My Asthma Story: The Pithy Version
When I was a kid (I’m old enough I can say that now) regional doctors didn’t have access to the same wisdom as the experts at research hospitals. This was especially the case when it came to asthma. So, when a regional doctor (like mine) got to the point he was unable to manage a child’s asthma, the child was referred to one of these research hospitals.
I was born in 1970. Mom says I was diagnosed with asthma at the age of two, although I was always sniffling and sneezing and breathing heavy before that. She said my older brother Bobby was often annoyed at my heavy breathing. I can say I don’t blame him.
Still, Bobby, along with David and Dan -- and later Tony, needed a fourth person to play baseball or football. This was true even if smoke was billowing from the chimney and snow falling from the sky. Wanting to join in on the fun, and not wanting to let my brothers down, I’d join them. I would continue to play even as my asthma got worse and worse and worse.
I just wanted to be normal
I have no memories of not having asthma. So, I suppose this might explain why I developed a lackadaisical perception of feeling short of breath. I became nonchalant about it. I was able to hide how I felt. This was true even when I was severely short of breath. I didn’t let it stop me from doing anything. I just wanted to be normal. And I acted as though I was -- or tried to anyway.
By 1980 I was 10-years-old. By this time I was adept at hiding how miserable I felt from my parents. They were good parents, and they watched closely over me. I just developed this idea that I didn’t want to bother them --> again. So, I learned to keep it to myself, to deal with it myself, until I was so bad I had to go to the emergency room.
By 1981, I was making many trips with my parents to doctors. There were also many unscheduled doctor visits for asthma, and emergency room visits for asthma, and hospital admissions for asthma.
By 1982, I had become a misfit at school. With my runny nose, high-set shoulders, and funny breathing, I was unable to participate in sports. I also became a prime target for bullies.
Interestingly, I became good friends with one of these bullies about six years later. She said to me: “I feel so bad that I picked on you. If you would have only shared with us that you had asthma, I never would have done that. None of us would. I swear!”
In 1984, my parents took me to the emergency room for asthma 11 times, and I was admitted to the hospital for asthma four times for at least six days. By the end of the year, the decision was made between my parents and doctors to send me to the asthma hospital in Denver.
So, on January 8, 1985, I boarded a United Airlines flight from Grand Rapids, Michigan, to Denver, Colorado. That night I had another severe asthma attack. Mom had an epi pen. She was afraid to use it. It was a difficult night for her and me. But, ultimately, I pretended to be okay so mom wouldn’t worry. She fell asleep. I continued to struggle before falling asleep due to exhaustion.
The next day mom and I walked across the street, each of us holding one handle on my trunk filled with all my belongings. I met my counselor and was admitted.
On the first day, as soon as I walked in the door, they called a “code blue” on me. To them, this meant that my asthma was bad and the skin around my lips was blue.
I said, “I’m fine!”
They insisted I wasn’t.
You see, I was good at fooling my parents, but I was not going to fool these nurses.
Asthma had messed with my head
After talking with nurses, doctors, counselors, and psychologists, I learned that I had asthma so bad for so long that I just developed a ho-hum attitude about it. Rather than bothering my parents again, rather than telling people I had it, I’d just tough it out.
I would puff and puff and puff on my inhalers until they were empty, and only then would I go to my parents for help. I was taught about this behavior and told that to continue to do it was to continue on a path to self-destruction and death.
So, obviously, asthma had messed with my head. The experts at the hospital had to deal with this aspect of my asthma, along with helping me obtain ideal asthma control.
Now, I know what you’re thinking, and I thought it too back then. They were treating asthma as though it was all in my head. Not true. These experts knew that asthma was not caused by anxiety. However, having a chronic disease like asthma can mess with your head. Okay, there is a difference here.
So, they helped me get back on track.
Another neat thing about the asthma hospital is I learned I was not alone. When I was admitted there were at least 14 other boys and girls in the same boat as me. They all had asthma so bad that their parents and doctors couldn’t manage it, so they were referred to the experts. Some of them became my good friends.
It was not your typical hospital. Sure, there were nurses, doctors, counselors, psychologists, physical therapists, and occupational therapists. But you also got up in the morning, took your medicine, got dressed, showered, and went off to school. In the evenings and on weekends we participated in normal activities -- such as games. We also went on fun field trips -- such as going to the mall, movies, or into the Rocky Mountains.
I was admitted for six months. I flew back home on another United Airlines flight and was excited to see my brothers. They were equally excited. My asthma was well controlled. My parents were better equipped to care for my asthma, and I was better equipped to manage it -- and to stop and speak up and seek treatment if ever it bothered me again.
The asthma hospital still exists, but they stopped admitting children in the mid-1990s, although still treat children on an outpatient basis if necessary. However, most children with asthma don’t get that bad anymore. This is because, thanks to the Internet and asthma guidelines, regional doctors have access to the same wisdom as doctors at research hospitals.
Have you ever gotten "moon face" as a side effect of prednisone?