Ever noticed the type 1 diabetes phenomenon of having things go wrong right when you are at your weakest?
It's like it waits to pounce just as it notices your tired. Or sick. Or beyond frustrated.
Last night was a little bit like that.
Sensor Fail error.
Followed by a new sensor insertion and waiting two hours.
Sensor Fail error, again.
Followed by a new sensor insertion that went incredibly wrong, causing the wire to dislodge and the plastic long arm component to be stuck in the inserter. At 2:00 a.m..
Yes, 2:00 a.m..
Poor choice on my part but wanting to make sure that a certain birthday girl could celebrate as carefree as possible with a working CGM.
As I drink my morning survival coffee, I reflect.
More than a Sensor Fail error.
A Mom Fail error.
Wednesday, July 30, 2014
Monday, July 28, 2014
Not Quite A Week But We Have Learned A Lot
The Medtronic 530G has been on my oldest daughter since Thursday night.
Today is Monday.
While that might not make us full experts yet, we certainly have learned a few things. Because I like to write about things that are generally not discussed in most hoity-toity scientific research magazines, here are a few fun family observations.
1.) Bolusing is slow. Did I say slow? I mean a snail doing the moonwalk S.L.O.W. However, in the weirdest of ways, I actually think postprandial blood sugars are better. Total weirdness.
2.) The pump is pretty. As I was taking the battery out of her old Animas Ping to store away indefinitely, I noticed the scarred, scratched and paint-chipped exterior. Wincing in a way that only a mom does when seeing how your child has used something to pieces - literally - I also suddenly realized that the new Medtronic 530G will never be in this condition. Simply for the coolest of reasons: it is plastic. Kind of like an old 1962 Chevy compared to it's latest cousin, the 2014 Chevy. Hey, I live in Michigan and we no longer see rust. How is that for progress?!
3.) The Mio infusion site is teeny. As a former user of the Comfort Short and the Inset 30, the tape and site is about 50% smaller. We all know that body real estate is a precious commodity, so it is nice to use less.
4.) The alarms for the CGM are soothing. I think they sound like bells. My daughter who tends to be annoyed by all pump music, has begrudgingly agreed. Of course, this is because we are in the pump honey-moon period.
5.) Turning the Medtronic pump on in the dark is something to get used to. The first and second night were spent with a few fumbles on clicking the correct combination of buttons to make the light appear. I missed our Animas during those early nights. Last night was much better. Practice does make perfect.
6.) The sensor is comparable to the Dexcom, but not as accurate. Our direction was to calibrate four times daily, however, we seem to be finding better success with less calibrations. Much as the same with the Dexcom. The less information we provide, the more the sensor can catch up and reflect what is happening.
7.) Our daughter loves having one gadget. On the first full day after hook-up, she played in a golf tournament. After she was done with her first section, she ran over to me with a panicked expression telling me that she forgot her Dex receiver. As she said it, she realized what she was saying and started to laugh with relief. No more losing gear. And yes, she hit the ball really well after that.
8.) Our youngest daughter is jealous of her sister's new pump. Yes, even insulin pumps make kids envious.
9.) Three hundred unit cartridges are awesome! For the first time, we no longer feared running out of insulin on a trip away from home. Thank you to Medtronic for providing this option!
10.) With two pumping two different insulin pump brands, I found myself having to think a bit more carefully about the supplies that we bring along. Even as I type this, I am thinking that I really need to add an extra infusion site for Medtronic to our emergency vehicle bag. Mom will have to be even more organized! Yikes!
And that is all for now. I will try to update in a few more days with more observations.
Friday, July 25, 2014
Medtronic 530G - A Passenger's Perspective
Her pump arrived this afternoon.
Actually, the Naturally Sweet Husband went to our UPS distribution center and tracked it down. It was relinquished after proof of a government ID. UPS doesn't know that the name it was addressed to is in fact, a minor without a valid driver's license... yet.
Yet.
Which is an interesting segway into this new pump start. As the box was handed to her (not to me), she excitedly opened it and pulled out the new pump, meter and sensor parts. This was her 'baby' now and she owned it right from the start.
As she quickly attached the belt clip, (much to my worried husband's chagrin - "Stop! Be careful! Are you sure you are supposed to attach that? Wait for your mother."), she simply smiled and said calmly, "I got this, Dad. I know what I am doing."
And she did. Confident, poised and ready to immediately hook up to her newest device.
I sat next to her and she entered in bolus and basal rates. I told her that I would call her friend's mom and ask questions that we stumbled across. She simply smiled and repeated, "It's OK mom. I think we are doing fine."
She picked up her new Mio infusion set, which was completely foreign to me, but seemingly familiar to her. As she unwrapped it and prepared her first leg site, she chatted on about diabetes camp and seeing her friends inject the same one. Youngest daughter stepped into the room and at ease as well, said, "This is the one that A LOT of kids use. We know how to do this already."
Even after she launched the site and struggled for a moment to free the plastic case from her leg, she remained calm and collected. Bravely, she told me that she was thrilled to find that while it was a struggle to get it unhooked, she felt it hurt less and it was in fact, "Cuter. Look at how tiny it is, Mom."
I called her friend's mom anyway and while the conversation started under the terms of question asking, soon it became about general life and before I knew it, almost an hour had passed. As I hung up the phone, I called oldest daughter over and suggested we try a practice bolus. She laughed and explained that while I was on the phone, she already had done just that. All had gone well - without my 'help'.
Proud is an understatement. She turns 13 in a few days. Watching her blossom from that scared little girl, unable to communicate her first low blood sugar, to the strong, independent and brave young lady that defies type 1 diabetes boundaries.
This pump is a milestone marker on her journey to adulthood and t1d ownership. She researched this, she chose it and she will wear it proudly.
Oldest daughter is on her way to achieving wonderful things. The next pump will come during her last year of high school. I don't know what life will be like then, but I do know that she (and I) are prepared for a great ride - with her at the wheel!
Thursday, July 24, 2014
Back to School In Style
Mid-July is here.
That means that while summer vacation only just started for us in the north, the back-to-school merchandise is already in full display on store shelves.
If you are like me, the sales are too tempting not to take advantage of, especially with Naturally Sweet Sisters that love to shop, even for school supplies.
Not to mention, that waiting also means the high probability that nothing is left in September when school actually begins.
As I shop, I like to look for ways to blend t1d into school. This is the PERFECT time to look for all of the cute and functional holders for holding t1d gear.
In no specific order, here is a list of things that I like to grab when the prices and the selection are good!
1.) Plastic Tubs for Locker, PE Locker, Classroom, Office, Bus:
These handy little tubs can be personalized with a label maker, address label or even a sharpie pen. On this box, I chose a piece of Washi craft tape and wrote on top of it. We put these everywhere our child will be throughout the school. As a gesture of t1d community spirit, I also tell everyone that this is not just for my child but for anyone with t1d needs. One year, a type 2 teacher felt low after a long day of teaching and wrote me an email telling that he had been ever so grateful to have the 'low box' nearby. He replenished the supplies and it made us all feel a bit more united in our efforts to keep everyone safe.
On another note, I tend to add what my child likes and also what can be stored for at least a school year. While we will still pack juice boxes, I find that the expiration dates are only good for a few months. At Christmas vacation time, we often remove and restock the older items. Candy like this could survive an Apocalypse and still be a-ok!
2.) Binder 3-Hole Pouches:
A mom gave me this tip last year. Ironically she had been using this method for years with her non-t1d children but after her youngest was dx, this became her perfect solution on how to keep mobile glucose and supplies on her child at all time.
Simply take all of the items that your child would take to class and place them in a three-ring binder pouch. We found ours for about $0.70 at Walmart. For our middle school kids, we buy seven of the pouches and place them in seven different binders - one for each class - and our children use this as homework binder too.
The best part of this system is there never a chance to be without a pencil, eraser, pen, highlighter, sharpener and especially GLUCOSE!
3.) Magnetic Locker Containers:
If having a plastic tub isn't enough of a reminder for your child, than this is the perfect invention! Locker containers that have a magnet are great for storing easy-to-grab glucose. The saying in our house is that if a child only has four minutes in-between classes but feels low, we would rather treat first - than, check later. With a full year of middle school under our belt, the biggest learning curve we had was our daughter worry of being tardy to class. Even though she has a 504 plan that excuses lateness due to t1d, she felt awkward arriving late in front of her peers. Solving that was having her pop a piece of glucose food into her mouth and then check bg at her desk in the classroom.
As another bonus, these little containers work great for the PE locker in storing vitals like deodorant! The teachers will thank you!
4.) Backpacks:
Yes, most all parents are already going to be buying backpacks. I just wanted to mention something that I find helpful in selecting one. While your child may be looking for a certain character or fashion design, as an adult, I am looking for a special diabetes area.
We love to find backpacks that have a zippered pocket with lots of storage.
Pencil holder bands make great spots for Smarties candy (USA candy) and little pouches work great for fruit snacks and glucose. I also try to stash some money in the packs for emergencies. Over the years, there have been times when it has come in handy. If you buy hot lunch and your account runs out, it is nice for your child to have a little stash of cash.
I also like little zippered carry-alls that I can attach to the backpack. As you can see, we found this little one on Amazon.com and have it clipped to our daughter's golf bag. As you probably guessed, it is filled with glucose. Lows are NOT happening on my watch! Well, as much as I can help, anyway :)
5.) Lunch boxes and water bottles:
This is the perfect time to find water bottles to help keep your child hydrated during the school day. It is also a great time to find lunch boxes. Lunch boxes work not just for carrying lunch, but for also toting t1d testing supplies to and from school. We particularly like ones with extra pockets and also, with a long strap. A bonus pocket to keep water on board is extra nice too.
I hope this was helpful and gave you some insight into what the Naturally Sweet Sisters will be bringing back to school.
And when you are done with your shopping, just pack it all up and forget about it until school starts.
Then, tease your kids about having to write notes about calling mom!
Happy Back-To-School Shopping!!!!
Monday, July 21, 2014
The Waiting Game
June 27th: My daughter's last endo appointment.
July 21st: Insulin pump script sent to order fulfillment to begin processing.
See that white space in between the two dates? That's me calling and checking on the process to see what is holding it up.
And now, I wait some more for the order to submit, insurance to approve and for the pump to be delivered.
Tell me: does this make you feel slightly crazy too?
And how do you make this process better?
I would love to hear your thoughts.
Saturday, July 19, 2014
Kids Choice: Annoying T1D Questions and Their Standard Answers
In discussing this in a recent conversation with my daughters, I decided to write down their 'standard answers' of questions that people ask regarding life with type 1 diabetes.
Remember, this is almost 8 years in as our diaversary will be in December of this year. I don't know if we would have known to say any of this in the first few years. For a lot of questions, we have two answers that we frequently interchange. It all depends on if we are talking to a crazy grocery store cashier or a kindly little old lady. And if you are reading this, we know you understand it. BIG difference. BIG!
Kids Pick The Frequently Asked Questions and Their Favorite Standard Answers:
Q1.) Can you eat that?
A1.) Is it poison? Because I can eat anything that isn't poison.
-or-
Q1.) Can you eat that?
A1.1) I match insulin to carbs. Carbs are in everything from carrots to cookies. As long as I count the carbs and gives myself the insulin, I am free to eat anything I want.
Q2.) What's that? (pointing at an insulin pump or a cgm or a blood sugar meter).
A2.) What? OMG! When did that get there????
-or-
Q2.) What's that? (pointing at an insulin pump or a cgm or a blood sugar meter).
A2.2) I have type 1 diabetes, an autoimmune disease, that requires insulin for life. The way that I get insulin, watch blood sugar, or check blood sugar is by using that gadget. It's pretty great but it's not a cure.
Q3.) So that pump, it does it all right?
A3.) The pump is great but it doesn't have a brain. I still have to program it. Kind of like that old VCR that my mom told me you used to use.
-or-
(And for this one - we don't have a gentler version. Pumps are brainless. Period.)
Q4.) Does it hurt?
A4.) Yes, of course. It's a big needle. Want to try it?
-or-
Q4.) Does it hurt?
A4.4) Yes, of course. I don't think about it because I have no other choice. You would do the same.
Q5.) Will you outgrow it?
A5.) No. We need a cure. And since you asked, if you want to help us get there faster, feel free to donate to our JDRF walk team under Naturally Sweet Sisters HERE.
Ok, so I added the last one... but if you do want to help, please feel free to click on our walk team to make a safe, secure, tax-deductible donation to JDRF. A cure is closer than ever!
Remember, this is almost 8 years in as our diaversary will be in December of this year. I don't know if we would have known to say any of this in the first few years. For a lot of questions, we have two answers that we frequently interchange. It all depends on if we are talking to a crazy grocery store cashier or a kindly little old lady. And if you are reading this, we know you understand it. BIG difference. BIG!
Kids Pick The Frequently Asked Questions and Their Favorite Standard Answers:
Q1.) Can you eat that?
A1.) Is it poison? Because I can eat anything that isn't poison.
-or-
Q1.) Can you eat that?
A1.1) I match insulin to carbs. Carbs are in everything from carrots to cookies. As long as I count the carbs and gives myself the insulin, I am free to eat anything I want.
Q2.) What's that? (pointing at an insulin pump or a cgm or a blood sugar meter).
A2.) What? OMG! When did that get there????
-or-
Q2.) What's that? (pointing at an insulin pump or a cgm or a blood sugar meter).
A2.2) I have type 1 diabetes, an autoimmune disease, that requires insulin for life. The way that I get insulin, watch blood sugar, or check blood sugar is by using that gadget. It's pretty great but it's not a cure.
Q3.) So that pump, it does it all right?
A3.) The pump is great but it doesn't have a brain. I still have to program it. Kind of like that old VCR that my mom told me you used to use.
-or-
(And for this one - we don't have a gentler version. Pumps are brainless. Period.)
Q4.) Does it hurt?
A4.) Yes, of course. It's a big needle. Want to try it?
-or-
Q4.) Does it hurt?
A4.4) Yes, of course. I don't think about it because I have no other choice. You would do the same.
Q5.) Will you outgrow it?
A5.) No. We need a cure. And since you asked, if you want to help us get there faster, feel free to donate to our JDRF walk team under Naturally Sweet Sisters HERE.
Ok, so I added the last one... but if you do want to help, please feel free to click on our walk team to make a safe, secure, tax-deductible donation to JDRF. A cure is closer than ever!
Friday, July 18, 2014
July 24 #JDRF1DAY
@natsweetsisters #jdrf1day |
Did you catch my interesting choice of words? "While they live with t1d."
I write it like that because my hope is that through being completely transparent in our life and showing the world our highs and the lows of t1d, we can help further advocate for the need to help JDRF gain support for research that ultimately results in a cure for t1d.
It would be absolutely wonderful to be able to look back at a world with t1d - because now it simply does not exist.
That's called HOPE.
You can't see it but it exists and it is powerful, my friends. Eight years of HOPE and we are getting closer every day to finding that elusive cure for t1d.
Come join us, share with your friends and family and watch as the HOPE comes alive.
@Natsweetsisters #jdrf1day
Monday, July 14, 2014
Lessons, Lessons, Lessons
This is the summer of doing.
My youngest has the refrain downpat, "More Saving, More Doing, that's the power of MOM". She says this a lot lately as it appears to be a big crowd pleaser among the tweenage set, inciting tons of laughter. Yes, she is a ham. But she is also right.
As of this morning, we now have scheduled lessons for golf, guitar and knitting. These are all of the things that the girls have requested to learn. During the school year, we felt too busy and too stressed but now that summer is here, we have wide-open schedules which promise the leisurely art of learning just for the fun of it.
And while my friends may wonder where I have gone during this summer of doing, I can't help but be mindfully greedy of the chance that I have to witness the girls develop these lifelong talents. In the icky, awful way that parenting with a purpose requires, I have rolled the calendar far enough ahead to know that I have just five more fleeting summers with my favorite two little ladies. In my heart, I want to know that we used them up completely and fully and left not one giggle, one hug or one kiss behind.
In ways that my girls do not fully appreciate yet, I am adding to their memory banks the delicious feeling of learning for the fun of it while spending time with mom.
Yes, more saving, more doing, that's the power of mom.
Wednesday, July 9, 2014
Teens, Menstruation and Type 1 Diabetes
Hopefully my title was nice and clear, because if you do not want to "talk", ie. read, about periods, pads and type 1 diabetes, this is NOT the post for you.
However, if you are like me and am parenting little ladies, whom also happen to be living with type 1 diabetes, than you might want to know more about the effects of menstruation.
A few years ago, it occurred to me that certain changes were happening which also started to wreck havoc on blood sugars. The changes were mostly physical with growth and development, but a few were noticeably, ahem, well... emotional too.
One day, my sweet baby went from being happy-go-lucky, to bursting into tears over an imagined hurt to then, running into my arms for a giant cuddle and then back out screaming, AGAIN. Yes. All true. And it all happened in about 30 seconds.
A quick blood glucose check and a number would zoom from 120 mg/dl to 360 mg/dl without stopping at 'GO' or collecting $200.00. An Monopoly game reference because suddenly, it seemed as though this stage of parenting was a never-ending circle around the board. Some days, I just wanted to sit on Boardwalk and enjoy every minute with her, but other days had me slumming in the low-rent district of emotions. Please, please, please.. give me a time-out in the jail section. I kid, of course. I really wanted to land her in jail. I kid, again. Sort of. Until we roll the next set of dice, get a doubles, and everyone is happy once more.
While we navigated that time period of life, we also realized that up ahead was the realization that menstruation was going to pop right out - and probably when we least expected it.
So I prepared and helped her with books, supplies, chocolate and anything else that I thought might be good. Being the mom that I am, I shared my own personal tween horror story of how it happened, just so she could feel comfortable and relaxed.
What neither she nor I knew, was how a period would effect blood sugars. And that, more than anything, is what I want to share with you. This is the kind of stuff that no one really likes to talk about, however, we all need to know about it.
In the days leading up to menstruation, specifically about two or three (some may find longer or shorter), we find that blood sugars tend to sharply increase, most likely due to an increase in estrogen production a.k.a, dreaded female hormones. Like a normal 100 mg/dl rises to about 200 mg/dl. We find that correcting with short bursts of fast-acting often helps combat the increase, especially if you wear a CGM and can watch the numbers. However, some moms have told me that they find success with adjusting their daughter's basal rates by adding a separate plan for that time of the month into their insulin pump settings. Set it and forget it, which might work best for a lot of teens.
Then, after the first day of the cycle, we notice that their is a sharp drop in blood sugars. This is partly why I haven't adjusted the basal rates as the drop can appear at any time in the first or second day following - it seems overnight is a great time to find that drop. Yuck. So, I feel more comfortable with keeping a tight control on correcting and not having to worry about switching back to our regular basal program. Really, this is whatever works best for you, though.
A couple of more tidbits from our friendly pediatrician were to know that teens with type 1 diabetes are at a potentially higher risk of having a yeast infection if their blood sugars are higher for prolonged amounts of time. A natural remedy and potentially a good way to ward of this situation (besides keeping blood sugars in check) is to add yogurt to your diet. We were also encouraged to make sure that we kept our daughter hydrated to help with lessening cramping as I was concerned over giving acetaminophen as it makes the CGM numbers a tad wonky and I like to rely on that.
Above all, while life goes on, I try to be kind-hearted and know that while I may feel sometimes like we are stuck on a Monopoly board, this is not an easy time for teens living with type 1 diabetes. Sometimes, the best medicine is a good movie and a lot of chocolate.
Just be sure to count the carbs and dose for it!
Tuesday, July 8, 2014
Sleeping In...
Back when they woke me up. |
I am posting this at 10:29 a.m. in the morning.
As of this exact moment, both of my lovely ladies are fast asleep. At ages 10.5 and 13, this isn't a shock to our normal household routine. It is summer and their little internal clocks reset on the first day school was out.
After a few tweaks of adjusting basal rate during a.m. with an increase of .050 during 6:00 a.m. through 10:00 a.m., and along with an adjustment increase of our old 'lunch' insulin to carb ratio (now aptly named 'brunch'), the girls can slumber on until mom starts stomping around the house.
Just like every other tween and teen out there.
#lifeisgoodinthesummer
Friday, July 4, 2014
Happy Independence Day!
Naturally Sweet Sisters thanks and salutes the many honorable men and women that serve and protect our country so that we may celebrate today.
Happy Independence Day to All!
Love,
Naturally Sweet Sisters
Wednesday, July 2, 2014
A Paper Trail Leads To A New Pump
As I begin to write this, my thoughts start to form in a script for a bad Wilfred Brimley Dia-Beetus commercial.
"Attention People Living With Diabetes: Have you or a loved one needed dia-beetus care through an insulin pump? If so, please send us proof of your diabetes, including a two-month blood sugar log, an explanation of why you are worthy for our brand of insulin pump and a pint of blood. Oh, and do not forget to include a check written to me, Insulin Pump Provider, for One Million Dollars."
As I roll my eyes while typing this, which is of course the ultimate in childishness behavior, I can't help but feel annoyed by the amount of work and effort that it takes to go into another insulin pump.
In the same vein of childish behavior, it seems wrong for the pump/insurance companies (and they all do this) to demand redundant, time-consuming paperwork. A two-month log of blood sugars, a list of reasons of why our out-of-warranty pump is not working, a letter from our endocrinologist stating need, copies of A1c results and the list goes on.... all for a child who is clearly still using insulin. Even more insulting, she already has been on an once-before-approved insulin pump. What could have possibly changed?
She still has type 1 diabetes.
And we are part of the lucky group because we have doctors that will type the letters and fulfillment companies that will stay with our order until it goes through. I even think of my daughters as being blessed because mom and dad have a good grasp on the medical lingo and can decipher what is being said.
But what if you don't? What if your doctor is not familiar with navigating the ins and outs of insurance and pump manufacturers. What if you are left to order a pump on your own and worse, what if your not prepared to decode the various roadblocks and understand that not every 'no' really means NO.
What may be helpful if you are just venturing into this world of durable medical equipment, is to reach out to an advocate or a mentor. Either through JDRF, ADA, or even on Facebook Closed Pages for chatgroups that have people pumping with the same type of insulin pump. These are groups that have been there/done that and are a great resource. A quick Facebook search should land you on several.
After you have a handle on how others went through the process, form a list of questions for your insurance company and see if you can get answers in writing before you agree to purchase the insulin pump. Some pump companies have representatives that will also help in researching your qualifications before you buy. It may be best to enlist the help of both the rep and direct call the insurance company to ensure that you are getting a complete story.
Finally, follow-up with your endocrinologist or prescribing doctor if you have a pump held up in the ordering process. In larger practices, it is not uncommon for paperwork to slip through the cracks. A reminder call of what is missing can make all of the difference. By being an advocate for your family, you can make the ordering process run as smoothly as possible.
And ultimately, avoid some childish eye-rolling!
Tuesday, July 1, 2014
Golf: The Perfect Sport
With summer's arrival, both girls are back on the golf course.
I have already declared this sport 'The Best Possible Sport for Living With Type 1 Diabetes'. See HERE and HERE.
It truly is. On the golf course, one has time to exercise while managing blood sugar levels. A little bit too high? No problem. Correct bg, drink some water and keep walking. A little bit too low? No problem. Golf bag is stocked with a meter, glucose, food and even a juice box. Just take a moment while waiting for the other players to tee off, drive or putt. There is plenty of time. Golf is slow and for everyone with t1d that plays, that downtime is a blessing.
For their first time in their summer league, both girls dealt with one of each of the above. Since they are playing with kids on the course for three hours, mom wasn't there either. The girls had to decode the feeling, understand what to do and address the issue so that they could keep playing and not miss a beat.
At pick-up, the girls explained that it was motivating to take care of themselves because they want to feel good and be a part of the experience. Unchecked highs or lows tend to rob them of those positive memories and they wanted none of that.
Pretty awesome to understand that at such a young age. Hoping we can keep that motivation going!
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