Dear Diabetes, you suck.

a front end developer who also happens to have type 1 diabetes

Tag: Help

Celebrate Everything… Again

Diabetic BraceletI found this bracelet on etsy and I love it. I am just so happy to be able to relax knowing that I have that extra layer of security, since I am alone so often.

I also tweeted about this because I wanted to give a shout out to my sister… she’s hilarious, check it out here.

I am still not a fan of things that identify me as “sick,” but at this point I’ve already got the dexcom and the omnipod stuck to me, really adding a bracelet isn’t that much more. It is a reminder that I am on my own, but it also helps assure me of my independence at the same time. Today I am celebrating that. #celebrateeverything

What’s beeping? Oh wait, it’s me.

When I’m irritated by diabetes related beeping, it is usually my dexcom. make that was. My new least favorite beep is the OmniPod system, both the pod itself, and the PDM (Personal Diabetes Manager…I’l gripe about that name later). Last night I changed out my pod on my own for the first time. It was terrible. In addition to all the expected terrible — hate, denial, resentment, incompetence, I also was extremely annoyed. I was delaying changing the pod because I wanted to know how long I could go with it, and probably under the surface I didn’t want to replace it because I resent the whole thing and was afraid of doing it wrong.

Anyway, I let the pod get to it’s 72 hour/3 day replacement time, and then I let it go through the additional 8 hour buffer period. Through the buffer time both the pod and the PDM beep at you. It took me awhile to realize that it was actually me that was beeping, and that I hadn’t left the dexcom or omnipod receivers behind me (that was a fun two hour game). At the end of the buffer time the PDM screeches until you rip it off, or end it the session with the PDM — if you’re angry and don’t care that it might hurt, you might just rip it off, and it might just be okay anyway. After that lovely musical performance from the omnipod, and a not so delicate removal, I embarked on “installing” the new pod. I’m not sure if “installing” is the word for it, but I’m not sure what else to call it.

OmniPod First Setup

the debris from my first “installation”

So, I look at the pod. I go get some alcohol wipes, skin tac, tac away… and maybe a bit of bravery. I go to YouTube and watch some mom do the “installation” with a 3 year-old… if she can do it, I should be able to handle this. I’m an engineer for god’s sake. a fat load of good that’s done me. I stumbled through the process like a t-Rex in the canned goods aisle of a grocery store. it ended with a bang. it hurt more than I expected, I don’t think I had quite enough fat there. and then I was alone. well still alone, nothing had changed. I’m still bitter about having this stupid pump. not having it so much as needing it. and then life went on.

 

Looking for MY t1d people

I emphasized the “MY” in the title of this blog entry because I am looking for MY people and not *Diabete’s people. Recently I started a group on facebook called  Type 1 Diabetes, you suck. I thought you were just for kids?! while I have found a few all encompassing Type 1 support groups and blogs that I really like, namely  I hate diabetes (type 1) on facebook, but there are some peculiarities to having been diagnosed as an adult in our 20s and 30s — and I am still looking for people to share our experiences, advice, and support with who are in this more specific situation.

When I was first diagnosed I found support and camaraderie through blogs specifically t1dactiveliving and Steffi — now I am reaching out again looking for more people who share the experience of being diagnosed as an adult and figuring out the basics on their own — as opposed to adults who have grown up with t1d. If you’re reading this and it applies to you, let’s be friends, if it doesn’t apply to you, let’s also still be friends — I guess what I’m really still saying is “help.” This isn’t what this post started out as… I wanted to reach out to help build this community, but turns out, I’m exactly where I seem to always come back to… needing help — which really I guess is the same thing. Maybe I’m just feeling more vulnerable about it today.

Here’s to hoping that today is a good diabetes day… for me and for you too.

 

*I have distinguished “Diabetes” from “diabetes” in an earlier blog, but as a quick explanation/reminder…”diabetes” is a disease that I have, that I have no control over, that I work with my doctor to control as best as possible. “Diabetes” is a giant douche bag who comes in and messes with my life on a daily basis.

Diabetes… what are the parameters?

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.

Wait, I agreed to this?!

Ummm… so I just watched a bunch of the Dexcom G4 tutorial videos… I’m not so sure about this… It really looks like a medical device. I don’t know what I expected, but it was not this. I don’t want to look like I’m just out of the hospital all the time… ugh. I know it’s going to help, but seriously. the information part sounds great, carrying around something else, not so much, having that thing attached to me, also not so much… ugg. The video showing you how to attach the sensor… not cool. all of this is not cool. and scary. but also I need this — my dog can’t call 911. I need to not be waking up (by the grace of god) at 38… I need to know well before that so I can do something about it. This is going to help me do that. I just need to remember that… and avoid watching those videos before I actually need to…

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