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 12, 2020

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 12, 2020. (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, 2020

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:

  • DiabetesMine’s words 
  • A Sweet Life’s words 
  • Kerri Sparling of Six Until Me’s words
  • Stephen of Happy-Medium’s words
  • Rhonda of Fifteen Wait Fifteen’s words
  • Diabetes Daily’s words
  • Heather of Unexpected Blues’ words
  • Kelly of Diabetesaliciousness’ 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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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.

Why Clinical Trials Matter To People With Diabetes

819412_43058630Clinical trials means better drugs and devices.

Better drugs and devices mean better treatments.

Better treatments mean longer, healthier lives.

Longer, healthier lives means more time with the people you love.

Clinical trials = love.

Clinicaltrials.gov is the first place to look to see if there is a clinical trial you can participate in that happens to be in your area.

Want a little nudge?

Click on this link for all open clinical trials in the United States with “diabetes” as the keyword.

Click on this link for all open clinical trials in the United States with “Type 1 diabetes” as the keyword. (There are currently 428 studies available.)

You can modify your search and pick your state (heck, if you are out of the U.S., there are still studies you can do). Some areas have more opportunities than others, but this is your chance to get involved and help all people with diabetes. I’ve done clinical trials and am always on the lookout to do more. Why?

Clinical trials = love.

Our very good friends have a child with cancer. This child was being treated with high-dose chemotherapy and developed a life-threatening liver issue. The only treatment that gave them an option was through a clinical trial. That clinical trial saved his life. In participating in the trial, his results will help pave the way for better treatment options for others. He didn’t have a choice (thankfully the clinical trial was available), but we have a choice right now to help others.

Clinicaltrials.gov is a crappy website. Yep. There. I said it. It’s not user-friendly, but it does provide you with all of the information you need. And you can look at it anytime because they’re constantly updating it. For ALL disease states, not just diabetes.

Want to Participate?

Once you’ve found a study that you might want to participate in, you’ll need to check the “inclusion criteria,” which will tell you whether you not you’re a candidate. Some are specifically by age range, some may exclude those who have had illnesses, and others must have individuals in a certain weight range or HbA1C range. If you meet the criteria, you can contact the study coordinator and get more information.

Some trials will provide not only the medication or device during the trial, but medical team appointments and travel/monetary compensation. You can be altruistic AND help yourself at the same time!

If you see your medical team at a research center, ask them if there are any clinical studies that you can participate in. (You never know!)

Also, if you happen to be in the Chicago area and meet the criteria, here’s something that you can do to help…

Research Study for Young Adults with Type 1 Diabetes at University of Illinois Chicago

If you are 18 to 30 years old with Type 1 Diabetes, using an insulin pump, not working Evening, Night or Rotating Shifts and willing to participate in a research study then you may be able to help!

Research activities will include: 1 hour visit for health history and physical, wearing monitors to measure activity & glucose and an overnight sleep study.

Research Related activities will occur at: UIC College of Nursing (845 South Damen StreetChicago, IL 60612) and UIC Sleep Science Center (2242 West Harrison Street, Suite 104, Chicago, IL 60612)

Participants will be compensated for time and travel.

If interested please contact the Principal Investigator, Sarah Farabi (email: sschwa24@uic.edu or phone: 312-413-0317)