You know when Abbie was first diagnosed, I think I stated my husband and I knew absolutely nothing further than what the hospital told us, what the internet could briefly inform us, and what little I remember from health class about Type 1 Diabetes. Don’t get me wrong the internet is full of fantastic information if you know where to find it but it can also be a very, very, very scary place for a newly diagnosed Type 1 Diabetic and/or their caregiver. If you just type in diabetes and complications you will get disturbing images of missing feet, abscesses, among other nasty little things. If you rephrase and type in Type 1 Diabetes complications, the images stay the same, but added in will be words like kidney failure, retinopathy, neuropathy, liver damage, and heart problems. You see things about how low blood sugars can kill you and how high blood sugars cause complications over time. Well what the hell?
So basically between what I learned at the hospital and what I read on the internet the first few days was that my daughter had an incurable disease that would alter everything about her life. On the plus side there was a medication I could give her to manage it and make her life mostly normal. However, on the flip side, if I gave her too much of this medication I could kill her or if I didn’t give her enough of the medication I could cause long term side effects and kill her. Wait, what?
One positive came out of Abbie having such a long honeymoon phase. It gave me time to research, learn, and research some more. I learned a lot about insulin in that time, a lot about carb counting, a lot about the reality and necessity that comes from being afraid of insulin. I will say when it came time for her to be on a long lasting and fast acting insulin, I still panicked and was still very conservative at first. I followed the doctor’s orders to the letter until, well until I didn’t. As you have read until this point, I reached a snapping point where I knew that I could not wait on someone that only saw my kid every 3 months to make a decision about her care when I knew I could look at the data and make that decision little by little right now.
When she went on a pump in October and her Dex in November I found the Facebook communities. There are so many of them. If you are newly diagnosed and you haven’t found them, please go looking. There is T1D Mod Squad, You know you’re a Type 1 when, specialized Omnipod and Dexcom groups, Tandem groups…all of which have a plethora of information. These groups are so helpful and full of people that genuinely care and know exactly what you are going through. They welcomed me with open arms and help any way they can.
So then I felt a little less alone, and my husband felt a little less alone because he joined those groups soon after. I think it was around January or February of this year that I keep seeing people posting about a podcast in the groups that was fantastic and a blog that was extremely helpful. I meant to go look at it then but life happened and I just didn’t have the chance. It was around March when I saw the name come up again in a group and I found www.Ardensday.com which in turn led me to the Juicebox Podcasts. I think as of today I am on episode 125 but Scott had currently uploaded episode 247. I listen religiously when I am putting away groceries, cleaning the house, or driving to and from work. He is a Dad just like you or me, his daughter was diagnosed when she was 2 years old. He started out writing the blog and then went on to do the podcasts. He is so informative, so caring, and just has so much to give.
Scott Benner taught me about being #boldwithinsulin and how to #bumpandnudge the numbers instead of overcorrecting a low to get a skyrocketing high then overcorrecting that high to get another low. Basically how to stop the rollercoaster. He reinforced things that I had already been doing for months and allowed me to look at my husband and say, “see I’m not crazy (well maybe I am but in a good way), someone else is just as aggressive too!”. We are taught to be afraid of insulin which keeps us in this cycle that higher blood sugars are okay but the higher blood sugars cause long term complications that will kill my kid too and I am not okay with that, I was never okay with that. I stopped being afraid of insulin and learned to have a healthy respect for it but knew that it was there to help me if I researched the data and learned how to use it properly.
Another fantastic website and app is Beyond Type 1. The website gives up to date news information and the app is a lot like Facebook but for anyone with T1D or their caregiver. You can post about your life, your problems, your blog, your happy moments, your sad moments, or anything in between. It’s a place to just connect and feel like you belong.
Two books that have been like my T1D bibles are “Think Like a Pancreas” by Gary Scheiner and “Sugar Surfing” by Stephen Ponder. These books have a lot of great information and can change the way you think about things.
Most of all, personally I think you need to just trust you. You are with your kids 24 hours a day, 7 days a week, 365 days a year. You know how they act, how they eat, how they exercise. You know how they react to certain situations and how they act on a normal basis. You know their normal. I know that when Abbie is happy, smiling, getting along with her sister and the entire family, wanting to play, she is in a normal range. When she is argumentative, has an attitude, tired, grumpy, she is more than likely low. And when she is hyper, complaining of a headache and a stomachache, she is more than likely creeping up higher than I like.
And if you are reading this and you are the one with T1D you definitely know yourself better than anyone else… trust yourself! That is the moral of it all for the caregiver or the person with the disease. Trust yourself, trust your gut, trust the reaction, and trust the responses.
Until next time….