Candy Hearts Blog

It's a sweet adventure full of gluten free goodies!

Candy Hearts Blog - It's a sweet adventure full of gluten free goodies!

Dear New Friend (The one whose child was just diagnosed with Type 1 Diabetes),

Your sweet child (no pun intended) was just diagnosed with type 1 diabetes. I know you woke up today in the haze of this whirlwind, and I realize you may wonder if this is actually reality, or some weird dream-like state of consciousness you never knew existed. Whether you are familiar with what type 1 diabetes is or not, you are probably in shock and doing your best to take in the enormity of the situation without panicking.

In the coming hours, days, weeks, and months you will have information thrown at you from a million directions. When you turn to the internet, it’s possible you’ll end up tripping and falling down a rabbit hole you never saw coming. In this age of technology, there are a million people with a million opinions waiting behind every click. Unfortunately, not all of the information at your fingertips will be helpful — or accurate, for that matter.

2015 marks the 10th year since my daughter’s Type 1 diagnosis. She was diagnosed about three weeks after her 2nd birthday, and we’ve stumbled around this block a time or two. From being told to “suck it up” to a suggestion to try feeding her camel’s milk (because I always wanted a pet camel, right?), I’ve heard a lot of stuff on this journey.

With that in mind, I wanted to give you 10 useful tips (in no particular order) to help you figure out how to plant your feet in the right direction:

BUT FIRST!!!!! This is a long post. I mean…it’s been TEN years for us…so TEN tips adds up. I just want to say that if you don’t feel ready to read this right now, that’s okay. Type 1 diabetes is here. It isn’t going away. You can always come back to read this another day.

1) You will, no doubt, deal with a range of emotions as you go through the motions of adjustment…and beyond. I want you to know that it’s okay if you aren’t feeling “happy happy joy joy” every minute. It’s okay to be angry. It’s okay to cry. It’s okay feel frustration over the financial toll, sleep deprivation, and stressful impact type 1 diabetes will have on your family. Pretending any of that doesn’t exist won’t make it go away. Acknowledging the challenges doesn’t mean diabetes “wins”. It means you’re facing reality.

Whenever possible, face it – don’t fake it. Your emotions are validated. Justified. Heard. But you are also the parent, and that means you won’t allow life to fall apart either. You’ll do what needs to be done — even when you’re feeling down — because that’s how you roll.

{Further reading: I wrote this post detailing my emotional journey when we got to the 5 year mark — now we’re standing at the brink of 10 years, and not much has changed.}

2) There isn’t a magic cure. Well-meaning people will offer up all kinds of solutions to try to help your child. I say “well-meaning”, because I’d like to think they aren’t intentionally suggesting you try things that could kill your child. I won’t link to some of the outrageous propaganda here (because I don’t want to give them click stats, and also because I don’t want to send you down the wrong path), but cinnamon won’t cure your child…neither will any special combination of foods…or eliminating a food group altogether…or trying an exotic essential oil…or giving your child a variety of supplements…or trying a specialized exercise program.

Insulin is NOT your child’s enemy. Insulin is a hormone essential for life-sustaining function. Without it, people die. It is the ONLY treatment available for the management of type 1 diabetes. Remember, prior to the discovery of insulin, T1D was a universally fatal disease. No one survived…despite trying every herb, every oil, every diet, every exercise, every everything…everyone died. No one was spared.

Insulin saved your child’s life too.

{Sidenote: You’re child may enter something called a “honeymoon phase” after being diagnosed. For awhile, it might seem like diabetes has disappeared, but it hasn’t. I’m sorry.}

3) There will be no shortage of advice. Once you begin to integrate online, you will find there are as many opinions about every detail as there are details. Remember when you were a new mommy and got sucked into the vaccine debate? Or the breastfeeding debate? Or the cloth vs disposable diaper debate?

Yeah. Like that.

Do you change your lancet with every poke? Did you check ketones with every BG over 250? DO YOU — USE AN ALCOHOL WIPE FOR EVERY INJECTION????? The list is long, and the commentary is longer.

Here’s a tip: Don’t pay attention to any all of it. Do what works for your kid, and let another mother do what works for hers. Take what you find helpful, and leave the rest behind. That’s all there is to it. Pick and choose what (and who) you want to spend your energy on.

Along those lines, be aware that sometimes people will interject themselves into your crisis. And, make no mistake, right now — in the aftermath of your child’s diagnosis — this is a time of crisis as you adapt your new normal. There are some people who are just constantly in a state of drama. They come on strong, act like they know everything — been there/done that, and monopolize your time with their theatrics.  They’ll constantly compare your situation to theirs. They turn every conversation around to be about them, and they never stop to listen. Every day is a new dilemma for many of them, and you’ll grow tired of listening to all of their struggles while trying to balance your own.

You don’t have to make time for all that right now — or ever, for that matter. It’s okay to avoid them. Unfollow. Defriend. Block. Whatever it takes.

Catch your breath.

4) Ask for help. You are going to need someone who can check your child’s BG, count carbs, and help give insulin. You will need someone who can watch your child for an hour or two at some point in time. I know it might feel impossible right now, but be honest when people ask you what you need.

Sure you can always use help with dinners, and errands, and all that good stuff…but for the long haul, you will need someone to be willing to step up in this area. Tell your friends and family you need them to learn everything they can so they can help you take care of your child.

Not everyone will be willing, but someone probably will. You might be surprised who it is.

5) Technology is out there.  When it comes to diabetes technology, there’s a lot of information to absorb. From glucometers to insulin pumps to continuous glucose monitors (CGMs), there’s plenty to learn. While I feel inclined to tell you to cross those bridges when you’re ready, I also feel obligated to let you know that technology has, literally, revolutionized this journey for us.

#1 – The precise micro-dosing offered by the insulin pump helped us stop the horrible low blood sugars that were causing my little 2-year-old daughter to pass out repeatedly. {She wears the Animas PingHERE’S WHY, if you’re interested.}

#2 – Yes, she did begin carrying a cell phone at 9 years old. It was a game changer, and my only regret is we didn’t get one for her sooner. Putting a cell phone in her hand gave us a direct connection for the times we couldn’t be together…like, for example, when she was Toto in the school play and stayed after school twice a week for most of the school year; and that time she went to her 1st sleepover (which didn’t go very well, btw); and all the weekend services we’ve spent apart during church worship. These days, she goes to the park with her pals, rides her bike around the neighborhood, and calls me anytime she’s dealing with a BG issue she feels like she needs help with. I love that we have cell phone technology in this day and age of parenting — and diabetes management.

#3 – Finally, the peace of mind offered by her Dexcom Continuous Glucose Monitor (CGM) is second to none. Dexcom measures the interstitial glucose levels using a very thin sensor placed just beneath the skin. It displays a glucose reading every 5 minutes, along with an arrow to indicate which direction the glucose level is moving. We’ve found it to be incredibly accurate, and would consider it one of the most important tools in our tool box.

Currently, I’m able to remotely monitor my daughter’s Dexcom data using Nightscout. This means I can see her numbers on my laptop, smartphone, and even on my Pebble watch (using an Android app) no matter how far apart we are! Ten years ago, the idea of being able to remotely monitor my daughter’s glucose levels would have been a dream come true…and now here we are. {Nightscout is actually a bit more complicated to set up than I’m making it sound here, but it’s pretty amazing and worth the investment of time.}

If you are a family of iPhone users, the Dexcom SHARE might be a great option for you. There isn’t as much set up required as Nightscout, and you can still remotely monitor your child’s glucose levels. Unfortunately, Dexcom didn’t make their remote monitoring software available to Android users (something I have a pretty big problem with — a soapbox I’ll rant on another day), so I can’t give you a firsthand account of the experience, but I think it’s going pretty well for iPhone users who have been able to use it.

Finally, have hope in the technology of tomorrow. In the summer of 2014, my daughter wore a closed-loop artificial pancreas called the Bionic Pancreas. She wore it for five days as part of a clinical trial, and it completely controlled her glucose levels — like, she didn’t count carbs, she didn’t correct highs, she didn’t deal with lows. It. did. eve.ry.thing. I’m not even making this up, people. I know it sounds very futuristic-scifi-the-stuff-that-movies-are-made-of…but it was real. She really wore it. You can read more about her experience with the Bionic Pancreas HERE.

Oh, and Encapsulation. You need to be excited about that too…it’s a little implanted device that would eliminate the need for insulin for up to 24 months.

Yeah. Read that again: “eliminate the need for insulin for up to 24 months”.

Good stuff is coming.

Get on board with technology.

6) Get involved. You cannot take a passive role in your child’s future. You have a very finite amount of time to shape tomorrow, thereby ultimately making a long-term impact on your child’s destiny.

One day your child will grow up to become an adult with type 1 diabetes. Their ability to carry health insurance, avoid discrimination in the workplace, access technology (as well as what that technology will be), and the ability live as normal a life for as long as possible will come about, because of  advocacy efforts that are happening TODAY.

There are organizations working very hard to secure a better future for your child, but it’s not just about tomorrow. Children today are able to access insulin pumps and CGMs because of advocacy organizations who have worked hard with the FDA and insurance organizations. Our children can go to school with protection under the American with Disabilities Act, complete with a 504 Plan (or IEP, depending on your child’s needs). Today’s children are benefiting because of yesterday’s hard work. It’s a circle effect.

You must become part of the momentum, because we need ALL HANDS ON DECK. Get involved. Start a walk team. Sign up to share your story with lawmakers. Offer to come to the office. DO SOMETHING…but whatever you do, don’t do nothing.

JDRF

ADA

Here’s a great article that highlights some others.

7) There are no bad numbers.  There are a lot of numbers. Many days are like a roller coaster…up, down, up, down…but there are no “bad numbers”. There are high numbers. Low numbers. And target numbers.

Let’s say a BG of 439 pops up on the meter. What do you do?

Frown? Scowl? Grumble?

Does your child think you’re frowning, scowling, and grumbling at them? Are they now worried that they’ve disappointed their parent because of something they have absolutely no control over? Their body doesn’t make insulin. Regardless of whether that number is the result of forgetting to cover something or not calculating correctly, the fact remains that…well…they’re 439 because their body doesn’t make insulin.

Listen…the last thing you want is for your child to tie that number to their self-worth. It’s a number. It’s a piece of data — that’s all. 439 simply means your child needs insulin. Period.

Fix the number, then objectively try to figure where it came from. Don’t lash out. Don’t hurl accusations. Don’t place blame. Just work together to problem solve.

Each number — whether high, low, or target — is merely a point of data on a graph. There are no bad numbers — just data. Use the data to make decisions about what to do next, but do not use the data to place any sort of value on your child.

Your child is so much more than a number.

{By the same token, remember these numbers are not a measure of your parenting either. Data! That is all.}

8) Doctors often don’t get it. You will be surprised how many times you encounter a doctor (or other healthcare professional, nurses included) who will ask you if your child uses insulin. Um, yes. TYPE 1 DIABETES infers the use of insulin, but it’s just not that simple. They will insist your child needs nutritional counseling or start an exercise program to “control their diabetes”. They don’t get it. THEY JUST DON’T GET IT!!!!! And you can educate them until you’re blue in the face, but they will probably just argue with you.

Truthfully, I didn’t really get it either. I was a nurse for 10 years before my daughter was diagnosed, and nothing in nursing school prepared me for this. I was SHOCKED when I learned what this life would consist of. I’m embarrassed to admit this…but I said that…and this patient taught me so much.

I don’t know how to fix the problem at large, but felt you should know so you wouldn’t be caught off guard. Most healthcare professionals have no clue about T1D, so don’t let them start making decisions about your child’s insulin until you’re confident they know what they’re doing.

{Further reading: No one should die because they are misdiagnosed or not diagnosed in time.}

9) Get on a 1st name basis with your school nurse. And your school’s custodian. And the cafeteria workers. And the front office staff. And the crossing guard. And anyone else who is willing to look out for your child during the school day. Love these people. You are on the same team. It takes a village, and they will be there when you aren’t. Everyone matters.

10) Your child was diagnosed, but everyone in the family is living with type 1 diabetes. This is going to be life-changing for everyone. Siblings will go through adjustments. Marriages go through adjustments. Family routines go through adjustments. In some ways, a bomb has just been dropped in the middle of your living room.  In other ways, the ultimate team challenge has just been presented to your family.

Everyone’s experience counts. No one is less important, and there’s most certainly a job for everyone. Youngers can help keep track of juice boxes, and Olders can help learn how to give injections. From learning how to check glucose levels to learning how to count carbs to learning how to weigh and measure food, there’s something for everyone.

All of that being said, sometimes it won’t be so hunky dory. Sometimes siblings grow tired of the extra attention your child with diabetes (CWD) is getting. Sometimes your CWD may grow tired of it too.

After ten years, I wish I could end this post by telling you that it gets easier, but it doesn’t. Sometimes it feels like we’re living life one number at a time, just waiting for the next result so we can make a decision about what happens next.

The insurance hassles, prescription battles, and BG rollercoasters never seem far away. There’s always a challege lurking around the corner. Just when you think you’ve found the perfect insulin dosages, your child grows — or has a test — or exercises — or whatever. There are birthday parties, and sleepovers, and swimming pools, and bounce houses…and nothing is predictable.

It’s never easy…but you will look back and see how far you’ve come…at 2 weeks, then 4…then 3 months, 6…then before you know it, at 1 year, 5…10… You will stand amazed at what you, your child, and your family has overcome. You will look around, simultaneously shocked at how fast the time has flown, and how slow it has crept by at the same time.

No…it doesn’t get any easier.

YOU, my friend, get BETTER!

Dear November,

It’s not me.

It’s you.

You just keep showing up.

November is National Diabetes Month, so here we are.

Again.

World Diabetes Day 2009

Until 2009, November meant pumpkin-spiced everything, Christmas music, and Thanksgiving. It smelled like apples and cookies and cranberries. It was filled with the anticipation of twinkling Christmas lights and childhood excitement. Prior to 2009, I was too overwhelmed with managing 2 toddlers and a preschooler while balancing Type 1 Diabetes in the middle of Halloween and Christmas to give National Diabetes Month much thought.

WDD 2009

And then I learned about The Blue Circle.

November, you took on a new shape for us. You started to smell like insulin and look like a flurry of numbers. Never before had I been so in tune to the intricate images of diabetes in our life: the random test strip on the floor, the empty juice boxes on the nightstand, the nutrition labels with serving sizes and carb amounts circled.

Social media was booming. November engulfed my overwhelmed loneliness with collective reflections from others who understood — parents and PWDs (person/people with diabetes) alike.

Over the years, the anticipation for November began building almost as soon as the New Year. With endless advocacy opportunities and blog posts galore and pictures of families just like ours carrying the burden. I had never felt so connected and in love with a community before. The Diabetes Online Community (DOC) became my sanctuary.

At the same time, however, storms were hovering over the homefront. The housing market crash, furloughs, and pay cuts had forced us to begin thinking about long term solutions because the trenches had gotten too deep. Mr. Rose began taking college classes. I began working more hours. We began making decisions between things like test strips and a tank of gas. Gluten-free food dominated our dwindling grocery budget. Hard times always followed good times, and each time the fall was harder to recover from.

But there was always you, November.

I could regroup each November.

Reconnect.

Remind myself that we aren’t alone on this journey.

It’s November again.

Our 9th November since Sugar’s diagnosis. Next year will mark a decade.  Every day I see another small part of her childhood fade into the young woman she is becoming. November, you’ve seen it happening too, haven’t you?

On November 1st, Mr. Rose donned his cap and gown…

graduation chb

You were there, November. It’s fitting that he graduated on the first day of my favorite month. The month of our wedding anniversary. The month of Thanksgiving.

We don’t really know what happens next, and that feels okay right now.

Like I said…

It’s not me.

It’s you.

This November I’m lighting my pumpkin candles and making cookies. I’m playing the Christmas music and I’ve already put up my little strand of snowflake lights over my desk. I’m cherishing this last November before my little girl is gone knowing her sisters will be quick to follow.

These days are numbered, November.

I’m quite sure there will be a few blue circle moments that pop up. Afterall, diabetes isn’t disappearing anytime soon…but I’m kicking it old school and I hope that’s okay with you.

I know you’ll always be there, November.

I’ve learned I can count on that.

Happy Fall,

Wendy

2014 DBlog Week Day 1: Change the World

blue circle on fire

Today’s topic is Change the World. Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up.

Fired up, you say?

Hmmm…let me count the ways…

I get fired up when someone suggests my parenting, or worse — my child herself– is “at fault” for her Type 1 Diagnosis. I must have fed her too much sugar or I must have not breastfed her or I must have breastfed her too long or whatever.  Nope. You’re wrong. We didn’t do anything. It just happened. Period.

I get fired up when someone suggests I pay “X” amount of money to buy some exotic herb, attend some unscientific presentation, or try some incredibly restrictive diet in order to “cure” my daughter. If I could have bought her a cure by now, I would have. If I could have implemented a diet change to fix this, I would have. If I could have done anything to take this burden from her, by now you can bet I would have done it. So save yourself the trouble. I’m not interested in a snake oil cure.

I get fired up when someone suggests the technology she uses to manage her diabetes is nonessential. She uses an analog insulin, wears an Animas Ping insulin pump, and benefits from a Dexcom continuous glucose monitor. And you know what? That stuff is freaking expensive. But it also enhances her quality of life. When she used less expensive insulin via injections, she passed out and hit her head all. of. the. time. She was just a baby and fell face first, unconscious as the result of low blood sugar, far too often. I couldn’t draw up small enough doses in a syringe, nor could I pinpoint any sort of pattern to stop those horrendous episodes from occurring. If you think it’s too expensive or a drain on insurance companies that, in turn, increase premiums, too bad. I’m not apologizing for using the tools available and doing whatever I can do to help her be happy, well adjusted, and healthy.

But, believe it or not, those are not the things that fire me up the most.

I am FIRED UP that insulin was discovered almost 100 years ago and people still DIE every day because they cannot access it.

Perhaps they live in an underdeveloped country where medical care is primitive at best. Perhaps they live in a developed country, but their diagnosis was missed by healthcare professionals who should have known better. Perhaps they are under-insured or uninsured and can’t afford their prescriptions. Perhaps any number of scenarios…the fact that a shot of insulin could have spared their lives, but they couldn’t access it hurts my heart in ways I cannot describe.

I think about it a lot. Sometimes I hold my daughters close, and feel sadness for the mother somewhere who is holding her dying child because she cannot access insulin. Sometimes I think about all the advocacy and fundraising in search of a cure and improved technology, and feel morally torn knowing people are suffering because their most basic needs aren’t being met.

This post is part of DBlog Week 2014. To read other blog posts on this topic click HERE.

Pebbles.

I had stepped out of the office for a quick second. My shift was crazy busy, and I needed to fill up my water cup before tackling the screen full of calls waiting for me.

“Mom, Pebbles put a new site in me about an hour ago.”

Wait. What? Who?

My brain was gobsmacked for a second. Did my 10-year-old daughter just tell me her 11-year-old pal inserted a new site?

Mmmhmm. Pretty much.

Basically, Sugar’s site came out so her friend, Pebbles, put in a new one for her.

Just like that. No big deal. Whatever.

This evening, Sugar was due for a new site again (she inserts a new site for her insulin pump about every 3 days), and Pebbles offered to do it immediately.

For reference, here’s a picture of the needle…

site needle

Did I mention this kid is 11 years old? She’s not intimidated in the least by the enormity of T1D and/or celiac. Making sure her friend is taken care of is a top priority to Pebbles — even if it means poking her with needles herself.

She has learned how to check Sugar’s BG, and knows what to do if she’s low. She reads labels and counts every carbohydrate. She makes sure Sugar has her bag of supplies before they go to the park, and willingly pokes her own fingertips just because she wants to better understand what her friend is dealing with.

And that’s just for diabetes.

Then there’s celiac…Pebbles is on constant guard for gluten and happily eats gluten-free stuff so her friend doesn’t feel different. She thinks about whether or not a restaurant has a gluten-free menu before choosing where to have her birthday luncheon. She actively seeks out gluten-free snacks (and checks the carb amounts) when browsing at the grocery store, because she wants to make sure her friend always has something available when she comes to visit.

I’d be a very rich woman if I had $5 for every time an adult has told me they couldn’t do it, because…

They’re grossed out by the sight of blood, or…

Scared of needles, or…

Worried they’re going to hurt her, or…

Whatever.

pebbles

But not Pebbles.

Pebbles has stepped up to the plate to be a willing participant so she can support her friend in every way possible.

As a mom, I can’t help but to worry about each new phase of life and how we’ll fit diabetes into it. Today it’s a walk to the park. Tomorrow a school dance. Today a sleepover. Tomorrow a weekend away with her friends for the first time.

I don’t know where life will take this girl of mine…but I’m thankful she has a pal like Pebbles to help look out for her along the way.

Diabetes and the Love Nest.

jay and wendy 1999 chb

We used to look like that. True story.

The lights are low, half a glass of wine sits on the end table, the door is locked, and the mood is right.  The window is slightly open, and a gentle breeze flows through the bedroom.   After a long day, getting in the groove with the one you love seems like the best way to take all the stress away…

“MOM!!!  I’M LOW!!!”

Buzz kill.

Nothing says ROMANCE like your kid’s low blood sugar.

Or a pump that runs low on insulin.

Or a beeping CGM.

Or whatever.

Let’s face it…sometimes diabetes REALLY…ehum…intrudes.  I mean, there you are just going about your life, and it falls out of the sky:  Your child has type 1 diabetes.

INTRUDER!!!!!!

When you’re trying to sleep, but can’t stop replaying blood sugar patterns in your mind.  When you’re financial goals are altered in order to pay for diabetes supplies.  When you’re wandering from one day to the next feeling distracted by the science of balancing exercise, carb counts, and insulin…

Intruder!  Intruder!  Intruder!

So, perhaps it should come as no surprise that the ol’ D has meddled a bit in our marriage.  It started subtly.  We were planning a date night, but got hung up on finding a sitter who could manage diabetes in a toddler.

We were left to wonder if we’d ever go on a date again?

While friends were boasting about weekend getaways, and trying new restaurants; we were holding our breath to see if the pizza bolus from dinner would wreak havoc on a good night’s rest.  Household tasks went from dividing up laundry and dishes to finger pricks and site changes.  A fridge full of insulin became more important than a carton full of milk.  Conversations became centered around diabetes management decisions, and we grieved the loss of “normalcy” as we knew it.  Times of illness, the transition to school, learning how to juggle celebrations, managing our other children’s needs, prescription, pharmacy, and insurance hassles…it’s all added stress to the already stressful task of raising a family.

About two years into the journey of our daughter’s diabetes diagnosis, we faced the reality that we’d need to embrace a change of attitude if we were going to make it the long haul with our relationship.  Over the past year, we’ve had to adjust our attitudes again.

Every day requires intentional effort to avoid the “diabetes trap”.   We’ve had to fill our thoughts with gratitude for what we DO have, instead of frustration over what we don’t.   We cannot allow blood sugar numbers to set the tone in our home, and we cannot dwell on the things we cannot change.

We’re a work in progress.  As his wife, I’ve had to learn not to take things personally, and recognize that he’s working hard to provide for our family’s needs.  As my husband, he’s had to accept that there will be emotional moments when I’m feeling defeated.  Individually we’ve had to make our marriage a higher priority than anything else – diabetes included.   Together, we must find the rhythm that keeps our family afloat.

Diabetes has interrupted our life.  It’s challenged our relationship.  It’s been the root of more than one heated conversation, and it’s caused moments of division when we don’t agree.

But it’s also forced us to work as a team.  It’s helped us prioritize material things, put our lives into perspective, and see the world from a different point of view.

2014 Animas National Sales Meeting: I was there for 15 minutes.

20140131_100428

Two weeks ago, I got an email asking if I’d be willing to attend “a 15 minute meeting” in Miami today.

“A 15 minute meeting” the email said.

Sure! I’d love to attend “a 15 minute meeting” in Miami! BONUS – Mr. Rose is off on Fridays…which means the childcare dilemma would take care of itself.

#Awesome.

And so I did.

Except…when I think of “a meeting”, I imagine a group of folks sitting around a table with notepads and coffee cups and stuff.

And, yes, there was that.

But…I wasn’t sitting around the table.

More like…I was wearing a microphone and standing on a platform, talking TO a group of people who were sitting around tables with notepads and coffee cups and stuff.

I’m used to hanging out behind the computer screen. I mean, don’t get me wrong. I’ll share our story up one side and down the other from the radius my charging cable will allow, but…sharing it in front of a group (wearing a microphone, on a platform) adds a new dynamic.

For one, I cry. Yes, I’m aware it’s been almost 9 years since her diagnosis. I can’t help it. I still cry when I talk about it. I don’t know when that goes away to be honest. When I think about how sick she was…how close we came to losing her…I can’t help it. I cry. Then my make-up gets all blotchy and my nose gets all red when I cry…it’s not pretty.

But I didn’t cry today. {Thankyouverymuch!} I was talking to a group of Animas employees from all around the country. Many of them wear insulin pumps themselves, or, like me, they love someone who wears a pump. It was like talking to a bunch of old friends…a group who already knew our story and were happy to listen to me delve into it again. It wasn’t stressful at all.

Also, I’m a nurse. Look. If I could get paid for the number of times I’ve heard the phrase “Thank goodness you’re a nurse!” we’d be rich. Very rich. The world expects me to just “know” what the heck I’m doing. Standing in front of a group of people and admitting that YES I am a nurse and YES my kid went into DKA and YES I have struggled with figuring out how manage her insulin needs ever since…well…it isn’t easy. Fortunately, their faces were empathetic. They were kind. They listened. They saw me as a mother.

Finally, my words have been stuck in my head for a few months. It’s the reason my blogging has slowed down considerably. Things used to flow freely from my brain to my fingertips, but that hasn’t been the case as of late. I wrote myself some notes, and made an outline of the things I wanted to talk about…but when I tried to practice saying any of it out loud, I kept tripping over my thoughts.  If I’m honest, I was sitting there, in the final minutes before my introduction, still wondering what I was actually going to say.

I smiled, stepped up, looked around…and shared my heart. For the most part, it came out right. They smiled and laughed with me. Their heads nodded in understanding. They listened. And, when my 15 minutes was up…they stood and clapped. Almost as if they understood that I was afraid I’d cry, and I was afraid of admitting I was a nurse, and I was afraid I wouldn’t be able to find the words.

They stood and clapped.

For the first time in a very, very long time…I wanted to clap too.

We’ve been doing this for almost 9 years.

She’s vibrant and thriving.

She wears her pump day in and day out and hardly ever complains.

She is amazing.

Bravo, little girl.

Bravo.

I used to be a blogger.

Capture

I told you about The Drop.

And talked about the time She Didn’t See Me.

I told you she tried. She Tried dammit!

I was honest about not being The Same.

And wanted to remind you that You Are.

——————————-

My life changed in 2013.

Honestly, I’m not ready to talk about it, and I don’t know if I ever will be.

Now it’s 2014.

One day turns into the next…

I tell myself all the time that I need to get back to writing, but I just can’t get the words out. I can’t put them together in my mind. They’re just swirling around, making no sense to anyone else, but me.

Maybe it’s not too late for a resolution.

I used to be a blogger.

Perhaps I”ll pick it up again one day.

12 Days of Diabetes: The High Edition.

chb.org

High BG of a Christmas Past.

My friend and neighbor, Heather, wrote this after her experience with The Perfect Storm a few weeks ago. I thought it was a pretty hysterical recap of what was going on at home while Mr. Rose and I were travelling, and I’m excited to share it with you today. Merry Christmas!

On the 1st day of Christmas diabetes gave to us, 1 bad dex com sensor.

On the 2nd day of Christmas diabetes gave to us, 2 bottles of insulin and 1 bad dex com sensor

On the 3rd day of Christmas diabetes gave to us, 3 site changes, 2 bottles of insulin and 1 bad dex com sensor

On the 4th day of Christmas diabetes gave to us, 4 mid flight texts, 3 site changes, 2 bottles of insulin and 1 bad dex com sensor

On the 5th day of Christmas diabetes gave to us, 5 ketone checks, 4 mid flight texts, 3 site changes, 2 bottles of insulin and 1 bad dex com sensor

On the 6th day of Christmas diabetes gave to us, 6 hundred #’s (well 594 but close enough), 5 ketone checks, 4 mid flight texts, 3 site changes, 2 bottles of insulin and 1 bad dex com sensor

On the 7th day of Christmas diabetes gave to us, 7 frantic phone calls, 6 hundred #’s (well 594 but close enough), 5 ketone checks, 4 mid flight texts, 3 site changes, 2 bottles of insulin and 1 bad dex com sensor

On the 8th day of Christmas diabetes gave to us, 8 “ok how do I do that again ” questions, 7 frantic phone calls, 6 hundred #’s (well 594 but close enough), 5 ketone checks, 4 mid flight texts, 3 site changes, 2 bottles of insulin and 1 bad dex com sensor

On the 9th day of Christmas diabetes gave to us, 9 “wash your hands before you test” comments, 8 “ok how do I do that again ” questions, 7 frantic phone calls, 6 hundred #’s (well 594 but close enough), 5 ketone checks, 4 mid flight texts, 3 site changes, 2 bottles of insulin and 1 bad dex com sensor

On the 10th day of Christmas diabetes gave to us, 10 bolus doses,  9 “wash your hands before you test” comments, 8 “ok how do I do that again ” questions, 7 frantic phone calls, 6 hundred #’s (well 594 but close enough), 5 ketone checks, 4 mid flight texts, 3 site changes, 2 bottles of insulin and 1 bad dex com sensor

On the 11th day of Christmas diabetes gave to us, 11 sleepless hours, 10 bolus doses,  9 “wash your hands before you test” comments, 8 “ok how do I do that again ” questions, 7 frantic phone calls, 6 hundred #’s (well 594 but close enough), 5 ketone checks, 4 mid flight texts, 3 site changes, 2 bottles of insulin and 1 bad dex com sensor

On the 12th day of Christmas diabetes gave to us, 12 finger pokes, 11 sleepless hours, 10 bolus doses,  9 “wash your hands before you test” comments, 8 “ok how do I do that again ” questions, 7 frantic phone calls, 6 hundred #’s (well 594 but close enough), 5 ketone checks, 4 mid flight texts, 3 site changes, 2 bottles of insulin and 1 bad dex com sensor!!!!!!!!!!

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