The cloud is saving my life

The past few weeks have been very tough. The recent changes in my health have led me down a path where I have had to completely restructure my life, and iCloud is pretty much what is saving my life. This post is a little anecdotal, a little technical, and ends a little out there.

A similar experience happened roughly seven and a half years ago, around the time I was diagnosed with Lupus. Then, I was about 15. I was a child. Looking back, I can say I honestly did not comprehend what was going on. I was at a complete loss. It was up to my parents to take care of everything. And they did, to an extent. But they had their own lives as well, as well as work, my siblings, my grandparents, their jobs, their social and familial responsibilities, their religious duties, and well their lives. So while they did what they could, they could only do so much.

After being diagnosed at 15, I could say I was in a daze. I never really “got it.” I just went through the motions of seeing doctors, taking medication, getting blood work down and the occasional hospital run. I just did what I was told. I protested if it just felt like it was going to cut into my life more and just be a hassle, but in the end I did what I was told. I vaguely remembered what had happened when asked to recollect my medical history to a new doctor, just floated through the whole process of being a patient.

Run through seven and a half years, I’m twenty-three, turning twenty-four soon, and something changed. In August, I was diagnosed with Lupus Nephritis, a stage of Lupus where the body begins to attack the kidneys, possibly permanently and potentially fatal. I can easily say I did nothing to prevent this from happening. I was terrible with my medication, taking it late, skipping days, weeks at a time, land lackadaisically reporting to my doctors. I did not ask to get worse, but I clearly was not protesting.

Maybe the life and death style experience of find out your doctors found the problem before it became permanent and narrowly side missing a life of dialysis and kidney transplants, but I was forced to change my life around completely. I was interning at Pfizer Animal Health, completing 3 summer courses at Rutgers University, working on starting a company, and everything was going well from what I knew. My body had been acting up “a little,” but I was shrugging it off like I had always done. Then seven weeks into my internship, my doctor said my 24-hour urinalysis was abysmal. The protein content I was leaking was way too excessive. My ankles had been swelling for two weeks and I finally started to take notice. My constant fatigue started to make sense. I noticed my facial hair had thinned, my skin had dried, and overall, my body had been screaming at the top of its lungs for me to get my act together and I had been ignoring it.

Admitted to a hospital for a kidney biopsy, pumped full IV steroids, started seeing two new doctors and my life changed completely. My doctors told me there was no permanent damage, but everything needed to change. My medication was completely revamped. The number of pills I was taking a day jumped from two or three to twelve to fifteen. My doctors told me I need to see them every 3-6 weeks, at least, and blood works every 2-3 weeks. I still have a year of school, I have a campus job, and I’m still starting a company.

I needed to organize my life. I needed to manage my life. I needed to change my life completely. I needed to keep track of my calorie intake to manage my steroid weight gain, blood pressure, weight, pulse, medication, appointments, classes, meetings, everything. I had an iPhone and a Macbook Pro. I am tech savy, and I decided it was time to stop wasting my technology. I jumped into the cloud and I do not see myself ever turning back. I started logging everything. I created calendar, reminder lists, scans and images of documentation, specific contact groups for my doctors, with myfitnesspal for my food intake.

In a six week period, I dropped twelve pounds, my numbers stabilized and I felt better than I had in weeks. The concept of how useful the cloud can be as changed my life. I’ve always been tech-savy. But I’ve never had to use technology for a purpose. Not like I chose to for my health and my life. I like to describe it as I have created a personal assistant for myself. My reminders regularly go off when I need to take my medication; my calendar is accessible online, on my computer, and on my phone. All my iOS and Mac products sync.

This is not meant to be a Pro-Mac rant. The focus here is the synchronization. The accessibility. The union is essentially what is key. The same thing could have been done using Google Apps, but I happened to own Apple Products. We talk about the cloud as an immense business tool that can revolutionize the way we conduct business, but I think it is time to start looking at the cloud from a more consumer perspective. The use of technology as an assistant, a reminder, or maybe just a little helper can make our modern, hectic, run-around life-styles just a little bit easier, and maybe a little bit more optimized.

The advent of proliferated smart mobile devices has created an environment where companies like Google and Apple are creating these personalized profile based devices. Your phone is more your phone than your laptop is your laptop. Your if anything, it’s not really a phone anymore. While I’m sure we’ll find a better term to describe what exactly and iPhone or an Android device really is, it’s capable of allowing you to control your life.

The first step of success is to master yourself, and I believe that involves mastering all the tools available to you. Our smart devices are one of these tools. The full capabilities of our mobile devices and cloud services are still years away. Technology is always changing, always moving forward. We can only benefit from learning how to use it.



Lupus Nephritis

One Comment

  1. Congratulations on getting things back on track. Technology certainly can play a positive role in the lives of people with chronic conditions. In 2008, I was diagnosed with end-stage liver disease at the age of 33. Long story short, I was placed on fluid and sodium restrictions. My solution was to create a spreadsheet so I could track everything that I ate and drank. The spreadsheet, of course, would do all of my calculations so I knew how many ounces of fluid I had left to consume that day, for example. We didn’t have access to cloud storage as readily in 2008 as we do now, so I resorted to other means to keep things in sync, but you’re right…Companies like Google, Apple & Microsoft ARE making the sharing & synchronization of data so much easier.

    My doctors were so impressed with my “Sodium/Fluid Tracker” and my overall behavior in staying compliant that they highly recommended me for organ transplantation. On Christmas Day in 2008 I received a life-saving liver transplant. The tools that we have, particularly keeping data stored in the cloud, is a wonderful thing. I think your story is inspiring and I hope that mine might be too. People who are dealing with chronic conditions need to take advantage of these tools that are readily available to help manage their health.

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