Normally, I try to keep my posts about tech and my adventures in tech or in the community. Today, though, is something personal that I want to share, both to get a glimpse of me and as part of #MeAndCOPD, as November is COPD Awareness Month.
7 years ago today, I sat at my desk at work, waiting for my doctor’s office to call me back.
I had gone through a bout of bronchitis during Spring 2008, which caused me to cough so hard that I cracked a rib. It was awful, but the worst was yet to come. In October 2008, I had a harder case of bronchitis that really knocked me down, physically. To put it in perspective, I would go to work but sit at my desk and communicate with people more over IMs than in person. This is so unlike me, as I normally went from one side of the office to another – from web development to IT to designers to marketing, back to web development, and sometimes over to HR. I was always on the go, preferring in-person communication when possible. I knew though that I needed to conserve my energy – what little I had left. Every step that I took, every word that I spoke… those consumed energy that I was rapidly losing. To feel this, I knew I was at a low point but I hadn’t realized just how low. My doctor ordered some tests to see why I was drained and beaten and what happened.
7 years ago today, I got that fateful call – my doctor diagnosed me with severe COPD (chronic obstructive pulmonary disease). After I hung up the phone, I remember setting my head in my hands on my desk, trying so hard to fight the tears that had welled up in my eyes. Crying was going to take more energy and I needed to conserve it.
Why?!? I had never smoked a day in my life, though I grew up in a house with secondhand smoke most of my life. Why me?!?
Naturally, I had a lot of questions. Googling the disease and its stages concerned me a lot. However, “dying” is never on my to-do list, so my searches switched from “severe COPD” to “managing COPD“. Talking with my doctor, I ended up seeing a pulmonologist for awhile to understand my disease. The bout of bronchitis from October 2008 did some serious damage – I was breathing at 30% of what I normally should be. This metric is what led to the initial severe COPD diagnosis. After months of seeing how I respond to various drugs and treatments, my pulmonologist changed the diagnosis to asthma, as I made considerable improvements in my breathing statistics, which showed that the damage done to my lungs was somewhat reversible – which typically isn’t reversible in COPD.
Weird Diagnoses at the Wrong Stages of Life
The thing that gets me the most about this experience is that I received diagnoses under atypical situations. COPD typically shows up in people older than 40 who typically have smoked or are still smoking. I was 28 years old, and I’ve never smoked a day in my life. However, I was exposed to second-hand smoke most of my life and they think that played a part of it.
As for asthma, it is typically diagnosed in childhood. Again, 28 years old at the time of diagnosis – this has seemed odd.
The Road to Recovery
When I looked at the search results for “managing COPD“, I saw a lot of results with breathing exercises. Growing up playing clarinet, I was well aware of how to control my breathing. So I read those results and took it all in.
My musical roots led me to what I like to call music therapy. For me, in order to regain control over my lungs and getting my energy back, I had to find control in breathing and adjusting as needed. One of the best things that helped me get back on the road to recovery was singing and challenging myself to hold notes for long periods of time and hitting certain ranges.
These are some of the songs that have helped me along the way:
- Paramore – That’s What You Get:
- Journey – Don’t Stop Believing:
- Evanescence – Bring Me to Life:
Management and Survival
In addition to singing, I also speak at conferences in my industry – technology. One of my biggest achievements since this mess was speaking in front of about 600 people center stage at the Peabody Opera House in St. Louis, MO for Strangeloop 2013. While I was combating laryngitis that day and feeling the tightness in my chest that comes with a bad asthmatic day, I delivered a great presentation and kept others none-the-wiser. It was truly a success for me.
Besides non-medical management techniques, I also have gone through a variety of maintenance medication. The latest regimen that I have had for the past few years includes Pulmicort and an emergency inhaler, that I thankfully rarely use.
Since I was diagnosed, I’ve only been hospitalized once due to a nasty asthma attack. To add to it, it was suspected that I might have had the flu… and… I was just starting the third trimester of my pregnancy with my second child. Considering all the circumstances, I was kept in isolation. While in isolation, I started to understand the gravity of asthma and how tough it could be. But I was determined to fight through it – I have a family to live for and again… dying isn’t on my to-do list.
I have also learned my triggers and risk situations. Sometimes I have a moment where I forget about my situation and do something stupid – like running across a parking lot to hang up my parking pass that I had forgotten in my bag. When I do stupid things like that, it takes me a few days and sometimes up to a couple weeks to bounce back. However, for the most part, I avoid my triggers or manage myself carefully to avoid asthma complications.
While I may look like a normal, possibly healthy person, I was once diagnosed with severe COPD and now work hard to keep my asthma in check, while still finding time to stay active both in my career and in my personal life. I have a world that needs me. This is my motivation for fighting to be here.