In order to provide good info here, I’ve been testing various phone & tablet Apps for RA, Pain Tracking, Self Monitoring et al. Also part of my evaluation, is that Mr Rock (aka my rock star husband) can write apps, because he’s, amongst other saintly, creative, musical and handy things, a programmer and has several apps out in the market… no not Angry Birds, wow, WISH we’d thought of that one, I’d have minions writing this blog, or fund something great for fellow sufferers… anyway, back on track. (I have been diagnosed with adult A.D.D by the way, but I think that’s not a bad thing to be and use it to my advantage 🙂 ) … it is however, sometimes noticeable in my long rambling writing. “NO” you say ! LOL. I’ll try to get better, I know it can be a chore reading stuff when it doesn’t get to the point… like now.
So my thought process was, see what’s out there, do I like it, is it a chore, can it give me a better idea of how I’m faring and what triggers flares or illness or better days, can it give Doctors good info ? In fact, my Rheumatology Specialist PREFERS I email him directly or his nurse separately, anytime about anything, that’s a HUGE score in my book, automatically makes him tech receptive (and he is, we discuss it), which is rare in specialists who have minions to do that.
So evaluating and wondering.. can we make a better mousetrap, or Autoimmune Inflammation Disease App, especially one that can cover various diseases, or do we make several for different diseases based on one good model.
ALSO, treating our diseases, is expensive, like REALLY expensive, we all know that. Not just the meds, although they can blow your mind on cost, but all the monitoring, testing, illness from suppressed immune systems, peripheral equipment from braces to wheelchairs & home safety, caregivers, loss of income & opportunity, counseling sometimes, so many things. So know there are studies out there that will pay you. Not a lot usually, but hey, for using an app or filling out some surveys or phoning in once a week and answering questions, you can get paid for that if you qualify.
I’m currently doing a simple pain study, via an app for a short period of time and will be paid $75. I found out about it because I follow on twitter, blogs, Facebook, websites, all the great people out there advocating partly for themselves, but mostly for all of us and it’s often a struggle but the “us” part is usually what makes them muscle through. It’s what really inspired me, now that I know a lot more, to start this site. So next post I will gather a bunch of people, organizations and bloggers, tweeters and link/list them in case you’d like some other resources, perspective and that all important support network.
Until then, any feedback on apps and what you feel is missing from them or what you’d like to see is greatly valued. You can leave comments here (below) or on Facebook or even hit the CONTACT form here if you’d like to keep it on the down low. Thanks !
Be well as your day allows you :: be true to you :: always be hopeful.