On Monday August 3rd, at about 4:11pm, our Love Bug was diagnosed with type 1 diabetes. It wasn’t how her doctor’s appointment was supposed to go. I was going to joke with our doctor that I really didn’t have time for a sick child, we had so much else going on. We were going to laugh about it and I would say I was just kidding. Bug, the boys and I were going to leave the clinic, maybe with a prescription, maybe not, and Bug would get better like she had in the past. But instead, when our doctor told me the test results, my ears started ringing, my eyes went blurry and I wondered what the heck I was going to do with the crock pot of food I had sitting at home on the counter. Our whole world had changed in an instant. The picture above is from the ER. Bug and J were watching a movie and J was laughing so hard. It’s a bittersweet memory.
For those who don’t know, type 1 diabetes is an autoimmune disease where the body’s immune system attacks and destroys the beta cells in the pancreas which produce insulin. Insulin is the hormone that enables our bodies to get energy from the food we eat. Without it, the body can’t absorb the glucose, or sugars, from the food and the body doesn’t get the energy it needs. This leads to high blood glucose and high keytones and a host of other things, which, for the sake of simplicity, are not good. Type 1 diabetes is not preventable and there is no cure. People with type 1 diabetes require insulin every time they consume carbs, every day, for the rest of their lives. And yes, we need carbs. They are what feeds our brains and bodies for living.
With the newly minted diagnosis, we were told to go to the emergency room at Children’s Hospital in St. Paul and from there, plan on Bug staying in the hospital for observation for two more days. In my mental fog, I drove my three children home, unplugged the crockpot, packed food for us to eat because it was dinnertime and packed a bag of things for Bug. I couldn’t get a hold of MJ at the clinic so once I finally did, we coordinated our plans – the children and I would check in at the ER and he would go home, pack a bag and meet us down there. I called my mom, too, and she dropped everything and met us in the ER. For two days, Bug’s blood glucose and keytone levels were monitored and corrected and MJ and I attended classes to learn how to care for someone with type 1 diabetes.(Also, I should mention, we were rebidding on the house we ended up buying and got confirmation on it while we stood in the ER. If we ever meet, I’ll tell you that story. Another weird one for the year.)
It was completely overwhelming. New terms and methods of care, how to figure dosages, how to inject insulin, a very powerful drug, how to count carbs and use various diabetes-related medical paraphernalia. And then we were sent home to continue these practices. By ourselves. Like we knew what we were doing.
Since I already felt like our life boat was sinking, this revelation felt like someone was pushing me down and holding me under water. No matter how hard I fought, I couldn’t get to the surface. I felt broken. I was horribly sad, deeply angry, confused, frustrated and brain dead. My body ached, my eyes ached, my heart ached. I raged. Why did this happen? Why Bug? Why us? This is our daughter, our lively, thriving, bouncing girl, our first born. We are not sick people, we don’t have diabetes in our family, why did this happen? I cried. I felt so much sadness. Sadness for the diagnosis and the challenges. Sadness for the burden of type 1 diabetes. Sadness for the loss of the life I thought we would have, the life Bug would have. Sadness and shame that I was having such a hard time when I wasn’t the one who actually had it.
For about three weeks, I functioned from a place on the couch. I covered the basics like food and helping the children with what they needed but aside from that, I drown out the rest of the noise with the laptop and the TV. I avoided the outside world. I had nothing nice to say to anyone, I was a terrible conversationalist. I couldn’t answer “How are you?” with a pleasant reply and I didn’t care to hear about other people’s lives either. I was in bad shape.
After the third week, I decided I wasn’t able to get myself out of the deep slump and since I hated how I felt, I got help. After a few more days, I woke up feeling like myself again. I mean, like myself but in a whole different world. And life kept going. We moved again, started school and soccer and life continued on. Diabetes is part of our life now, there is no escaping that. However, we’ve decided it will not define our lives or our Love Bug’s. We are strong and capable and are stubbornly perseverant. :)
Alright. I didn’t realize I would be so wordy so I broke up the post into two three posts. I’ll post Here’s part 2 and it answers some questions we get frequently and share thoughts on learning, living, loving and moving on and details our daily routine. And then part 3.
Amy – thank you for sharing…. your new normal. Love this: “We are strong and capable and are stubbornly perseverant. :)” xoxox
Thank you, Sara. :)
Hi Amy,
First off, I’m SO incredibly sorry this has happened to you and your family. Type 1 diabetes is a burden that only people who have it and those who care for someone with it–especially in childhood–can ever truly understand. I was diagnosed with type 1 diabetes in March of 2008 when I was 18. It was devastating. I went through a long period of time in college when I did a good job managing it, but I didn’t take it serious. It was this extra obligation floating around in the background of my life that I dealt with on the side. I could get away with that because they caught my type 1 early and I wasn’t yet requiring a lot of insulin. It wasn’t until about a year and a half ago that the weight of the diagnosis hit me, and it was a very dark and difficult time for me. On a bad day, it still can be. I’ve written about it on my blog, if you’re interested. I also link to a couple of resources/books that have been hugely helpful to me in understanding this disease. (You can see the posts here: http://www.essentiallyeclectic.com/category/life-and-blogging/type-1-diabetes). I don’t mean to be preachy but if I could give any advice that would be helpful I would recommend looking into the following things:
1) If you haven’t already, shop around for the right endocrinologist. So often doctors scare and fear monger and bully. They mean to get you (or your child) healthy, but so many go about it the wrong way. You want someone who is encouraging, who has realistic goals for your child’s A1c and pre/post meal blood sugars, who is up to date on the latest research, who works with a lot of type 1 children (this is especially super important), and who can refer you to a CDE (Certified Diabetes Educator) who can help you and your child understand this disease better. You will probably be offered a class (and if you’re not, find one) that will teach you more in depth how to manage this disease than what they could teach you in the hospital. I took a 9 week course that met once a week and in that course my CDE told me something that has really stuck with me. She said “You need to know more about this disease than your doctor does.” And it is SO true! Don’t be afraid to get second opinions. When it comes to diabetes, there are a lot of medical “professionals” who are incredibly ignorant about this disease. You would be appalled at the stories I’ve heard. This disease acts differently in different bodies, and how it behaves will change as Bug goes through her teen years and beyond, and you and she will know her body best.
2) If you can afford it or if your insurance covers it, look into the Dexcom CGM, which stands for continuous glucose monitor. You may have already heard of this. It is a small thin sensor that is inserted under the skin and attached to a transmitter that takes a blood sugar reading EVERY FIVE MINUTES! It gives you a nearly real-time look at what your little girl’s blood sugar is doing. You can set it to alert you of high blood sugars and low blood sugars. This thing saves lives. If you check out my Type 1 Diabetes FAQ blog post, I share a couple pictures of what these graphs look like if you’re curious. I have a CGM because I have hypoglycemia (low) blood sugar unawareness. I don’t start to feel lows until I’m in the 50s or lower. This thing is set to beep at me when I hit 75, so I can catch lows (and highs) before they get too low or to high. There is even an attachment you can order that will allow you to put Bug’s blood sugar data in the cloud. That means she could be at school and you can see her blood sugar readings from home! This thing has changed my life. It has helped me regain some awareness of low blood sugars, and I’m currently 23 weeks pregnant and using it. I can’t emphasize enough how helpful it is. The shot to put it under the skin is no fun, but the data it provides is so worth it and kids use it all the time. Dexcom is, IMO, the best CGM on the market right now. When you feel a bit more comfortable with insulin, you may also want to consider an insulin pump. I go into detail on my FAQs blog post about what this is and how it works if you’re interested. The pump has also changed my life: only one shot every three days instead of every time I eat a carb? Yes, please. Plus it allows you to have control in ways that insulin injections do not. For example, if I have a mild low blood sugar, I can simply turn off my basal insulin for an hour. When you’re on injections of long acting insulin, you can’t “turn off” insulin that’s already in your blood stream. The pump a pretty cool device; you’ve probably already heard of it by now. I recommend the Animas pump, OmniPod, or T:Slim pump. (I like my Medtronic pump but ultimately wouldn’t recommend it for a few reasons).
3) Join support groups. It took me years to do this and I wish I did it sooner. Facebook has a lot of support groups and joining a few has also been immensely helpful to me. There are support groups there for parents of type 1s. I’m a part of several, one for Type 1 and Pregnancy, one for Moms who have Type 1, one for Breastfeeding with Type 1, one for Dexcom, one for my insulin pump, one for type 1s who follow a low carb diet—you name it and there is a group for it. The type 1 community is one of the kindest, most understanding, most helpful bunch of people you will ever meet. They get it. And its really nice to have a group of people like that to answer your quick questions when you have them. Like does this or that food affect your blood sugar much? Or, I forgot to wipe my child’s skin with alcohol before inserting a needle, will she be okay? (Yes she totally will be). This vial of insulin looks a little cloudy instead of clear, can I still use it? (No, probably not). Things like that.
4) For peace of mind, there is a study called TrialNet going on that allows relatives of type 1s to be tested for the genetic markers of it to determine the likelihood they will develop it in the future. It helps researchers study the way the disease develops which may one day lead to a cure. It is completely free. 96% of people who take it have a very low likelihood of developing the disease, and even if another child has a greater chance at developing it because they have more of the autoantibodies, it does not necessarily mean they WILL develop it for sure. If you do have a child that tests more likely to develop it, they tell you how often they recommend screenings. They do this so that the disease can be caught earlier (if it happens at all) so that hopefully more kids can be kept out of frightening and unexpected emergency room situations. If you can begin insulin therapy before damage from high blood sugars is done to the body, that is always a plus.
5) You might consider looking into the low carb high fat diet (LCHF for short). It is popular in type 1 communities. It is a little unorthodox, but a lot of type 1s I know have had success with it, and I’ve personally done research into it and have found there is a growing body of research to support the idea that good fats are not bad for you and the number of carbs recommended by your average nutritionist are not necessary (some carbs are, but most aren’t). If you find you’re having difficulties managing blood sugars following the standard American kid’s diet, this may be an eating style to look into. Again, at present it is considered an unorthodox way of eating although you will find some doctors who endorse it, so you will want to do your own research. I’m personally willing to give it a try once I have this baby based on the research I’ve read. I majored in the sciences, so I’m big on the importance of research :)
Hopefully these thoughts aren’t too unsolicited :) But I figured if I found myself in your position these are things I would want know about (and I apologize if you already know all this!). The last thing I would say is ignore the ignorant comments. I’m sure you’ve gotten many already. People telling you you must have fed your kid too much sugar, wondering why your kid got this if she wasn’t overweight, telling you you can cure it with cinnamon or okra or some magic smoothie or vitamin their friend’s neighbor’s UPS guy took who now no longer has diabetes because of it. Crap like that. It’s awesome that you are a blogger, because you can use this platform to educate and inform!
You’re a brave momma and your little girl is lucky to have you! If you have follow up questions I can help with regarding anything, or if you just want to complain about how irritating this disease is, please don’t hesitate to reach out. My contact email is listed on my contact tab of my blog. God bless!
Hugs,
Gabby
http://www.essentiallyeclectic.com
Thank you so much, Gabby! What a wealth of information. MJ and I are going to get educated on the pump starting in January and we just heard about the continuous glucose monitor and hope to include it in Bug’s care plan. I’m so thankful for helpful technology. We are planning on join that TrialNet study too. Thank you for sharing your story. It makes my momma heart happy to know of healthy adult women doing regular, ordinary things. I pray your good health and care continues. God bless you too.
I just keep reading this over and over and thinking, damn…she is so lucky to have you as a mom. (You already know you are lucky to have her as a daughter. Sometimes we need to be reminded the blessing runs both ways.)
Thanks Meg. You’re right. It’s nice to hear. I think I was a momma bear before this so now I’m not sure what animal I resemble. A grizzle grizzly? :)
You’re such a strong mama, and you’re going to keep your family strong. Thanks for sharing this story and what life looks like for you guys now. Beautifully, wonderfully written!
Thanks Lindsay. I appreciate your message. I am momma, here me roar. :)
You are so strong for even writing and sharing about this. You can tell what a close loving family you all are! xo
Thanks Amy! We sure try. :)