Well, believe it or not, I spend very little time as a patient inside a hospital. In fact, just like with most chronic asthmatics, with the exception of frequent outpatient and lab type medical visits, most of my asthma care is self-care and administered at home. I have all the tools needed to treat even my more moderate asthma flares at home. And just like many others here, I spend the majority of my asthma time in rehab mode. (In lay terms, the process of healing and getting back to normal after a bad flare.) Exacerbation rehab does not take place in the hospital, it almost always takes place entirely at the patients home.
The past 12 months has actually been one of my better breathing years. I think the Azithromycin I’ve on for 18 months now is finally having a positive effect. I only had 4 separate hospitalizations totaling 29 ICU days. Hey, that’s only a 12th a year! And while that may still sound like a lot, when you consider the sheer severity of my disease it’s actually not that bad. It’s just that when I get sick (meaning my asthma flares up severely ), and I end up in the hospital, the treatment is usually more technical and more complicated. Words like and “life support” and “respiratory failure” start surfacing, which tends to add to the drama. But the whole hospital routine is just part of life when you have a severe breathing disorder.
So what other things do I do when I’m not being a patient? Well, lots of things. But If I had to prioritize, Id say that giving back in the form of educating the public is on the top of my least. I try to devote at least a few hours per week to public awareness/advocacy/blogging, those sort of things. I don’t want anyone to go through what I’ve gone through with this disease, and I believe spreading the word brings more people onboard and reduces suffering and loneliness. Not surprisingly, the timing and frequency of my public service type activities tends to evolve around my actual asthma flares. For me, it’s just easier to think or write about a subject when I’m suffering acutely from it. I also believe that the high dose prednisone that accompanies those flares gives me more clarity on whatever it is I’m trying to focus on. I also try to stay current on asthma treatment breakthroughs, as well as actively participating in a least one research project at time.
Next in line would be Fitness walking. After all, it’s the main reason this blog exists in the first place. Obviously I can’t walk as far or for as long as I used to, but it’s not because of my lungs. It’s because of issues with my knees and leg muscles, which I hope to resolve soon. In any case, I still walk at least 2 miles per day, sometimes more. Im also doing more pre and post walk stretching to prevent further injury to my legs. No more full marathons planned, but I’m not excluding the possibly of a 1/2.
Third on the list is music practice. Sometimes you just need a hobby that makes you feel good no matter how bad you feel. One that transports you to another place. But one that also requires some skill and practice to get there. I love the sound of a double bass, but I don’t have room for one in my house, so I play the bass guitar. Possibly the only weird part, is the time of I day I actually practice. Uh, that would be would be 4-6am daily. On Sundays I can play 6 hours straight. The reason for the early start is mostly breathing related. My best breathing occurs in the early morning and I have a hard time sleeping anyway, so why waste the hours.
Finally, and in no particular order on this one ….I spend most of my days doing what most people do…. living an ordinary life the best I can. From home, car and pet upkeep to shopping to planning new adventures to doing nothing at all. Just the normal stuff that everyone does. Oh, did I mention that I love to eat too. I love to eat, but I don’t love to go out to do it. So lots of take out or home cooking experiments. I also love to read , I love technology and blogging, but shy away from too much social media. I love having the ability to instantly learn something. I also love to teach and I adore wildlife.
So while it might seem that Im endlessly suffering from debilitating and life threatening asthma flares, I’m actually living pretty much way most people do, only on a shorter leash and with some terrible asthma sprinkled into the mix. Its all about perspective.