People went out of their way to help in the beginning. Things like making sure there were sugar-free snacks/drinks at birthday parties and special school days. Asking tons of questions. Encouraging statements. Medical professionals were more supportive with thoughtful comments and suggestions. Heck, we were totally spoiled to have a nurse for one year whose grown daughter has T1D.
Four and a half years later, I swear everyone has more ridiculous questions, but I'm sure it's just because I've heard them soooo many times they drive me crazy now. Things like:
- Did your kid eat too much sugar when she was young? NO.
- Was she active? YES.
- Family history? Kind of. Lots of Type 2 on the hubby's side and my mother's cousin has Type 1.
- Why do you let her have cake, ice cream, cookies? Isn't she supposed to have zero sugar? Well, hmm. Do you eat cake? Then she can, too, she just has to TAKE INSULIN.
- Foods teachers who constantly "encourage" her to use Splenda in her baking projects -- after being told repeatedly by me and my girl that it ruins baking, so NO we don't bake with it. Not to mention that Splenda doesn't lower the overall carb count by enough to ruin otherwise tasty food.
- Kids who bring cookies to school for the class and by-pass my girl because she can't "have" sugar. Or adults who say my girl "rarely" gets to have these kinds of treats because guess what? She does. Since you don't live with us, perhaps you could not spread misinformation.
- A pump and CGM (continuous glucose monitor) is a cure. A better treatment, YES; cure, NO.
- How does her pump know she's low/high in the middle of the night? It doesn't. Mom gets up to check -- sometimes multiple times in one night.
- Nurses who haven't seen you or your kid for six months asking how many times you've adjusted insulin rates. Please tell me you didn't just ask that!!
- Family doctors who tell you they know nothing about Type 1 but insist you see them every time your kid needs prescriptions renewed. Why??? You're the one who said you know nothing about her disease, so, please, just send our usual pharmacy a renewal. Don't waste my time. Or hers.
- Newspaper articles suggesting the number of video games played by kids today is the cause of diabetes, along with other chronic diseases. Doubt it, but, hey, you can't fix stupid. Those of us who deal with this disease every day are stuck listening to assumptions and unprofessional opinions of what causes it. No matter how many times I explain Type 1 is caused by an auto-immune reaction in the body and the pancreas no longer has cells to produce insulin, there's another idiot behind them claiming my kid just needs a teaspoon of cinnamon each day to FIX this. Or a Paleo, vegan, low carb diet, exercise, etc. to get off insulin. (Insert frustrated swear words here.)
- Teachers who have been told not to confiscate her phone because she may need to contact me regarding her disease -- yet conveniently forget this and make her fight for it because, you know, all teenagers have an attitude problem. Not to be rude, but, if you refuse to follow the rules laid out for you, how do you expect a teen to follow yours?
- Medical professionals who automatically assume you have no consequences in place when said teenager forgets to give insulin when she eats. Oh, she gets in shit, each and every time this happens. Trust me. However, she doesn't really seem to care at the moment so I keep doing my best to kick her in the ass to care for this damned disease. I'm not with her every second of the day. Since I've always worked, I've never been with her every second of every day.
- Medical professionals who don't ask questions about submitted numbers are very annoying. Do I get you are only as good as the information you are given? Yep. When you see gaps, maybe you should question what was going on that day instead of snapping off a judgement about what you THINK was going on and tell us you are unable to help -- because, ya, my kid actually WAS testing 4 + times a day -- just on a meter that didn't connect to her pump. There were also days she really didn't eat until 3 p.m. (Saturday's and Sunday's -- cuz you know teens are notorious for sleeping till 1 or 2 p.m.) but was accused of not giving insulin. Since you asked to see these numbers, I don't really check them closely before sending them to you, automatically filling in the holes -- but I guess I should because questions don't seem to be a thing in your world... Plus, I keep manual records with info on it that can't be entered into the pump eg. illness, headache, monthly girl problems, which numbers are caused by not giving insulin -- cuz not all highs are caused by that -- some are completely unexplainable. Give me something constructive to work with. Or better yet, just don't say anything. A working pancreas adjusts insulin levels 3600 times per hour, if I remember that correctly. Try making that many adjustments manually...
- Even though you are a medical professional who deals constantly with this disease and a variety of people, doesn't mean you fully understand it -- unless, of course, you have lived with it yourself. These are the medical pros I wish there were more of. They understand you can do exactly the same thing for an entire week and get different results each day. They don't judge because they know you are doing your best. They know you are exhausted and probably haven't slept a full night since diagnosis. They offer encouragement and kindness instead.
Please don't tell me that cinnamon totally regulates your blood sugar levels -- even though you have a fully working pancreas. Or that eating too much sugar caused my kid's chronic disease. Or have you tried -- insert totally ridiculous suggestion here -- to cure her? Seriously, if it was that simple to cure this disease, don't you think it would have been eradicated by now???
Please, as a professional, before you comment, ask questions. Make sure you know what place we are at. Just because we aren't new to this disease, doesn't mean we aren't struggling in one area. We still need support -- even if it's just someone who understands the disease and the level of difficulty it presents, both emotionally and physically.
If you are just a regular person, ask me all the questions you want. I'll explain how this disease works in our world, but, remember, it affects everyone differently. What works for my girl may not work for the next person you run into with this disease. There is currently no cure -- although millions of people wish there were. Please. Stop spreading misinformation.
Eating too much sugar or being sedentary does not cause any type of diabetes. It may be a factor but not necessarily a THE cause. Genetics also play a very strong role and poor life style choices may simply Type 2 to the forefront.
I think it's terribly unfair to blame anyone with Type 2 diabetes for a disease they probably could not have prevented. We certainly don't blame cancer patients for their disease -- even though they may have exposed themselves to cancer causing things in their lifestyles, such as tanning beds or cigarettes. Nor do we blame people with heart disease for eating too much salt or red meats. It just is.
So let's stop blaming people with diabetes for their disease. They didn't cause it either.
#typeonediabetes
#diabetes
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