I am not going to lie, I had no idea how to title this post. So I went with the obvious, as I am writing this post over the weekend. So yeah. I have two things to talk about. First of all this post. This post is number 200. My 200th blog post. How the heck did I manage to pull that off? Easy. You guys. The inspiration, the support, sometimes the suggestions on grammar and paragraph spacing. You my friends and readers are the reason how I have made it to 200 posts. Thank you . To celebrate I called Macy’s and asked for some fireworks in my blogs honor. They told me they would set one off next fourth of July for my blog. However, I could not wait that long and what if I took a picture of the wrong firework? That would be horrible!!!! So here’s the next best thing.
Thank you for reading me. I appreciate it. You guys are all awesome.
Now the second part of this post. This was originally what I have been thinking about since Friday, when the information crossed my twitter and Facebook account. JDRF is running a mobile challenge called Be T1D for a Day. Mind you some sarcasm and poor humor choices may pop up during the rest of this conversation. Mind you I am not trying to be jerky about things. That is not the case. Nor am I trying to be sarcastic, too much.
I love the premise of this:
“Throughout November, we’re asking people to better appreciate what people with type 1 diabetes (T1D) experience every day, every hour by taking part in a unique mobile-based challenge: T1D for a Day.
When you sign up for the T1D for a Day text challenge, you agree to receive as many as 24 text messages over a 24-hour period that simulate the constant blood sugar testing, insulin injections, and dietary decisions that confront people with T1D.
While no virtual campaign can recreate the many needles required or the physical and financial tolls of this serious disease, T1D for a Day seeks to deepen understanding of the many heroic steps our friends and loved ones with T1D take each day.”
The idea of trying to get people to see the emotional toil that people with type 1 face on a daily basis. The choices, the decisions, the battles we face, is amazing. I would not want to be the one who gets the complete poop dumped on them with 24 texts of work. I mean for people to realize that we make some conscious and unconscious decisions. Why sometimes we can eat the huge pumpkin pie (pie….)and other times why we run away screaming from the exact same thing. It can be confusing. Not to mention why people sometimes really don’t get it and why the stupidy stereotypes happen.
However, I was just thinking about the one line mentioned in the post by the JDRF, “While no virtual campaign can recreate the many needles required or the physical and financial tolls of this serious disease…” I couldn’t help think about some of the other things people will not experience. The feeling of the finger prick or needle injection. Maybe convince the person each time they need to do this they snap their wrist with a rubber band or arm or something like that. However, what about the other things they can’t get a text to do. “Blood sugar over 350 for two hours, drown yourself in 4 bottles of water and go to the potty over 15 times an hour” or “Feel lethargic and grumpy, act sullen. Have someone ask you if your sugar is low and tell them to *&%$# off.” Worse, “Your sugar is below 40. Go lie in the corner and ‘black out’ for 25 minutes” or “Low blood sugar while sleeping, wake up pour warmish water (not pee/sweat) all over yourself and your bed struggling to try to get someones attention or to get the glucose tabs.While shivering. Take a hot shower trying to warm up.” Maybe, “Stubborn low attacks drink 3 cups of OJ, wait 15 minutes see that the sugar hasn’t moved and drink 2 more glasses of OJ. Creatively start to curse.”
Alright, now that I got the sarcasm out of my system, I apologize. I really do like the program, I am in no way slamming it intentionally. What the JDRF is trying to do is a great idea. It goes back to that entire comment our friends/family half assedly make. Well Brian if I could take your diabetes from you for a day, I would. I love that comment (NOT). That is just a pity comment and frankly, I doubt you could really deal with it. Bitter much? Not normally, that comment just really gets my undies in a bunch. We can all make an offer for something that one most likely will never need to make. It is pity from most people. I know that there are some people who legitimately mean this, but others just say while at the same time in their head going, “yeah like that is ever going to happen.”
If people saw the real struggles we face, the serious injustice in the cards we have been dealt maybe they might be bigger advocates of some of the programs out there. Maybe they might see why we need a cure. Why insulin is only a small part of the big picture. I mean to some people it is referred to as insulin therapy, not an insulin cure. Obviously, if this is just a therapy, it is not a cure. Alright, let me seriously try to get off this soap box. I didn’t mean to do that. Where did that come from? Anywho, I give serious props to the JDRF for what they are trying to bring about. Just a small insight into the lives of those people living with type 1 diabetes truly face. Maybe some people will GET it. Maybe some people will continue to be just as ignorant. “You know Brian, I tried that text thing from the JDRF, I only got like 6 texts and there was nothing to concerning for me. I don’t see why you think this is such a burden.” Those people will never get it.
However, maybe others will. Thank you JDRF for your continued advocacy for us, your continued ideas and support, and most especially your continued search for that elusive “five year” cure. You guys rock.
Great post Brian! It’s true, there’s a lot more to T1D than just going through the motions. Even if JDRF gave these folks a stack of syringes, a vial of saline, and a BG meter, they still couldn’t experience even half the “life” we go through. I respect JDRF and everything they do, but I can’t help but wonder if the person who came up with this program is a PWD or not, and if they aren’t- if the PWDs in the organization argued that the program trivializes what living with and taking control of diabetes is all about. I haven’t yet decided if I will ask friends or family to participate, if I think it will really help them understand. But I suppose it’s a start, and the intentions are good.
Congratulations on reaching 200!
I am torn on this myself. Obviously. I mean this could just be the beginning, the next time they do it could be more intense. I like it, but I don’t really think it is enough. yet.
I love your post!!! I was initially excited about the JDRF T1Dforaday program, but now i’m feeling a bit skeptical. You might call it sarcasm, I call it reality!
(plus it’s unfortunate that T1Dforaday is only available in the US – obviously they missed the “WORLD” part of “World Diabetes Day”)
So, how about we have our own T1Dforaday program… each day, a T1D person will facilitate by sharing (tweets maybe?) some of the D crap we go through each day
7am wake up to alarms, test BG, 3.5/63, stuff candy in mouth before dragging sorry assed body out of bed in quest for food – welcome to the day ๐
7:30am struggle to calculate carbs in coffee, coffee and more coffee, was that one tsp of milk or two in each cup, bolus for 5g and hope for the best (include correction for un-understood “as soon as I step foot out of bed” BG increase)
7:45am either too few carbs in calc or over treated earlier, or maybe just fighting morning brain – feeling like a sloth
7:55am – bgnow 8.6/155 before drive to work – to correct or not to correct, that is the question?
OK, you get the point ๐
Even as a fellow person with T1D i’d be interested to get the play by play on someone else’s day.
Nov 1st, follow #myT1Dday and lets get the party started! (i’m willing to go first – if someone will just remind me when it gets to being Nov 1st!)
Lol, let’s see if anyone else has any interest. I would be a little worried about giving me that much control… Muahahaha.
Happy Important Blog Day!
I also can’t decide if I want to get my family involved in the T1D for a Day project. Can I submit their phone numbers without them knowing?!
There is a small part of me that wants to do that as well… How evil would that be? But I do wonder does it start Midnight of or like from 7:00 am to 7:00 am?
First of all, congrats on 200 posts!
Secondly, I love the way you moved through this issue… There is something to appreciate on JDRF’s part. They are trying… Maybe a texting app with around 200 texts/day may be more effective? haha. In addition to the things that the app can’t convey are those moments in life when something reminds you of diabetes that is completely unrelated. Like a shoe…You look at that platform studded heel, and think “oh that would be great on someone else, who doesn’t have diabetes and have to worry about the well being of their feet” Can there be a text for that?
I also share your concern about some one getting only 6 texts and deciding “it’s not that hard” … people already say things like that enough. “so you just check your sugar, and take insulin for the food you eat, right?”
Here’s my feeling of underlying reality… we create blogs, those of us with the big D, because we know that even a SPOUSE or brother or sister -who lives with is and is around us 24/7 while we live with diabetes- will not be able to 100% understand how much energy it takes to manage the disease. And to everyone else… it’s invisible. people cannot see it. it must not be hard. right? we create blogs to help them understand, and to connect with each other. the DOC is the app… it just takes too much time to get to know if you are an outsider and you aren’t being paid for it.
So, I am with you, we have to salute JDRF for helping those type 3’s inch closer to understanding. BUT there is something aggravating about it, too. Because what any type 3 needs to understand is already here. This is it. Your blog is it. 200 posts waiting to be read, shouting “this is what diabetes is like!” or “just take a fraction of the time that i take living with the disease to read how it impacts one person.”
So, I salute you… for 200+ days of writing and for being there, showing some one what it is like to live with type-1.
Congrats on 200! That’s awesome!
I too am not sure how I feel about that T1D for a day thing…
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