Establishing 'the new normal'

(Above: A radiogram showing advanced pulmonary sarcoidosis)

I am seven months into dealing with sarcoidosis of the heart and lungs and I am still getting used to the new normal. Some people who are diagnosed with chronic disease go through a period of mourning the passing of that which they thought they were before they were stricken.

However, I do not mourn the old me because I am still alive. I'm just tryng to get with the new normal.

Sarcoidosis has changed how I live. I have to think about it or react to it all the time. The autoimmune disease is scarring my lungs and heart and who knows what organ or system is next on its list. Sometimes I feel like I am paying attention to every breath and heart beat.

Most days I am upbeat. I am going to beat this thing. Some days I am low and scared. However, I try not to allow negative thoughts dominating my mind.

"It's tough. It's a real challenge dealing with a chronic disease," my internist said to me today after I visited him after being ravaged by what I think was a bad reaction to a flu shot. He things I caught a cold and had a rough time with it because I am taking prednisone, which controls sarcoidosis but suppresses the immune system leaving one especially vulnerable to infection.

However, right now we're focused on chronic conditions and the new normal, so...

I told my doctor that I am frustrated because I am no longer normal. He pointed out something that has been bouncing around in my head since childhood: Normal is relative and fleeting.

It would be great if my heart and lungs functioned at what is widely considered a healthy standard, but they do not. I have to find ways to maximize what I have.

The challenge, my internist said, "is getting used to the new normal. There are always going to be challenges and obstacles," but life goes on.

I wish I did not have sarcoidosis, but I must admit that some good has come from the situation. I have learned:

- Patience. 'Now' has always been when I wanted stuff done. Comes from growing up in the wake of the Me Generation, being a daily journalist and a card-carrying member of our instant gratification culture. However, some things, like healing don't happen according to our planned schedules. Healing takes its own time. I have written about that before, but it is hard to accept. Still, I get it. I am getting it very slowly, but I am getting it.

- Humility. I can do this alone with no help from others. That preceding statement is bunk, but I tried to believe it for almost 20 years. Simply put, some things out there are bigger than we are. There are times when we need to help people and times when we need to reach out for help. I was good at helping but not good at asking for or accepting help. That is both selfish and foolish.

- Discipline. One thing I love about daily journalism is immediate deadlines. News stories are worthless if they are not timely. Managing a chronic condition has made me more mindful of being disciplined in my personal life - taking medications on time, monitoring body systems, exercising on a regular schedule. It is a matter of goal setting and prioritizing.

- Strength. I had to go into the reserves to survive the winter of 2008-2009. My sarc symptoms, in fact, were a load to bear from the summer of 2008 through March of 2009, when I finally said "No Mas" like Roberto Duran after his second fight against Sugar Ray Leonard. I sought help because I had to. No other choice. And I am glad I did.

Again, I wish I did not have sarcoidosis but I do see a bit of light in the dark tunnel.

In the new normal, I plan to find a way to make that light shine.