100 Days Down

100 days feels like a huge milestone, but the reality is it’s just 100 days into a lifelong disease.

This past week we had our 3 month endocrinology visit.  As I’m sitting in bed, cuddling with my little munchkin, writing this blog, I’m having 2 very conflicting thoughts. 1) Has it really been 3 months already? 2) It’s seriously only been 3 months?!? I think this dichotomy of time exists in most experiences throughout life.  

I truly feel like the last few months have been a bit of a blur. So many changes have taken place in our lives. October 1st, my husband moved into the head coach position for the swim club for which he was working. One week later, I accepted a new position as a pre-op RN at a different hospital — I was ready for a change of specialty and needed different hours. Hours so we didn’t have to leave our almost 3 year old home alone at 5:30am, I hear that tends to be frowned upon. Two weeks later, Frankie was diagnosed with type 1 diabetes. Damn, October was eventful. Luckily, my last day at my job was 3 days after Frankie was diagnosed.  My new job was understanding and accommodating and allowed me to push back my start date. This granted me the opportunity to stay at home for 5 weeks and settle into our “new normal” — whatever the hell normal looks like. I’ll be forever grateful for the way timing worked out for each member of my little family.

Honestly, I can’t remember much between Halloween and Christmas. (Game 7 being the exception) Days were spent obsessing over numbers, counting carbs, checking blood sugars and looking at dosage charts. Nights were spent setting alarms, checking sugars, and then lying in bed for the next hour or so worrying about how her sugar would be in the morning and doing mental math (because obviously 3am is the best time for that). Those middle of the night (or early morning, depending on the day) hours were often filled with tears. Hours were spent worrying and tears were shed over events that are years off. “How will this affect her swimming?” “What about when she moves away and goes to college?” “I hope she has boyfriends (or girlfriends).” “I really hope she has great control before she considers getting pregnant. What if she never wants to be pregnant because of this?” “I hope she doesn’t grow up to resent us.” OK, Beth, slow your roll. Frankie is only 3 years old. There will be plenty of tears, fights, and opportunities to yell at diabetes throughout the years.  These are the moments that I feel “It’s really only been 3 freaking months?!?” And luckily, since some time around the 6 week mark, these nights have become few and far between, the tears aren’t as easily triggered and don’t flow as freely. 

Frankie was a perfect kid before Halloween and now she is a perfect kid who happens to have type 1 diabetes. She inherited her father’s easy going attitude, which has served her very well the past few months. They say kids are so adaptable — it’s totally true. This diagnosis rocked our world completely, but you would never know that it shook hers. Frankie never cried over shots, handles pump site changes like a champ, can do her own finger pricks without flinching, and knows she has to ask us if she wants to eat something. (So that we can count the carbs and dose her, she’s not on any food restriction). Most of our friends and family have been nothing but supportive. Not even blinking an eye when we have to check a blood sugar during a playdate, or whip out the blood glucose meter at the table at a restaurant. No sideeye from waitstaff when we ask for amazing pancakes (thank you Snooze) — hold the syrup and powdered sugar.

Luckily our friends know us well enough to not offer “cures” or tell me “there is an oil for that.” They know those comments would be met with eyerolls and science. We have received a few “That’s a lot of stuff to haul around for one little girl” “Are the doctors sure about the diagnosis?” “Are you positive she’ll have this forever?” Yeah, yeah, it is a lot of stuff (we take our backpack with supplies, and lots of food, everywhere we go), but it’s all necessary.  Yep, for sure type 1 diabetes, they don’t give a 2 year old a lifelong diagnosis without being positive. Yep, she will have it for-fucking-ever, until there is a cure. These are the opportunities that I try to educate and hope that the people making these comments are willing to listen. These are also the comments that I personally have to not let get under my skin. I have to take a deep breath, find my inner ohm, and realize that some people won’t ever fully comprehend what we are going through on a day-to-day basis.

It’s probably a compliment that some people don’t understand. It means we’ve seamlessly transitioned to our new normal. We’ve adjusted so well that most people we meet, even other type 1 parents, are surprised that we’ve only been going down this road for 3 months. These are the moments that make me feel like “Wow, it’s really only been 3 months?” and I beam with pride on the inside. Then I look on the dining room table, the bathroom counter, the bedroom floor, random corners of our home, and see that our normal includes test strips everywhere (those little suckers seem to magically multiply). Just one more reminder that we are surrounded. 

I also feel like I have aged 3 (or maybe 30) years in the past 3 months. 100 days of not sleeping will do that to a girl.  I’ve matured, yet at the same time I have become a bit more selfish than I was before. That said, I acknowledge that I have put a barrier between my little family and the outside. The mama bear in me has been awoken. 

When I see this hanging in the laundry room, in reminded I’m not alone. We are in this together, being the best damn pancreas we can. 100 days down.  We’ve got this!

Foot note:

If you know me personally and feel like I talk too much or post too often about diabetes, that’s on you. I’m offering no apologies for frequently talking about something that impacts my family on a daily, hell, on an hourly, basis. I have this overwhelming desire to educate people about type 1, how it affects my family, and all of the myths that surround the disease (even, and especially, in the healthcare realm). I’m pretty sure it is now my duty in life to spread awareness.

Paging Nurse Dramatic

I’m great in emergencies…at work.

I’m going to start by saying, I’m great in emergencies. Working high risk labor and delivery most of my career has taught me to keep a cool head, scan the room, anticipate needs, and act quickly and accordingly. Even when all of the commotion makes the room seem chaotic, medical professionals know things are under control, especially when you have a great team. Many of my co-workers would probably agree with the sentiment that I’m great in emergencies…at work.

Why can’t a cool, calm head be something that translates to “home me” as well? I’m an utter shit-show in emergencies when they involve people I care about (Ugh, that sentence is brutal on my soul to even type). You can ask my best friend about the time her toddler was bitten by a dog and I completely froze, ask my carpool buddy about the time she choked on a pill and I stood in the corner with nervous laughter, which she could hear the entire time…ummm, on second thought, please don’t.  There is something about things happening to the people I love that just sends all my calm and training out of the window. This is especially a bad thing because people tend to look to me to jump to action because “You are a nurse”. But it is a good thing to know my limitations, and I know others can be more helpful during emergency situations.

Honestly, I think this goes along with my glass is half empty attitude.  When things start to go south, I think of the worst case scenario. This was challenged at home a few weekends ago. Frankie had a random stomach bug. (Crap, where did we put that sick day protocol?) She puked while we were fighting a stubborn low — couldn’t get her up above 70 (her endocrinologist wants her between 100-180 as a reference point). We were at the library, of course random puking couldn’t happen at home. As soon as we got home, I checked ketones 4.2 — shit, over 1 and we’re supposed to call the doctor and give extra insulin.  “How the hell am I supposed to give insulin when I can’t get her sugar above 100?” “Oh my god, we’re going to have to go to the hospital?” “Mom, you go pack a bag while I call the BDC.” Yep, all three of these sentences came out of my mouth while I was dialing the phone to talk to our endo. (I realize now, it may have been slightly dramatic)

I was pacing as I was awaiting the call back from the doctor on call, I called Jason to let him know what was going on (because obviously the one person who keeps me calm was at a swim meet out of town), and I was throwing some clothes in a bag for myself (you know, since I was sure we were going to the hospital). The endocrinologist called back and was totally nice, told me to decrease basal rate on the pump (duh, less insulin will allow her sugars to go up), reassured me that the ketones were starvation ketones (yep, hard to have DKA when your sugar isn’t above 100), and encouraged sugary fluids so we could hopefully flush out the ketones and attempt to get her sugar high enough to give insulin. I took a deep breath and decided to tackle the task at hand, and remembered all of my freaking nursing education and how the human body works.  The rest of the night went off without a hitch (except that my atypical 3 year old doesn’t like to drink anything sweet, so much for treating lows with juice), sugars came up above 100, ketones came down with lots of fluids, and she only puked 1 more time in the middle of the night. Frankie survived her first sick day with type one. Although, I was running around like a chicken with my head cut off.  What the hell am I going to do if an actual emergency arises??

That said, I’m going to work on changing my home emergency response, my fight or flight is going to get its shit together. I need to, for my family and for myself. I need to remember to take a deep breath, take a good look around, assess the situation and act accordingly. If I can’t, I’m never going to survive this stressful, beautiful life we’ve been given.