A House Divided…

Symbol home from hands isolated on whiteWhether you want to attribute it to Lincoln’s famous speech regarding slavery or a line in the New Testament (Mark 3:25), I’m repeating it for all of us to hear:

“A house divided cannot stand.” 

I have diabetes. It’s an insipid disease that slithers into lives, laying waste and fear in its wake. It cannot be compared to other diseases; it’s unfair and pointless. Moments are stolen from all of us who live in the shadow of its open maw, and sometimes not just moments, but the very breath we draw.

It does not matter what permutation of diabetes exists in my body. In every form, regardless of subset, the insufficient supply of insulin damages cells and organs and brains. Depending on the insufficiency, the damage can be rapid or so slow that it’s not noticed until well after the damage is done.

Every person with diabetes is at risk for stroke, heart disease, retinopathy, blindness, kidney disease, neuropathy. Every person.

Every family with diabetes is subjugated to stress, heartache, frustration, and financial burdens. Every family.

The Divided House

I am a member of the diabetes community. Anyone who lives or cares for someone with diabetes is a part of the community. We all want the same end result: long, healthy lives free of the burden of this chronic illness.

Some of the community focuses their time and effort on cures. Others on technology. Emotional support. Financial issues. There are many avenues this community travels down together. All are worthy when the goal is to help make our lives better.

But this community, this house I love, is a house divided.

Over the past few years, as voices amplify with the Internet’s loudspeaker, the rise of separatist factions is coming to bear. Here are the voices from the crowd:

“I’m sick of the public thinking I’m Type 2.”

“Those people could have just not gotten fat and they wouldn’t have gotten Type 2.”

“Type 1s talk about how hard it is, but they don’t realize that Type 2s struggle too.”

“My son did nothing to deserve getting Type 1.”

“I’m thin with Type 2, but people think that it’s lifestyle, not genetics that got me here.”

“I’m not like them.”

 But you are. We all live in this house.

The Numbers Don’t Lie, But They Are A Little Fuzzy

Here are the latest numbers, taken from JDRF’s General Facts page and the National Diabetes Statistics Report 2014 from the CDC. (It’s pretty. With graphics. And it’s a PDF so you can print it out and put in on a bulletin board. Or maybe that’s just me.)

Who Lives In Our House

29.1 million people have diabetes in the United States.

21.0 million of them are actually diagnosed. The rest (8.1 million, because that’s easy math for me to do) is undiagnosed. People walking around with slightly elevated blood glucose levels… enough to do long-term damage.

3.0 million of those diagnosed with diabetes are Type 1. (Only about 10 percent of the total diabetes population.)

The dollar cost of diabetes, direct and indirect for 2012, which is the latest stat, is $245 billion. (The indirect part is work loss, disability, and death.)

The numbers are fuzzy because we don’t look at the big picture. What does this house look like? Is it a duplex with no way to help each other if someone needs support? Is it an apartment building with tiny boxes for parents of T1s, T2s, adult T1s, undiagnosed/pre-diabetes T2s, Medicare recipients, uninsured, and T2 kids all coexisting and trying to get landlord’s attention?

Our House is Getting Crowded

1429629_22426307Every thirty seconds, we get a new member in our house. Every thirty seconds, someone in the United States is diagnosed with diabetes. We need a stable house with a firm foundation, because we need more room. The rate of diabetes is not decreasing; it’s increasing.

Without strong, unifying voices, we’re going to be fighting over who gets to use the remote control or who hogs the bathroom in the morning.

Step outside of the house and go stand on the sidewalk. How do you think our house looks like to a passerby on the street?

  • Is the exterior a hodgepodge of different colors, because we couldn’t decide?
  • Are windows boarded up because a particular group doesn’t need the sunlight shining on them?
  • Do we have an inviting path to greet everyone who knocks?
  • Is there a beautiful, intricate melody with different voices singing the same song, but allowing each group an opportunity to solo… but the chorus is the same? Or does the world hear cacophony? Or worse… nothing at all because we’re all just whispering different things?

I do not want a diabetes house divided.

I want a diabetes home.

Home, Sweet Home

1278626_89193909How can you help make our house a home?

  • Educate the public about diabetes: the differences AND the similarities between the different types. (Get educated yourself by reviewing the statistics and the research and the information that many major diabetes organizations provide to help explain.)
  • Let your policymakers know that it doesn’t matter what type of diabetes we have; we ALL matter when it comes to funding and public policy. There are bills being introduced on the Hill and in some states that can help – or hurt – people with diabetes. Find out what you can do. Even if you’re a Type 2, you can lend your support and your voice to CGM Medicare bill.
  • Ask people to describe their diabetes when you’re having conversations. If you (or your child) has Type 1 diabetes, learn from a person (children get Type 2 as well, although it’s not as prevalent) with Type 2 about what they do every day to live well with diabetes.
  • Focus on what is important: life WITH diabetes, not matter what Type, deserves attention and respect. In fact, we all as humans deserve attention and respect. Find the common ground and even if you don’t have much common ground, there is a piece that we can all build from…

Help build our community.

Help build our home.

Help make a home for everyone impacted with diabetes and let the world know that we are united.

 

Diabetes Diagnosis Increases Psychiatric Disorder Risk

KONICA MINOLTA DIGITAL CAMERAI understand that scientific studies must be completed so that it can become more than anecdotal evidence. These studies need to be published in reputable academic journals, showing the researchers have followed the proper protocols to get to the conclusion.

But for this latest study, I could have saved everyone a lot of time and money.

This starkly titled study was published on February 3, 2015 in ADA’s Diabetes CareRisks of Psychiatric Disorders and Suicide Attempts in Children and Adolescents With Type 1 Diabetes: A Population-Based Cohort Study.

A large study in Sweden assessed children diagnosed with T1 diabetes and their healthy siblings over a longitudinal study (and also combined a comparison to the general population). Upshot? Here it is:

Children with type 1 diabetes are at high risk of psychiatric disorders, which seems to be a consequence of the disease rather than due to a common familial etiology. The results support recommendations on comprehensive mental health surveillance in children with type 1 diabetes, especially in recently diagnosed children.

In their research, the investigators found the risk for psychiatric morbidity tripled in the first six months of diagnosis. Even long-term, it was still twice as high for the entire observation period compared to the control subjects. I could have told them that.

No Surprise

For a child, a Type 1 diabetes diagnosis is traumatic. (Yes, it’s traumatic for the whole family. Let’s focus on the kid right now and what she/he thinks.) You go from being fine (or your concept of fine) to being told that you have an incurable disease that you can, at best, manage well enough to avoid major complications. Of course, you’ll have to be diligent, stab yourself with needles and lancets, and despite your best efforts, you may still get complications. You tell me if that would send you to your happy place…

I was diagnosed in 1983. Less than 24 hours after my Type 1 diabetes (it was called juvenile diabetes back then) was confirmed, I was in Joslin Clinic’s inpatient Diabetes Treatment Unit where I spent 11 days being indoctrinated. I was too busy learning about insulin and exchanges and sick day rules to really think about what the long-term impact on my life would be.

When it overwhelmed me, it wasn’t in the first six months. In my experience, my medical team and my family worked hard to prepare me for the long slog ahead to the best of their abilities. I know that I was loved and that I was educated in my disease. It took a year and a half, away from my family for an extended period of time on my own.

After the “novelty” of this diagnosis wore off, my head went to very dark places. I would have gone spelunking because I was a teenage girl, but diabetes gave me exclusive entry to depths that most kids don’t reach. Instead of crying over a crush, I was crying over a shortened life span and all those complications that everyone’s grandmother had. Guilt over blood sugars and A1Cs and feeling judged had me questioning my self-worth. My inability to get my blood glucose levels under control (thank you, puberty) for very long played a part in how I felt day-to-day. How the hell was I going to do this every day for the rest of my life?

We Can’t Do This Alone, But We Are Alone

898781_96304223I’ve never kept my bouts of depression a secret. It is liberating to talk about the things that scare you, as long as you know you feel safe. I have had some incredible medical professionals who have led me out of the dark places. I have some wonderful fellow T1 talkers who shine the light on the strong connection between T1 and depression. We can’t do this alone. It’s exhausting. And terrifying.

You can have the best cheerleaders on your team, but they’re not going to win the game for you.  (That’s as close to a sports metaphor as you’ll get on this blog. Go team!)

 

Parents go through their own private hells when a child is diagnosed and I encourage any family to get counseling to talk through the tough times. (Think about the siblings who can become jealous because the T1 kid gets all the attention. I’m grateful that my brother wasn’t like that – at least that I know about.)

But in the end, it’s us. We are alone. The Type 1 child, no matter how protected, loved, educated, watched over… when we close our eyes at night, we think. And dream. And wonder. Sometimes, we travel to dark places. Some of us don’t want to come back. And that’s when it’s crucial that we have people who help us.

Researchers needed to do the studies to tell the medical community what we’ve been telling them for years. It’s not all in our heads. We are at risk simply because we have diabetes. We need a holistic medical team for every T1 child (and dare I say it, T1 adult): someone to teach us how to use insulin and count carbs and someone to teach us how to live our lives with diabetes in a healthy way – body and mind.

If you (or someone you know with Type 1 diabetes, especially those who are newly diagnosed) need help, please… talk with your medical team about your thoughts. There are options and support groups and professionals… For your children who have been diagnosed, please understand that no matter how much love you show them, they may need outside help that you can’t give. That’s OK. Really, it is. 

Snap Decision

You grab a pack of gum at the checkout counter. It’s an impulse purchase and you don’t think about it. It’s a snap decision, made right then and there.

Choosing an insulin pump is anything but a snap decision. You research all of your options, talk with other people who wear pumps, weigh the pros and cons of each pump, and of course, find out if insurance will cover your pump and supplies.

In my case, my insulin pump choice was a snap decision. With a capital S.

unnamed-3The Asante Snap pump. 

After my warranty expired on my previous pump (Of course, it was pining for the fjords five weeks later.) and an opportunity to try the next generation of that company’s pump, I recognized that I needed to do further investigating. I’d only worn two brands of insulin pumps in the over 15 years of pumping. I am still happy with the choices I made back then, but back then, I didn’t have a lot of choices.

I cheer the fact that we have more choices now when it comes to insulin pumps and continuous glucose monitoring devices. Each pump and CGM has its strengths and weaknesses, which of course, means that some people will choose them based on their own needs, wants, and desires.

Here’s why I chose the Asante Snap Insulin Pump.

I Am Ricardo Montalbán

You can’t “test drive” a piece of gum. You buy it and if that new flavor isn’t what you wanted, you throw it away or foist it off onto someone else. It’s gum, right? Costs a buck? Pshh. Get outta here.

But it’s rare (or in some cases, impossible) to test out an insulin pump. This device is going to be a part of your life for a hopefully good, happy, healthy long time. And it’s not cheap. You choose a pump based on what you think it will do for you, go through the hoops (and oh, are there big, flaming hoops!) to get approval from everyone involved, only to find that… you hate it. I know some individuals who have returned their insulin pumps before the “trial” period is over, but it’s a big, ugly hassle and insulin pump companies don’t make it easy.

Asante gets that you should be able to take a pump for a test drive. Feel the rich Corinthian leather seats. Determine if what you want is what you actually get. They offer everyone who is interested in trying the Asante Snap pump a four-week free trial, including supplies, training, and support. I got to sit in the driver’s seat and go for a long drive. I wish all pump companies would do the same.

No More Rebel Yell Time In Range!

The four-week free trial is one thing. It’s another thing entirely when you discover that by not changing a single basal rate or bolus factor, that your time in range with your blood sugar skyrockets. (And when I say skyrockets, I mean supersonic space age shiny skyrockets.) Having the luxury of a Dexcom CGM allows me to see how my blood sugars play nicely (or not nicely) during the day. I was doing a lot of Billy Idol hair spikes. Without changing my eating habits or dosing timing, I saw spikes turn into smoother lines and when I downloaded my Dexcom (Finally able to do it on my Mac!), I was shocked. 80% time in range (for me, range is 70 – 180, but I’m already tightening the higher end).

Less lows. Less highs. All of a sudden, I wasn’t exhausted at the end of the day, chasing the blood sugar dragon. My head was clearer. I had energy. I thought it was a fluke, but after almost 8 weeks on this pump, I’ve come to realize it’s two things: the Asante Snap pump algorithm and the pre filled glass cartridges making this happen. I can’t take any credit for better blood glucose levels.

 Heart of Glass

The pre-filled glass cartridges not only help the insulin not degrade and lose potency as quickly as the plastic cartridges I once had to fill; it also cuts down on the time I used to fiddle around with pump  set-up. Doesn’t seem like a big deal, right? It’s a big deal. You get that I’m a two-minute sort of woman when it comes to diabetes.

Instead of the elaborate ritual of drawing up the insulin into a plastic cartridge, checking for bubbles, filling the tubing, checking for bubbles, priming the pump, checking for bubbles, I drop the cartridge into the pump body and it auto primes. In two minutes, I can complete an insulin pump set up, including a new insertion set. All that extra time I have now? I can rock out. 

(And I don’t have to hunt for a battery in the bottom of my purse. The battery for this pump is built into the pump body. You replace the pump body with the changing of the cartridge. Easy.)

I’m not the only one who thinks this is a good thing. I join Scott Johnson of Scott’s Diabetes, Melissa Lee of Sweetly Voiced and others who have switched from other pumps to Asante. Here’s what some people had to say about how easy it is…

The Little Things Add Up to Awesome

It’s the little things. A customizable color screen. A built in flashlight on the pump for those early morning BG checks. A missed bolus calculation if you stop your pump for a shower. (I never realized how much insulin I had missed even disconnecting for 20 minutes.) The ability to set alarms to NOT go off at 3am to wake you up to remind you to change your cartridge.

Some people prefer an integrated CGM and insulin pump. I tried it.  I’ve come to realize that I’m a Dexcom chick, tried and true. The other pump company with an integrated system has not yet updated its algorithm for increased accuracy. Plus… here’s the thing: The Dexcom G5 screen will be accessible to view on my iPhone I won’t even need to look at my pump to see my CGM graph.

When I was at AADE last summer and saw a glimpse of the future with Asante Snap (I sat next to Wil and we got to ooh and ahh at the demonstration, they announced not only would they be partnering with Dexcom for future upgrades, but they were the first company hooked up with Tidepool. (And you know how much I love them!). And then they blew everyone’s socks off my demonstrating bolusing the Asante Snap from an iPhone. I’ve never had a remote bolus device. I am totally ready for this. And when it does happen, it won’t cost me an arm and a leg (or a pancreas) to upgrade, because upgrades are $99. Straight. No chaser. 

I got to design my Snap. (Well, I got to have input. The Kid actually decided on the colors.)

No Pump is Perfect

No insulin pump is 100% perfect. (If it was, it would be called a pancreas and this blog wouldn’t exist.) I do miss the vibrating alarm option I had on my previous pump. I am a little jealous of other pumps that do have remote bolusing devices. I am a lot jealous of the current integrated pumps and CGM systems that work well. And I can’t upload my data at home; Asante currently uses the clinic version of Diasend.

I’ve talked with the management team at Asante. I’ve asked questions about their future models. They listen (and they even have a patient advisory board so they can get feedback). I see the Asante Snap becoming more perfect soon.

IMG_5863Time. In. Range.

Oh… that time in range. That blissful time in range that makes me feel more rested, less stressed, and looking forward to getting my A1C done. That makes it all worth while.

My new time in range makes my diabetes management easier and less about diabetes and more about me. 

Best Snap decision I’ve ever made.

I talked to Asante so much and gushed about how much this pump has improved my life that I’ve agreed to enter into a consulting agreement with Asante Solutions to write about my experiences pumping on their website. Please check the updated About page  for disclosures. Remember: My thoughts are my own. No one can make me write what I don’t feel or believe in on this blog. In fact, I get zero compensation for this – or any – blog posts on this blog. This is MY blog. MY words. MY thoughts. You get to read the uncensored version – always. 

The Diabetes UnConference DEADLINES

Hi, you.

Yes, you. I’m talking to you with the diabetes.*

Wanted to give you a quick update on what’s going on with The Diabetes UnConference. (And if you don’t know what it is… please go to www.DiabetesUnConference.com and learn about the first multi-day peer-to-peer idea exchange for ALL adults with diabetes (Type 1, Type 2, Type I want to talk about my diabetes…) being held at the Flamingo Las Vegas from March 13 – 15, 2015.

Room Block Deadline: February 10, 2015

1145DB10980204DD1A48CB84162B3570Book your room now.

The super-duper low room rate at The Flamingo Las Vegas, where the conference is being held, is only available until February 10, 2015. (This means you can count the days left on two hands if you have all ten fingers. If you don’t, well… borrow.)

After that, they release the room block to the hoards of basketball fans who will descend on Las Vegas for March Madness. (We root for Team Diabetes UnConference. We are undefeated.)

Don’t get caught paying a stupidly high rate for a room that you can get for a song (if that song costs $69.00+applicable tax and fees) through The Diabetes UnConference room block. Check out the information about The Flamingo Las Vegas here. And book your room here.

Attendee Registration Deadline: March 1, 2015

un-diabetes-conference-fullcolor-iconEven if you aren’t planning on staying at the hotel, please register by March 1st. We won’t be able to accommodate walk-ups, as head counts must be given to catering and for the incredible Dexcom sponsored High Roller event. I would hate for anyone to not be able to participate because they waited until the last minute. I can’t “squeeze you in”. Don’t miss out.

Why Should You Come To The Diabetes UnConference?

You can learn why I think you should come. Watch this interview where I make a lot of funny faces and answer questions (thank to TuDiabetes for the hilarious chat!):

Of course, you don’t have to take my word for it. Take their words:

We want you to be there. We want you to feel like you can talk openly about diabetes without judgment and learn from others. We want you to join us for the crazy, zany, beautiful things that will happen.

Don’t miss out. We don’t want to miss you. 

*And you with the desire to help those with diabetes. We love you, too. While you can’t join us this year, you can help spread the word. Don’t worry… we have plans for you to come next year!

un-diabetes-conference-fullcolor-h

You Deserve More Than Roses…

1526731_10153042281067328_1047114686242280778_nI hear her laughter and my heart swells with love.

I cannot imagine my life without my daughter.

I cannot imagine my life without the insulin that keeps me alive so that I can hear her laughter.

And yet… there are children in the world who do not have access to the insulin that will keep them alive.

No laughter.

No life.

No more. 

In parts of the world (some closer to the U.S. than you think), there is a problem getting insulin to children.

Lack of access to insulin remains the most common cause of death in a child with diabetes (Gale, 2006). The estimated life expectancy of a child who has just developed diabetes could be less than a year in some areas (Beran et al, 2005). Many die undiagnosed, others through lack of insulin or lack of expert care. In some countries, expert care is available but resources are limited and so early and serious complications frequently lead to death in young adulthood. – IDF

We know that insulin is expensive in the United States, but for some families in the world, the cost of insulin is more than a family will make in an entire year. And you know what can change that?

Us. 

roseFor the past few years, the Spare A Rose, Save A Child online campaign has helped to raise funds for the International Diabetes Federation (IDF)’s Life for a Child campaign.

Life for a Child began over a decade ago and gives donor funds directly to diabetes centers around the world, getting children insulin, test strip supplies, and care to help these children live… and laugh.

How Can You Help?

Valentine’s Day is coming.

Flowers are pretty. Chocolates are nice. Perfume smells lovely (Sometimes.)

But flowers wither. Chocolates get eaten. Perfume wafts away into the air.

You deserve more than that. 

Five dollars.

The cost of a single rose. Or a very expensive piece of chocolate. Or a few spritzes of perfume. (Or even that teddy bear that gets purchased at the gas station on the way home.) Five dollars gives a child with diabetes in an underdeveloped country a month of life.

Let those who love you know that you’ll take one less rose. One less piece of chocolate. Skip the spritz. You want them to give five dollars (or more) to the Spare A Rose, Save A Child campaign.

You can have them donate once or… they can remind you that you are loved throughout the year with a monthly gift to the program. You get a sweet acknowledgment and the knowledge that you are helping people all over the world hear a child laugh.

Want to get your office in on the action? Done. Easy-peasy-give-insulin-to-kids-squeezy.

Your donation is tax-deductible. (So, for those of you who are romantic AND financially savvy… you can say I love you and write it off. It’s still sexy.)

What About People YOU Love?

And of course, think about the people YOU love. You can donate in their name, then print out this card (or the other one) to let them know you love them more than roses.

You love them more than life itself. 

Click here to give life for a child. 

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