I think I’ve started to turn the corner today. Mind you, I’m still not in the I-feel-just-great category but I’m definitely feeling better.
I slept last night – all the way through the night – and actually right through my alarm this morning. Thus, I opted to work from home, which I think was okay with my boss. Our company Christmas party was today, so I’d have only worked about two hours before being expected to make merry at a pub called Fox and Hound.
I’m all for merry making, holiday cheer etc. but I’m not in the mood. These functions tend to be political, and the politically savvy thing to do would be to show up and smile and try to make conversation. But every time I start talking out loud, I start hacking. This is probably not good for corporate politics. Can you imagine? You’re making small talk with some corporate mucky-muck and all you can do is nod your head while coughing this cough that sounds like a dog barking while gasping for air in between hacks? Lovely isn’t it? Well, I bet it would be memorable, but for all the wrong reasons.
It seemed like catching up on my stories that aren’t finished and catching the odd cat nap was a much better use of my time. Who am I kidding anyway? I just write the stuff that keeps the ads from knocking together. Working the office politics scene has never yielded much that matters anyway. I guess I’m just not good at it.
So, I stayed home and worked on my story this morning. Then I cat napped this afternoon while listening to NPR. Science Friday actually had a pretty good segment on the role of inflammation in disease. Check it out at: http://www.sciencefriday.com. The explanation of how inflammation works was very easy to understand.
As I listened, I couldn’t help but think of the recent research developments for Hermansky-Pudlak Syndrome, especially Dr. Gutentag and Dr. Young’s work with the cells that produce surfactant in the lung. There’s a theory that the inability of these cells to work just as they should may send out a distress signal that creates an inflammatory response, and that over many years this stress on the lungs begins to result in scarring. The theory seemed (to my non-medical mind) to fit very well with the role of inflammation being discussed by the docs. on the show.
The conversation, however, didn’t do much to relieve my anxiety about being sick. Every time I get sick, especially when that illness involves difficulty breathing and lots of coughing, I get very anxious. I picture the little macrophages in my lungs all foamy and “fired up” all ready to start “defending” my lungs with a little scarring. I start to wonder how much, if any, damage is being done in there. Is the treatment course I’m on really going to do anything? Is it aggressive enough? Does my doctor think about those already “angry” macrophages when he’s considering what to do? Does it matter? Does he remember what I told him about the macrophages?
That’s part of the stress of living with an ultra rare disorder. There is no doctor to go to who completely gets it. They know about strep, for example, but do they consider how a common problem like that plays into the bigger disease process underway in my body?
Am I being ridiculous with these worries? It often seems like there’s no place to go and get solid answers. The doctors at NIH can’t treat us for every day things. We can ask their advice, but at the end of the day we’re at the mercy of our local doctor who doesn’t read every paper published about HPS and has never treated anyone else with this disease. You try to ask questions and express concerns in such a way as to not make your local doc think you don’t trust him, or that you don’t think he knows what he’s doing – at the same time, well – you can’t help but wonder?
Week after next I’m supposed to have my first check up since being admitted into the drug trial to study the use of Pirfenidone for the treatment of the pulmonary fibrosis of HPS. This means, of course, that I’ll be having another pulmonary function test.
For the first time, I was actually looking forward to the test. Typically the build up is a bit of a nail biter as the results are a pretty good indication of how quickly my disease process is moving. I typically can’t help but feel anxious about the results and it’s often quite an emotional wait. But this time my breathing has been so great I wasn’t dreading the test. I felt pretty confident the results would be pretty good – or at least the same. Now, with this cough and my chest and back burning and my huffing and puffing at the least bit of exertion, and I’m really wondering what the results will be like. Will this bug be gone by week after next? Will it have any residual effect on the results? If I get a bad score, is it fair to blame it on this current bug? And even if it is, I’ll be in a limbo until the next test in April. All of this, and of course, there’s always the chance I’m taking a sugar pill.
I slept last night – all the way through the night – and actually right through my alarm this morning. Thus, I opted to work from home, which I think was okay with my boss. Our company Christmas party was today, so I’d have only worked about two hours before being expected to make merry at a pub called Fox and Hound.
I’m all for merry making, holiday cheer etc. but I’m not in the mood. These functions tend to be political, and the politically savvy thing to do would be to show up and smile and try to make conversation. But every time I start talking out loud, I start hacking. This is probably not good for corporate politics. Can you imagine? You’re making small talk with some corporate mucky-muck and all you can do is nod your head while coughing this cough that sounds like a dog barking while gasping for air in between hacks? Lovely isn’t it? Well, I bet it would be memorable, but for all the wrong reasons.
It seemed like catching up on my stories that aren’t finished and catching the odd cat nap was a much better use of my time. Who am I kidding anyway? I just write the stuff that keeps the ads from knocking together. Working the office politics scene has never yielded much that matters anyway. I guess I’m just not good at it.
So, I stayed home and worked on my story this morning. Then I cat napped this afternoon while listening to NPR. Science Friday actually had a pretty good segment on the role of inflammation in disease. Check it out at: http://www.sciencefriday.com. The explanation of how inflammation works was very easy to understand.
As I listened, I couldn’t help but think of the recent research developments for Hermansky-Pudlak Syndrome, especially Dr. Gutentag and Dr. Young’s work with the cells that produce surfactant in the lung. There’s a theory that the inability of these cells to work just as they should may send out a distress signal that creates an inflammatory response, and that over many years this stress on the lungs begins to result in scarring. The theory seemed (to my non-medical mind) to fit very well with the role of inflammation being discussed by the docs. on the show.
The conversation, however, didn’t do much to relieve my anxiety about being sick. Every time I get sick, especially when that illness involves difficulty breathing and lots of coughing, I get very anxious. I picture the little macrophages in my lungs all foamy and “fired up” all ready to start “defending” my lungs with a little scarring. I start to wonder how much, if any, damage is being done in there. Is the treatment course I’m on really going to do anything? Is it aggressive enough? Does my doctor think about those already “angry” macrophages when he’s considering what to do? Does it matter? Does he remember what I told him about the macrophages?
That’s part of the stress of living with an ultra rare disorder. There is no doctor to go to who completely gets it. They know about strep, for example, but do they consider how a common problem like that plays into the bigger disease process underway in my body?
Am I being ridiculous with these worries? It often seems like there’s no place to go and get solid answers. The doctors at NIH can’t treat us for every day things. We can ask their advice, but at the end of the day we’re at the mercy of our local doctor who doesn’t read every paper published about HPS and has never treated anyone else with this disease. You try to ask questions and express concerns in such a way as to not make your local doc think you don’t trust him, or that you don’t think he knows what he’s doing – at the same time, well – you can’t help but wonder?
Week after next I’m supposed to have my first check up since being admitted into the drug trial to study the use of Pirfenidone for the treatment of the pulmonary fibrosis of HPS. This means, of course, that I’ll be having another pulmonary function test.
For the first time, I was actually looking forward to the test. Typically the build up is a bit of a nail biter as the results are a pretty good indication of how quickly my disease process is moving. I typically can’t help but feel anxious about the results and it’s often quite an emotional wait. But this time my breathing has been so great I wasn’t dreading the test. I felt pretty confident the results would be pretty good – or at least the same. Now, with this cough and my chest and back burning and my huffing and puffing at the least bit of exertion, and I’m really wondering what the results will be like. Will this bug be gone by week after next? Will it have any residual effect on the results? If I get a bad score, is it fair to blame it on this current bug? And even if it is, I’ll be in a limbo until the next test in April. All of this, and of course, there’s always the chance I’m taking a sugar pill.
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