raelshark

(Friend who tweeted this here)

In this case, I actually did create it that quick while lying in bed, and used nothing more than IFTTT and a Google Spreadsheet. I probably should have mentioned "without coding" in the original tweet to be clear about that, cause I think it's a pretty big factor.

Literally anyone with the least bit of tech savvy and a recent Android phone could do this, and it's actually more effective than the original web app I used.

Edit: clarified the time it took

So I'm the friend who tweeted that.

And actually it was even simpler than that. No coding involved - I did this with nothing more than a handful of IFTTT recipes. Hook it up to Google, listen for "Home" commands, and send them to a Google Spreadsheet. I have one for each type of entry I wanted to log - meals, symptoms, medications. Planning to add activities and some general exercise capturing when I have another 20 minutes (ha).

And I'll add some biometric logging, although my ultimate goal would be to actually script that to get data directly in from my BP monitor and a scale automatically. Same with sleep data from the app I use to track that. Both would be easier if I were using one of the devices or apps for tracking those that IFTTT supports.

The idea is to set up and collect as much as I can with as little manual entry (i.e., typing) as possible, with as little coding as possible.

Right, you've described my current plan - to eliminate it entirely for a while to see what happens, then slowly reintroduce things to see if I get any reactions. Besides the IgG test some of my own observations were acute reactions in my mouth from certain cheeses, and things like that - so I'm certain there's some kind of allergic reaction to... something going on. (The test I took specifically did show that casein was the problem in my case. We'll see.)

And agreed that stress can cause those issues with the gut - and for me at a minimum exacerbates other things already going on - but yeah, I'm seeing and hearing a lot about how it goes the other way but I'm not seeing the science or experiencing it yet in my case.

Also - in my situation the autonomic dysfunction has a strong biological component. I have postural tachycardia and peripheral neuropathy caused by a genetic collagen issue (Ehlers-Danlos), so I know that there are major physiological factors going on and contributing to all my various issues. And then stress - which is aggravated in my case by wildly fluctuating heart rate - compounds all of that, creating a whole vicious cycle of impairment. Unraveling this whole web and picking away at parts of it at a time is my current challenge. But I am pretty confident that while depression contributes in some ways to my fatigue, it's also majorly impacted by my heart rate and probably some adrenaline issues common in Ehlers-Danlos.

(I appreciate this discussion and your thoughts, by the way.)

> First, the indicators could be used in the future to help diagnose the condition, as they were present in 83 percent of the patients with chronic fatigue syndrome. Second, it suggests that diet and things like probiotics may be a way to help treat the disease by getting the gut microbiome back in balance.

This kind of reporting bugs me. They might have found a possible correlation here, that's all. Yes, that first item is a possibility because the correlated indicators could be used to detect conditions related to CFS, but the second item is pure speculation about cause and effect, and is jumping to conclusions about it pertaining to treatment.

Personal anecdotal insight - I have a genetic condition that affects both my gastrointestinal system and causes chronic fatigue-like symptoms. I'm treating both separately but because there's an underlying condition affecting both independently (probably), it doesn't mean that treating one will improve the other. It's a longshot possibility, but saying "may be a way to help treat the disease" is just interpretation and overly-optimistic hype.

The indicators they found do sound really interesting though. If validated it would be an amazing benefit to patients just to confirm that there's a biological factor to these conditions.

I did an IgG food allergy test recently that I was extremely skeptical about in advance, but the results were consistent with my own observations over the past few years - namely that I was having severe reactions to some dairy. The tests showed exactly that as my issue. So I've eliminated dairy from my diet and I'm seeing what effect it has.

The general impression I got from my research is that some of these tests can be useful, but only when used in conjunction with other observations and case history. I do agree that some can be pretty scammy though - especially in their claims of the things they can fix. So like the parent poster, I'm really eager to see how these actual science-backed and FDA-approved solutions do for people too.

Also, stress and burnout are certainly a big factor in depression and fatigue, but these autoimmune problems are very real and can also have similar effects. I personally have a diagnosed autonomic nervous system disorder that apparently contributes to both the autoimmune and gut issues I deal with, as well as my severe fatigue and impaired mental state. I don't know that those areas - the gut, energy, and brain - are directly related on their own (the doctor I'm working with thinks they are), but I'm happy to try anything that might help any of them, and see what happens.

Owning a rabbit isn't hard or dangerous to them, but yes - letting them have free reign of a room means completely bunny-proofing it. I've lost so many cords...

That's really interesting - I havent heard of those kinds of problems outside of autonomic issues. You actually got diagnosed with something else related to cardio that causes that?

And yeah if it's low blood pressure-related that's hard to show them, since it changes so much and will be different in the doc's office than normal, and because there's no real way to do continuous BP monitoring the way you can with heart rate. Luckily in my case there's a simple test you can do at home or in a doctor's office to see the BP drop quickly.

There's no cure or anything, just a handful of treatments for the symptoms and to keep things under control. For the heart rate issues I take Xanax periodically as needed - it keeps anxiety from building up and setting off my heart rate (which then feeds the anxiety in a vicious circle).

The autonomic problems also cause periodic drops in blood pressure so I take a medication for that, but also have weird treatments for it like a high-salt diet and compression stockings I wear very day. I also take an ADD med for the cognitive impairment that comes along with drops in blood pressure.

I also have major on-going fatigue and gastrointestinal issues related to the autonomic problems (turns out your autonomic nervous system runs EVERYthing), and I'm about to be tested for food sensitivities to see if changing my diet might help those.

Yep. I've been diagnosed with orthostatic hypotension too. I have bouts of low blood pressure, so it can drop when I stand too quickly or for too long, or when I exercise. My resting pressure doesn't read as low but I still feel the effects of it and treatments for low BP help my other symptoms...

I have an autonomic nervous system disorder (postural tachycardia) that causes my heart rate to skyrocket at any kind of physical or emotional stress. Basically it's like my fight-or-flight response is broken and over-reacts to everything (even from seeing blood or just standing up). Serious emotional issues can triggers panic attacks for me pretty easily.

I went through a battery of heart tests that all turned up normal and I was diagnosed with anxiety, until years later when someone thought to test my nervous system. So yeah, I can relate.

But those heart tests even included wearing a monitor that didn't tell them anything useful other than that it was elevated at times... but not that there was a real physiological underlying cause beyond simple anxiety. Not sure they'd put any more interest in a Fitbit's data.

I think it's people usually don't get that these are often just random and not always tied to an event, but vice-versa. Certain situations and interactions can lead up to or trigger attacks, but when it's a real disorder with the fight or flight mechanism, there's often no rational meaning to the sense of panic.

In my case my attacks turned out to be related to a disorder of the autonomic nervous system, which (among lots of other things) results in my response system overreacting to stimuli. It took me a long time to get diagnosed and I've learned to cope by rationalizing my panicky feelings as nothing more than flawed biology. I know that there's nothing really wrong, and I can calm myself down, telling myself it's just my screwed up vagus nerve, before an attack becomes full-blown. Thanks to that I was eventually able to taper off taking Xanax regularly.

But while going through that process I had days where I couldn't even work, and even had a boss drive me to an urgent care place once in a full-blown attack. The work at the time was definitely stressful, but I think the panic attacks exacerbated the work more than the other way around.

I've been wondering how good the continuous readings were on it. I'm actively considering the best device to track my really complex heart rate issues (I have postural tachycardia).

But I don't use an iPhone, so Watch might be off the table for the near future.

This is a very valid concern because I used to own a Zeo headband that did a lot of the same stuff, and when the company went belly-up the cloud service disappeared, leaving all their customers with a useless bedtime fashion accessory.

Really encouraging to hear the developer's reply that the their APIs will be accessible over wifi and that they'll even be open-sourcing some of their stack. Wonder if they specifically learned from what happened with Zeo. I'll definitely consider this as a replacement.

Seems like the experience is pretty similar with a lot of these disorders. I have an autonomic nervous system problem that overlaps significantly with "chronic fatigue," and I've seen a lot of patients go through similar "why can't you just..?" discussions with family and friends. I've also had similar experiences to what you describe with your school situation, but also with employers. It's a special kind of stressful when your livelihood is on the line and your employer won't take your issues seriously, and you have to struggle to medically validate your circumstances when you can't find a doctor who understands it either.

For most people with poorly understood issues like these, getting an actual diagnosis is like an emotional and social breakthrough - complete validation that something's really wrong.

This is the second part of my long year-in-review post. You can read the first part about how my health caused me to up and quit my job here: http://notthegolfer.com/2014/12/31/year-in-review-2014-part-...

Yep, just went down. Beefing it up now. Thanks!

Edit: Should be good now.

I'm not trying to do that "diagnose you over the Internet" thing, but did any of your doctors ever mention or look into autonomic nervous system issues? Reason I ask is that what you describe is somewhat similar to the kind of cognitive impairment ("brain fog") and fatigue I experience with dysautonomia. Although it sounds like your symptoms are much more extreme, they're not inconsistent with what I've seen other patients experience.

For me I believe it was brought on originally by a case of mono in my teens (although it didn't really impact my life significantly until my 30s). Those kinds of illnesses - or even some injuries - can wreak havoc on your nervous system, causing it to not be able to regulate your body's functions properly, including not getting sufficient blood to the brain, depriving it of oxygen. I also strongly suspect I have an underlying genetic disorder that made me more susceptible to this problem, which I'm going to finally be evaluated for next week.

Edit: I should also add the other thing that stood out to me in your post is that I was also told that my problems were psychological and just caused by "anxiety" - it's a common misdiagnosis with these kinds of issues by doctors who aren't familiar enough with them and the effects. In my case it turned out later that my panic attacks were a result of my body not being able to moderate my heart rate properly. Pretty much everyone I know with autonomic issues went through the "it's all in your head" phase of diagnosis before getting real answers.

In my case it's had a huge effect on me as a professional and programmer, leading me to lose and jump jobs as I attempted to find somewhere that was willing and able to work with my needs, until earlier this year when I finally quit my last job and started freelancing. It's still a challenge for me but a huge step towards finding the kind of work I'm still able to do.

Good luck, and good for you in still fighting to be a positive force in the world and for your family.

Can you actually elaborate on number 4 in your list? are you talking about building something for a client but having an agreement that you'll own the software and are licensing it to them, so that you can sell it yourself elsewhere?

Right at the bottom he mentions that only 15 slots are available, first come-first serve. So he blocks out each day for a single client.

I think Facebook already is mostly Dogebook.

Unfortunately on yesterday's episode Gina and Kevin announced that next week will be their last In Beta, and someone else is taking over the show. Curious who it'll be, but definitely won't be the same.

My understanding is that she wouldn't be able to jump to individual insurance given her health status until pre-existing condition coverage kicks in this January.

Are you saying that the webviews for some reason feel less native in the newer OS versions, or that the latest native OSes are so fast that the webview's shortcomings stand out more?

I don't know if intimidated is the right word, but I'm pretty average height - 5'11'', and I've personally observed over time that I feel much more insecure around bigger people. I'm not sure how common it is but it's something I've become consciously aware of and try to correct myself on. But even being aware of it, it's really hard to ignore. For example, I find I gain a lot of self-confidence when I sit at a conference table talking to someone, putting us on "equal" footing. But if standing where I'm looking up at someone I suddenly feel like a small boy talking out of place to a grown-up. It's silly but it's an overwhelmingly noticeable sensation that drives me crazy.

I suspect it could have evolved out of having a physically intimidating older brother growing up (I grew out of a lot of insecurities when I became taller than he was, but maybe not all).

I can say anecdotally this applies to me. I use ASP.NET and C# heavily and am a daily user on StackOverflow, but I rarely find myself needing to ask a question there. I usually just find an answer to what I need and vote and favorite accordingly. It's become more of a repository of information for me than when it started out.

Some drop in ASP.Net/C# popularity wouldn't surprise me either though.

We experienced the same - our toddler gets an episode of Wonder Pets every day after she comes home from day care. When my wife drove her home that day she got her all excited to watch it, and she was singing the theme song the whole way, only for my wife to get home and select the show (still displayed in our recently viewed list) just to get hit with an error message. Had to research some to find out what had happened. We were actually lucky that we already had a Prime account and found the shows there the next day when we read online what was happening.

Really bad user experience and communication, combined with a very passionate target viewer for those shows who doesn't understand license negotiations.

If someone doesn't release a version of Jedi Outcast with g_saberRealisticCombat enabled by default, this whole thing will be a complete letdown.