I seem to remember flashes of those moments surrounding the diagnosis. The days leading up to it, the visit to the pediatrician to confirm, waiting for hours in the emergency department, finally settling in upstairs for the long night ahead, the constant beeps and alarms throughout the night, my daughter asking the nurse every time she walked in to silent the alarms if she could eat, eating cold eggs the next day at the clinic, meeting the clinicians for the first time. But despite how much I can clearly visualize just thinking of and recalling, there are a lot of things that just didn’t stick. I think I asked our diabetes nurse educator the same questions daily for two weeks. There was simply too much information to process all at the same time. Too much to remember. Too much to calculate. Living day to day finally took on new meaning.
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This weekend we will be celebrating her diaversary (8.27.2013). What is a diaversary do you say? It’s the day one was diagnosed with type 1 and lives as we know it change with no turning back. It acknowledges all the hard work and effort that goes into caring for this diagnosis and how it impacts everything that we do yet doesn’t stop us from doing things. It celebrates being a “diabadass” even though we didn’t choose or deserve this fate.
So for this 5 & 5 (pros & cons) I bring you the topic of having TYPE 1 Diabetes. Introducing a new series, hoping this gets me writing more. I’m calling it my 5 & 5 series. Each post will take a topic and point out 5 pros and 5 cons. While I think it is always important to focus on the positives in life, I think it helps to recognize the negative attributes and be aware of them to help minimize the impact that you allow them to have on you. Driving down a street you want to be able to see the potholes in order to avoid them.
So for the first topic I have chosen TECHNOLOGY. Now this is one that may come up more than once because there are so many more pros and cons than just 5, but this is a topic that has come up in some of my conversations lately and one that is tied very closely to the advancement in treatment of T1D. So let’s begin…. A big part of type 1 awareness is educating on the difference of type 1 and type 2. Both labeled diabetes but each its own and unique diagnosis. Some commonalities, but more differences. We focus on type 1 because that is what we know. That is what we have experience with. We call it type 1 and to us we do not know much about type 2, at least not enough to speak as if we are experts. We can call out differences between type 1 and type 2 but we don't know the slightest about type 2 treatment and don't try and push information on others.
We can find ourselves in opportunities for conversation to educate and advocate on what type 1 means to us. But when we hear or watch media mislead the awareness effort it can be discouraging. When people are misinformed or mislead, it can be difficult to change those misperceptions. It is like a first impression - you can't have a second first impression. You can influence persuasion but the person has to have a willingness to change their thoughts and beliefs. There are many articles that note the many times that tv and movies have gotten it wrong. Such as this article on Beyond Type 1's website. Diabetes is so often incorporated as a punch line or a joke. But to those of us who live with it all day every day it is anything but a joke. Knowing what we know as well, we can infer that most cases are referring to type 2 but thats never specified. Regardless though, it's disrespectful and unnecessary. I remember sitting in the movie theatre, laughing my ass off during The Boss, loving Melissa McCarthy, and then they cracked a diabetes joke and it was like my heart sank a little. Disappointed to say the least. The joke was not needed, and it just came off as offensive. It ruined a good moment. But for all the times media gets it wrong, its important to recognize the times it gets it right. Watching Chicago Med the other night, a patient presented in the ER and had one doctor quickly diagnose and dismiss, where another doctor wanted to run more tests and dig deeper. The patient's symptoms had nothing to do with diabetes, type 1 or 2, and even when diabetes was mentioned the type wasn't specified. But it didn't matter. The patient thanked the doctor for listening to him and for caring and for not blowing him off. That was a moment that we could greatly relate to. Doctors hear or see the diabetes diagnosis and immediately think that is what the source of the presenting problem is and often overlook other signs and symptoms quick to blame the patient for poor management. We will go to the ER and her blood sugar will be high and as soon as it comes down to the low 200s they try and discharge us. Every time, doesn't matter what we came in for or what is wrong with her it's like a magic number. I've grown the thickened skin to stand up and refuse to leave if I feel our issues are being ignored. Once after I demanded another blood test before leaving, they came back in and said they would admit her. To go from sending us home to admission demonstrates a clear lack of regard to her health and well being. So when the patient on Chicago Med mentioned the pattern of doctors not listening to him and just relating everything to the diabetes, I melted into a moment of relating to this character on tv as if it could be real life. That feeling of being ignored by supposed experts who we turn to and rely on to help us and heal us is something I know all too well. So shame on you screenwriters cracking jokes that aren't even well informed, and thank you Chicago Med writers for not feeding the misinformation and bringing us in to love you even more. Type 1, the complex, unpredictable, super-sensitive chronic illness, can challenge all types of people in all sorts of situations. We have faced discrimination. We have faced ignorance. We have thrown our hands up and surrendered. We have slaved to treat. And about 88% of the time we have confidence in what we're doing.
Just because we live this every minute of every hour of every day, does not mean we are not thrown surprises. Most people fail to recognize the complexity of type one and the millions of possible variables that can factor into affecting it. Its a lot like trying to memorize all the possible ingredients that contain gluten. This year has been a tough year for my daughter for a multitude of reasons. In regards to T1 though, we have faced a lot of high blood sugars, ketones, and high A1Cs. We ended up back at the hospital last week. We even recognized the ED doctors and nurses, which is not a good sign. |