Medical Deja Vu

Posted on October 17, 2013 by kalimared

You know that restaurant you go to once a year because you can’t quite remember why you don’t like it, so you think to yourself “It can’t possibly be as bad as I think it was!” Then you go…and you remember “Yeah, it’s that bad and then some.” You say to your spouse “Honey, if I ever suggest we come here again can you please remind me how bad it was?”

Well, I’m having that kind of sudden bad-memory-recall with a medication change. Why, oh why did I listen to the doctor’s suggestion? It’s my body and I knew better.

This image is from my Fitbit sleep tracker. Note over 30 days without HRT how much more restless my nights have gotten even though I’m in bed for the same amount of time.

The super-short version of what is wrong with me (in this situation) is that I’m post-menopausal and have been for the past 5 years. Yes, apparently my now 15-month-old son is a complete fluke of nature (another story.) I’ve been on Hormone Replacement Therapy (HRT) to relieve yucky symptoms such as horrible hot flashes (24 hours a day), completely irregular blood sugar readings, vertigo, trouble sleeping, joint pain, bleeding gums, weight gain, etc. When I’m taking HRT, “Badda-bing!” I’m completely normal again…all symptoms go. When I’m not, well obviously from the laundry list of symptoms, I’m pretty miserable.

A few months back I started having other female issues and the obgyn discovered a uterine fibroid that will have to be surgically removed (again, another story) but right before she found it she suggested that I go off of HRT just to see what would happen…to see if something had changed. Gah! I’d already had all these conversations with my NP but my medical team doesn’t communicate and I honestly think the obgyn just wanted to cover her bases. Nevertheless after listening to “If it was my body, I’d do it” and “What’s the worst that can happen? A few hot flashes?” I reluctantly agreed.

It’s been a month and all I have to say is “Never again!” After all, my obgyn isn’t me. She doesn’t have a myriad of other conditions to worry about, all of which are affected by drastic hormone changes. She doesn’t really get type 1 diabetes or understand what I mean when I say “My BGs are really hard to control when I’m having all those menopause symptoms, not to mention that some of them mimic symptoms of low BG and it’s a real challenge.” So, why on earth did I get talked into doing it again when I knew that wasn’t the issue? Maybe I felt guilted into it? Maybe, for once, I just wanted to be that round peg that actually fits into the round hole? Maybe I simply let myself forget just how bad that restaurant was? Regardless of the reason, for the next few weeks at least, I’ll be consciously only hugging my husband while I’m facing to the right because leaning my head back and looking left is guaranteed to bring on the vertigo.

You might also be interested in these related posts:

My Fitbit Flex: A Delightful Surprise

Is Type 1 Diabetes Different for Women than it is for Men?

Synthetic Hormones and Type 1 Diabetes: A Call For Sharing Personal Stories

First Things First: Hormones and Insulin Requirements

Wordless Wendesday: “Five Healthcare Predictions for the Future.”

Posted on October 9, 2013 by kalimared

Great Article! Five Healthcare Predictions for the Future. Number 1 is Patient Engagement and Empowerment.

Image: http://bit.ly/GGzdDo

My Fitbit Flex: A Delightful Surprise

Posted on September 19, 2013 by kalimared

Just got a new Fitbit Flex. So far, I’ve only used it for two days, although two days was enough to have me feeling a bit like Wonder Woman with her indestructible wrist cuffs.

With logging diabetes data on my OmniPod, CGM, and BG tracking app, why on earth would I want yet another data entry device to worry about?! Turns out one of the most attractive things about the Fitbit is that it isn’t subject to any of the proprietary B.S. that all my other devices fall victim to when it comes time to actually view the data. It’s so simple to use that I can see my data with no more hassle than looking at a mobile app or website, it syncs automatically via WiFi, and works across all operating systems and platforms! It’s open API and integrates with lots of mobile apps, giving it even more functionality. Bonus: I don’t have to pierce my body to get it on, deal with calibrations, site changes, alarms, or discomfort. I just wear it like a bracelet and essentially forget about it. It’s providing me with a sense of freedom in patient generated data (PGD) that I’ve longed for with my diabetes devices. Because it’s so much easier than what I’m used to, I’m actually motivated to set activity goals and complete them. What a treat!

I know a lot of Fitbit users like to keep in touch via social media and share their data, but something else I really love about the Fitbit is that I don’t have to share. This is my data and mine alone! I’m not required to whip it out and share it with physicians at every turn in the road. I don’t have to scramble to have all my data-entry ducks in a row, only to have my Endo pour over it (in 5 minutes flat!) offering the inevitable praise here and reprimand there. It’s my Fitbit…my secret…my precious…

You might also like Big Diabetes Data Requires Big Analyses

Big Diabetes Data Requires Big Analyses

Posted on September 17, 2013 by kalimared

If you’re anything like me, you’re currently clocking data on your CGM, your insulin pump, your BG meter, and any other number of devices including mobile apps for diabetes, fitness, or menstrual cycle, and wearable fitness devices like Fitbit.

It’s easy to look at one post-meal high and make a judgment call. But it’s really hard to look at months worth of data and try to pull out patterns to really improve overall BGs and health. Websites that integrate with my OmniPod and CGM (and are Mac compatible…don’t get me started on this…Gah!) only have the capability to really track BG and carb counts well. But we all know it’s the type of carbs, not the number of carbs that really matters. Also, was I especially active on a particular day? Stressed from a big meeting at work? Having PMS? So many variables to consider!

Since I already have all the BG and insulin data on my pump, meter, and CGM, (that I’ve laboriously collected!) I literally fantasize about just uploading those items to a single program online and then using apps of my choice to input details about my other “life variables,” such as food, exercise and activities, moods, monthly cycle, etc…..and finally (here’s the kicker) have the apps sync their data with the existing pump/meter/CGM data online in the same program! Perfect! Easy! Right? No way!

As you’re probably well aware, most of our diabetes meters, pumps, and CGMs have proprietary software and/or limited relationships with other diabetes-device companies. So, based on who manufactured our devices, we’re all pretty much limited to one or two platforms for viewing the data…and those options sadly don’t integrate with apps we’re using to track our food, fitness, etc.

My current work-a-round solution for viewing OmniPod and CGM data (on a Mac) is Diasend, however even here you need a Clinic ID# (or to register as a non-US citizen) or your CGM tab will be grayed out. I also use the mySugr app for logging (btw…I love mySugar), Google Cal for my monthly cycle and HRT, and just started tracking activity and sleep with a Fitbit Flex. I make it work but it’s still me piecing together data from four different locations.

Fortunately (and just in the nick of time if you ask me) the US is at the beginning of a wave of personalized, data-centric healthcare, sometimes called the Quantified Self. A lot of new data collection platforms designed for non-PWDs (like Fitbit and Lose It!) are using open APIs, which means they share and can integrate data. After years of finding work-a-rounds and “making do” I feel like the current big data trend in healthcare is finally going to make my fantasy a realty…in the very near future. So, everyone put down your proprietary diabetes devices for a second and raise your glass! Here’s to hoping!