Friday was a bad day. There are the kind of bad days where nothing at work goes right, or you break your small toe, or maybe your dog pees on the carpet and you burn dinner. Friday wasn’t that kind of a bad day. It was much worse.
The trouble is it may be weeks before I can publicly explain it all on a blog. The part I can’t explain isn’t directly about Hermansky-Pudlak Syndrome, but as in so many things, HPS colors my reaction to it – and my strategy for dealing with it.
Part of Friday’s bombshell (there was more than one) does have to do with HPS. Friday I went to the doctor to whine about my fatigue officially. I really like this doctor. I’m glad I held out and didn’t go to see anyone else just to get in earlier. He didn’t pat me on the head or make me feel silly. Instead he ordered what he termed “the fatigue work up.” He took blood, ordered another sleep study to see if my CPAP settings are still correct, and then he listened to my chest.
As he moved the stethoscope around he kept returning to one spot, crinkled up his nose, went “humph” and announced it sounded a bit wheezy when I breathed out. While I’ve been tired, I haven’t been coughing, or had cold symptoms or increased asthma-like symptoms or anything that might explain a wheeze. I have felt more out of breath than usual, but I also haven’t been to the gym in a month and a half. What do you expect?
Many of us with HPS live in a kind of suspended universe expecting that at some time, the sky is going to fall and we’re going to discover something scary about our lungs. So, crinkled noses and “humphs” while listening to us breath tend to create a bit of anxiety. He ordered a chest X-Ray, which of course, I won’t hear about until Monday at the earliest. This news, in context with the other developments that I can’t share here yet, left me feeling completely overwhelmed and shell shocked.
What’s making a wheeze? What’s going on in there, and will he really be able to see anything in a chest X-ray? Why not a CT scan? I guess NIH has spoiled me.
The other developments make getting to the bottom of this even more important.
Friday evening we had a dinner with some visiting missionaries at Pastor Pat’s. I’d looked forward to it as it was a chance to meet new people, which I always enjoy. I wasn’t much of a conversationalist though. I felt so completely drained by the day and it was all I could do to remain composed and not just burst.
The missionaries work in Guatemala with the indigenous people, most of whom are very poor. As bad as my day was, at least I’m not living on a dump in Guatemala. Things could be worse. And yet somehow being reminded of that didn’t really make me feel any better. I hate it that this was true.
There was something about these missionaries that I could relate to and that felt familiar about them – the experience of coming home to your own country after being away for a long time. It’s not exactly the same as I suspect living conditions in Europe are much better than they enjoy. But, there’s something about living in another culture, feeling like you’ve become a part of it and yet at the same time being distinctly aware that you’re an outsider. There’s a part of me that always thinks of Germany as home, even though I haven’t lived there in more than a decade.
When you come home, you want to share so much with people here, but it’s hard because many of them can never truly understand.
The trouble is it may be weeks before I can publicly explain it all on a blog. The part I can’t explain isn’t directly about Hermansky-Pudlak Syndrome, but as in so many things, HPS colors my reaction to it – and my strategy for dealing with it.
Part of Friday’s bombshell (there was more than one) does have to do with HPS. Friday I went to the doctor to whine about my fatigue officially. I really like this doctor. I’m glad I held out and didn’t go to see anyone else just to get in earlier. He didn’t pat me on the head or make me feel silly. Instead he ordered what he termed “the fatigue work up.” He took blood, ordered another sleep study to see if my CPAP settings are still correct, and then he listened to my chest.
As he moved the stethoscope around he kept returning to one spot, crinkled up his nose, went “humph” and announced it sounded a bit wheezy when I breathed out. While I’ve been tired, I haven’t been coughing, or had cold symptoms or increased asthma-like symptoms or anything that might explain a wheeze. I have felt more out of breath than usual, but I also haven’t been to the gym in a month and a half. What do you expect?
Many of us with HPS live in a kind of suspended universe expecting that at some time, the sky is going to fall and we’re going to discover something scary about our lungs. So, crinkled noses and “humphs” while listening to us breath tend to create a bit of anxiety. He ordered a chest X-Ray, which of course, I won’t hear about until Monday at the earliest. This news, in context with the other developments that I can’t share here yet, left me feeling completely overwhelmed and shell shocked.
What’s making a wheeze? What’s going on in there, and will he really be able to see anything in a chest X-ray? Why not a CT scan? I guess NIH has spoiled me.
The other developments make getting to the bottom of this even more important.
Friday evening we had a dinner with some visiting missionaries at Pastor Pat’s. I’d looked forward to it as it was a chance to meet new people, which I always enjoy. I wasn’t much of a conversationalist though. I felt so completely drained by the day and it was all I could do to remain composed and not just burst.
The missionaries work in Guatemala with the indigenous people, most of whom are very poor. As bad as my day was, at least I’m not living on a dump in Guatemala. Things could be worse. And yet somehow being reminded of that didn’t really make me feel any better. I hate it that this was true.
There was something about these missionaries that I could relate to and that felt familiar about them – the experience of coming home to your own country after being away for a long time. It’s not exactly the same as I suspect living conditions in Europe are much better than they enjoy. But, there’s something about living in another culture, feeling like you’ve become a part of it and yet at the same time being distinctly aware that you’re an outsider. There’s a part of me that always thinks of Germany as home, even though I haven’t lived there in more than a decade.
When you come home, you want to share so much with people here, but it’s hard because many of them can never truly understand.
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