I admit it, I’m a hardcore digital & app geek. Probably equally or more so than I am a healthcare geek.  My iPhone is literally another arm. But there are valid reasons for that given everything I need to keep up with.

When I attended Lamposium in April (after a long hiatus), I was able to keep track of the sessions I was facilitating as well as ones I wanted to attend by flagging them on a mobile application. This was an easy way to help me keep up with what was going on in real-time without having to carry the conference program everywhere.

Additionally, I used texting & FaceTime quite a bit to keep up up with people while I was there. I even used my iPhone to record a few videos for a friend for a campaign she was working on.  So easy & seamless.

While I do use the Facebook application (& also messenger) to keep up with support groups & postings, I find sometimes it’s not the ideal way to communicate, especially on the go. Some of this is because I belong to  several different communities now.  I’m grateful for that, but each one has a unique voice that I don’t want to risk losing with all the other distractions of social media.

That’s why I get excited about new technologies & applications that target communication with these friends outside of social media through a dedicated mobile application because then I can really focus my attention without all the other outside chatter.

I feel something like this would be a welcome addition to how I already use my phone.  Because of my rare diseases there’s a lot of health tracking I need to do.  I also use digital applications & platforms to easily transmit information & communicate with my transplant team & fundraising non-profit.

Just to give an idea of just how strongly I utilize mobile apps in daily life I will share how I keep on track with reporting my statistics to a research study on exercise & lung function (for LAM) that I am currently enrolled in. This is a good example because the study is based in Texas.  I participate remotely from Pennsylvania. This would not be possible for me to participate in as easily without mobile technology.

At least 2-3 times a week (& more frequently if I can) I exercise at my local community center.  As I’m exercising, I have this device that not only tells me my oxygen levels but also records them so I can email them directly. (DISCLAIMER: I am not promoting this device just merely pointing out how useful of an investment it was. Standard oximeters sometimes fail to record oxygen levels consistently with activity.)

I use my Notes feature on my iPhone to track distance, speed, & timing intervals as well as specific oxygen levels at those intevals. This data I can record & then cut & paste & send through each day in ONE email to the leader of the study (even though I am using multiple mobile applications simulataneously).  Then we can chat about it.  It’s almost like self-directed pulmonary rehabilitation which has been extremely helpful in helping somewhat manage this recent arc of progression with LAM.

The other reason mobile support is important is because several ladies in my community (as our health worsens) find it harder to exercise because of our breathing issues as well as the ever increasing need for oxygen to be able to.

We also (because of medications or other medical factors) struggle to maintain healthy weight & healthy habits.  We form an accountability group each year to support each other, but it’s also nice to have buddies with an activity tracker to have healthy pushes with. Again, all of this data too of can be tracked outside social media but easily transmitted there if we wish (with little to no extra effort).

Through their encouragement I have maintained a much more regular exercise routine & when I developed breathing changes earlier this year; I picked up on it sooner because I had already eliminated other obvious potential causes like carrying around extra weight.

I’m more mindful of my eating habits & sleep cycles. All of this is extremely important in all facets of my life but would not have been facilitated without connections with others going through the same thing or without the assistance of devices that also utilize mobile applications.

I wish I could say that the story ends there, but I would be remiss to mention that my blog, (even though I only started in August), has been extremely valuable in connecting with other people.  I really underestimated the potential impact & reach.  Every day, I hear from people from various walks of life about what I share. I’ve found several more “tribes” I feel proud to be a part of because of the connections I’ve made through it.