Growing Things


Diabetes Blog Week



Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!  (This topic is a suggestion from the 2016 #DBlogWeek survey.)  For more 'more than diabetes stories,' click here!

 
I like to collect plants.
 
Not fancy plants, and definitely not fussy plants which need any real attention.
 
I like plants with a little history, plants which remind me of people or places that are special to me.
 
Here are a few things which happen to be growing or blooming in my yard today:



The first rosebud of the year.
The bush was in full bloom in the front garden of the house when we moved in.
I love that we see the roses through the living room window.


Lily of the Valley transplanted from my childhood home's garden




The mint in the back is from plants which grew at the farm where my grandmother grew up,
divided and transplanted in several locations since then.

The rosemary in the foreground is a plant which lived over from last year- not as much a history story as a gardening win!



We went to a local public garden's plant sale the first year we lived in our house.
I purchased a small bleeding heart plant, divided from one on the garden's grounds.
It's now threatening to take over the corner of my yard.


These Japanese iris, also in the front garden, came from my husband's
childhood home.



An Hour's Worth of Emotions


Diabetes Blog Week



Today let’s revisit a prompt from 2014 - May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

I present to you the story of the events of Monday morning, with words describing our wide-ranging emotions about said events highlighted in bold print:

On Monday, my kid arrived at school anxious- not about the first day of standardized testing, but about which teacher had been chosen to proctor her private testing room. Her 504 plan has accommodations allowing her to stop and restart testing to deal with any diabetes issues, so she is separated from other kids since her test might be timed differently than that of others. "It's so awkward, mom, I hope it's a teacher I know at least." She checked the list posted in the school lobby and was confused. She had, inexplicably, been assigned to a room with a large group of special education kids. The texts to me began...

"Help! What do I do?"

"Go to guidance and explain that you've been told you were testing alone."

We texted back and forth for 25 minutes or so while she sat in the guidance office. People came in and out asking her questions and then disappearing for stretches of time. All of the teachers not assigned to a testing room were summoned to the principal's office via the PA system. She eventually stopped answering my texts at which point I assumed the situation had been resolved and that she had started taking the test somewhere- with someone.

Scrolling back through those texts, the words and emojis described the following emotions:

Surprise
Anger
Confusion
Frustration
Boredom
Impatience
Sadness
Anxiety
Loneliness
Aggravation
Annoyance
Hope
Disbelief
Stress

Those were interspersed, because how else were we going to cope, with

Amusement and
Laughter



In the end she was relieved that it got resolved, and amazed that the stress hadn't spiked her blood sugar. We were surprised that the rules required 2 teachers to be in the room with her and thankful that they were two teachers she knew and liked. They helped her settle in well and she feels confident about how she did on the day's tests.

In the end, I was proud of her for handling the situation herself and happy that technology allowed me to support her via text.

I would be embarrassed, however, if school officials discovered the number of circus-themed emojis I sent over the course of the morning.

While this story highlights in a somewhat lighthearted way how diabetes can lead to a wide range of emotions in just an hour of every day life, the possibility of long-term serious mental health issues is real. Depression, burnout, anxiety and other mental health issues impact most people with diabetes and their caregivers at one time or another. To read other perspectives on this topic, click here.

Lost in the Dark


Diabetes Blog Week



I chose the 'wildcard' option for my Diabetes Blog Week day 3 post:

Whether you or your loved one are newly diagnosed or have been dealing with diabetes for a while, you probably realize that things can (and will) go wrong.  But sometimes the things that go wrong aren’t stressful - instead sometimes they are downright funny!  Go ahead and share your Diabetes Blooper - your “I can’t believe I did that" moment - your big “D-oh” - and let’s all have a good laugh together!!

Okay- a caveat- this one was stressful for my daughter. But because I didn't hear about it until everything was resolved, I'm able to laugh about it:

She boarded the dark roller coaster and discovered the seat was cramped. Before using the safety harness, she decided she'd be more comfortable if she removed her Dexcom receiver which was clipped to her waistband. She stashed the receiver in her string backpack and put the bag in the pouch area in front of her.

The ride was scarier than she'd hoped. She got off, grabbed her bag, and quickly headed for the exit.

Once outside, she opened her bag to grab the Dexcom. It wasn't at the top where she'd put it. She frantically removed every item from the bag. It wasn't in there. She had her friends double-check. No Dexi.

She approached the attendant at the ride entrance. "I lost my medical device on the ride."

She described the device, an electronic item in a black case with a belt clip. She answered questions about which seat she'd been in and how long ago she rode.

The attendant checked his station first since all lost and found items ultimately ended up there. He didn't have it. He called the person at the stand next to the ride, where any lost items would be turned in by riders who found them in their cars, and was told it wasn't there either.

"We may have to shut down the ride and turn on all the lights if it doesn't show up."

My daughter was horrified. Her mistake could potentially shut down one of the most popular rides at the amusement park.

"We'll wait a few more minutes and see if anyone turns it in."

At that point, it was time for the ride attendants to rotate stations or take their breaks. The guy helping my daughter left and was replaced by the person who had been at the stand next to the ride.

"Describe it to me again?" he asked.

She did.

"OH ...  Yup. I have it. I thought it was an I-Pod."

It was a scary 15 minutes.

Lessons were learned about securing valuable items.

Ultimately everybody lived happily ever after, and now we can laugh about it.

Want to read more stories about 'Diabetes Oops Moments?' Click here!

Getting Our Money's Worth


Diabetes Blog Week


It's Day 2 of Diabetes Blog Week! Today's topic is: Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

I'm grateful that our family is able to secure what most in this country would consider 'good' health insurance through an employer and that we're able to afford what are still extraordinarily expensive premiums, deductibles and copays. There are so many people who are unable to afford care which would allow them to live...let alone live well...with diabetes. Having access to quality diabetes care is not, in this country, in this day and age, something to take for granted. Instead, both because it's not guaranteed and because we pay dearly for it is, for us, a precious resource which should be used wisely in lots of ways, including these:

We prepare well for, and take full advantage of visits to the endocrinologist. Our copay to visit a specialist is $50- no small price.  We choose our specialists carefully, and if we're not happy we don't go back, just like we wouldn't return to a restaurant that served a sub-par $50 meal. Fortunately, after some trial and error, we found a great endo years ago. In the days leading up to the appointment, we talk as a family about what problems we're hoping to get solutions to and what questions we need answered. Once we're there, we give the 20-30 minute conversation all of our energy and focus. We take notes, and when we get home we implement the suggestions.

We also choose and purchase our diabetes equipment carefully. We pay a 20-30% copay for pump and CGM supplies. So we do our homework there too, extensively researching options. Then we talk with the doctor to choose the best insulin delivery and glucose monitoring methods for my child's particular needs. Over the course of many years I have managed to stockpile some extra pump and CGM supplies in case there is a lapse in our insurance or in our ability to pay that 20-30% copay.

We find opportunities to save money on supplies when it's reasonable to do so. We recently had the choice whether to pay full price for Lantus to keep in the fridge- and hopefully never use- for pump failure, or to receive a different long-acting insulin for no copay at all. That was a no brainer. We chose last year to stick with the longer-lasting transmitters and sensors of the Dexcom G4 instead of upgrading to the G5 which would cost us more in maintenance supplies. On a much smaller scale, I stock up during juice box sales and buy out the Smarties post-Halloween.

Despite the alarming annual tally of medical costs I compile each year for the income tax file, we are among the fortunate ones. Those costs don't preclude our ability to pay for housing, groceries, or even annual family vacations. So when there are unneeded supplies in the closet, or a charitable organization to support, we try to help those who are unable to afford the costs of diabetes. We've donated test strips and meters to Insulin for Life. We participate in an annual JDRF walk. We share information on social media about local organizations willing to take and redistribute unexpired diabetes supplies. We write letters and make phone calls to government representatives, insurance companies, and medical companies.

We do what we can to use our resources wisely and to help and advocate for those who don't have adequate resources to use.

More Diabetes Blog Week posts on the cost of diabetes can be found by clicking here.




Stuff Happens


Diabetes Blog Week


 
Today's the first day of Diabetes Blog Week! (!!!)

Today's topic is: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?
 
I try to maintain a family-friendly blog here, so I'll put it this way: Diabetes stuff happens. Like sitting down to lunch only to discover there's only a unit of insulin left in the pump. Or being so low all day that you run out of glucose tabs. Or discovering the meter battery is dead while you're on a sleepover. The stuff is not always preventable. So we try to be prepared for as many eventualities as possible.
 
At home or at school there are plenty of supplies to address any diabetes disaster. When we're out but close to home I can run over to a friend's house with a battery or we can stop home between errands for a new infusion set if we need to.
 
But sometimes we travel further afield. For day trips, excursions while on vacation and school field trips, we throw this Ziploc bag (or a facsimile thereof from school) in the backpack:


 
THE CONTENTS INCLUDE:
A spare vial of test strips
Spare batteries for both the meter and the pump
Glucagon (even though there's usually one in my purse)
The current open vial of insulin
Long-acting insulin for pump failure - at least if we'll be more than an hour or so away
A couple of syringes
Everything needed for a site change including 2 insertion sets
Dexcom tape
Extra glucose tabs
 
 

If it's hot, we put the contents in this insulated zipper bag.
 
It's a lot to carry around. We usually also carry extra juice boxes and water. But it beats the possibility of having to return home (or to our home away from home) if the infusion set rips out, or the pump battery dies, or somebody accidentally dumps all the test strips on the ground.
 
Nobody ever said having diabetes was predictable. Stuff happens. That stuff is less likely to stop us if we're prepared for it.

Want to read more posts about the Unexpected? Click here!
 


The Insulin is Insulin Conversations


At last month's endo appointment we needed just one prescription: Lantus to have on hand in case of pump failure.  Our doctor sent the Lantus prescription directly to our local CVS through the diabetes center's online ordering system, just as he's done every time our emergency vial has expired.

By the time we got home there was a voice mail from a pharmacist. The Lantus was no longer covered by our insurance. I needed to return the call to talk about next steps.

When I called back, a pharmacist walked me through possible substitutions. I explained that I wasn't terribly picky as long as there was something in the fridge which would keep my kid alive for a day or two until a new pump arrived. We decided that whatever the doctor ordered to substitute would be fine with me and that if there were choices I'd take the one with the lowest copay.

We left for spring break the next day expecting a voice mail upon our return telling us that the prescription was ready for pickup. There wasn't one, so I called.

"Yes- I see that the Lantus wasn't covered but that the Novalog was picked up as a substitution."

"Um...no. The Novalog was a different prescription which we refilled around the same time. Novalog isn't a substitution for Lantus- they're different kinds of insulin. The pharmacist I spoke to was going to call the doctor to request an appropriate substitute."

"Oh- I'll give the message to the pharmacist so that he can call later today."

Two days later, still having received no notification that the prescription was ready, I called to follow up.

"Yes I see that the Lantus wasn't covered, but the Novalog was the substitute for the Lantus, right?"

"No. It wasn't. And also, that's not possible. They do different things."

Again, "I'll have the pharmacist call the doctor's office."

I responded with something only slightly nicer than, "Don't make me have to call you again."

Two days later I called again and was transferred to the actual pharmacist.

"We've been calling the doctor since yesterday afternoon and haven't been able to reach anyone."

"It's a huge clinic, not a private practice. That seems highly unusual."

"Yes, but it just rings and rings."

We verified that they had the correct number, which they did, and then the pharmacist asked if I would call instead.

So I did. I called the office, where I was quickly connected to someone who answers the 'prescription line.'

I recited my tale of woe and provided the necessary details about the pharmacy.

An hour or so later I received a call back from the diabetes center.

"Hi- I'm calling you back about the Lantus. You have the Novalog, right?"

"Yes- that's not the problem."

"So then what is it that you need?"

"An alternative for the Lantus."

"But you have the Novalog."

"Yes- and they're two different things...right?" I was right ... wasn't I? 

"We have the Novalog which is in my daughter's pump- the fast acting insulin she uses 24/7. Then we keep Lantus, the 24 hour insulin, on hand in case the pump fails."

"Well...yes. I don't know what the pharmacist was saying then. Let me call him back."

An hour or so later the woman from our doctor's office called back and said that doctor's orders for Basaglar insulin had been sent over to our CVS. I received confirmation of this new order through the office's online patient portal.

Another weekend passed with no news from CVS, so on Monday I called and inquired about the status of my daughter's Basaglar insulin order.

"Yes. We are working on that."

"You're working on it?"

"Yes. Well. Let me see if we have that in stock." There was a brief interlude of top volume static-y piano music and then, "Yes. I have it here. We will have it for you this afternoon."

And, believe it or not, they did. Except it was in the form of pens, which we've never used.





 
 
So now I have to call to get insulin pen needles.
 
Meanwhile, a quick google search tells me that if push comes to shove I can draw the insulin out of the pen with a regular syringe. Which is reassuring, since who knows how long the next step will take.
 
 

The Trip


I chaperoned a five day, four night, 120 kid high school field trip last month.

While there was a school nurse traveling with the group, and while my kid does most of her diabetes management alone at this point, I wasn't completely comfortable letting her take this trip on her own. And, perhaps more importantly, she didn't feel completely comfortable either. Our concerns included:

-The farthest my kid has ever travelled for a sleepover is 5 blocks from home. She's never been away for more than about 18 hours. Going from that level of overnight diabetes self-care to a 4 night trip over a thousand miles from home felt to both of us like way too big of a leap.

-The trip involved air travel.  My arrival for an emergency (gastrointestinal illness, first-ever glucagon use, other unforeseeable situation) would be both significantly delayed and extraordinarily expensive. Also, while I'm sure someone could have walked her through airport security, the TSA checkpoint is a minefield for people with diabetes and we were concerned about her potential need for a strong advocate should she get pulled aside.

-The trip involved five days of dining out. My daughter has never managed more than two restaurant meals in a row on her own and was nervous about not having someone there to eyeball the carb counts with her and/or help her pick up the pieces after a bad guess.

-The trip's itinerary was intense. And the itinerary didn't lie. My Fitbit tells me I walked 10 miles a day with lots of 'active' time. We rose by 6:30, earlier some days, and the kids were not required to be in their rooms until 11 p.m. There were regular transitions from place to place with few moments to stop and regroup. Amusement park rides, swimming pools, and several performances including marching in a parade were all on the agenda. We were concerned that the level of activity combined with the lack of time to stop and think about diabetes could lead to problems significant enough to slow my kid down or derail her participation. It felt important to have someone there both to remind and support her as she took the time to care for her diabetes, and to stay behind with her should she need to stop and wait out a low or trouble-shoot a high.

We decided that sending her on this trip without a parent was too much to ask of my child, the nurse, and the staff. Also, spending 5 days flipping between the Dexcom app and the 'Find My Friends' app on my phone while simultaneously trying to remember to breathe didn't really appeal. After a couple of conversations with the teacher in charge of the trip I was, despite a certain level of anxiety about chaperoning a group of high school kids, grateful to be given the opportunity to go.

On the trip I performed a variety of general chaperone duties, got to know some great kids and adults, and got to be part of a unique adventure. As far as my mom-of-a-kid-with-diabetes role, I mostly watched from a safe distance while my kid did her own thing. She talked to the TSA people on her own. She kept the Dexcom with her overnight and woke to respond to its alarms. She did her own site change in her hotel room. She counted her own carbs, asked questions at restaurants, and, on more than one occasion, sent back sweetened iced tea for the unsweetened she'd ordered. She made decisions about dosing and snacking based on her activity level. She carried her own supplies. Her blood sugars weren't perfect, but given the food and schedule they were good enough. She spent the days with her friends and I spent them with the other chaperones.

As it turned out my presence was more of a convenience than a necessity. I provided some in-line coaching and moral support as we went through airport security. I handed her extra water to combat the effect of heat on her blood sugars. I helped her with an unanticipated Dexcom sensor change when the one we put in the day before the trip inexplicably conked out. I met her at a water flume ride to hold her diabetes stuff so it didn't get soaked. I carried the glucagon, a spare infusion set and some extra glucose tabs, always close enough to jump in to assist if needed. When the large group divided and headed to different destinations I stuck with my kid, making the division of chaperones a non-issue. My presence allowed the nurse traveling with us to focus on other kids without worrying about keeping track of mine.

But now that I've seen how well she handled most everything without my help, I'm excited for her to have an opportunity to travel without me. Just maybe on a trip that's a little closer, and a little slower-paced.