diabetes – Triumphs, Tantrums, and Type One

Never Read the Comments

I know I shouldn’t read the comments, but I do, we all do. Regardless of our inside voice screaming at us not to do it.

I know better, I know I shouldn’t look. I’m an adult, I’m in my mid(ish) 30s, I’ve had the internet since I was in junior high, I’ve been on social media for over a decade. I know I shouldn’t read the comments, but I do, we all do. Regardless of our inside voice screaming at us not to do it.

I’m a medical professional, I’m a parent, I’m the parent of a child with an invisible disability; all even more reasons I shouldn’t read the damn comments, but I can’t help myself. I should listen to my inside voice more, she’s actually pretty reasonable and gives good advice. My inside voice wants to decrease the hurt and the anger that arise when I read the comments — she just wants to protect me. I just want to protect my kid.

The latest reminder to not read the comments, stems from a recent article CNN posted with the headline “40 million people with diabetes will be left without insulin by 2030, a new study predicts”. I’m not going to get into my true feelings about this article and access to insulin — the insanely high list prices, that just keep increasing; the oligopoly by 3 pharmaceutical companies that will be allowed to continue to exist; the greed by pharmaceutical companies, insurers, and PBMs with backdoor deals and kickbacks — it will actually be the people who will not be able to afford insulin, they won’t have access (and my kid will only by 17 in 2030, still in high school, still not old enough to vote, still a kid — by all definitions). I looked, I couldn’t help myself and as I read the comments, the sadness started and then the anger began to boil over. SO many comments about people giving themselves diabetes; about diet and exercise and complete blame and shame to those living with diabetes. These adults show zero compassion or empathy, they wouldn’t dare make the same claims about people living with cancer, or Alzheimer’s or any other disease. But once again, people think it is OK to make fun of and blame people who have diabetes. “Oh, not the bad kind where kids give themselves shots. I’m obviously talking about adults.” Guess what people?!? There is no cure for diabetes — kids with type one diabetes, grow up and become adults with type one diabetes. There are so many subsets of diabetes that have been discovered, type one and type two don’t even begin to touch it. And all types of diabetes have underlying causes that stem way beyond “just watch your diet”.

Honestly, I want society as a whole to show more empathy in general, it’s probably exactly what our world needs. More understanding and showing others some grace, simply being better humans. And I just want to protect my kid. I want her to not be made fun of for something that was completely out of her control; a chronic, invisible disease that made her body attack itself when she was only 2 years old. A disease requiring man made insulin injected daily to sustain life. A disease that we have tackled head on as a family. I’ve been her fiercest advocate from day one and will continue to spend my days educating, correcting myths, and fighting insurers and durable medical equipment suppliers on her behalf — until one day, it becomes her burden, but she will know, she will never face any of it alone. She has one hell of a support system. Near and far, there are people who love her, learn from her, and will fight to protect her. What breaks my heart and awakens the mama bear inside, is that one day she is going to grow up and she is going to read the comments.

Just How Far We’ve Come

Last month I met a couple with a 3yo little girl who was diagnosed with Type One on Halloween. They looked just like Jason and I did one year ago. The scared, deer in the headlights look, just taking everything it. The overwhelmed, sheer exhaustion, running on pure caffeine and parental adrenaline appearance was unmistakable to any parent in the Type One community. I was flooded with emotions. It made me realize how far we have come and just how far away Halloween 2016 feels.

If you are new to the Type One community and reading this, hello, I am sorry you had to join us. But this is a fierce community with strong members who are amazingly supportive any time of the day or night. I also want you to remember three things.

1) You are not alone. Personally this one was the biggest for me. It is so comforting to know that no matter how much this battle sucks, others are going through the exact same thing. Whether you are at 1 day, 1 month, 1 year, 10 years, someone else has been there. Another family has experienced every emotion, sleepless night, and blood sugar that you are currently experiencing. We’ve been in your exhausted shoes and we will offer any support and advice we can. Most people I’ve met in the T1D community are open books, more than willing to share stories, give pointers, and just be there to listen when you’re having a horrible diabetes day. It also brings reassurance as a parent because it made me realize my little one isn’t alone. She has other kiddos, teenagers, and adults fighting the same battle. As she gets older there will be plenty of people who have “been there, done that” to give her advice and help her with new hurdles she’ll have to overcome. And I know she’ll be ok because she is not alone.

2) It gets better. I know it sounds cliche and makes you want to roll your eyes, but it’s true. For me it got better once I realized that we weren’t going to kill our child. My biggest fear, leaving the endocrinologist the first day, was giving too much or too little insulin. Heck, it’s a medication at hospitals that 2 RNs need to double check at the bedside and you’re just going to let my husband and I give what we have calculated on our own. That seemed overwhelming and it was, but most days it no longer is. And really, it gets better. Attend any social event with families with T1D and you’ll see it. You’ll see kiddos having their fingers poked and being dosed without a meltdown. You’ll see middle schoolers and teenagers starting to manage their own care. You’ll see parents not weighing and counting every morsel that goes into their kiddo’s mouth because they’ve learned to SWAG food with the best of them and they’ve realized that a brief high or low blood sugar can be treated. A swing in blood glucose isn’t the end of the world. Most importantly you’ll see kids being kids, eating, running around, playing, and laughing. It’s a beautiful sight and sound, which is often interlaced with alarms and snacks, but everyone is doing it, so it just seems normal — and it is. It is the new normal of every person in our community.

3) You will sleep again. In the beginning I remember feeling like I would be a zombie for the rest of my life. Like I would need to mainline caffeine just to function in the world. For me, it was worse than the newborn stage. We developed a plan, I would stay awake until midnight to do that check, my husband would wake up for the 2am check, and then I would do a check at 5:30ish when I’d leave for work. Then, at the 6 month mark we started our continuous glucose monitor (cgm), and we both started sleeping again. It was glorious. I’m not going to lie, we don’t get a full night’s sleep every night, but most nights we do. Sleep has made a huge difference in being able to tackle disease. I’m now able to handle this disease and function appropriately in the real world simultaneously.

Once again, if you’re here because you’ve recently joined our community, I feel for you, but know that it will get better. I’ve been in your shoes. Truly, at one year in, managing this disease has become second nature to us. I’m not saying we don’t still have difficult hours, or days, or weeks, but I never expected it to feel this “normal”. It’s amazing just how far we’ve come.

Mom Guilt Overload

And there is was, the autoimmune gene. The gene that lead to my daughter’s autoimmune disease, the gene that my ovum carried.

When my daughter was first diagnosed with Type1, the amount of guilt I felt was tremendous. I replayed all 1048 days of my little ones life. I went over everything that we had done, every possible cause: every meal, any reaction, every sickness, every doctors visit. From the broken arm at 10 months old to the pistachio up her nose at 26 months old. All the breastmilk, the vaccines, homemade baby food, cloth diapers, not a drop of juice. The fact her A1C was so high, I must have been missing symptoms for months. I’m a nurse, for fuck’s sake, and a good one at that. How could I not notice my 2yo getting sick before my eyes?!? We never could have predicted that her pancreas would become high maintenance, that it would just one day decide to break…or could we??

Two weeks ago, I was diagnosed with celiac disease. Celiac disease causes reactions to gluten that lead to changes in your small intestines. It’s basically a severe allergic reaction to gluten (which is found in wheat, barley and rye — some of my favorite food groups, and ingredients in good craft beer). Celiac is also an autoimmune disease. It happens to be an autoimmune disease that is linked closely to Type1. This is not a diagnosis that was even on my radar, I went in for an EGD because I thought I had an ulcer (not that this past year has been stressful or anything), so I was totally taken by surprise when my GI doctor told me he saw changes and took a biopsy. I was even more surprised when that biopsy came back positive for celiac. I never thought that the stress of the past year would be enough to activate my own autoimmune response. So, on to blood tests it was, and BOOM! I tested positive for the celiac gene. And there is was, the autoimmune gene. The gene that lead to my daughter’s autoimmune disease, the gene that my ovum carried.

Seeing those results hit like a ton of fucking bricks. I am the weakest link. I passed on my total reject gene. Mom guilt overload started in 3…2…1. I am the reason my daughter’s pancreas broke. I probably should never have even procreated. I’m the reason my 3yo has to walk around wearing her pancreas in a polka dot fanny pack. I’m the reason she needs insulin everyday simply to sustain life. I’m the reason my little family watches numbers, calculates doses, and obsesses over every bit of information on possible cures and technological advances coming down the pipe. I’m a horrible freaking mother. Tears were shed, lots of them.

Ok, wait, snap out of it. This is not the end of the world and you are not a horrible mother. You are a freaking fabulous mother. Your child is beyond loved and knows it. She has people who love her from coast to coast. The following texts were exchanged with my best friends “You had no way of knowing before” “You can’t blame yourself, you didn’t know” “Besides it wouldn’t have changed anything” and my personal favorite “I’m super glad you’re getting more stress in your life. I was thinking things were too calm for you guys over there.” Nothing like your best friends to put shit into perspective. They’re totally right, knowing this would not have changed a damn thing. I would have never missed out on carrying her in my belly, on growing every part of her, on pushing her out, nourishing her, and growing another human being (it really is the most awesome fucking experience, I highly recommend it). We still would have had this amazing child with a broken pancreas. She’s fun, and beautiful, and perfect, and cool. She’s got this kick ass personality, which she also got from me. Ornery and feisty as hell. And I can’t wait to see what kind of amazing person she grows into, what awesome things she accomplishes and I’m the luckiest person in the world because I get to have a front row seat, even though now I’ll be drinking wine instead of craft beer.

IMG_1914 (1) — Our coffee table reads now consists of a plethora of information on our autoimmune diseases, knowledge is power

Dexcom: The Good, The Bad, and The Obsessive

Dexy is one more piece of technology that makes this crazy disease a bit more manageable

On May 4th, my little one entered the live phase of a Dexcom trial at the Barbara Davis Center. We’ve officially been Dexcom users for 90 days, so I feel like I can give a real look into our lives enhanced with continuous glucose monitoring. Dexcom is a continuous glucose monitor, cgm, that gives readings every five minutes. For clarification, Dexcom is a device that is completely separate from the insulin pump that my daughter also wears; because she now has two things attached to her at all times, she has taken to calling her cgm Dexy. Dexy has a little wire that is inserted under her skin, into the subcutaneous tissue and it measures glucose in the interstitial fluid. This is connected to a transmitter that sends the information via bluetooth to a receiver that has to be within 20 feet of my daughter at all times. We chose to get her an iphone to use as a receiver because then her info goes into the cloud via the share app and gets sent to our phones via the follow app. We get to set high and low alarms on our follow app, which we change based on the time of day, and our phones will alarm if her glucose is out of range. This device also shows little arrows, it tells if her glucose is stable, trending up, trending down, rising or dropping, and rapidly rising or dropping. I can even get alerts directly on my apple watch and see her glucose levels right on my wrist. Wow! All this technology is fucking amazing, however; it is not without it’s own idiosyncrasies.

First, the good. My husband and I can sleep. Yep, you read that correctly, we are getting sleep for the first time since she was diagnosed — 9 long months ago. 9 months without sleeping will turn you into a person you can barely recognize. Not sleeping wreaks havoc on your body, your mind, and your soul (even if mine is as dark as the black coffee I drink). My husband and I have gone on dates. Dates where we get to talk to each other and be alone or with other adult friends. That has definitely been a huge help. We are able to do this because we can still see what is happening with our little one. Starting to see a drop, one quick phone call to make sure someone feeds her something. It also gives the caretaker (usually my mom) a little more peace of mind. I think the best sentence that has been uttered since Dexy, was my mom saying “I think I’m comfortable and ready to watch her overnight again!” OMG! Yes! My husband and I had a long overdue and much needed overnight date (to celebrate his new job). It was amazing to know that she was in the capable hands of my mom (both my parents have taken the grandparents class at BDC and can do finger pokes, give insulin, and glucagon if necessary) and just be adults for a night. We stayed out too late and drank too much. It’s also been awesome for Frankie to stay with her grandparents by herself and have special time with them at their mountain house. I know these memories will last a lifetime.

Now, the bad, it’s so easy to quickly start to rely on technology. There is a 2 hour warm up period when you insert a new Dexy. You would think during this 2 hour period the sky is falling. My husband and I both anxiously check our phones, as if we can speed up time, waiting for that magic warm up period to be done. We have also become dependent on the alarms, which we have both slept through on occasion, not sleeping for 9 months makes you sleep hard at times. The guilt that comes with sleeping through alarms is crushing. All the scenarios that run through your head, we really don’t cut ourselves any slack, we are our own worst critics. Sometimes Dexy is off, by like large margins. CGMs measure the glucose in the interstitial fluid, this level is different from blood, and can be altered by various factors. Dehydration, compression, bad placement, you name it, it can affect the Dexy reading. This can be frustrating at times, especially when the reading was spot on with a finger poke just a couple hours earlier. False high, false low, it is all just a reminder to always check with a finger poke — learned that one the hard way when treating a random low on Dexy, nothing like a quick overcorrection. It’s a reminder that the newest and best technology isn’t always perfect, although it’s lightyears ahead of diabetes management 20 years ago.

These are the things that make me obsessive. I obsess about numbers, about average glucose, about what that means for her next A1C. The other cool thing is that the dexcom app gives all sorts of graphs, and numbers and data that we can crunch and watch and try to improve upon. That I can obsess over. How can I be a better D parent and take more control? How can the numbers be better? Why isn’t anyone else hearing these alarms? Is anyone treating these highs and these lows? It’s made for phone calls and texts between my husband and I when she’s not with one of us, “Are you treating that low?” “Did you give her insulin?” “What has she been eating all day and why are her sugars crazy?” and finally “Trust me, you know I’ve got this” That last one is so on point, everyone who we trust to watch Frankie has her best interest at heart. They love her and want to do the right thing and have been taught what to do in every situation. My parent’s neighbor even made a point of telling me how “Your mom was so on top of Frankie last night, checking her and making her eat, it was impressive.” Those are the comments that make me realize I don’t need to obsess all the time. It’s ok to breathe once in awhile, technology is here to assist us, it’s one more tool in our box.

Ultimately, I consider us lucky. Lucky that we have access to this technology and that we can afford it (which is a luxury I don’t take for granted). Dexy is one more piece of technology that makes this crazy disease a bit more manageable, one more piece of technology that is stuck on my daughter, one more piece of technology that makes my daughter stand out when lined up with her friends, one more piece of technology that people see and ask about, one more piece of technology that makes her part bionic. My daughter a Bionic Badass!!

It’s Not About The Unicorn Frappuccino

It’s about the misinformation and jokes about a serious disease that are allowed to be forgiven because they’re hidden behind some silly meme and a pepto-pink drink

It’s not about the unicorn frappuccino, a drink the marketing masterminds at Starbucks are riding all the way to the bank. There is no more sugar in that drink than there is any other frappuccino or even a regular soda. Personally, I’d rather spend my $5 and the calories on a real milkshake. Nope, it’s not about a damn drink. It’s about the misinformation and jokes about a serious disease that are allowed to be forgiven because they’re hidden behind some silly meme and a pepto-pink drink. Honestly, the unicorn frap is just the latest overly sugary fad that people get to slap the word “diabetes” across and have a good old laugh on social media.

Sharing these memes and jokes perpetuates the myths that surround diabetes. I know what you are thinking “Ugh, one more type 1 mom on some personal mission, standing on her damn soapbox.” “Ugh, it’s obviously about type 2, not the bad kind where little kids take shots everyday to stay alive” Guess what? Yep, I am one more type 1 mom, stepping loudly up on my soapbox. And seriously? Both of the types of diabetes are bad, as is any other medical condition that has serious consequences, although you don’t see people joking about those. Still neither type of diabetes is caused by eating too much sugar, even in type 2 complex genetics come into play.

The reason this really grinds my gears is personal. No one ever differentiates between the two types, all diabetes gets lumped together into one big ugly box. It’s why I cringe every time someone says Frankie is a “diabetic” At our house we always say “She has type 1” or will expand and say “she has type 1 diabetes”. As an RN in the OB world, where I spent the first 14 years of my career, diabetes was always defined. Our patients were always type 1, type 2 insulin dependent, type 2 diet controlled, gestational insulin dependent, or gestational diet controlled. They were defined because they are different. They are different diseases with different causes, treatments, and restrictions. Now stepping out of the OB realm, when I receive report on a patient, I always make the nurse on the other end of the phone tell me what type of diabetes the patient has. I’m sure this request is met with an eyeroll, but I want it differentiated. To me it’s important, it’s important on a nursing level and more importantly on a very personal level.

I never want a nurse to give report on my kiddo and say “She’s diabetic”. It’s not a label I want my kid to have. It’s where we fail in healthcare, there is judgement and at times you can even hear disgust in a person’s voice when they say a patient is diabetic. As if the patient brought a disease upon themselves. Which we know as professionals isn’t true; however, those little jokes that people post regularly do start to influence other’s minds and create biases. I know that I won’t have to deal with judgement when Frankie is little, but as soon as she turns 18 and becomes an adult, it seems all bets are off.

Over the past 6 months I have definitely become a better nurse when it comes to empathy for my patients with diabetes. I also understand the relief on my patient’s exhausted mother’s face when I said “oh, I totally understand her pump, I have a daughter with type 1 as well”. She was relieved because I get it, I understand the battle they fight on a daily basis, and I am not going to pass judgement at the one blood sugar I test before surgery. A blood sugar that really tells us nothing about how someone is managing their diabetes. But most importantly, she knew I know there is a dramatic difference between type 1 and type 2 diabetes.

So, the reality is it’s much bigger than a stupid drink at Starbucks. We were watching a TV show the other night and all of the characters laughed at a shirt with the tagline “I can’t eat that. I have diabetes.” Cringe-worthy, one more myth that was being shared on a nationwide platform. My comment to Jason was “Well, just one more reason Powerless isn’t being renewed.” When these jokes are shared on social media and TV shows it just perpetuates the myths and spreads misinformation about diabetes. It allows biases and judgments to build in people, because joking about “diabeetus” and “sugar comas” has somehow become commonplace and isn’t taboo in our society. It’s what makes me worried for Frankie as she gets closer to school age. We all know kids can be cruel, and when society has given permission to share jokes about sugar causing diabetes, it gives the kids a free pass to laugh, to point, and make fun. The kids will think that making fun of the little girl who has a disease because she ate too much sugar is ok; because the adults surrounding them laugh at this and share memes on social media. This is a battle that my 3 year old is going to be fighting her entire life, which totally fucking sucks. But, you can bet, I will be standing there on my soapbox right next to her, with my gesticulating and my loud Italian voice, fighting to spread valid information and encouraging people to just be better human beings.

IMG_20170422_125757_298 — For the record; this is what Diabetes in a (martini) glass looks like at our house.

Side note: Here’s the real deal, I’m not innocent and I’m not some big old stick in the mud. I have a horribly dark and jaded sense of humor. I laugh at inappropriate things and share inappropriate jokes in the right company. I have to have this sense of humor, or I wouldn’t be able to survive this beautiful life I’ve been given.

Be Careful What You Ask For…

I know I should be careful what I ask for, when you make a deal with the devil — all bets are off

It’s April, which means spring flowers, beautiful weather and baseball. More importantly, Cubbies baseball…

Last year, sometime during the season, I may have made the comment “I’d sell my soul if it means the Cubs will win the World Series.”* As a true fan, I’m not naive enough to think that I am the only fan, living or dead, who ever uttered that phrase. That said, I’m a realist, I know that bargaining with the devil, however risky that may be, did not cause my daughter’s pancreas to break, but sometimes it’s fun to pick one of one million insane theories and run with it.

There are a lot of things that I didn’t expect to happen in the off season. A lot of change, both good and bad. Honestly, I feel like I’ve changed significantly since Frankie’s diagnosis and that’s okay. Changes happen all of the time, we evolve, it’s the beauty of all living species.

I’ve become more guarded of my family and my inner circle. I’ve also become more open to strangers who are going through the same struggles everyday. My circle of friends has become a bit smaller. It’s okay that some felt the need to take a step back, something like this can be overwhelming especially in the beginning when it was completely taking over our lives. If you pulled away, I understand.

However; the outpouring of support from the type 1 community has been huge. There is an online parents group I’m in, one of their sayings is “find your tribe and love them hard”. This could not be any truer than every person I’ve met in the type 1 community. (I know there are bad eggs out there, I’ve just been lucky in my interactions) There was the stranger who was willing to meet and share her stories over a cup of coffee just because she knew how hard this initial part would be. The co-worker from the opposite shift who has become a fast friend, bonding over mimosas and our reality. These are the strong females who are sending agonizing texts at odd hours when the glucose gods don’t want to cooperate or just to check in because it seems like you’ve had a rough week. These women who are fighting the same battle have helped me more than they’ll ever know.

The biggest change is that I’ve lost my me time in all of this. It’s the change that has impacted me the most. Now that things are a little more settled, I’m going to focus on a little self-care. Getting back into the gym, eating better, and just taking time to breathe. Self-care is also going to include date nights with my husband and girl’s weekends again. Nurture my amazing relationships old and new. Focus on the things that make me feel whole and positive, and make me remember that being a pancreas is just one facet of my shining personality.

I’m going to take a line from one of my favorite baseball songs, because of tradition not for it’s excellent musical appeal, “Go Cubs Go!”. This is going to be my new motto as we head into a new season. “Baseball season’s underway Well you better get ready for a brand new day” The reality is, this disease isn’t the worst possible thing that could happen, it just felt that way during the initial phase. My brand new day is going to be full of a brand new attitude. A more optimistic me.

*Those of you who know me in real life, know I’m just being facetious. If I had any control over the outcome of sporting events, I would have bet everything pre-season and walked away with an assload of money.

It’s Not All Rainbows and Unicorns

I brag about the unicorns and talk about the rainbows because people don’t want to hear about the rest.

March has been our month, lots of magical 100s popping up on our blood sugar checks. First month out of honeymoon, I’ll take it. I consider this awesome because our kiddo doesn’t have a continuous glucose monitor (cgm) that tells what her blood sugar levels are every 5 minutes. We still do the old school, poke her finger and check, up to 10 times a day, to see where her levels are. I guess this does give us more of an opportunity for that magical number to appear on the blood glucose meter. Despite this month’s pictures and triumphs — it’s not all rainbows and unicorns. Shocking, I know…

I brag about the unicorns and talk about the rainbows because people don’t want to hear about the rest.

No one wants to hear about feeding our daughter smarties at midnight for a low of 67. Two rolls to get her blood glucose above 80, this is followed by one half cup of whole milk to keep her stable through the rest of the night. Knowing that Fairlife milk has just the right mix of fat and protein without a ton of carbs. Setting an alarm, which is really just a formality, we don’t fall back asleep because if her level drops too low again she could have a seizure or simply never wake up, to recheck in two hours. When her blood glucose is over 150 at this point, then we can settle into a semi-restful sleep.

No one wants to hear about the midnight checks when her blood glucose level is over 350 for no apparent reason. We program in a correction dose of insulin and deliver it to a sleeping child. Set an alarm, once again this is just a formality, as no one is going back to sleep, for one hour later. We recheck to make sure that her levels are coming down, we need to rule out the possibility of a bad pump site, yet make sure that her blood glucose isn’t dropping too rapidly. We need to make sure she isn’t heading into the realm of diabetic ketoacidosis (DKA). Then the alarm is set again, this time as long as the number is good, we will fall back asleep, only to wake up in 2 hours to make sure that she’s stable at the 3ish hour mark after receiving the correction.

Oh and don’t worry, she’ll be waking up at her usual time, around 0730am, because she doesn’t arouse for finger pokes any longer. She has even learned to eat smarties in her sleep and won’t remember it in the morning. We wear the headlamp and fumble around with the glucose meter, poker, test strips, and a cotton ball. We are the ones who appear tired during the day, have dark undereye circles that don’t ever disappear, and secretly long for a child who takes naps. I’m lucky that I have a great husband who shares the duties and is willing to trade-off nights so we both can get some sleep and have some semblance of normal.

Sprinkle in the fact that Frankie is a typical three year old. She is testing her boundaries. Her current specialty is drawing out bedtime to over an hour, more books, potty time and water breaks. She is throwing the occasional temper tantrum, often because we won’t let her do something pretty dangerous, or simply because I don’t want to push the fucking car cart at King Soopers. Oh and to top it off she is feisty as hell — I wonder where she gets that.

This is just a sneak peek into our lives. It’s the hand we’ve been dealt and we are trying to play it well. Doing this all while maintaining our friendships, sense of humor, and our relationship. We’re also trying to raise a well-adjusted tiny human who looks at the world around her with amazement and curiosity. All of this means my coffee habit has exploded from something I simply enjoyed at a higher than normal level to something I need at a higher than normal level in order to simply exist in my life. And I drink it black, because who needs sugar when your life is engulfed in rainbows and unicorns.

Our Daughter on Steroids

This is our daughter. This is our daughter on steroids. Any questions?

Monday my little one woke up with a unicorn. A perfect blood sugar of 100, that we actually happened to catch on the meter. My philosophy “this is a great omen for the rest of the day”. Boy was I wrong. Around 3pm, she curled up on the couch and took a nap — this is very out of character, but she had a big weekend, I thought maybe it had finally caught up with her. Around 4pm she woke herself up struggling to breathe with a barking cough. I picked her up and she was burning up, checked her temp, fever of 103.7F. I called the pediatrician and gave liquid ibuprofen (which I forgot to dose for in all the frenzy that followed). I knew in my gut I needed to take her in, but I needed the nurse on the pediatrician’s call line to tell me. There was no mistaking that barking cough and stridor, our kiddo had croup.

We have been lucky enough that we have avoided respiratory viruses and most viruses in general throughout her 3 years. The occasional cold and/or runny nose, but nothing serious. Of course the pediatrician’s office was closing, so we had to head to the ER. At the ER she got a dose of liquid acetaminophen and a dose of oral liquid steroids. Her stridor had gone away, so no need for a breathing treatment. The ER physician called the endocrinologist on call, who spoke on the phone with me about the plan of attack for dealing with the steroid induced high sugars that were sure to ensue. We felt confident going home and ready to tackle the next 72 hours.

The next day, I went to work and my husband stayed home and battled sugars, increasing basal rate every 2 hours and giving lots of corrections. Our kiddo was cranky most of the day, as you would be if your sugars were running double what they normally do. Steroid induced high sugars are stubborn. He ended up running the pump at a +100% temporary basal. This got her glucose levels below 200 and she started feeling good, running in circles around the house and singing at the top of her lungs — oh, this is our kid hopped up on ‘roids. The stubborn highs and increased insulin needs lasted about 12 more hours and then her sugars started coming into her range without the temporary basal on the pump. This is our daughter. This is our daughter on steroids. Any questions? It made us realize steroids and illnesses are temporary and we can tackle them head on. You need to and are able to throw large amounts of insulin at high sugars. I relayed our story to a physician I work with, who also has a daughter with Type One, and his comment was “It really makes you have a whole new level of respect for the pancreas.”

Which made me realize another thing we fail at miserably as healthcare providers when it comes to treating Type One diabetes. We are always seeing doses and making assumptions. We only want to look at the numbers, the numbers of basal, numbers of corrections, insulin to carb ratios. We are judging the patient who has larger insulin needs, they are getting labeled non-compliant or brittle if their needs suddenly increase drastically while hospitalized or ill. Larger insulin needs just means your body needs more insulin than the patient down the hall. Reality is no one knows the exact average number of units of insulin any given persons pancreas excretes at any given time to deal with all life throws at it. The number of units only reflects the patient’s magic number, the number he/she needs to keep their glucose levels in range. The number is completely arbitrary. After honeymoon my daughter’s insulin needs doubled, they increased to 8-9 units a day, during illness she received 17 units. At first, I freaked out, she’s so little, that’s so much insulin. Then I realized, oh well, it’s the exact amount she fucking needed.

Then, I made a mental note, I’m never going to comment on any patient’s insulin dosages. Unless it is to question why the dose is changing drastically while in the hospital (that is the number one thing providers like to do when diabetics get admitted — they like to change their doses). Patients are on the exact dose that they need. I’m going to be a more empathetic nurse, dealing with this disease on a daily, hell hourly basis is really hard. It takes a serious mental and emotional toll, I can only imagine the physical toll the person with the disease also endures. Who are we as healthcare providers to make anyone feel guilty or judged for doing exactly what their body needs? My number one take away this week, it doesn’t matter what dose of insulin they need to keep glucose in their range. All Type Ones have a useless pancreas. An organ no one thinks about until it doesn’t work. My daughter has a broken pancreas, she doesn’t make insulin, she wears her pancreas in a fanny pack around her waist. Her pancreas just happens to be pink and makes her smile.

Oh, and that magic unicorn that she had at the beginning of the illness, she had another one this week. On the day all of the steroids wore off, this time right before dinner. Unicorns aren’t good omens, they’re mythical and magic and make us all feel good inside. That’s why we brag and post and cheer each other on when we find them.

The Honeymoon is Over

It’s an odd feeling, for months it was all we could talk about in our house. Questioning how long it was going to last…

Well, it’s official, the honeymoon* is over. There is a part of me that is letting out a big sigh. I’m not sure if it is a sigh of relief that we can start battling diabetes without the bum pancreas excreting random insulin or if it is more a sigh of reality finally setting in, again and with a vengeance, our 3 year old’s pancreas is legit broken. I mean we knew it was, but now it’s more obvious, numbers higher than we have seen since she was first diagnosed.

It’s an odd feeling, for months it was all we could talk about in our house. Questioning how long it was going to last, thinking it was ending only to face lows after making basal adjustments. We talked about wanting it to end, so we could start to make the needed adjustments and settle into a bit of an insulin routine. We wanted it to end so we could feel more comfortable teaching others how to care for her when she is away from us. Hoping that some semblance of normalcy would indeed happen. Like when all her beta cells ceased to exist this magic switch would be flipped and diabetes would be easy to control. Ha! Like somehow after the honeymoon ended the diabetes gods would decide we have learned enough, we have grown, we have passed some imaginary test and poof — great control with little effort. Ha!

Honestly, we knew that that wasn’t going to be reality. But hey, a girl can still dream, right? We know that this disease is all about testing. Testing blood, testing the right insulin dosages, testing the right foods, testing the right correction factors, testing the right amount of time to wait between dosing and eating. It is also all about testing us. Testing our patience (mine runs very thin and my husband is a saint), testing our coping skills (those need some work), testing our support system (we should reach out more frequently, but that means we have to admit we need help) and testing how little sleep we actually need (that answer, more than we are currently fucking getting — we aren’t 20 any longer). All this testing sucks, it sucks for her and for us.

Diabetes also likes to keep us on our toes. When we think she’s going to go low, she goes high and vice versa. Just when we think we have ratios and corrections figured out she becomes more carb sensitive and less insulin sensitive. Just when we think she isn’t going to eat the entire meal, she asks for seconds (but I’m not going to complain about an increased appetite and the growth spurts that go along with that. Although they do wreak havoc on blood glucose levels). The constant inconsistencies are what make this the hardest. I’m hoping that we will see some improvement in these with the end of the honeymoon. Our biggest triumph this week was that she played at lil monkey bizness for 5 hours without going low. She was running, jumping, climbing and giggling. She looked like every other kid out there and stayed in range the entire time. It was really great to not have to force feed her smarties and to be able to chat with my friend while the girls ran around.

Someday this is going to be easier — at least that’s what more seasoned parents have told us. The ones who have been here before. I really hope they are right. Strangers have no reason to lie to us; they’ve been in our shoes and know how hard the beginning is. Maybe they just don’t want to be brutally honest, maybe they don’t want to discourage us knowing how young our kiddo is and how long this journey will be. I’m going to be optimistic and believe them when they say it’s going to get easier — it has to, for her, for us, for my sanity.

img_20170304_140710_874 — Rocking the tutu and fanny pack while flying down the slide. No lows. Wooohooo!!!

*Honeymoon is the period of time between enough of the beta cells being killed off that diagnosis occurred and the destruction of the rest of the beta cells. Because the pancreas is getting outside help from insulin injections the remaining beta cells start to produce more insulin. This causes insulin needs to greatly decrease. Honeymoon phases tend to be shorter the younger a person is diagnosed and varies immensely from person to person.

Letting Down Our Guard

Just when we start to let down our guard…BAM! Diabetes hits like a ton of bricks.

The past few weeks have been pretty uneventful. I feel like we have truly embraced our normal and taking care of our sweet child has just become routine. It’s almost as if the fates know these thoughts start going through my head “Take that diabetes” “We’ve got this” “We’re sleeping through the night” “She’s just like the rest of the kids on the playground” and BAM! Diabetes hits like a ton of bricks.

Just when we start to let down our guard a bit, we are smacked with reality. This past weekend Frankie and I decided to take the light rail to a swim meet to watch the kids swim, play with swim buddies and just enjoy the beautiful weather. Before we left I was on the phone with my mom who said “You really want to take the light rail and not have a car if you need to leave?” I knew what her undertones were “Do you really not want to have a car in case there is a diabetes related emergency?” I brushed off her comment, the funny thing is she gets that from me lately. I’m always the one who always wants to have an exit strategy. Always thinking about the what-ifs and highly unlikely scenarios. But come on, we aren’t going to skip the light rail, Frankie’s favorite form of transportation because it leaves us car-less. Hello, there is always Uberfamily.

Well, we’d been at our destination approximately 40 minutes when a bit of a panic came over me. She was running around with one of her favorite swim meet buddies, the 3-year-old son of fellow swim coaches. They hadn’t been running more than 20 minutes, when Frankie tripped and fell twice. Her first time tripping was when her foot hit a large divot in the grass — ok reason. The second time, I looked and there was no explanation. Mama instincts told me to check a blood sugar. 46?!? You’ve got to be freaking kidding me! I had checked right before we left the house (approx 75 minutes prior) and she was 188, which was perfect since I knew there would be lots of running around. Her sugar hadn’t been below 50 until this point, we have been pretty regimented about checking her when she plays and making sure she is eating lots of snacks. Ok, my kid is completely hypo-unaware, as are all 3 year olds. I embraced my new outlook of not freaking the fuck out, took a deep breath and treated the low. We sat in the grass, had a picnic of smarties, honey roasted peanuts, and did a temp basal decrease of 60%. The good news is she stayed in range the rest of the day. With the continuing running and playing and several uncovered carbs. Outside of a few quick blood sugar checks she looked like every other little one at the swim meet.

And you know what, life went on. It goes on every day. Fate just likes to remind us that we always need to keep our guard up just a bit.

Just enjoying the lightrail

family selfie