Breathing In Life

This is a hard post for me to write. I’m pausing in the middle of a workday in my sculpture studio. I bent over to pick something up and got winded and thought, “Please God, let me continue to be able to sculpt. I searched for some answers on the internet and came upon this video. They have no answer for where my Interstitial Lung Disease (ILD) is coming. I asked the last doctor, is idiopathic what you call it if you can’t find the reason?” The Fellows answer was, “It never presented itself as idiopathic.” and he proceeded to show me the scans and how different they are from what is in my lungs. I felt hope and relief, and then I went to the doctor this week, and he says he wants to do a lung biopsy and idiopathic is not off the table. I think I heard him say that this can develop into idiopathic. WHAT?

I look back and see what this woman in the below video mentions. How stairs suddenly became harder, and I grew more winded. How quickly will this progress? Will I live for my next birthday? Will I live for more years? Friends around me are talking about retirement, and I’m just wondering will I be searching for a lung transplant as they are entering “retirement?” or will one of these bouts of bronchitis or pneumonia take me out?

This week I feel improvement. Is this temporary? The disease is progressive. After the last bout of pneumonia it took me six months to bounce back, several of those months I could not work. How will I get by?

Trying to trust without expending a lot of energy doing so, 
Psuche

The moment my coughing gets worse I can feel myself panic. What do I have? How do I get rid of it? Then I have to decide, who do I see? I called my pulmonologist, and he was not there until Tuesday. He said I could have some test done and call him if I needed him, but I was worried. I needed him, or I would not be calling. That was money spent and nothing to help me, and I didn’t know if I was going down quickly. I mean you should know this, but when breathing is at best shallow, and you begin coughing you don’t know how bad you are. I was starting to cough like I did when I went into the hospital last year with pneumonia. It was a Wednesday when I was trying to figure out what to do, and I know that many days can make or break these lungs. So I opted for my GP who is not on my network. She did what she always does. breathing test, I hear the assistant walking out and mumbling “there is no breath.” I see the look on the GP’s face, and the ritual begins- steroid shot, followed by a round of steroids and antibiotics.

It works! Slowly it works.

I’m still on oxygen at night and when I need it and when I exercise, and I am so thankful to have it. I didn’t get worse, and when that happens, I rejoice.

Pusche

I consider myself a pretty strong person and not easily influenced by others. However, I can’t tell you what that first doctor’s diagnosis and the way he presented it did to my psyche. In february before taking down my Christmas tree I made a video for my daughter and granddaughter. I want to share more Christmases, but after the diagnosis of the first doctor, I was uncertain of how many more of those I would have left.  The video was one, of what I hope will be many, of talking to my daughter and granddaughter.  I hope I remember to do more.  The doctor’s diagnosis and presentation have entered my mind like an infestation.  I have to get him out of there.  Second opinions are good. I’m now at the University of Texas Pulmonary department and feel these guys have much more understanding.

If doctors only understood the power they have over a patient. Not just physical, but the influence. As I’m walking on the treadmill, I’m often looking for videos that help me on my journey, and I found this video.  Listen to what happened to Mr. Wright.  It is profound.  The placebo effect works. We can trick our brain and our body. I think there is much more we can control as our bodies are magnificent. At this point, I’m not sure how to tap into this.

Believe in yourself and your total health,
Psuche