is the first time I have had that happen; even with 24 years of diabetes under my belt.

My daughter may never eat honey again.

Minimed REAL-Time CGM Back on Track / Camp for T1 Kids

2007-04-29T11:59:00.000-05:00

With the exception of one weird and whacked out reading comparison, my blood sugars have been matching very closely with the finger sticks. I am relieved! My daughter just got her pump upgrade and we changed from purple to blue, which makes her really happy. I am being patient, but I hope she give the CGM a try. She can try mine out before we buy.

Yesterday we had the pleasure of meeting two other families living with T1. Moms with kids going to Camp Sweeney decided on a play date before the kids head off to camp and we met at Central Market (a lovely grocery with outdoor play area and great live music). The three girls played on the playscape and moms chatted about all kinds of stuff, but the focus was on diabetes and how we handle so many of the complicated situations we have with little ones with T1.

My girl was pretty nervous; she is six and a half and the other girls are eight, but they were so sweet and asked my girl if she wanted to play. Last night she told me how much she loved meeting the girls and one of the moms is pulling together another group before the one week mini-session at Camp Sweeney (Camp Sweeney is an overnight camp for children with diabetes that lasts one week for the mini-session and three weeks for the regular sessions). My girl surprised me when she said she wanted to attend.

Anyway, it is so nice to be developing a community of friendships with kids who have T1. My daughter also attends Camp Bluebonnet (also for kids with diabetes), which is a day camp about an hour from Austin and that is another place where these kids will grow their friendships. When I was diagnosed at 14, I knew only one kid with T1 and she abused her body. She gave up trying early in her adolescence and I didn’t like to be around her, because her attitude was so bad. I never got the chance to go to Camp Sweeney and I’m a little upset my parents didn’t encourage me to go. I didn’t understand at the time how cool it would be to hang out with kids in my same position.

Anyway, my daughter has the opportunity and I hope it grows healthier attitudes and wonderful friendships.

Minimed CGM Lost Sensor AGAIN! Friend has Same Problems

2007-04-26T16:07:00.000-05:00

I met the loveliest woman at the Minimed REAL-Time Pump and CGM training on Monday and we have been e-mailing each other about our experiences with this thing. Since we put on the sensors at the doctors office on Monday we have both experienced a some really wide ranges between finger sticks and the readings on the CGM. For instance I tested 261 and the CGM said 140. I even did a correction for the 261 and I saw no change on the CGM.

She had the same issue, finger test 227, CGM 147 with two down arrows even. She reported two Cal Errors and a Bad Sensor yesterday, so she switched out everything feeling a little frustrated that the sensor only lasted three days. Today she was working out (with new sensor) and the CGM kept giving her LOW alarms showing a blood sugar of 40 for an hour. She tested every ten minutes while this was happening and got finger test readings of 140-240. What gives?

Today is sensor day four for me and I got two Cal Errors and a Bad Sensor. I wonder if we have a bad batch of sensors?

More later...

Training Babysitters to Care for Kids with Diabetes

2007-04-25T21:28:00.000-05:00

Tonight I did a workshop for a nanny/babysitting service in Austin so their nannies could help families with children with type one diabetes. It was about an hour an a half and I provided the basics about what diabetes is and we discussed what parents fear most in leaving their child. We covered a lot of basics of care like drawing insulin in syringes, giving shots to a stuffed practice tool, playing with my pump and I had each of them check my blood sugar. I brought six different kinds of meters, insulin pens, Glucagon, etc, so they were familiar with what they might find in a families home and I put together a 24-page handout with lots of details, should the get a client and need a refresher.

The women were fascinated. We even practiced counting carbs and there was a tray of fruit, cheese and crackers and I asked them which of the foods on the tray had carbs. They all agreed that the crackers and maybe the cheese had carbs, but they had no idea fruit was in that category; so we had the basics of nutrition talk.

One of the things I stressed was that their intuition was their best guide. If they think something isn’t right with the child, just check their blood sugar and find out. We talked a LOT about lows; what to look for, how to handle and what to do in an emergency.

I also stressed how important it is to CALL THE PARENTS if they don’t know what to do, or even if they need to know how many carbs are in a banana. I love getting calls from my sitter asking for clarification on something. It gives me a chance to praise her good decision making and also help them feel more comfortable about coming back for another sitting job.

I would love to know your stories around babysitting; what worries you most and what would give you more confidence about going on a date with your significant other. Having a child with diabetes can be so all consuming and we all need a break, so I am hoping a few more families living in Austin will get a chance to get out.

Photo by Tiffany Chapman http://www.freephotosbank.com/10489.html

So Frustrated My Throat Hurts from Screaming

2007-04-23T22:19:00.000-05:00

I exploded with frustration last night when I realized I had left a brand new bottle of Novolog in Dallas. I was there caring for my family as my Mother-in-Law who was just diagnosed with malignancies on the left side of her brain. So, I was on day four of a bad cold, it was midnight last night and we just drove four hours with a six year-old, I was out of insulin, my battery was low and my blood sugars were above 200 all day, even with my alternate pattern—I was exhausted.

So, before I took care of the business at hand, I exploded. All I wanted was to get a good night sleep, something which has eluded me for days and here I was at midnight, changing infusion sets, batteries, draining the last drops from a bottle of insulin AND setting my alarm for 2:00 a.m. See, I took off the Minimed REAL-time sensor last night because I was getting “trained” today on how to use the thing. I thought I would just take it off and let the battery charge, which turned into another reason for me to scream. Bad idea—I now had a 2:00 a.m. wake up call to be sure I wasn’t low (or high).

So, I screamed at my husband--really loud. I screamed at him for leaving the insulin in Dallas (yea sure, it was his fault), I screamed at him for being lucky and not to have to deal with this crap all the time, and I screamed at him for many things that had NOTHING to do with anything. I totally lost it!

For four days, at the hospital in Dallas with family, friends, kids, I was the strong one; I took care of everyone and kept things positive despite the fact that doctors were doing brain surgery. I nurtured everyone, bought lunch, talked to church members, played with the kids and smiled warmly and confidently at mom as she rested in the ICU post op. I controlled of my daughters diabetes, in spite of the fact she probably didn’t consumed anything all weekend that grew from the ground. I took care of everyone, but me.

I got angrier than I have been in many, many months—maybe even a year. But today I hugged my husband very tightly, I took a handful of vitamins, drank two glasses of my favorite tea, watched a show I really like and am going to bed no later than 10:30 p.m. I need me right now and last night was a screaming wake up call to give myself a freakin’ break!

Lost Sensor--My First Minilink Sensor Change

2007-04-20T12:22:00.000-05:00

So, I lost my sensor yesterday. I had problems on Wednesday; I had a Weak Signal for awhile then got a Lost Sensor, even when I held the pump right next to the sensor. So I reached the conclusion the battery must be dead. I couldn’t tell because the sensor readings were all blank, after all, it couldn’t read with no signal and I couldn’t access past sensor data either (DUMB) to see if this was a low battery. So I recharged the battery and reconnected and went through the whole calibration process.

Yesterday, I got a Cal Error about 30 minutes after my first calibration. On my second try, where my blood sugar was exactly the same as the first time (ruling out blood sugar fluctuations as the problem) I got a second Cal Error and then a Sensor Failed.

So, I ripped it off and started over. What surprised me was how soft the sensor canula was; much more flexible and thin than an infusion set. I had a small red spot at the insertion site, but it looked better within the hour.

Things are back on track, and I had eight days wear with my first sensor, so not too bad. I got some advice from Noel that inserting the sensor at 80-85 degree angle helps prolong the life. I tried it (I think), so we’ll see.

Accuracy has been good, but not as close as the Navigator. Maybe 40- 50 point spreads on occasion, but I think my Freestyle Flash runs high when I calibrate. I haven't done a comparison as I ran out of BD strips, so will do soon enough.

I have pictures to post, but I will have to do later.

So, What Have You Done for YOU Lately?

2007-04-17T16:30:00.000-05:00

It is a rainy day in Austin and everything is SO green. I love the rain, especially this time of year. It is days like this that make me all introspective, and I have a question for you.

When was the last time you did something nice for yourself?

We are all fabulous people and live with interesting and sometimes difficult circumstances, so do you ever take time to yourself—treat yourself to something special, just because you need it?

I have this beautiful Permission Granted box gifted to me by two friends that is filled with little bits of wisdom and invitations to do something nice for you. They say things like:

Develop a collection of your own art supplies—and don’t let the kids use them
Allow yourself to say NO!
Visit a Farmer’s Market and treat yourself to your favorite fruit. Eat it on the front porch as soon as you get home
Eat a dollop of cookie dough without feeling guilty (my FAV)
Paint your toenails a vibrant color

This week, I stopped at my favorite Mediterranean grocery and bought a huge tub of tabouli, freshly made hummus and warm pita bread--right out of the oven. I LOVE tabouli, so I got in my car and made myself a huge pita filled with these amazing flavors. It was a mess! The explosion of lemon, parsley, onion and tomato is so intoxicating; It was a real treat for me.

"Self-care is not about self-indulgence, it is about self- preservation." ~ Audre Lord

Tell me, what have you done for you lately?

Day Four--Minimed Real-Time CGM--Darned glad I have it!

2007-04-15T12:21:00.000-05:00

Happy News regarding the Minimed Real-Time Minilink--I am wearing the sensor past the three day "Sensor End." I just started a “new sensor” without actually connecting a new one and it is working fine. Calibrations have been normal and the required two hour calibration was actually prompted within the hour of reconnecting the old sensor (I’ll post more on process later).

I still haven’t tried the software, but it is web-based and I’m not sure how I feel about that yet. It would be nice to look at the data collected, but I just don’t have the time to figure it out right now.
We are having some interesting dialogue in the comments of my previous post. I’d love to hear more from you lurkers out there.

Buying this tool brings up lots of issues for me. It is expensive, it is cutting edge (for the moment) and I can’t afford it right now. My parents, however, can afford it and I have accepted their offer to buy this thing.

I have danced and danced around whether or not to BUY and I have had a list of excuses why I shouldn’t: the technology will be outdated in a matter of months; it just costs too much; the insurance won’t pay for it; I don't want to put this on a credit card,; what if I regret it; or what if it doesn’t live up to my expectations?

Each excuse I made in my head and with my husband seemed very valid, but I have come to realize that each excuse said the same thing, “I am not worth it.”

This shines through for a lot of women, especially around areas of self-care. Each time I ignore what my body tells me I need: more rest; a big spinach salad for lunch; a break from the computer and my work; a long walk; or ten minutes in my hammock; I am really saying to myself that I don't deserve these luxuries.

My father is thrilled when he hears I am avoiding lows and that I have only had two high warnings in four days. It feels so good to accept this without strings; this was a challenge. It took me weeks to think of this as a gift from them and not a burden to them. I am fairly pleased with myself right now and my body is thanking my every day!

Photo from www.freefoto.com

Day 2--Minimed Real-Time--I Like this!

2007-04-12T23:37:00.000-05:00

I like this thing. I like having no additional baggage; I never really realized how stressful it was to carry around that extra unit with the Navigator. What if I lost it!

I wish I could look back at more information stored in the CGM. You can only scroll back for several hours to get readings. The bar graph is supposed to sub for that. I haven't downloaded the software yet (One of my least favorite activities is downloading software), so I'm sure that will be where I get my good data. I love having this number all the time. I finally figured out the calibrations. See comments from my last post from Noel about specifics related to calibrations.

Curious if any other Minimed wearers are interested in having this thing. My greatest challenge is NOT pushing my daughter to get one. We are ready to order at any second, but I want this to be her decision. Just imagine the joy of going to bed and knowing an alarm will sound if she drops or goes high. The joy of sending her off to school or one of the random day summer camps we send her to, knowing all she has to do is look at her pump to know where she stands.
This is a worry eliminator.

Really wish the CGM had the smarts of the Navigator in terms of alarms. They have the best thing since canned beer with an alarm that warned you 30 minutes before a low or high. THAT, my friends, is cool and it worked 97 percent of the time. Once, I got a warning of an impending hypo and my sugar was at 125. I thought, I'll take care of that after I drop off the kids. How fast could it be falling. Well within 30 minutes I was at 60, five minutes later I was in the 50s, five minutes later, and after a juice, I was in the 40s. IF I had headed the warning, I would have drank a juice, yes at 125, and watched as I dipped to the 80s and then slide back comfortably into the 100s. This happened many times. I loved that, so Minimed, this is the goal for the model next year.

Let me hear from you. I know money is the biggest obstacle to getting this thing, but would you want it? What do you think about the technology. Does the idea of this kind of technology, perhaps even having a closed loop system, make having diabetes more bearable? I am ashamed that the CGMs and pumps costs so much; that this technology is so inaccessible to so many people. I am very fortunate. Very fortunate indeed.

photo from www.freefoto.com by Ian Britton

Inserted—Medtronic Minimed MiniLink is Active!

2007-04-11T15:35:00.000-05:00

Well, I have to say I was pretty nervous inserting the Medtronic Minimed Real-Time Sensor. The one I used in the Navigator trial was hidden inside a inserter and I couldn’t see the needle. I did know that the sensor was only 5 mm under my skin. But this sensor seems huge by comparison. The needle is fat (relatively) and the sensor is a needle, not a soft canula. Scared yet?

Insertion did NOT hurt. The Sen-serter was quiet and easy to use, but pulling the introducer needle out was a trick. I had a hard time; I was afraid to pull to hard or the whole thing might pop off. It bled more than I thought it would but stopped quickly.

After two hours I got the alert with a vibration and beep to “BG Meter Now.” I took my blood sugar, which was surprisingly at 240. I was 100 at breakfast, so I was worried it wouldn’t calibrate. I sat and waited for my Blood Sugar to show up on the pump, it took at least five minutes to pop up. It was awkward after the calibration though. It didn’t “say” anything after my blood sugar was entered and without the reading showing up right away, I was afraid I screwed up. I didn’t and I guess it is just getting used to a new device.

So far it is comfortable and reading steadily. One thing that surprised me is that when you use the Bolus Wizard, your blood sugar doesn’t automatically pop up; you have to enter it manually, which seems kind of silly. I guess they want me to check my blood sugar manually before taking any kind of action.

I keep my pump in the side of my underwear, under my clothes (obviously). I had my pump on my left side and at one point, while waiting for anumber to show up, I lost the signal from the transmitter. I think that is werid. Two feet away under some jeans and the signal couldn’t get through? The navigator read while I was down and it was upstairs inside the dirty clothes basket.

I moved the pump over to the right side and it seems to be ok.

I have been running high all afternoon. I just did a serious Bolus and it appears to be coming down now, but too weird.

More later.

Happy Easter!

2007-04-08T22:27:00.000-05:00

Minimed Minilink and 722 Pump is Here!

2007-04-06T18:57:00.000-05:00

Well, my Medtronic Minimed Pathway upgrade arrived today as well as the Minilink REAL-Time Transmitter. I am SO excited, except they said I really need to be trained before I hook this thing up. I am scheduled for training on April 23; that is a REALLY long time from now, so I called to see if I could move it up. No response back yet.

I read the directions last night and I am pretty sure I can figure this thing out fine. I do have one small issue before I move forward. I was using the clear version of the 712 and I said, "Hey, let's try something new!" So, I ordered the "smoke" colored pump and now that I’ve seen it, I really, really dislike it. It looks so medical and pager like. I called right away and they are going to overnight me a clear one on Monday. You know, if I am going to look at this thing 30,000 times for the next four years, I have to like it. So, it is worth the wait for me. Fashion first!

Some thing I’d like to note Comparing the Real-time and the Freestyle Navigator:

Alarms: Navigator gave warning alarms for impending lows or highs, the Real-time only warns WHEN you hit a self-prescribed low or high. So, I may set my warnings closer to normal, so I can use the trend arrows to determine if I am headed Far North or South.

Navigator was more complicated to snooze, and had no variation in times for snoozing. This was especially irritating with high blood sugars. The Real-time has a default one hour snooze on high blood sugars and a 20 minute snooze on lows, which can also be customized to meet your needs. I love that.

Arrows: Navigator had northeast and southeast arrows, Real-time has a single arrow north or single arrow south, which I guess says the same thing. We’ll see when I get it on.

Transmitter: Real-time Minilink ~ Rockin’ Roll small! Rechargeable battery that lasts 14 days or more! It feels nice; like a smooth river rock or shell. Interesting how shape and feel can influence your feeling about something. It doesn’t feel medical; it almost feels like an accessory. Someone in marketing was thinking on this one and I, as a marketing guru, appreciate this. Navigator was large in comparison and very device-like. I am certain they will make this smaller and hopefully sexier.

Sensor: Can say too much because I am only looking at it, but the Navigator had disposable inserters and you didn’t see what was being plunged into you. The end result was a tiny; an itty bitty (VERY itty bitty) tube attached to a micro-chip going 5 mm under the skin. The Minimed Real-time is pretty cool looking with clear plastic and it is small on the surface, but the needle looks really long and think. The tube looks really long, but is inserted at a 45 degree angle. I like the reusable inserter, isn’t particularly loud, but we’ll see more when in use. I definitely like less waste associate with this system.

Reporting: Navigator had a wide variety of on-board reporting; 2, 4, 12 and 24 (I think this combo) hour line graphs and statistics (which I found useless). It appears, although I haven’t delved further, that you have instant access to a 3 hour and a 24 hour line graph on the pump for the Real-time. I thought a lot about this and it makes sense to me. This allows you to see immediate trends post meal, post high or low, etc. I was hoping to see a 12 hour, but really, I think the 24 hour will be fine, again, for spotting trends over the course of days.

Software: It appears there is a web-based program when you can upload your real-time info. I haven’t explored this further, but I have to say that I really liked the Navigator Co-pilot software’s visual and data based reporting systems. It also appears that the Real-time has similar data and charts available, but there were some nuances in the Co-Pilot that I really liked, so I am anxious to compare.

Look, if you are wearing a pump already I think this thing is amazing. Not having to carry two units around is a blessing for me fashion wise and also the pump is attached to me, which means I won’t loose it. If you are on MDI, the Navigator will rock your world when it comes out. Although I know Minimed has a separate CGM as well, I can’t say anything about it because I have never looked at it.

It is 40 degrees and raining in Austin this morning and this is coming off of multiple days hitting almost 90 degrees. Hope the Easter bunny can hide his eggs in the backyard tomorrow! Oh! I asked my husband for help with Easter bunny items this year and he bought lots of empty eggs and got a roll Sacagawea dollars and half-dollar coins instead of so much candy for our little T1 girl. He also hit the dollar store for silly little things, but we are mixing this with chocolate eggs and gum (couldn’t find sugar free gum eggs, too bad—8 carbs each). We quit buying sugar free chocolates etc, because they give you a stomach ache and are only a few carbs less than real chocolate. Any other creative ideas around this holiday are appreciated.

Have a lovely holiday weekend!

Photo by Ian Britton--(c) www.freefoto.com

Renewal Group for Moms Living with Type One Fills Up Quick!

2007-04-03T08:48:00.000-05:00

I just began registering moms for the Personal Renewal Group (PRG) for Mothers I will be hosting and it is almost full! PRG is a 5-year old group coaching program created to help moms find balance from the inside out. My group will support mothers living with type one (T1) diabetes who want to reconnect with who they are and live fearlessly with diabetes. The group is based upon the book The Mother’s Guide to Self-Renewal: How to Reclaim, Rejuvenate and Re-Balance Your Life by Renee Trudeau (www.ReneeTrudeau.com). I just got home from an amazing training workshop for PRG Facilitators hosted by the book’s author; she is a wise woman.

The PRG for moms living with type one will meet once a month for six months and utilize the month-by-month themes and exercises in the book. Need a little support for your own self-care, check out a sample chapter titled, “Managing Your Energy: Setting Priorities, Saying NO and Asking for Help.” Good stuff in there; one of my favorite chapters. Also, I wrote a vignette at the back of that chapter (15 minutes of fame)!

Topics covered in the groups include:
· The Transformative Power of Self Care (on a physical, mental and emotional level)
· Good is Good Enough: A Mother’s Mantra
· Creating Your Personal Support System (much need for moms with kiddo's with type one)
· Life Balance: Insights and Strategies for Balanced Living with T1 Diabetes

Well, I am still waiting on my Minimed Real-Time Transmitter and pump upgrade. I really don’t like ordering something so important with a fill in the blank order form on the Internet. At least when you talk with someone, you know they got the order and there is a person accountable for processing it. Have made calls, but can’t quite figure out where we are in the process. I know my Dr. sent the script and paperwork.

I asked the doctor to note my hypoglycemia unawareness on the prescription, as this is my main reason for getting the pump. I am going to file a claim with insurance after I have the thing in my hands.

Minimed Minilink--My Order is in!

2007-03-27T22:35:00.000-05:00

I did it! Today I put in my order for the Medtronic Minimed Minilink REAL-Time Transmitter and upgraded my 712 to 722. I have to say, in the blog that got erased by a blogger error; I discussed my hesitance to buy this thing. I could have ordered it a week ago, but I didn’t. I really can’t explain what was happening in my head, but I suspect I wasn’t sure I deserve to have it (really, that is not a self-loathing statement, it is just a fact, everyone and everything can seem to be a higher priority than me-- I am working on this).

I was put off ordering for three days because I couldn’t order with a live person on the phone; it had to be an internet order. I think that is stupid. I am spending $2,000 up front and I can’t talk to a human about my purchase? BUT today a woman at Medtronic answered my call and she was delightful. She helped me figure out a BUNCH of stuff regarding my account and she got me to a person who could tell me how to do the order online and gave me some tips for moving the process through the doctors, etc. Customer service is important to me, especially with an investment like this.

So, I have to be honest. I haven’t researched this thing as extensively as one would think. I am buying a lot on faith and really good marketing. Seriously, the transmitter is tiny, the claims are good and I get to stay with a company I have been relatively happy with. Haven’t heard many negative comments, except from other manufacturers, but since it only lasts for one year, I figure if it doesn't live up to expectations, I can trade up for a new technology in a year. Perhaps the Johnson & Johnson Animas CGM/Pump, which is in trial right now, will be the next superstar.

I had a REALLY bad morning with my daughter. She was high all night; started high, gave an adjustment, came down a little at 2 a.m., so I thought she was ok. High again at 7 a.m. It was time to change the ((((((DREADED INFUSION SET)))))))!!

My kid is the sweetest, most loving child, but this morning I wanted to toss her out the window. She screams, squirms, wiggles, cries, sniffles, goes to the potty, sobs and hides under the coffee table when it is time to change her infusion set. The drama is all surrounding anticipation, she hate the sound of the inserter click and has very little to do with the actual experience. It took 45 minutes to get the thing on her and then I got a call from school that she was high post-breakfast. I was confident we had a good site, so I had her correct again, even though the pump said 0.0. She was great the rest of the day. You know, I kept my cool for 42 minutes; loving, caring, compassionate, but the last three minutes were where the window became a serious option for resolution. If anyone has really good advice for dealing with a 6 year-old and changing infusion sets peacefully, without threats of “no TV every again!” and emotional breakdowns, I would love to hear!

Photo from www.minimed.com (and I only wish that was my belly!)

I wrote a brilliant blog...

2007-03-24T08:18:00.000-05:00

But blogger had an error that erased it. No going back, just POOF! Brilliant prose, words that came forth like a pure gift, gone in milliseconds.

Learned a lesson--write in Word first!

Today's My Birthday!

2007-03-19T23:14:00.000-05:00

I am the luckiest person in the world. I have a great kid and a super sweet husband who loves me dearly. The weather in Austin is spectacular; the day started with a little rain and it smelled delicious. It ended crisp blue sky's, puffy clouds, then a spectacular sunset--all for me on my birthday!

I Made Dinner Joyfully

2007-03-15T21:08:00.002-05:00

What the heck am I talking about? I say often that I hate cooking, but it isn't true. I just have an unappreciative audience. At six my lovely child has decided she hates everything to eat. Not just somethings, but when I ask, "Do you want pancakes or french toast for breakfast?" She simply says, "No." "Do you want cereal then. or a banana?" "No," again. The list goes on and on and I am pretty sure this is her attempt to control the entire household since food/cooking is my Achilles heel.

Therefore, I have taken my life in my hands and begun cooking things I like. I plop it right in front of her ungrateful six year-old person and watch her eyes role into the back of her head. She grunts and sags her shoulders, even if the main course is Mac & Cheese. I go back int he kitchen to fix my plate and as I turn on my heel I say, "eat one bite of everything on the plate." She moans, she gripes and even slides out of her chair with tears in her eyes on to the flow. "I've tried it before and I'm allergic!" she claims.

"Oh! Well, This is what you are having." I know most grown ups have done this for years, you know, call the shots, but ever since Ruby was diagnosed with diabetes at age three (almost four) I have placated, catered and bent over backwards around food.

I remember sitting with the dietitian in the hospital talking about her diet feeling SO guilty for giving her so many Cheese Puffs--the natural, organic kind, but nonetheless, Cheese Puffs. In her third year of life, she potentially consumed 1/3 of the national average worth of cheese related products. I'm not sure she ate anything without cheese: Cottage, string, cream, mac &, cheddar cubes, grilled, puffs. But I pined over the frequency of Amy's Organic Mac & Cheese she ate.

The dietitian looked at us funny and said, do you have any idea what most Americans feed their kids?

We never let her have candy, only maybe at Halloween and at birthday parties, but after DX I didn't want her to be different from the rest of the kids, so candy and cake were now OK, after all I knew the carbs.

Anyway, parenting is a funny thing and you have to catch yourself accommodating.

A1C Results Are In--10 Percent Decrease!!

2007-03-14T13:43:00.000-05:00

Howdy Folks!

I just got my A1C results and I saw a nearly 10 percent decrease in my A1C since the beginning of the Freestyle Navigator Continuous Glucose Monitor Trial. When I started I was at a shocking 8.3 and my results were 7.5 after three months. As I have mentioned, it took me a good while to get the swing of how tightly I could control my diabetes with the flood of continuous readings. I also discovered how drastically my hormones affected my blood sugars at minimum of seven days PMS. I ran around 200 for well over a week each month of the trial only to get my alternate basal pattern adjusted to hopefully a good range for next month. So I can only imagine how nicely it would have come down if I had the CGM for another few months.

I've been talking with my Minimed Rep and I really want the Minilink. It appears you can wear the sensor for as long as 15 days (although 7 is recommended), but that changes the affordability factor considerably. Initial investment will be $399 to upgrade my 712 to the 722 pump, then $1,000 for the transmitter, which includes 10 sensors. I am going to work to get insurance to cover this thing and use my own statistics to show its benefit. I am sure they have lots of stats from their own study to show impact on blood sugars and A1C results too.

I have to say, it has been really hard to get motivated to take my blood sugars regularly. My motivation over last weekend was largely fueled by my enthusiasm at the end of the study, but before this study I was not looking after myself like I should(duh, 8.3 my highest A1C reading in 10 years or more). It is so easy for me to turn my attention to my child's diabetes and I almost feel justified in neglecting my own health. It isn't a sadistic thing, I am a mom and we tend to look after everyone before ourselves anyway; with a child with type one it is especially strong draw to forget about yourself.

Anyway, my blood sugars have been really tight when I check, but I trend toward low and don't have a lot of awareness. So, I'll keep drawing blood until I can afford to jump into the CGM with Minimed.

Makin' a Baby; Oh Yeah! I Have Diabetes--Part I

2007-03-13T23:08:00.000-05:00

So, my husband and I said one day in November 1999, “Let’s do it!” Literally. We had thought about having a baby for years and it was so easy to say, “We are going to start trying in a couple of years.” I had a great job that kept me busy, we loved our life. There was plenty of reasons to keep the future at bay.

Well, I was telling a friend and work colleague at lunch one day that we were thinking about trying to get pregnant in about six months. I included a litany of reasons and justification for the wait, as I always did. She had to work to catch my darting, justifying eyes and when she did she said, “Why don’t you just do it?”

I just looked at her for what felt like 20 minutes. “Do what?” I said. She looked at me and said, “Why don’t you just get pregnant?” My mind began to race with 10,000 reasons, excuses, and useless thoughts about why that wasn’t possible, now, but they quickly subsided. I was just given permission to procreate. No doctors warning me the diabetes makes it too hard, no mother worrying about me, just a quiet warmth in my chest; the kind You get when you know the answer is right in front of you and I said, “Hmmm. OK!”

I went home that evening from work, buoyant and bubbling inside. “Let’s do it!” I said jumping to give Marshall a hug. He was thrilled for more reasons than one. Somewhere between having a lot of fun and actual conception, Marshall and I talked a lot. He was worried. He was worried about me and my diabetes first and he had a nagging worry, “What if our baby gets diabetes?” I would respond lovingly and reassuringly, “What are the chances, baby?” I would then follow with statistics provided by the doctors; if Marshall had diabetes, we would only have a 25 percent chance of having a child with diabetes. He didn’t have diabetes, so our odds were seven to nine percent. Don’t you love statistics?

I got pregnant in one month, which was a TOTAL shocker. My mother spent a year trying to conceive my sister and me. I totally freaked out. After doing some math on a plane home from San Francisco where we were celebrating the Y2K New Year, I realized why I felt so bad. I felt kind of sick most of the trip and luckily, this kept me from overindulging during the New Year celebration.

We landed in Austin at 11:30 p.m. and I had to pee. I held it. I held it waiting for the luggage, waiting for the cab, waiting on the ride home (which was really fast with this particular cab driver). I ran in the house and found my pregnancy test and finally peed—THANK GOD! As I sat there with my purse still on my arm, my pants around my ankles and the cat meowing hello to me, two pink lines appeared. OH MY GOD. Oh my God, oh my God! What are we going to do? I AM PREGNANT.

I ran out to Marshall who was on the couch waiting for me. We were thrilled and in shock that what we did about 15 days ago would so drastically impact the next 20 (to 50) years of our lives.

What this meant in terms of my diabetes was total fear and paranoia for the first 20 days. I was terrified. I took my blood sugar every 20 minutes and it fluctuated wildly. For every reading outside of normal I felt like I was damaging my baby—I was a mess.

The first 20 days of my pregnancy were filled with guilt as well. Why did I do this and not get my blood sugars in perfect control first? What am I going to do to this baby with my blood sugar hitting 300? Then my friend, the one who said, “Why don’t you just do it,” told me to chill the hell out. She reassured that if I would just stop freaking out that everything would be fine. I was given permission to relax, like I forgot that was an option. "Of course, just chill out! I know how to do this diabetes thing. I can take care of myself and Marshall will help me." A huge weight was lifted off my shoulders and sure enough, in the days that followed my blood sugars stabilized. It was almost as easy as that.

Minimed Minilink Available Monday, March 12, 2007

2007-03-10T12:37:00.000-06:00

New Minimed Minilink will be available Monday, March 12, 2007

I am so excited about this. I am only 24 hours sans the Freestyle Navigator CGM and desperate to *know* what my blood sugar is. For the first time in history, I am checking my sugars religiously and logging it into the CoPilot program I still have downloaded on my computer. I had to return the CDs and the bluetooth device, but I can manually input my food, insulin, exercise and blood sugar readings and still benefit from the excellent visuals this program gives me.

Photos from Drea: http://drea-girlonthego.blogspot.com/2007/03/minimeds-new-minilink-transmitter.html

Adios Freestyle Navigator--May be Avail. Dec. 2007!

2007-03-09T15:45:00.000-06:00

I went to return MY Navigator today. I shed a single tear as I ripped the adhesive from my arm, pulling off my last sensor. They downloaded my info and I filled out a very long survey similar to the last one with questions about the trade-off of having a smaller sensor (See my post on January 14, 2007). There wasn’t a comment page, so I said if you want to know what I really think from the perspective of my daily use go the www.diabetesselfcare.blogspot.com. I did manage to squeeze in some notes into an area of the survey that had room for comments about things that had nothing to do with my actual thoughts.

My Endo came in to look over my readings and was shocked at my last week. I was in the green—that’s normal-- almost all the time. He noticed my sharp drops to almost-low post meal and we changed my bolus ratio slightly, but overall I am kicking booty.

I spent a lot of time with the woman who works for Abbott Diabetes and who is responsible for this trial. I sat down and told her what I thought. First, I told her how impressed I am with the Navigator; that this is the best invention since insulin. I described how it saved me from countless lows and in the very last week of the trial I fully realized the power of constant readings—we made such minute adjustments to my bolus wizard and basal rates that I am in really good shape for a while. BUT without checking in with my CDE or Endo on a regular basis, I could not have realized what this information means for my control. I also told her about the issues that I felt needed addressing (also see Jan 11 post).

So what else can I tell you? OH! I think the Navigator may be out before Christmas! She wasn’t specific, other than to say it is probably coming out this year.

I went to the doctor and the doctor said...

2007-03-07T09:05:00.000-06:00

...I have a bunch of changes to make. This is my last week with the Navigator and I am beginning to get pretty bummed about that. Yesterday I met with my diabetes educator, who hung the moon, and we looked at my blood sugars from the CGM on the CoPilot software. She'd look at day after day of readings and say, "See here, you are dipping a little at 5:00 a.m. and you seem to be rising after lunch each day."

There is NO WAY she could have ever seen those changes without the CGM. We made a new pattern for my week (or two) of hormonal changes after I ovulate (TMI for you guys, but I bet you have hormone fluctuations, too) and we made many adjustments to my basal rates and also to my sensitivity.

I also learned that my older version of the Minimed pump (712) does not have a way to change the duration of the insulin board based upon what kind of insulin you use. It is automatically set to assume that it is hanging in there for eight hours after a bolus, whihc really messes with correwctions post meal. I have seen with the CGM that two hours post meal (where I had a correction with my meal) it says 216. I try to do a correction, but it says 0.0, assuming I have insulin on board that will cover the high. I check again at four hours, still high and says no correction, BUT, the insulin is long gone. SO, now if I see highs four hours after a meal or correction and my sugar hasn't gone down, I will ignore the 0.0 and do the correction.

I would have ever seen the subtly and nuance of my blood sugars and reaction to food without this thing.

Can you hear the woe in my voice? I talk about this CGM like it is a friend who has walked away from me to hang out with the cool kids. Of course, I can just go buy the Minimed version, but I want the smaller sensor; I want second generation technology, not the huge two piece unit. I want one with the kinks worked out. So, I wait and I guess I'm going to have to check my blood sugars more than a couple times a day.

HOWEVER, I have today, Thursday and the morning on Friday to use this tool and work out the kinks of the changes we made. Pretty drastic changes and I am excited to see if they fix my low-highs (low 200s).

Headed to a press conference at 11:00 a.m. at the Texas State Capitol where a very positive stem ell research bill that supports research for degenerative diseases and conditions (that means diabetes) will be announced.

I have to give it back...

2007-02-28T22:02:00.000-06:00

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

2007-02-27T19:45:00.000-06:00

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

2007-02-26T21:30:00.000-06:00

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

2007-02-25T13:40:00.000-06:00

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...

2007-02-23T20:01:00.000-06:00

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

2007-02-20T21:41:00.000-06:00

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

2007-02-10T17:25:00.000-06:00

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.

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

2007-02-09T17:21:00.000-06:00

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

2007-01-27T10:52:00.000-06:00

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

2007-01-22T22:03:00.000-06:00

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.

CGM: Back to Normal

2007-01-15T17:14:00.000-06:00

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

2007-01-14T01:41:00.000-06:00

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)

2007-01-12T23:21:00.000-06:00

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.

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

2007-01-11T22:55:00.000-06:00

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

2007-01-07T17:10:00.000-06:00

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 ????

2007-01-06T21:13:00.000-06:00

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

2006-12-23T10:24:00.000-06:00

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

2006-12-19T22:18:00.000-06:00

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

2006-12-18T21:59:00.000-06:00

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

2006-12-17T14:07:00.000-06:00

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

2006-12-14T18:37:00.000-06:00

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

2006-12-14T10:29:00.000-06:00

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.