Diabetes: An Emotional Journey

Boy does that title apply to my life! Diabetes is a never ending journey filled with joy, pain, accomplishment, sadness, determination, resentment, acceptance... maybe even peace, eventually. If you've never read the book, I recommend it. It's a collection of poetry and journals from the first year after diagnosis, by a mother of a little girl with diabetes. When I first read it, soon after Emma's diagnosis, I felt like this mom took the words right out of my mouth, and the feelings right out of my heart. Since I'm not really the poetic type... I will be sharing a few excerpts on my blog. I hope she doesn't mind.

I do not have diabetes living in my body...

I do not experience the physical effects of tumultuous blood sugars.

I do not face the endless finger pokes, site changes and doctors visits.

I do have diabetes living in my head...

I do feel the anguish as I watch my daughter bounce from low to high.

I do deliver the endless finger pokes and site changes and doctors visits.

I live diabetes...

While my daughter with diabetes just lives.

She knows no other way of life.

I did.

I do.

I always will.



Renee Jo Zosel

.....................

I used this at the beginning of our (very sappy) walk video a couple of years ago. It was just too perfect to resist. You can see our video here. It's obviously time to reconnect with the JDRF in our new city and get started on a new campaign! This time Emma will have a lot of input, as she has a lot to say about D these days and asks me about a cure every single day.

Reveling in the new Revel insulin pump~ and a look back at CGMS technology

We are one week into our latest pump upgrade from Minimed and I could not be happier! Over the years I have always chosen to keep Emma on a Minimed pump for one very simple reason... integrated CGMS technology. I have nothing against other pumps, they are fabulous too and they have a lot of great features, just not this one.

A little look back:

You could say we were pioneers in the world of CGMS. We are definitely early adopters in D technology, mostly out of desperation. Managing our little princesses D has always been an enormous challenge because of her age and other health problems, so when something comes along that might help we are the first to try it! I knew that using a CGMS would be life changing for me and miss Emma. I also knew that having a small child with one device strapped to her tiny body was more than enough... two devices was out of the question if it could be avoided. Been there, done that, did not enjoy it.

Our first CGMS set-up looked like this...

That black box hooked onto her pump pouch was the receiver. The black disk on her tummy was the transmitter that connected to the actual sensor via the gray cord. Fabulous right? Ugh! It was an awful set up with many limitations (and a lot of adhesive problems) but the data was useful (a number on the screen every five minutes) and we knew we were onto something that could be great.

For the first time since her diagnosis we had some idea of what was happening in her body without taking blood. It was like being able to see clearly for the first time!

It wasn't long before that same sensor could transmit data to her insulin pump. It made everything so much easier! One little tiny pump, one pump pouch and much better data. This was the first time sensor data could be viewed in graph form with rate of change arrows and alarms. We finally had some warnings about highs and lows and they saved her from serious trouble on many, many occasions. We were  in love!

I could now peak in on my baby girl as she slept and SEE if she was OK without poking a needle into her every few hours. This was beautiful, life changing technology!

The next big step was making that transmitter smaller and much easier to wear. When we upgraded from this;

To this;

We were over the moon!

Emma has been wearing a CGM 24/7 for over three years now and while we have found it to be an amazing and invaluable tool, we have been anxiously awaiting better features. While Minimed was focusing on CGMS technology, other pumps were getting more child friendly, with smaller dosing and better remotes. And other CGM's were getting better alarm options and more user friendly settings. Cool stuff I wanted too. After all I do love my D gadgets! I hoped that by the time our pump was out of warranty there would be a variety of CGMS integrated options on the market.... but when year four with our MM rolled around... it was still the only one. (This baffles me, BTW)

So when MM released their latest insulin pump I was all in. The new features are fabulous and have already made a huge difference for us!

The components;

A sneak peek at the Revel's CGMS updates:

The new Revel pump brings a host of new CGMS features that are the most versatile and useful that I have ever seen.

There are new very customizable predictive alarms that can be set to alert you to an impending low or high 15-30 minutes before the event happens. I got a "low predicted in 15 minutes" alarm this week when the sensor was still showing a 180 (with double down arrows) glucose reading. This feature is amazingly helpful with rapid blood sugar changes that would normally be too fast for a sensor to catch.

It's easier than ever to adjust the alarm settings for both high and low (one at a time or both at once). You can also pre-set 8 different alarm thresholds for various times of the day.   

There are now little tones that alert you to rapidly falling or rising glucose levels, before an alarm is even triggered. It's a little FYI that, "hey things are unstable and you may want to take note." These are also completely adjustable to suit your needs and can be turned off if desired.

One of my favorite CGMS features.... "Alarm Silence" OMG, I LOVE this! I can tell the pump to "shut up" for a set amount of time, something I've often wanted to do! It still records and displays the alarms on the screen, but will not trigger an audible alarm until the Silence time runs out. You can set this in increments from 30 minutes up to 24 hours. This feature has already bought me countless hours of sleep and if you read my previous post you know how valuable that is!

Here's an example of "silence" fabulosity:
Let's say it's midnight and your pumper is sick and running high. You know they are running high, you have already tested many times, checked ketones, changed a site, given an injection and done everything you can do for the time being. You are ready to get some much needed sleep, but your last high alarm was an hour ago, meaning it will alarm again within the hour. Boo! Do you wait up? Do you turn it off and set your own alarm, or just hope things will be ok until morning? Do you try to sleep for 45 minutes until the darn thing beeps again? hmmmmm.....
Well, now you can tell the pump to keep that impending high alarm to itself! You can sleep for a few hours (you decide how many) alarm free. You get to stay in your bed having sweet, sweet dreams. Ahhhhh!

This scenario can, of course, be applied for lows that have been adequately treated, but may still trigger endless alarms. Or anytime you'd rather not hear an alarm for a set amount of time. All the data is still there for your viewing pleasure, you just don't have to hear it!! Fabulous!

Calibrating the sensor is now easier than ever. You can use your "link" meter all the time (so every reading is saved in your pump) and the pump will ask if you'd like to calibrate or not. It will also alert you if your reading is outside of your target range and automatically directs you to the bolus wizard if you're high. How sweet!

There are more graphs, (3,6,12 & 24 hrs) louder alarms and many more options, but these are my favorites.

The insulin pump changes:

The insulin pump also has some cool changes. The menu has been overhauled with changes you can see here.

There are now .025 basal and bolus increments, something that I haven't ever felt like we had to have, even for a tiny pumper, but something I've been very curious to try out since so many parents choose other pumps for this very reason. So far our glucose results are about the same, but maybe with more fine tuning we will see an impact on numbers. It's certainly nice to have the option.

The bolus wizard has many more options like different insulin sensitivity by the hour, 8 different bg target settings throughout the day, missed meal bolus alarms etc.

You can save "Events" in your pumps data with a few button pushes so your log book info is much more complete. Things like Blood glucose readings you want to save (if you're not using the link meter), Exercise, Insulin injections (with amount), Carbs that didn't require insulin (like juice for lows).

Carelink software still offers a variety of great reports and with these Events logged into the pump the data you get will be better than ever. If you've never seen carelink software you can check it out here. It is possibly the greatest tool for making insulin adjustments, and your doctor and can access it all on line too... (if you want him/her too.) 

So this new pump is indeed and upgrade and is another step closer to that "artificial pancreas" we hope to have someday. I'm sure I will be reveling in even more of its new features in the coming weeks and even more thankful for evolving D technology. If we can't have a cure (yet) at least we can have life changing gadgets to keep our precious little pumpers healthy and happy.

Happy pumping!

Sleep deprivation...

...most people have experienced it at one time or another. New moms usually get a good dose of sleep deprivation. It definitely happened with Emma. A late night delivery, followed by two sleepless days in the hospital, followed by several weeks of around the clock crying and feedings. I thought I would never come out of that new mommy fog. I was exhausted and cranky and desperate for a night of uninterrupted sleep. It was hard... or at least it seemed hard at the time, but it was also rewarding and filled with precious new baby moments and endless understanding from everyone around. "Well, of course you're tired, you have a newborn!" Everyone gets that...

I have to tell you that the thick fog of sleep deprivation I have experienced in the past 4 years, 10 months makes being a new mom look like a vacation! A vacation with a foreseeable return to normalcy. A return I would give almost anything for... but that's another story.
The fact is, I have slept through the night fewer than five times since Emma was 9 months-old... and she didn't sleep much back then either. There are good nights; nights where I stay up semi late to test, then wake up once or twice during the night to test, then get up early to test and maybe even crawl back in bed for an hour. That is a schedule that I can deal with and still feel like a functional human being.
Sadly there are just as many bad nights. Nights where I stay up super late to calibrate a sensor only to find her bg too high or low, then wait up to silence the coming alarms and treat and retest and treat again. There are worse nights that require a late night site change, injection, ketone tests followed by more alarms and more tests and even less sleep. Nights that I literally crawl out of my bed 8-10 times during the few hours that I manage to crawl into it in the first place.

I also have another sensor wearing D right next to me in my bed. This means that on top of my little D's alarms and tests I also wake up to my husband's. He feels bad about keeping me up, (he doesn't usually hear the alarms so I have to wake him up), and has offered to stop wearing his cgms, but I feel worse about him going low in the night or staying high and risking complications. We can not afford to have his long term health compromised for uninterrupted sleep. It's simply not worth it, right?

The problem with missing out on so much sleep is that it compounds every other aspect of living with diabetes. The fog makes you more emotional and less able to deal with stress. It makes you cranky, depressed, irrational, less active, less motivated to eat well, less motivated to take care of yourself... It makes the daily balancing act of a "normal" life with diabetes totally out of balance, and since D HAS to be dealt with other things start to fall. Things like housework, exercise, fun, even relationships... It affects everything. And while a new mom is expected to be foggy, frazzled and falling asleep mid-day in her sweat pants, a D mom is expected to somehow adjust to the fog and go on with life. This is the new normal afterall, and there's no going back. It is something no one really understands unless they have lived it, and not just for a few weeks... I mean LIVED it. Long term sleep deprivation is unbelievably hard and in my opinion, one of the biggest challenges D parents face.

So, while I sit here with my third cup of coffee in hand and try to motivate myself to be productive today, I want all of you night testing, sleep deprived D parents out there to know that I get it. I dont know how to fix it... but I do know that if you were up all night managing your child's D while they slept peacefully you deserve to be napping in your sweat pants this afternoon, (whether you do it or not). Sleep well... when you can...