The Time-Out Room
My daughter got sent to the time out room at school today. She got sent there because she has diabetes.
It sounds like the start to a diabetes parent horror story. It's really not- just a bizarre one.
The 8th grade took a standardized science test today. It's specific to our state and unrelated to the other standardized tests they took a few weeks ago.
When she took her first standardized tests (2nd grade?), she took them in a room with other kids who had school 504 medical, or individual educational accommodation plans. This went on through 4th grade, and then in 5th and 6th, she and one other girl with a medical plan were further separated from the rest. Testing in another room allowed her to stop the test and leave the room to treat low or high blood sugars or to use the restroom. We used this accommodation once for an episode of Nurse's Office Calisthenics.
Come 7th grade, we were told that the rules for the newly introduced test were different and that if she left the room...any room for any reason...she'd have to stop testing and make up the test another day. Kids with both medical and educational challenges were testing in another room and being allotted extra time, but no accommodation could be made for having to actually leave the room. So at that point, we chose to have her take the test with the 'general population.'
Today's test, unbeknownst to us, fell under the older test's rules. So as she sat in homeroom today, names were read off, followed by the rooms the kids were to go to. Kids were generally being put in alphabetical order for testing. Then came her name, followed by, 'You're going to the time-out room.'
Hilarity apparently ensued amongst her friends. The teacher said something along the lines of, 'There's a sentence I never thought I'd have to say!"
She took the science test, by herself, in the time-out room with a Spanish teacher she didn't know very well. She was intrigued to experience the room, had plenty of time and peace to read her book as she finished each section, and maintained a good sense of humor about it. Would a phone call home or a check-in with the student earlier this week have been nice? Absolutely- it was a strange surprise. But if nothing else, diabetes surely teaches us to roll with the punches and survive by finding the humor in situations. This one was really pretty funny.
Uni-solve
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| Tips and Tricks - Friday 5/20 Let's round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There's always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.) |
I love this stuff.
We order it, of course, to remove the tape and its residue from my daughter's pump sites. I love, of course, that it helps dissolve the adhesive and makes taking off pump site tape a little less painful than ripping off a stubborn Band-Aid. But I love it for other reasons too.
There was a day, many many years ago, when I couldn't get the price-tag gunk off of a very nice piece of glassware I was giving as a gift. Rubbing alcohol didn't work. Neither did mineral oil. What could I use? Well, there was something in the site change supply box that seemed to remove stickers from my kid's body with amazing ease. One Uni-solve wipe and you would have never know that vase had ever had a price tag on it at all.
That was the beginning of a long love affair. In addition to countless other price tags, Uni-solve has also removed
-temporary tattoos- even the stubborn ones- instantaneously.
-a substance called 'spirit gum,' used to attach a beard when my daughter played a rabbi on stage.
-permanent marker from our windshield after a weekly beach pass was attached before the ink dried.
-adhesive leftovers from many other friends' and family members' hospital experiences.
-pine sap from fingers, feet and flip flops
-gum residue from shoes
Uni-solve is one of the happy little discoveries diabetes brought into our lives. It's like having a secret weapon; a tool most people don't even know exists. With all the reasons diabetes makes us feel challenged and put-upon, this stuff is our little reward.
For more diabetes tips and tricks, click here!
I'd Rather Get a Mani-Pedi
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| The Healthcare Experience - Thursday 5/19 Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all! |
My daughter attended her 8th grade 'semiformal' dance last weekend. As a treat, she and a few friends went after school the day before the dance to get manicures and pedicures. She was there for an hour and half, had her feet and hands pampered, sat in a massage chair, ate a coffee flavored hard candy and came out feeling relaxed and good about herself. The price was half that of the coinsurance we'll pay in a couple of weeks when we go to the endocrinologist, and that doesn't even factor in the cost of health insurance in general.
I realize that the endocrinologist has significantly more education, expertise and support staff than the women who work in the nail salon, but bear with me here.
What if she'd arrived at the nail salon and there had been a dozen people in line ahead of her, forcing her to wait in an uncomfortable chair for an hour? What if she sat down at the little table to have fingers done and after the seventh digit, the manicurist sent her home because she was out of time? What if once her fingers were done she went over to the pedicure area and was told pedicures required a separate appointment time at this salon so that even though she thought she'd booked a combination package there was no way she could have one today? What if once she'd chosen the perfect polish color to match her dress, she was told that color was not included in the price and that she'd have to purchase the entire bottle at an exorbitant fee in order to proceed?
Are you catching my drift yet? The crux of my argument is this: if any of these scenarios happened at our local nail salon we'd go elsewhere and write a scathing Yelp review for good measure. Yet in the healthcare marketplace we put up with so much. Our choices are limited, and while we sometimes put up with issues at a mediocre medical practice in order to get good care from a provider we trust, we shouldn't have to.
Most of us are paying through the nose for diabetes care. Shouldn't we get a friendly welcome? Shouldn't there be a comfortable chair (massage chair preferred but not required) during a short wait, and maybe a complimentary cup of tea or glass of water? Shouldn't we expect the visit to have a seamless flow from vitals to data download to face-to-face time with the doctor? Shouldn't the provider look us in the eye and ask what diabetes issues we need to talk about? Shouldn't our insurance cover the diabetes care and equipment we and our doctors believe to be most appropriate for our individual needs? Shouldn't our face to face and phone conversations with diabetes care and supply providers leave us feeling like the customer is always right and always comes first?
It's a huge problem to which I wish I had a solution. We've been proactive over the years in shopping around to find the best endocrinology practice we have access to based on our insurance and geography in any given era. When it's possible, I advocate for access to what we need both on an individual level and on a larger scale. Nevertheless, in annual copays alone, we're spending an extravagant vacation's worth of money each year for service we'd almost always rate poorly in the 'reviews' section on a given website, and which we'd often choose never to pay for again. If we had a choice.
What do other people think about their healthcare experience? Click here to find out!
A House Divided
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| Language and Diabetes - Wednesday 5/18 There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful. |
"Words mean more than what is set down on paper. It takes the human voice to infuse them with deeper meaning." -Maya Angelou
We are a house divided.
My daughter calls herself a 'diabetic,' and talks about the other 'diabetics' at school. She thinks it's ridiculous that I avoid the word at all costs.
In my mind, using the word 'diabetic' labels a person with a disease. Hearing or using the word makes me uncomfortable. 'Person with diabetes' makes the diabetes part more peripheral to the whole person, so that's what I use (and PWD for short).
Maybe it's my social work degree talking. Labels are limiting, I've been taught. There's more to a person than (insert any one personal characteristic here). Labels separate us rather than bring us together. Using one word to describe someone eliminates all of the other important characteristics which make up a whole, unique, interesting person.
I'm also concerned about the negative connotations of the word 'diabetic' in the popular media. Do I want my kid grouped in with a collection of people the media (wrongly yet repeatedly) portrays as fat and lazy? You and I know those are all ridiculous, inaccurate depictions, but the general population does not. Why go there unnecessarily?
Most importantly, I know my daughter is so much more than her diabetes. I fear that the 'diabetic' label will somehow supersede all of the other characteristics which make her her.
But yet, and not just to keep the peace, I'll admit that I can see my daughter's point. A diabetic is something she is, just like she's a musician, a scholar, a reader, a baseball fan, a cook, a friend, a cousin, an actress and a teenager.
Maybe, as long as it's not the only label, 'diabetic' is an okay self-describing word to use. She's not using it negatively or positively. She's not using it exclusively of other descriptors. She's using it matter-of-factly.
She uses it because words are, in the end, tools to convey information. 'Because I'm a diabetic, I got to eat a snack on the way back from the field trip.' 'All the diabetics got called to the office for a group picture to publicize the school's JDRF walk.' 'I'm following this one diabetic's Instagram account and it has hilarious memes on it.'
Let's revisit the Maya Angelou quote I started with, "Words mean more than what is set down on paper. It takes the human voice to infuse them with deeper meaning."
I'm not going to start using the word 'diabetic.' In my mouth, it sounds negative, limiting and simplistic. My daughter will keep using it because to her, 'diabetic' is simply one of the many interesting things a person can be. I will not be upset when she or others in the diabetes community use it because I am sure that, for them, it is conveying the meaning they intend. Perhaps a house divided against itself can stand after all.
For more thoughts on why words do, or do not, matter, click here!
In The Back Of My Mind
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| The Other Half of Diabetes - Tuesday 5/17 We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!) |
Always, in the back of my mind, is the possibility that, due to diabetes, my child will become unconscious when I'm not with her or that she will die at night. When I hear an ambulance headed towards her school I wonder if my phone is about to ring. When my child is sleeping in, or when I don't hear from her early on the morning of a sleepover, I wonder if she's asleep or passed out, or if she's even alive. Despite our attempts to push it into the background of an otherwise productive and happy life, diabetes is a dangerous and sometimes deadly disease.
I feel better when she's wearing the Dexcom. With it, I know she's got a safety net when it's a strenuous gym day or when she's out with friends. When she's sleeping in I can check the graph and wake her if necessary. But even then a lost signal or a night of inaccurate readings will leave me glancing at her bedroom door, wondering. Will I need the glucagon? What if she doesn't wake up?
It's not an overwhelming fear, nor do I dwell on it. It just lingers in the back of my mind. Yet it certainly sets my concerns apart from those of other parents. They complain about their sleepy, lazy teenagers, but they rest assured that by noon these kids will appear in their kitchens no worse for wear. This isn't a conversation I have with the mom's night out crowd. It's a huge jump from, "I wish Susie would get her butt out of bed and do something useful on Saturday mornings," to "Well at least you know she's getting up- when my kid sleeps in , I seriously consider the possibility that she's unconscious or dead. Please pass the chardonnay." Sharing this anxiety could, mental health professionals may contend, be helpful to me, and it would certainly be a form of advocacy and awareness-raising. So far, beyond a couple of very close friends, I'm not there.
How, then, do I keep these thoughts from paralyzing me...how do I keep them in the back of my mind? Fortunately I'm generally not prone to episodes of panic, so my overall temperament helps. Writing and reading here in the diabetes blogosphere reminds me that I'm not alone, which is a huge source of support. When I notice I'm beginning to dwell on this (or any other) anxiety, I know it's time to take better care of myself. I push myself to engage in incredibly simple but sometimes seemingly impossible tasks like making myself a cup of tea, taking long walks, eating well, ensuring that I'm spiritually engaged, doing something fun, and/or talking to someone I trust. I can't eliminate this particular anxiety without eliminating diabetes altogether, but I've remained able to keep it from becoming more than an occasional fleeting thought.
Living with diabetes means living with a unique collection of stressors, fears and other emotional challenges. I'm curious to read how other people deal with the ways diabetes impacts their mental health, interpersonal relationships and sense of self. Click here to read more posts on today's topic.
Why Am I Doing This Anyway?
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| Message Monday - Monday 5/16 Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.) |
A half a mile into a windy and drizzly JDRF Walk my two year old daughter turned around in her stroller and asked, "why are we doing this anyway?"
"To raise money to help people find ways to make having diabetes easier and to eventually make it so people don't have diabetes at all anymore," I replied.
Satisfied, she turned back around and enjoyed the overhang feature of her stroller which was keeping her dry.
Her question still rings in my head in a variety of circumstances. When engaged in any endeavor, either as an individual or as part of a group or organization, it's important to know, 'why are we doing this anyway.' Essentially, today's diabetes blog week topic translated in my head to, 'why are you writing this blog anyway?'
The answer is similar to the one I gave my daughter about the JDRF walk. While I can't cure diabetes with a blog, I hope I can make it easier. Difficult situations are easier when there is someone to share the journey with. The best people to share a difficult journey with are often those who've been there before. Not everyone has a collection of people in their neighborhood who are also raising kids with diabetes. Even those who spend time with others in the same boat may be looking for alternate perspectives and ideas.
That's why I'm doing this. The 'diabetes awareness message,' as the prompt calls it, that I'm trying to get out there is, 'you're not alone.' See also, 'I'm not alone.'
While I sometimes write about advocacy issues and current diabetes-related events, I mostly try to share everyday stories about our everyday life with diabetes. More specifically, I write stories about a girl between the ages of 9 and14 and her parents, with occasional flashbacks to the earlier years. These are stories about school, hanging out with friends, what we had for dinner, vacations, afterschool activities, and stuffed animals. These are stories about how diabetes factors into the every day life of a kid and her family. I write because I hope someone out there is nodding her head and saying, 'me too.' I write because I hope someone out there is scratching his head and saying, 'I never thought about it that way.' I write because it makes me feel less alone on this journey too.
For other bloggers' thoughts on why they are doing this anyway, click here!
Limerick Day
There once was a girl with a meter.
They said diabetes would beat her.
She rose very tall
And said with some gall,
Fall? I won't even teeter.
According to the New York Times, today is 'Limerick Day,' in honor of the birth date (in 1812) of painter and poet Edward Lear who popularized limerick poems. Hence a re-post of my limerick, which I posted here a couple of years ago during diabetes blog week. Speaking of which...don't miss out on the fun of next week's D-Blog week. The link will take you over to all the info to sign up. See you there!
Worried
This whole UnitedHealthcare/Medtronic thing has put me through a string of emotions this week. Disbelief and anger batted leadoff. Determination followed, with a string of advocacy actions which are still ongoing. Sadness made an appearance along with despair. Now, the more I think about it, the more worried I get.
I'm worried on a personal level, as a UHC customer, that my kid will lose coverage for the tools she uses all day every day to manage her diabetes. Pediatric patients are currently exempt but there's no guarantee they always will be. I've also heard she's likely to turn 18 sooner that I'd like, and then she'll be required to switch. Then what happens? Do we fight for an exemption? Do we (could we afford to?) pay to go out of network? Do we bite the bullet and learn a whole new system and try to make it work for her? Diabetes is hard enough without having to do any of these things. Would her blood sugar control suffer as a result? Even if eventually we learned a new system, it would take a while and the learning curve would inevitably impact her blood sugar numbers.
I'm worried that this is just the first of the surprises in store for us. Why not make us use another brand of CGM? Why should they allow us to go to a doctor across the border in another state when there's one just down the street who is, on paper, exactly the same? Does she really need to test 8-10 times per day? Surely not...5 or 6 strips per day should be plenty. Lab work again so soon? Nah- just get it done once a year no matter the results.
I'm worried because this decision represents another big step in the elimination of healthcare choices for patients and their doctors. UnitedHealthcare is a huge insurer. They can't be the only one going down this road when it comes to durable medical equipment. Companies have already been down this road for pharmacy benefits, physician choices and more. Wherever we turn for insurance our choices will become increasingly limited. And for those without the means to go out of network or pay a higher copay for a different doctor, tier of drug, or medical product, choices are disappearing entirely.
I'm worried about the 'big brother' language in the information about this agreement. “UnitedHealthcare and Medtronic are working together to better serve people with diabetes by combining their collective resources, data and expertise," an e-mail statement from United Healthcare's corporate communications spokeswoman, as quoted in a Diabetes Mine overview of the situation reads. "This will include assessing how the combination of advanced technologies and patient support programs can improve care plans for individuals using insulin pumps... we aspire to bring a value-based approach to diabetes care that tracks clinical outcomes for UnitedHealthcare members on insulin pumps and places greater focus on quality rather than the volume of care delivered." My insurance company wants to track my child's 'clinical outcomes' to improve her 'care plan?' Maybe we don't need to go to the doctor at all then. See also: privacy, numbers don't tell the whole story, I thought giving consent to be part of a study was an ethical mandate, and maybe if she could choose the best tools for her those outcomes would be better and we wouldn't have to improve her care plan.
And what about innovation? I'm worried that if there's no competition for customers, because customers don't have a choice, companies won't invest in research and development. Until Tuesday we were keeping our eye on Tandem. We were interested in the pump and in any technology they might develop in conjunction with Dexcom. We're not due for an upgrade anytime soon, so these were fleeting thoughts. But the speed at which so many companies seemed to be innovating made us very interested in seriously investigating, and talking with our endo about, a variety of products when the time came. Now it looks like we're stuck with Medtronic who, since we don't have a choice, can provide whatever products it chooses and innovate at whatever speed it chooses.
I'm worried, in what is now broadening out to a philosophical way, about the state of the healthcare system in our country. How, in what's billed as the most technologically advanced nation in the world, are people stuck with no choice in the technology they can use? How, in a free market economy, can we accept losing the freedom to choose our own products? How, in a nation of checks and balances, have we gotten to the point where giant corporations have control over our personal health?
I'm worried.
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| I was grateful last night to have chosen this technology, when I was able to use the meter remote to deliver a correction bolus to my sleeping child from across the room. |
Dear United Healthcare
Dear United Healthcare,
You have been our family's insurance provider for the past 10 years. I have repeatedly sung your praises regarding the coverage you provide for my daughter's diabetes supplies. Our coinsurance costs are minimal compared to what so many other people pay out of pocket. We've had choices of insulin, glucometers, equipment companies and medical providers. We've appreciated that. These choices have allowed my daughter to thrive and to manage her diabetes at the same time.
Today I learned that beginning this summer you will only contract with one insulin pump company. It is not the company we've been getting insulin pumps from since my daughter was 2. It is not the company we chose after exhaustive research with our health care providers. It is not the pump the endocrinology team recommended because its insulin delivery format was different from others and therefore a better fit for the patient. It is not the product we use because we find its features make diabetes as easy to manage as possible. It's not the tool we have spent 12 years learning to use as a substitute for my daughter's pancreas.
Diabetes management is a unique process. Every person using a pump is using it differently. People deliver different doses when they eat or correct high blood sugars. People program different basal rates based on a whole host of physiological and personal factors. People use pump features, many of which are very different in different brands of pumps, to tweak those doses and basal rates based on their very unique personal needs. Changing access to features people use to manage their disease well will, logically, lead to them managing it less well.
I'm grateful to hear that this new rule will not (yet, at least) apply to pediatric patients. I also understand that you will provide exceptions to the rule should a physician certify a particular pump as medically necessary. Yet the reality is that most of your customers will no longer be able to choose the tool they are most comfortable using all day every day to keep themselves both alive and healthy.
I've always assumed that the good coverage you've given for diabetes care in the past came not from a place of benevolence but from an understanding that giving the patient the best tools to manage diabetes at home leads to fewer hospitalizations and fewer larger long-term health issues. I hope this is not the first of other roadblocks you intend to put in the path of patients who are thriving with the tools they have. With less effective tools people will, logically, manage diabetes less effectively. That seems like a big price to pay for short-term financial gain. For the benefit of all of your customers with diabetes, please reconsider your agreement with Medtronic and the philosophy behind it.
Sincerely,
Your Previously Happy Customer
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| We love the tiny basal increments, the meter- remote feature, the way the temp basal works, the customer service, that it's waterproof, and that we're so familiar with it now that we can use it in the dark. Please don't take it away. |
Bits and Pieces - Catching Up Before Looking Ahead
This NPR podcast entitled, 'The Robot Vacuum Ate My Pancreas,' tells the story of Dana Lewis who invented her own artificial pancreas. Not only is it fascinating to hear that (extremely intelligent, technologically trained) people are successfully doing this, but the piece does an excellent job of explaining her motivation. A comparison of maintaining level blood sugars to trying to keep a car going exactly 70 miles an hour without cruise control was one clever example of how this piece describes the kinds of frustrations diabetes management brings.
The new Miss New Hampshire has Type 1 Diabetes and hopes use her platform to raise awareness throughout her state and during the Miss America Competition. Awareness raising is always good in my book.
There was a huge stem cell therapy conference at the Vatican last week which received press in the mainstream media. The attendees were addressed by both the Pope and Vice President Biden, along with many others. Diabetes and its community of advocates were well represented along with a multitude of other issues stem cell therapy may eventually provide help for. The conference was designed to encourage collaboration between scientists using similar technology to treat different diseases. You can sample the conference and its media coverage via the twitter feed.
Diabetes Blog Week is coming! The week runs from May 16-20th with wildcard topics for those who want to keep going into the weekend. I'm excited to respond to the prompts, and to read the thoughtful posts they're likely to evoke.
National Nurse's Day is this Friday, May 6th. Our school nurse will get a bottle of Bath and Body Works' Stress Relief Hand Sanitizer, and a card from us. Don't forget the nurses who are important to you!
In my daughter's little world this month will bring big events like the annual standardized tests, at least 4 birthday celebrations, the 8th grade semi-formal dance and an all day music field trip which includes both performance competitions and time at an amusement park. These should all prove to be incredibly exciting. Will diabetes cooperate? Stay tuned for details!
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