Friday and Saturday were good days.
Friday, I took a mile-long walk, pushed myself by walking quickly and deliberately. I was breathing normally while walking and quickly recovered at the end. Best breathing day since being diagnosed with sacrcodosis.
That was a great feeling for me since I haven’t had a day like that in quite a while – a year, perhaps – AND Friday was very humid. I always thought I was gonna have a hard time in humid weather, but things are not as bad as I thought it would be.
Saturday was great, too. Hung out with friends, played Bean Toss. A slyly addictive game.
Walking and playing outside. And I was able to breathe OK - there's room for improvement. I'll get there- and all without my heart collapsing.
This takes me back to that electro-cardiologist “15 years” comment: “Let’s say you have 15 years…”
To live.
Those words still gnaw at the base of my skull. No matter what I am doing, I am aware that sarcoidosis can (will?) ultimately kill me and it has cut my life expectancy. I could make it only to 58, according to the doctor.
Could….could…
I could live a long, rich life, one that allows me to accomplish and contribute into my 80s or 90s. I get to accomplish some important life goals, becoming a successful creative writer and filmmaker, establishing family, marinating a healthy balanced living that benefits mind, body, soul and earth. Leaving something behind to benefit humanity.
I could just hit the wall in 15 years or before. Vital organ functions stabilize for a while, but only with medication. Soon, the body just becomes tired. I go…at 58, possibly before.
I could just get hit by a car while trying to cross Ashland Avenue to go to the Jewel-Osco supermarket.
All I can do is live my life. Get healthy, maintain healthy habits and let fate, luck and God take care of everything else.
One should just live life as fully as one can knowing that not one moment is promised to us.
Disease will not define me. How I handle it will define me. I will fight it and win. Defeat is not option.
I am a man, a journalist, an instructor and coach. I am also a fighter trying to kick the ass of sarcoidosis, which affects my heart and lungs. My weapons are my words and my body. I research, contemplate and write. I'm writing about my plan to get the disease under control. I can see the goal and I want to achieve it. It may take a while, but I will win the fight. I will keep on top of this until it is controllled.
I am not alone. I have a great family, great friends and feel a kinship to millions of people in the U.S. and across the globe battling sarcoidosis and other autoimmune diseases. Some exhibit no hint of the distress and damage the diseases can cause. Others cannot walk up steps or perform basic chores.
Because of them, I say I am lucky and blessed. I will put a face on it because I can and others cannot. I can move and will keep on doing what I do until I cannot do it any more.
I also look forward to learning how people with sarc and other diseases cope and overcome.
We'll also have a little fun along the way.
I look forward to making your acquaintance.
Sarcoidosis is an autoimmune disease and the cause is unknown. It gets the body's defenses to attack vital organs, including lungs, kidneys, heart, etc. The attacks cause scarring and the scar tissue clumps together. As scar tissue grows there is less working vital organ available. The disease can be fatal, however, 30 to 70 percent of cases don't need medical treatment and the disease is considered chronic, managed with medicine, diet, supplements and lifestyle changes. Sarcoidosis in not contagious.
For all the technical stuff, click here. The site is thorough.
I am a good reporter, editor, writing and reporting coach and teacher.
But writing and THEN editing my own words? That doesn't work so well. Every writer needs an editor, a second set of eyes in the head of someone who is detached from the original copy.
So, I'd appreciate it if you email me if you spot typos misspellings, grammatical errors, etc. I'll fix the problem ASAP. Thanks!
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