TalkData_blog

I am a data geek… there is nothing I love more than a good spreadsheet, except for maybe if that spreadsheet has a carefully crafted master dashboard, that dynamically updates based on new entries… (yes….. soooo coool)… anyway, I digress…

Why is my love of data relevant you ask? … ever since I was diagnosed, I’ve been looking for data to help me understand this disease — who gets this disease? when? how many people are like me and diagnosed as an adult? where can I find them? do they know why people develop diabetes at one age versus the other? what are the different methods people use to control it? As a parent? as the diabetic? is there an average A1c? how do diabetics in the US stack up against other countries? how is care different in different places? is it because of availability? insurance? cost? is there a gold standard of care internationally? I want all of these numbers and then I want to put them in tables and charts and I want to understand. And maybe help others understand. What are the rules? What are the parameters? Come on diabetes!! At least show me the odds? What do I need to look out for? What are things that I need to know? What should I be planning for? what is inevitable and what can I avoid? if I can avoid something how do I do it? what will it cost? is it money? time? lifestyle change? Once I know all of these things, once I have the data, I can form a plan — an optimization, if you will, of how I need to run my life… I am good at this, give me the parameters and I will find the best way… but I need to know what the rules of this game are…

A while back I posted an infographic on type 1 diabetes, this is the type of information that I am looking for, except more… I need to know more. I don’t just want the sanitized statistics, I want the data… this desire has been top of mind again recently because I have again noticed divisions in the diabetic community, not bad divisions, just differences… first you have the division between type 1 and type 2… I could dive into the medical differences here, but they are literally called different types #obivousdifference. Then you get into the subtleties — as a type 1 when were you diagnosed? as a kid? as a teenager? in college? under 30? over 30? Add on — how are you treating your diabetes? Injections? Pump? CGM? A combination there of? Add on — where do you live? what care is available? And additionally important — what type of lifestyle do you have? Are you active? Do you have a family? Do you have a support system? Are you single or married? What kind of job do you have? Do you cook? Do you like to cook? What things do you want to do that you will have to adjust because of diabetes? what else do you have going on that makes you unique? Other diseases and/or medical conditions? Specific beliefs? Hair color? astrological sign? Seriously, is feels that deep sometimes… like I am looking for the one other person in the whole fucking world who is like me and #jokesonme I’m the only one.

I want to know how many people are like me… type 1, diagnosed as an adult in my twenties, active, or striving to be, with a support system of friends and sort of relationship that is borderline co-dependent in the best way possible, with a three-legged dog, who is also sober and bipolar (me, not the dog) … okay, so I recognize that I may be the only one in my specific situation, but in the broadest sense I am looking for other type 1 diabetics who were diagnosed as adults, while living on their own/being responsible for themselves… there have to be more people out there. Everyone my age that I talk to was diagnosed as a kid, and from what I can tell, it’s totally different, they are already adjusted, fine, yeah, maybe they are still mad and resentful about it occasionally, but they have years of experience under their belt at this point. I’m still new at everything, I don’t have parents to sit in on doctor’s appointments and help me to “get it right” — it’s just me and the dexcom video… youtube is not a support system substitute. Although, that’s not to say that I’m not glad sometimes that my parents are not involved, and that I get to make all my decisions, for better or worse, on my own. At this point, it’s not a question of better or worse, my situation is what it is and I am looking for others that share this experience, not just ones who have walked through it and are on the other side, but ones who are walking through it now, who can share my journey and so I can share theirs too. I have looked for support groups, but they are all general and the synopsizes are usually geared towards parents… I have no interest in sitting in a room full of parents trying to figure out how to control a disease that they cannot feel… I have no ill will for them, and I recognize that their journey must be tough, in a different way than mine, but tough all the same, but I need to find others who are walking my journey. I need to find those people. I wrote a while back that I felt I had found my people, and I did to certain extent, but that was when I was just looking for type 1 diabetics, now that I have progressed in my diabetic education, I am looking for the next layer — the people within my people, who have walked, or are walking a journey closer to mine than just insulin dependence.

This has been a long post… I’m not sure if it makes any sense, or if any part of it will make sense to anyone. This is how I feel. This is what I’m looking for. This is where I am.