Dear Diabetes, you suck.

a web developer who also happens to have type 1 diabetes

Tag: Information

Big Picture Diabetes Visualization

The tool I have been using to create the visualizations of my numbers is called Tableau — as I was looking through Tableau Viz of the Day Gallery, I found this great viz on the Prevalence of Diabetes in adults (20-79 yo) by Ramon Martinez. Ramon publishes a blog focused on analyzing health data at the population level — the post accompanying this viz has some additional insight on the data presented.

 

I’ll be available today between 1-2 pm

detour-sign

I am definitely processing my OmniPod experience backwards, maybe because I was so overwhelmed that I wasn’t processing anything for awhile.

I had gone to my doctor and gotten the prescription for the insulin for the pump settings. I emailed the rep to confirm that she had received the settings from my doctor, figuring that I would have a few days, maybe a week to mentally prepare myself, I would watch a few videos, talk to my sponsor about it, make a plan to go to a meeting right before and/or after, and then…

“I am available today between 1-2 pm.  Can we meet then?” That is what the OmniPod rep replied to me… at 4:50am, which of course I didn’t read until 8:30am… which gave me a 4.5 hour window to “prepare myself.” Calling this a major detour would be an understatement. She apologized for the short notice, and said that she’s going to be away on vacation and wanted to set me up before she’s out of the office — I appreciate that. sort of.

…although, I had thought I’d have at least another week of denial…

I started this post before I left to meet her, but in the rush to wrap up work and get out of the house, I had even less time to prepare myself for the impending doom. okay, so I’m being a little dramatic… that’s how it felt.

In hindsight it was just as terrible as I thought it would be. I felt exposed in every way a person can feel exposed. I was on the brink of tears for half of the appointment. I wasn’t really listening to what she was saying, and worst of all, like every other dietitian appointment I have ever had, it was completely useless. I could have answered all those questions just from the literature that I had already read, add in some YouTube videos, and I’ve now more than doubled the useful information that was given in that appointment. If you do your reading your first appointment should be about 15 minutes, do the first insertion and then let me go home. And here’s the best part… I’m supposed to meet her again? For what purpose I asked, “to go over more information” she says… I’ll go because I’m committed to doing all the tactical tasks asked of me by my doctor/this disease, but I won’t like it.

I did not appreciate the bursting of my denial bubble. Especially not when it was with basically wasted time. Having now had time with the omnipod, emotionally I still hate it, tactically it’s working really well.

Blood Glucose Testing… without test strips?!

Slide-1I came across this really interestingl Diabetes Technology article. on Forbes.com. It talks about the development of a device that will read blood sugar without a finger prick! I know, really exciting, right?! The technology is really interesting, even though it is definitely a few years away from the market (pending further development and the dreaded FDA approval process), it looks really promising. For those of us sick of pricking our fingers, and even more sick of building up scar tissue, it is definitely a beacon of hope. In addition to the article, the manufacturer (Grove Instruments) has a demonstration video on their website.

If you don’t have time to read the whole thing, it boils down to this… “Grove Instruments is developing a pocket-sized device so diabetes patients can measure their glucose levels without taking their own blood… [the] product could become available for use … by 2015 or 2016.” (Taken from the aforementioned article found here on Forbes.com)

Although I’m trying not to get my hopes up (even though a statement above totally conflicts with that effort) for any advances in technology, I have to say that it would be amazing to not have to stick myself all the time — I’m so sick of it. So so so sick of it.

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.

Dear Diabetes, I have feelings.

FeelingsTicTacToe

I have conceded to myself (and now to you) that this blog is about feelings. It is not as informational as intended, but I feel (haha) that the emotional journey of adjustment, trial and error, anger, and progress is just as important in it’s own way. Also, I have lots of feelings about everything, so expressing them here, rather than trying to be informative, is more authentic to me, which is something I’m actively working on in all aspects of my life.

With that in mind, I am also trying to be more positive, so below are five things I hate… and five things that are positive about my current situation with diabetes.

Negative: 

  1. Diabetes gets in the way of things that I want to do
  2. I will always be sick
  3. Living with this is altering my thinking and I’m not sure I’m okay with that
  4. Other people I care about are affected by this
  5. Diabetes causes me to be even more dependent on other things and people for support which I intrinsically hate, even though it is part of being human

Positive: 

  1. My Dexcom is actually helpful
  2. Diabetes is not the end of the world
  3. I have even better reasons to take good care of myself
  4. I pay closer attention to my health and to how it affects my mood, and therefore my interactions with other people — which has had positive outcomes
  5. It makes me appreciate being in a place and situation where I can have access to the best possible care

My hope is that there is at least one person out there who can relate to this and feels a little less alone for reading this and knowing that I am going through this too.

CGM has been approved… here we go…

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Dear Diabetes, I’m wearing blue today.

I’m wearing blue today to do my part to help bring attention to World Diabetes Day, and to advocate and bring awareness for diabetes and the people living with it.

Check out the Facebook page for Blue Fridays — this is sponsored by the Diabetes Community Advocacy Foundation (DCAF), a pretty neat foundation I stumbled upon whose mission is to connect, support and educate people living with diabetes by encouraging open and meaningful discussion of current issues impacting diabetes care through the use of social media and other platforms. #verycool

I think I found my people.

As I was writing I feel sick. I might die? I saw @t1dActiveLiving‘s comment on Shit. Which pen did I use?!Fuck. so I checked out her profile, which lead me to #sparearose — the International Diabetes Federation campaign to raise money to support providing the best possible care, given local circumstances, to all children and youth with diabetes in developing countries — this was incredibly eye opening. I was instantly grateful for the doctors and tools that are available to me. Using Twitter to search #sparearose, I was able to find others talking about diabetes, but more importantly to me, I was able to find people talking specifically about type 1 — this was a major break through for me. In order to keep track of all this new and awesome information I created a twitter list with all the Type 1 Tweeters that I have been able to find — this includes people and companies, really anyone on twitter talking about type 1. The other really helpful resource I found was Moment’s of Wonderful’s Real Life Bloggers page — this is so cool — not all of them are well-written or even up to date, but they are other real voices, talking about their problems, triumphs and just thoughts.

And then all of a sudden I was not alone. I went from scared and alone to overwhelmed with information — I much prefer having the information than not having it, but it was a lot to take in. Diabetes went from this thing that was a barrier to everything, something with no workable solution, to something that I could actually take control of — something I could master, something that would not be a barrier for anything. All of a sudden the world was my oyster again, with a few caveats and some new rules, tips, and tricks to learn… and even though that is good, it was is scary at the same time.

Out of all of this, I have an overwhelming sense of relief… I think I’ve found my people.

I feel sick. I might die?

So I’m not feeling well today — just a bit of a cold, but yesterday I had a low grade fever and I freaked out, all I could think about was decreased healing and how my diabetic friend was recently hospitalized for flu complications…ahhhh! Anyway, so after I recovered from my bout of hypochondria, I started wondering what the real complications were, rather than the just the exaggerated ones in my head. I’ve been wondering about possible complications (i.e. negative consequences) lately anyway, so it seemed like a good time to investigate further. As far as I can tell, most long-term complications are attributed to consistently high blood sugar — Here’s one of the more succinct summaries I’ve found:

“People with diabetes have an increased risk of developing a number of serious health problems. Consistently high blood glucose levels can lead to serious diseases affecting the heart and blood vessels, eyes, kidneys, nerves and teeth. In addition, people with diabetes also have a higher risk of developing infections. In almost all high-income countries, diabetes is a leading cause of cardiovascular disease, blindness, kidney failure, and lower limb amputation.” (International Diabetes Federation — who knew there was a Federation for diabetes… it makes us sound like we’re in Star Trek or something)

Anyway, that all sounds rather gnarly — makes me grateful that I’ve been fighting the lows lately rather than the highs, although then I might pass out — which would then take me back to the glucagon issue… which then got me wondering, other than the generic “pass out,”  what are the real possible consequences of low blood sugar, or hypoglycemia…

According to WebMD…Symptoms can be different depending on how low your blood sugar level drops.

  • Mild hypoglycemia can make you feel hungry or like you want to vomit. You could also feel jittery or nervous. Your heart may beat fast. You may sweat. Or your skin might turn cold and clammy.
  • Moderate hypoglycemia often makes people feel short-tempered, nervous, afraid, or confused. Your vision may blur. You could also feel unsteady or have trouble walking.
  • Severe hypoglycemia can cause you to pass out. You could have seizures. It could even cause a coma or death.

Wow. “coma or death.” that’ll sober you up quick. oh wait, I don’t drink.

**Sidebar: I felt a bit shaky just then, I tested and I’m at 56. Fuck me. Hold on, going to eat something, be right back. Real thought process: What should I eat? I could have those powdered doughnuts I really like. I’d have to drive my car. shit. I might pass out and crash/die. I could walk. fuck. same problem. I guess I’ll have juice.**

And I’m back… so anyway… where was I… oh right, coma or death. fan-fucking-tastic. I think that’s a post-ender right there. Even if it isn’t, I think I’m going to sign off here. I’m waiting to recover from this low, irritated as hell, shaking like I have Parkinson’s (#notappropriate #don’tcare), and unable to focus… and maybe a little short-tempered… just maybe (see above symptoms of hypoglycemia). Happy Diabetes! woo.

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