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.
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What is Type 1 parenting? It is waking up to texts in the middle of the night from your teenager telling you she lost her case. Lost her meter, her lancing device, her insulin pens… Trying to calm her down because she is stressing out over it and that clearly won’t help her blood sugars but also trying to remain calm and not let her sense your worries. Your worries of how she will survive until she can get access to backups of all those items. Your worries of how much all she lost cost and how that is months of savings. Your worries of being able to replace the items. Your worries of how this episode will impact her self-management going forward. Your worries of how she will blame herself and let this negatively influence her self-confidence. Your worries of how you didn’t see this coming, how if only you were more diligent, you checked on these things more, you paid more attention. You begin to blame yourself convincing yourself you could have done more. So then both parent and child are secretly putting themselves down trying to move forward but stuck in a deep, dark, middle of the night hole.
You fill out lost forms online at 1am and try and convince yourself to get some sleep. But you toss and turn and toss and turn and can’t distract yourself from your motivation to find the lost supplies. You watch the clock waiting impatiently for 7am to come and start calling all businesses that might have found it. You spend the morning on the phone pleading with those you reach to help search for the item, and waiting and waiting on hold just to try and speak with a live person. You continue to fill out more lost forms online and hope that someone will check these on a Sunday. You continue to reassure her that it will all be okay and put your faith in the dexcom, even though the site has not been accurate, and you hope you will not get the “no data” warning before a spare meter can be located. You hope and pray that her backup insulin stayed the right temperature during travel and that it is still good. You practice your mindfulness to try and stay calm and in a positive state of mind. The situation is not unmanageable. The situation is not the worst it could be. She is still alive. Because really that is what this is all about. The T1D parent never stops worrying about their child’s life. Never taking for granted that it can be taken at any moment, and at the blink of an eye. That we can be so diligent to prevent that from happening but we may find ourselves in a moment unprepared and unable to make a difference. That it can happen so quickly despite our preparedness. I may not still go in my teenager’s room and prick her finger in the middle of the night, but as long as she is in my home I will continue to go in and make sure she is breathing and moving in her sleep. And when she is hundreds of miles away, I will have some faith carry me through, because sometimes that is all you can do. (more on the specific lost case on our instagram page) 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. When you hear the word holidays, you usually think of Thanksgiving and Christmas time, however, holidays in the food world truly happen all year around. Summer holidays include a lot of backyard barbecues and pool parties. They are ideal for grazers. Yet, its hard for type 1s to graze. Accurately carb counting and dosing for grazing is a challenge that most cannot beat, though I'm sure all accept the challenge and try.
First, there is the assortment of food. Second, there is the serving sizes (who eats only seven chips or one cookie?!?). Then, there is the time frame. So the questions ensue...do I bolus half now, see what I eat and bolus more later? What happens if I bolus too much to start then I have a low (real soda and juices are on hand)? What if I don't bolus enough and I go super high and struggle to come back down? Most people don't realize the thought processes that T1Ds must go through just to eat. 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. |