I focus so much on Sjӧgren’s because that’s the source of all my problems, that I forget there’s another diagnosis in the list: Interstitial lung disease. Simply put, it means inflammation in the lungs. This inflammation is what makes it difficult for me to breathe. As the inflammation clears up, my breathing improves. The only caveat to this is that the inflammation was so bad before my treatment started that there is scarring left behind as I heal. (Let that be a lesson to you other stubborn people out there: Waiting several months after you notice you are having trouble breathing is NOT a good idea, no matter how you can justify it to yourself.)
I learned last week that my lung function is up almost 20 percent from where it was in January: I’m up to 62 percent from 46 percent. And while that is awesome – and more than Dr. M. expected – it wasn’t enough to get that oxygen prescription lowered. I actually got a little bit of chastisement for not wearing it into the office. I mean, my oxygen level did drop down to about 83 before I got to his office, so he may have had a point. But just a little one. After all, I took the steps.
When I started asking questions about getting off oxygen, he steadfastly held on to the opinion that I may never get off oxygen. His favorite thing to say is, “You have to remember you didn’t do this to yourself and there was nothing you could do to prevent it.”
Check and double check, although I would argue that had I gone to the doctor and it was diagnosed sooner, my lungs would never have gotten so bad to begin with. So I could have helped it.
This time he added another little statement: “You have to remember this is a chronic condition.”
I keep approaching this like something that just needs a little more time and then I can ignore it completely and go about my life, but that isn’t really the case. It’s a condition that has to be constantly monitored and managed, to protect my lungs especially.
But if you think about it, that’s not much different from other chronic conditions, like diabetes or high blood pressure. They all require medication, monitoring and sacrifices. I can live with these things, no problem. People live with chronic conditions every day; it’s really not a big deal. But he also said I shouldn’t expect much more improvement.
Challenge accepted, Dr. M.
In January, he said the same thing – and I still got better. I’m not sure if he’s trying to manage expectations or if he really thinks I won’t make any more improvement, but I know I will. Between now and my next appointment with him in October, I plan to improve my breathing. I can’t control my lung function – I can only get as far as the scarring will allow me. But I can control Sjӧgren’s and the inflammation it causes, and I can control other health factors. With diet and exercise I can both decrease the load my cardiovascular and pulmonary systems carry and strengthen those systems. Who knows? Maybe I’ll pick up yoga to help me learn to focus on breathing.
What I do know is I plan to shock his socks off in October. And when I summit Forester Pass on the Pacific Crest Trail – elevation 13,153 feet – he will be the first call I make.