Tagged: CGM

I Don’t Expect You To Know…

1436093_55811447My car runs on unleaded gas. It goes from point A to point B (and sometimes to point H when I don’t follow the GPS correctly) and it has an engine. I understand the basics of internal combustion and in my more adventurous youth, I even changed my spark plugs and oil on my own. (I think every woman every person should know how to do that.)

I drive it with the knowledge that I don’t know everything about how a car works. I watch Top Gear (the U.K. version, of course), but that does not make me a gear head. There’s a lot I don’t understand about cars.

I’m not expected to know; that’s why expert mechanics exist. If it makes a funny noise or squeals as I brake, I take it to someone who can diagnose the issue and hopefully fix it without putting me into hock. Even people who change my car’s oil may not understand how the engine works or what that funny noise is.

Replace car with diabetes and other appropriate phrases related to a disease. (Heck, if you want to go for broke, you can replace car with any major illness.)

Now re-read those first two paragraphs.

I Don’t Expect You To Know…

I don’t expect you to know how diabetes works (or doesn’t work). There’s a lot of moving parts to the intricate dance we do each day to get from Point A to Point B (and we sometimes end up at Point H without any idea of how we got there). I don’t expect you to know how I feel when my blood sugar is crashing to the floor or soaring towards the ceiling; my symptoms and side effects are unique (although many share the same symptoms and side effects). I don’t expect anyone to know what the diagnosis signs are or how they can help me, and millions of other people, live well.

All of this to say: Let’s stop berating others if they don’t know about diabetes, especially those in the medical field. Sounds crazy, right?

“What do you mean the ER nurse didn’t know what a CGM is?”

“The optometrist asked you what your blood sugar was this morning?”

“The doctor wanted to take your insulin pump off in the hospital?”

“The LPN told you that she has diabetes, too, when she saw your medical alert bracelet, but that hers wasn’t severe?”

“The nurse said that they’d give you insulin just when you eat, but no basal insulin at all?”

We are the experts…

We are the experts. We live with this disease 24/7/365 ad infinitum. Most of the medical world hasn’t had more than a mention of diabetes in a class for their certification or degree (with the exception being CDEs and endocrinologists). Are you amazed at that?

This is the curriculum for a BS degree in Nursing at NYU. There isn’t a single “Diabetes” class in their four year program, either as requirements or electives. Would it shock you to learn that, according to a Diabetes Care journal article in 1990, 20% of nursing faculty surveyed said that their students had 0 to 8 hours of clinical experience with diabetes patients during their education? (And most of those patients were over the age of 65?)

269548_4087We have a choice…

When we encounter someone (in the medical field or in public) who doesn’t understand what diabetes is or has a misperception of what we do every day, we have a choice. We can express incredulity at their lack of knowledge and become defensive about our disease, or… we can educate them. 

“The ER nurse didn’t know what a CGM is?”

Nope, because when she went to school, CGMs didn’t exist. And really, the majority of people with Type 1 diabetes don’t use (or don’t have access to use) a continuous glucose monitor. So, those who do use them are a subset of a subset of a large group of people with diabetes. A simple explanation of what a CGM does and how it helps you prevent hypoglycemic or hyperglycemic episodes can go a long way to not only educate that ER nurse, but perhaps create an ally or future advocate in the ER for diabetes.

“The optometrist asked you what your blood sugar was this morning?”

Yep, because even if you put that you’re Type 1 on your intake form, they don’t know how often you check. You can simply smile, explain that while you checked this morning, you’ve also checked twice (or six times!) since then. You can talk about the difference between Type 1 and Type 2 and that all people with diabetes can get the same eye complications. (Retinopathy and macular edema doesn’t discriminate between types.)

“The doctor wanted to take off your insulin pump in the hospital?”

If you’re wearing an insulin pump, you may know more about diabetes than that doctor. You can begin a dialog as to why the insulin pump needs to be removed. They may not understand the technology - and it’s up to you to explain that your pump supplies a basal rate and boluses when needed. However, if you’re in the hospital because of DKA or a severe hypoglycemic episode, the pump may be the issue. Have the conversation - a two-way conversation - and ask that your endocrinologist or a hospital endocrinologist be brought in to consult.

(Side note: That all being said, if you encounter an endo or a CDE who doesn’t understand the basic mechanics of diabetes, please run, do not walk, out of that office.)

When people say things that make you angry because it’s clear that they don’t understand diabetes, take a breath and remind yourself that you didn’t know much (if at all) about this disease before you were diagnosed. It’s frustrating when you encounter someone in the medical field who may not understand, especially because they are dealing with you. They just haven’t been taught. Yet.

Teach…

We can’t expect anyone to know, but we can expect everyone to learn. And if we want everyone to learn, then it’s up to us to be knowledgeable about diabetes and the devices that we use. We should be able to explain in simple terms and invite questions. We should be able to ask our own questions and be our own advocate. We should be able to smile and talk about the differences between types of diabetes and explain that there are more that the types have in common than separate them.

We won’t change the world overnight, but imagine if you could calmly explain the disease to someone and walk away knowing that they’re a little more knowledgeable about diabetes? Or give them websites so that they can learn more?

Sounds crazy, right?

Let’s be crazy.

 

 

 

As A Jaybird

1051853_45298648Naked.

Completely naked.

As a jaybird. (That’s a saying that I heard as a kid, and here’s the saying’s origin.)

It’s rare that I get to be completely naked. You know what I mean. No insertion set. No CGM sensor. Nothing extra to hold or unconsciously shield against doorway scrapes or zippers.

I change my insertion sets every three days and my CGM sensor every ::mumble mumble:: (as long as I can get it to last, but you know, officially it’s seven days…), so it’s not often that both attached to my body items are missing.

I had snuggled under the covers, having done my last BG check of the day and put my Dexcom receiver next to my head. As I slid my arm under my pillow, I felt the tape give way.

“&$#(*^*!”

It was a beautiful run with this sensor (not just for the beautiful graphs for the past weeks, but accurate from start to untimely demise). Nighttime lows are becoming less frequent (and less severe) for me, although I tend to skim the bottom line of my low alert if I’m not careful. Having the Dexcom off my body at night is foreign these days, but I was cozy and comfy and sleepy. The Kid woke me up at 3am. She acted as my backup CGM (she just didn’t know it) and I sucked a juice box down and woke up at 74.

Raise your hand if you feel strange too when you rip that insertion set off your body before a shower!

There’s a moment of “I have nothing foreign on or in my body.”

There’s a moment of “It’s just me.”

There’s a moment of “This is what it used to feel like all the time.”

Then there’s a moment of “I’m glad I have the tech that I do have.”

The stars align sometimes and I feel free from the physical burden of diabetes technology that keeps me safe and healthy and alive.

I also feel naked without them.

As a jaybird.

My Affair With Earnest Hemingway…

1336773_53028368My affair with Earnest Hemingway is neither about love, nor about hate.

It is about his paucity of words and the emotions you must mortar into the cracks of his meanings.

It is about his inability to end a story (or even his life) with any hope or joy.

It is about his words that slip beneath my skin to leave me shivering.

It is about how I abhor reading the words he wove together and yet, a quote he gave has shaped my life and aptly explained my last few weeks.

Not Reading It Again

I was subjected to Old Man and The Sea twice in high school, pulling apart overarching themes and writing trite, hackneyed literary criticisms just like every other teenager. Why twice? Three high schools in four years means forced rereading of a few books. (MacBeth was a three time winner - middle school gave me a head start, Midsummer’s Night Dream was also twice, but thankfully, Crime and Punishment and a list of Russian names written down for reference was, thankfully, devoured only once.)

Upon reaching the third high school in January of my junior year, my English literature teacher handed the book we would be reading next. Old Man and The Sea. I handed it right back.

“I’m not reading it again. I’ve read it twice. Hated it twice. Dissected it twice. It’s depressing. Give me something else to read and I’ll do a separate assignment.” (Yes, even as a teenager, I was… is pushy the right word?)

So, my teacher brought in his personal copy of A Farewell to Arms by Ernest Hemingway for me. In retrospect, I think he did it to spite me. “Old Man and The Sea is depressing? I’ll show you depressing.” I read it and neared the end, clutching that tatter of hope his characters created for themselves.

Hemingway is an ASS.

If you were in my neighborhood as I read the last two pages, I apologize for the angry screams of: “COME ON! SERIOUSLY?! Hemingway is an ASS!” I stomped into class the next day, threw the book on my teacher’s desk, and muttered: “This sucked worse than The Old Man and The Sea.”

To this day, I have yet to read any of his other works. Don’t ask me to do so. There are many other pieces of literature that can depress me, but none with the compact, gut wrenching nature of his view on life. I get enough of that already from reality. (Lest you think I like sappy, happy movies or books… I abhor those, too.) One day, perhaps, I will have the strength and resolve to read the rest of his painful brilliance. For now, they wait.

But… he said something that, if I had any desire to tattoo my body, would be inked across my chest:

“The world breaks everyone, and afterward, some are strong at the broken places.” - A Farewell To Arms

COBRA

Over the past few weeks, the world did its best to break us. Two weeks after meeting our high deductible health plan’s deductible, John’s company surprised a few people by laying them off on the last day of October. Surprise! Including John.

All of the benefits: medical, dental, etc. was terminated “on the last day of the month“. That meant that day. My supplies (and new Dexcom transmitter) hadn’t been ordered. And I couldn’t get them ordered in time before the end of the day. OK, I thought. Breathe. I’ll just order them all when we purchase COBRA.

We’ve purchased COBRA before, but when I called to find out the cost, it was outrageous. Laughably outrageous. The representative gave me this advice:

“Purchase everything out of pocket and keep the receipts; if the total for the month was higher than the cost of COBRA, go ahead and pay COBRA and you’ll get reimbursed.”

We started to investigate other options, including Healthcare.gov’s plans for our state and found that those plans were better - and less expensive - than what we were paying if you factor in the high deductible. Yes, I know all about the pre-tax blah blah blah, but it was frustrating to think that we could have avoided the shenanigans with medical decision making this year if we had just eschewed his company’s crappy medical insurance plan and gone with a marketplace plan.

The World Breaks My Technology

A week later, my Dexcom transmitter died. It was a slow death and I knew it was coming, but when it finally shuffled off its digital coil, it was still jarring. It also felt like it said: “HAHA, I knew you didn’t order a replacement before your insurance kicked it!”

I went without, reminding myself that I went without continuous glucose monitoring for years. Of course, every time I checked my blood sugar, all I could think was: “What would the arrow say?” Blood glucose checks increased, but I felt unsure. I felt high, but I was within normal range. I felt shaky, but I was slightly high. Adjust, check, adjust, check. I didn’t trust how I felt. For good reason.

Et tu, Brute?

Then, in solidarity, my insulin pump died. Four weeks and two days out of warranty. I hadn’t ordered a new one because… you know the story. Deductible. Crappy coverage. It happened on a Friday night while I was across the country, but if your pump is going to stop working, it should stop working while you are standing with other Type 1s at the Diabetes Mine Innovation Summit.

“What the hell? I can’t bolus. Look!” I showed the pump to the group and the troubleshooting suggestions started to fly fast and furiously. “Try this!” “Take the battery out and see if it will reset!” “Let it time out and see if that will do anything!”

And then…

“It’s says Button Error.”

The groan was collective. In the fifteen years of pumping insulin, I had never had a catastrophic failure. And of course, with my head being not in the game, when I packed, what was the one thing I didn’t bring? The back up bottle of Lantus. My head started to go down the rocky road of microbolusing or finding an open pharmacy or spending time on the phone with the pump company begging for a loaner when one of the people standing in the group who uses the same pump as I do said something amazing:

“I have an extra pump that I travel with. You can borrow it.”

Do you know how hard it is to program an insulin pump with tears of gratitude in your eyes? Less than an hour after the failure of my pump, I was pumping again. BG upon reconnecting? 126. (I thought I was high. I felt high.)

Fortunately, my blood glucose monitors are holding steady. They obviously hadn’t gotten the memo that John had been laid off.

Suck It, Hemingway

Ernest thrived on making people miserable and ending his stories on a sad, introspective note. I’m no Hemingway (says the verbose woman writing this blog) and so the end of the story will be a happy one.

  • John recently accepted an offer for a better job - better pay, closer to home, doing what he loves.
  • Because I had done homework on Healthcare.gov, I was able to look at the medical insurance offered and decided we would choose a marketplace plan that is more expensive, but has better coverage - way better coverage and NO deductible for durable medical equipment. (I did a lot of homework, calling an insurance specialist and getting the answers about insulin pump and CGM coverage. It does pay to do your homework.)
  • The DOC (Diabetes Online Community) and the diabetes community are filled with amazing people. A friend sent me her transmitter and a few sensors to tide me over. I have had many others offer to help with supplies. I am a firm believer in paying it forward, but never expected to be the one receiving.
  • The posts I wrote about U.S. financial assistance and programs for people with diabetes and if you are a Type 1 without insurance  was meant to help others… but I reread my own words. Twice. Maybe three times. And unlike Hemingway, those words and programs that companies offer gave me hope.

So, Hemingway. You’re right… about (at least) one thing.

The world does break us all. And I am stronger in the broken places.

But unlike the old man and a solitary trek into the ocean to battle marlins and sharks and the metaphors meant to taken from your work, this part of my story ends on a happy note, filled with helpful people and a community that does what it can when it’s needed.

The End

 

 

Sleep And Diabetes: Perchance to Dream?

photo-17She was born five weeks (and one day) early. A little bit of a low blood sugar upon arrival , so she went off to the NICU for a few days. The nurses fought over who could hold her; she was the only baby in an open bassinet who could be picked up.

“We were going to move her to the intermediate care nursery, but she had a brief bradycardia incident.”

As parents who didn’t brush up on the NICU speak before arriving, we learned quickly that her heartbeat had slowed because she forgot to breathe. It’s common amongst preemies, but it’s still a freakout show when you hear that it’s happening to your child. Forgot to breathe? What?!!!! Despite that “brief” moment and a few others just like it, she came home with us 96 hours after she was born. (John and I occasionally raised our eyebrows at each other as we were being discharged. They’re letting us take her? Wait…. we’re not ready.)

The first few weeks postpartum are tough, regardless of how the birth all went down, and due to her feeding schedule (every.two.hours), I was a little extremely loopy. The cycle was feed her, burp her (careful not to pat her back so hard that I knocked her head off, because that was also one of my concerns), put her back to sleep, then pump breast milk for the next round so that I could get some sleep and John (or my parents when they visited) could take over.

I cat napped with my hand on her chest, feeling her heartbeat and her little chest rise and fall. I refused to sleep deeply. She slept next to me within arms’ reach. And I had quiet panic attacks. What if she stopped breathing and I wasn’t there? What if I was sleeping and she needed me?

What if she…died?

No matter what someone else says to allay your fears, there is always that deeply rooted feeling of unrest that claws at the base of your spine. She did not have any more bradycardia moments. She kept breathing.

She likes to snuggle next to me and fall asleep now, and I still find myself watching her little chest rise and fall.

I think I will try to watch that forever.

Yeah, so what does your story about The Kid have to do with sleep and diabetes?

Sleeping with diabetes is like having a preemie. Will I go low tonight? Will I wake up for the low and treat it myself? Will I stay in the low for hours and… I can’t even think about it.

My CGM is the hand on my chest. I have dear friends who have slept through the CGM alarms and have needed help to bring them out of severe hypoglycemia. I know of parents whose fears were realized. There are no words.

For parents of children with diabetes, my heart aches for their fears. Every time the alarm goes off and they check their sleeping child at night, the fear rises. Using CGMs and the jaw-dropping technology of Nightscout, a DIY remote monitoring for Dexcom have helped those parents immensely.

Elizabeth Stone said:

“Making the decision to have a child - it is momentous. It is to decide forever to have your heart go walking around outside your body. ”

She didn’t mention the pancreas, but we get it.

For those of us who have diabetes or have a loved one with diabetes, sleep is not restful. When we do, we dream… of days of freedom from the fear of lows and what those bring. It’s well documented that sleep and Type 1 diabetes don’t go well together:

  • Cardiovascular autonomic neuropathy contributes to sleep apnea in young and lean type 1 diabetes mellitus patients (Sleep sucks because of diabetes)
  • Impaired sustained attention in adult patients with type 1 diabetes is related to diabetes per se (I hate this quote: “Patients with type 1 diabetes have altered sleep characteristics and are thought to have deficits in sustained attention.” I hate it because it’s true.)
  • The Relations of Sleep and Quality of Life to School Performance in Youth With Type 1 Diabetes (Parents, you may want to skip this one if you aren’t feeling particularly happy right now, because it’s downright depressing.)

But there is hope:

  • Impact of continuous glucose monitoring on diabetes management and marital relationships of adults with Type 1 diabetes and their spouses: a qualitative study I love this quote: ‘Both the pump and continuous glucose monitoring have been a godsend for us. Initially, I looked at it more as it was good for her, but in reality, it’s for me because I can wake up in the morning and if I don’t hear that thing beeping or if I wasn’t woken up in the middle of the night, I can let her sleep another hour… It was nice for me to have some way of knowing what was going on…’ (male spouse, age 41 years)
  • Closing the loop overnight at home setting: psychosocial impact for adolescents with type 1 diabetes and their parents (It’s a foregone conclusion that the latest technology like the Bionic Pancreas will help parents and Type 1s sleep better at night…)
10429423_10152665504092328_8015680368277849861_n

3am Hellraiser in pigtails.

There is no magic wand or pixie dust to help us sleep. And sometimes, no matter how adorable they are, they still raise hell at 3am. I know this from experience.

But there are devices/products/software/services that can lessen the burden. And I encourage you… if you haven’t investigated them, check them out.

If you haven’t heard of Nightscout or the #wearenotwaiting movement, get on over to the Nightscout website. Some of the stories of individuals using this will make you smile and make you grateful for the smart people who help us get our data to where it needs to go: in the hands of those who can help us immediately when things go south. 

And then there’s Tidepool. Howard and his team are rocking it big time, working with device companies to make our data readable and workable and easy to understand and I.want.Nutshell. right now.

And, of course, if you haven’t heard about the Bionic Pancreas, well… here. I am a fan. A big fan. Like, Beatles girl screaming and swooning fan. 

 

Two Minute Diabetes Advocacy: CGM Medicare Coverage

708615_95129272It’s time to be a Two Minute Diabetes Advocate!

I’m keeping this short and sweet that you can understand the importance of this bill and take action on it in under two minutes.

Senate Bill: S.2689

‘Medicare CGM Access Act of 2014′

Even if you are a parent of a child with diabetes, this is an action you need to take. (This bill will eventually help with artificial pancreas systems, so it does matter to all of us.)

85% percent of Type 1s are adults. We’re living longer and with less complications. Many of us are headed for Medicare or are already there. It’s shocking to know that if you’re on Medicare, you are NOT covered for a continuous glucose monitor (CGM).

Imagine having a technology that helps you and having it covered by your insurance - and then you can’t get the device or sensors covered because you’re on Medicare.

That’s not a world I want to live in.

So, we’re rising up to support those who can help get CGMs covered by Medicare: U.S. Senators Susan Collins (R-ME) and Jeanne Shaheen (D-NH). Here’s the press release about the introduction of the bill from JDRF. Lots of good info. 

What can you do?

JDRF is leading the campaign. They’ve set up a click to email campaign for your senators. All you do is fill out your info and add a personal message and send it on its way. So…

1) Click here and fill out the email form. 

2) Add your personal message. You can even copy and paste this:

I have diabetes and I am worried about my future. 

I am asking you for your support on this bill; your co-sponsorhip would be even better! Continuous glucose monitors (CGM) have been shown to help prevent hospitalizations and emergency room visits. To not permit coverage of this technology is fiscally irresponsible for Medicare, as it will save money in the long run. 

OR:

A loved one has diabetes and I am worried about their future. 

I am asking you for your support on this bill; your co-sponsorhip would be even better! Continuous glucose monitors (CGM) have been shown to help prevent hospitalizations and emergency room visits. To not permit coverage of this technology is fiscally irresponsible for Medicare, as it will save money in the long run. 

(Skip over the ‘print this message to personalize’ if you want.)

3) That’s it. Go back to your day.

If you’re feeling extra ambitious, share this post with your friends and family and help show the Senate that while this is NOT a cure, it will help those with diabetes live well until there is one. (Click on the email link below this post or share it on FB or Twitter…)

You can also sign this petition from JDRF to Medicare.

Bookmark CGMSafely.com - it’s the latest grassroots advocacy movement begun by the amazing Bennet. You’ll get the latest info and actions on CGM here.