, , , , , , , , ,


As I think about my sarcoidosis, and the twists and turns it has taken me through, both physically and emotionally, it occurs to me that having a chronic condition is life altering. Now, this is not new news to me. I have been working through the ups and downs of accepting my situation since it began and I know that it will be an unending process.

Recently, my disease has been generally stable. That is not to say good. I have scarred lungs that make it hard for me to breath. That damage will be with me forever. And then there are the day to day aches, pains, fatigue and brain fog to cope with. These would be things another person might refer to as my “new normal”, but I’m not a fan of that expression, so I don’t use it…even if it’s true.

My point is, I am not having new symptoms. My current treatment plan seems to be working, which is about all you can ask for with sarcoidosis. My treatment plan has drawbacks though, as I am on a low dose of chemo therapy. I don’t really care that the doctors say that it’s a low dose so I shouldn’t worry about it…it’s still chemo and chemo is cumulative. Period. Not to mention that if I didn’t religiously take my inhalers, both my twice a day long acting one and my rescue one when I need it, I’d not be breathing at all.

This may sound bleak but it’s my reality. And it is one I have adjusted to. So it is, for lack of a better word, normal for me. I am better than I was when my disease first attacked me. Back then, they didn’t know what was wrong and standard treatment for sarcoidosis wasn’t working. I had crazy fevers every day. I coughed and begged for air and I was totally exhausted all the time. I was losing the ability to manage my life in any reasonable way. It was devastating.

Today, I still struggle to breath at times. I still have to manage an unreasonable fatigue. I still have to manage pain issues. But it’s better. It’s a lot better. For one thing, I know my diagnosis today. There is a strange reassurance in that. For another, time has given me a new perspective, an ability to grieve and accept my life as it is today, a new insight regarding my priorities and new skills to cope with the life changes I have been faced with.

So, I’m not the same. I’ll never be who I used to be and frankly, that’s okay. I like the core of who I have become better than my “pre-illness” self. I no longer even want to strive to be who I used to be anymore. Things don’t have to be the way they used to be. I have challenges but I am better than I was at the start of this journey and you know what…better is enough.