This is the first post for my blog SOBS which stands for those of us who are Short of Breath, phew! I hope to share my story to start a conversation for people with this condition which can span a wide range.
My medical diagnosis is “restricted lung disease.” I was given that diagnosis May 26, 2016 as the result of my first meeting with a pulmonologist. I had been sent to see him by my primary care physician to help wean me off of supplemental oxygen after a bout with pneumonia. Now many months later I am on a higher dose of oxygen than when I first went to see him. So not exactly mission accomplished! And not exactly the life I expected to be living this many months after my pneumonia diagnosis.
I have been in the medical world since I was born as a patient and also from the perspective of employment in the geriatric care field for close to 15 years. And unfortunately I have to say that some of the medical care I have gotten with this respiratory condition has not been that good. It’s all the stuff you always hear about the medical world…..slow, unresponsive, inattentive, impersonal, uncommunicative….
I, of course, made excuses for it. Even blaming myself. But when I started attending the physical therapy prescribed by my pulmonologist and began overhearing various conversations amongst different members of our group who were encountering the same issues I was, it gave me pause. I thought to myself, “So it’s not just me after all.” And frankly was the impetus for this blog.
Through this blog I hope to help others who are just being diagnosed with their form of lung disease and starting life over at the end of a 50′ cord. It’s a depressing and terrifying world that one is thrust into with little if any support. I hope this blog helps make life less scary and depressing for others. And I hope to learn what others are doing that can help me get through it. I certainly don’t have all the answers or know much considering I’m only a little more than 6 months into it. But one thing I have learned as I age a “little more wisely,” especially when it comes to health care, sharing one’s story is valuable and can sometimes mean a choice of life or death.