I met a woman the other day who was an occasional substitute nurse at the middle school. While this was the first time we'd met, she knew my daughter well. There are others like her.
I have sent my child to school, on field trips, to birthday parties, to marching band camp and more. The older she gets, the more people we collect who've helped her with her diabetes care. Some I know well, some I've been introduced to, and some I've never met.
I wonder if the people in whose hands I've left her fully understand how I feel about them.
These people have taken my child's life in their hands. Maybe they don't realize that, or look at it that way. I certainly wasn't going to point it out in quite those terms to the preschool director who agreed to accept her into the program. Those weren't the words I used when I thanked the parents who invited her for her first sleepover. But these, and many more adults, have been aware that having my daughter in their class, in their home, or in their field trip group necessitated an extra level of responsibility and vigilance.
If taking on that level of responsibility wasn't enough, these people have, quite often, gone above and beyond what I would have expected. Parents have contacted the birthday party venue for carbohydrate counts on food. Teachers have requested to be glucagon trained for my child's safety. Chaperones have sat with her while she stopped to check her blood sugar. Guidance counselors have called about 504 accommodations I never would have considered. Nurses have called just to reassure me that everything was okay. I'm incredibly grateful for every one of these thoughtful acts.
Being the parent of a kid with diabetes is a huge job. Being a kid with diabetes is an endless challenge. We're incredibly grateful for the people who step in to ease the burden in whatever ways they can.
Last week, diabetes had the upper hand. It issued a series of decrees.
*Alarms will sound nightly from midnight until four a.m.
*You will wake a sleeping teenager for Cookie Monster Juice at least twice per night.
*Delirium will lead you to wonder if the nightly need for multiple juice boxes has something to do with the Cookie Monster themed branding. As in, 'Me Want More JUICEEE.'
*You will wake each morning to say, or to hear your child say, "Uck- juice box breath again. This is so gross."
*You will become so exhausted by overnight low blood sugars that you will increasingly limit dinner and bedtime boluses until the alarms turn from low to high, though still reliably from 12-4.
*You will try multiple tactics to stabilize overnight numbers and each will backfire more mysteriously than the next.
Diabetes, I have news for you. You don't get to win.
We issued only the only decree we need:
*We will not give up.
With perseverance and patience the trend is abating as mysteriously as it appeared. Maybe we finally made the right basal adjustments. Maybe we fixed the bolus dosing for the evening hours.
Or maybe it's all because we switched back to Juicy Juice boxes.
I thought armchair medical quarterbacking might be a unique diabetes phenomenon. People who live with diabetes often hear these kinds of things:
That new pump with automatic shut-off sounds like something everyone should have- when are you getting one?
I can't believe you let her go to the carnival without an adult- that seems so risky.
My coworker with diabetes completely eliminated carbs and she's doing great! You should try that.
My nephew never had a 504 plan and he graduated high school with straight A's and a 1300 on his SAT's. Why would you have one for your daughter?
I happen to be spending time with a few different people these days who have medical conditions other than diabetes. I'm learning that we diabetes people are not alone. The free dispensing of unsolicited advice crosses many disease platforms. I've heard 'suggestions' like:
I never went to a doctor for my rotator cuff issue- my chiropractor is amazing. Alternative medicine is the only way to go.
My cousin had that kind of cancer and never considered new or experimental treatments. It seems really risky.
Dad wouldn't have put up with the pain long enough to try physical therapy and pain management for his back issue. He went straight for surgery. I can't believe you're going through all of that.
There's a catch-phrase in the diabetes community: Your Diabetes May Vary (YDMV). In many ways it applies to other physical conditions too. There are so many reasons (more than this short list) that different treatments and lifestyles work better for different people with the same diagnosis:
-First of all, the diagnosis might not be quite the same at all...type 1 vs. type 2, different kinds of back injuries, different kinds and stages of cancer.
-A condition can physiologically manifest itself differently in a different body.
-Insurance coverage and ability to pay can influence medical choices.
-Education and prior life experiences influence decisions people make about treatment.
-Quality of life has a different meaning for everyone, leading to different tactics for managing a health condition while living a full life.
I think it's okay, if not downright helpful, to talk to each other about the different ways we manage diseases. We can certainly learn from one another, and it's often useful to hear and to try new ideas. What's not helpful is insert assumptions or judgements into the conversation. It's important to respect and support the decisions people make, even if they're different than yours. What works for one may not work for another.
At least, diabetes friends, we're not alone. It turns out that Your Disease, Discomfort, Distress, or Dietary Restriction May (Also) Vary. And that people have opinions about all of them.
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
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
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:
Those were interspersed, because how else were we going to cope, with
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.
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.
"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!
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.