Stability-land

We are in a phase of this disease where everything is just rolling along. I try not to over-do things or wear myself out but continue to focus on diet and exercise.

As I think back to the past seven years, I realize there was a rhythm or an order of things. In the beginning, we were stunned by the diagnosed. Our lives soon became full of lawyers and doctors and a feeling of not truly understanding what was going on in my lungs. The future was uncertain and scary. I had other issues involved as well: GERD with its many tests, test of oxygen needs, tests to see if I was even strong enough to exercise, sleep tests, 6-minute walk tests, PFTs, bronchoscopes, biopsy, stress tests to see if I was strong enough for surgery, liver tests, endless blood tests and paperwork.

At the same time, we had to adjust our lives to no income ever again from me. All of my friends worked. I was isolated and alone. It was horrible.

Rehab brought with it friends with a common bond of having lung issues. Working out made me feel better and I built up my stamina and strength.

Eventually, I was deemed disabled by Social Security due to my horrible PFT numbers and lack of an immune system because of the various drugs, but it brought more paperwork and hoops to jump through.

We settled the Workmen’s Comp lawsuit after four years but lost the long-term disability challenge that we could not afford to bring to court. After the WC lawsuit, we were able to begin to make plans. We took a deep breath for the first time. We traveled. We were able to keep our house thanks to Medicare. We could afford the medical cost and drugs of this very expensive chronic disease.

As my health has stabilized and even improved this past November, we live in what I call “stability-land.” It is a wonderful place to be. We have an almost “normal life.” I want to live in stability-land for as long as possible. I fight to live here as long as possible. I use food and exercise as my weapons. I have the love of a great man to help with the battle.

But, late at night when I can’t sleep, I worry that it could all end in a minute. The downturns of my disease are quick and deadly. So, I live everyday to the fullest in appreciation of another day alive and living well, even though I have a fatal disease.

The process? Initial panic, stress, isolation, scared, realization of life changes, relationships shift, search for information, understanding, settling it all in the soul, gathering strength, living well.

It took me a long time to get here. My advice if you are in the initial panic stage? Be kind to yourself and take a deep breath. Try to do everything you can to get information about your disease and treatments and drugs. Eat well. Join a pulmonary rehab program. Hug your spouse a lot. Put one foot in front of the other. It will all eventually settle down and you, too can join me in stability-land. It is a lovely place to be.