Tag: typeonelife

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.

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.  

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!!