April 2-3: Just be sympathetic whilst I whine
It's 12:30 in the morning (hence the date) and I should be in bed. But I came home today with my chest screaming in pain, sending me to the couch for a very long time. After several hours, and some codeine, the pain has settled down substantially. So, now that I'm feeling better and have rested it's more difficult to get to bed.
The pain: it's not super bad, but that's comparing it to post-surgical pain. When I try to disconnect myself from it and be as objective as possible I'd have to say it's about a 5 on the 1-10 scale. But the problem is that I have to keep functioning. And the pain, once it comes, is unremitting. It hurts to sit, to reach for anything, to drive, to twist a jar lid off, to open or close a window. It hurts to breath, it hurts to not breath. The only thing that relieves it is sitting/reclining on the couch being absolutely still.
It's difficult to assess if the separation of the sternum (breastbone) is worse. No one wants to feel it, much less really examine it. There have never been objective measurements taken since the final surgery. But it feels like it moves at times, is still unstable. I had a huge sneeze today and swear I felt and heard it move while clutching my chest. And there is also the delightful sensation of my right lung slamming into the mesh that holds it in, causing a slight pouching out from between the ribs.
The problem, of course, is that there isn't anything that can be done. Sternal non-union is a well-known issue with patients who have had their sternums sawed in half even once. Mine was twice, plus all the rib spreading on the right from the first surgery where the ribs never went back into place, plus the right shoulder blade area where they then opened up the right back ribs and moved everything out of the way to put the mesh in the front. So that's four major chest wall insults. Add in thin, osteopenic bones and it just gets worse.
The irony is that my scar is not all that obvious. Looking at me, even with several inches of it visible, gives no clue as to the problems underneath. So it's hard for people to understand, unless they feel it, which hurts. Just to make the point, however, I do insist at times. It's especially irritating because people truly believe that I'm perfectly fine, should be grateful and happy all the time for how lucky I am. Funny, but with pain, now every day since increasing my hours, is the recognition that I'm paying the cost, most people just don't understand how much has changed.
My next cardiology appointment is May 1. Even though nothing can be done, I'd still like it on the record that working more hours causes more pain. That, of course, gets me worrying about the future. Don't tell me not to borrow trouble--it doesn't work.
OK, tired enough to try for the bed thing...... Thanks for checking in, Laurie
The pain: it's not super bad, but that's comparing it to post-surgical pain. When I try to disconnect myself from it and be as objective as possible I'd have to say it's about a 5 on the 1-10 scale. But the problem is that I have to keep functioning. And the pain, once it comes, is unremitting. It hurts to sit, to reach for anything, to drive, to twist a jar lid off, to open or close a window. It hurts to breath, it hurts to not breath. The only thing that relieves it is sitting/reclining on the couch being absolutely still.
It's difficult to assess if the separation of the sternum (breastbone) is worse. No one wants to feel it, much less really examine it. There have never been objective measurements taken since the final surgery. But it feels like it moves at times, is still unstable. I had a huge sneeze today and swear I felt and heard it move while clutching my chest. And there is also the delightful sensation of my right lung slamming into the mesh that holds it in, causing a slight pouching out from between the ribs.
The problem, of course, is that there isn't anything that can be done. Sternal non-union is a well-known issue with patients who have had their sternums sawed in half even once. Mine was twice, plus all the rib spreading on the right from the first surgery where the ribs never went back into place, plus the right shoulder blade area where they then opened up the right back ribs and moved everything out of the way to put the mesh in the front. So that's four major chest wall insults. Add in thin, osteopenic bones and it just gets worse.
The irony is that my scar is not all that obvious. Looking at me, even with several inches of it visible, gives no clue as to the problems underneath. So it's hard for people to understand, unless they feel it, which hurts. Just to make the point, however, I do insist at times. It's especially irritating because people truly believe that I'm perfectly fine, should be grateful and happy all the time for how lucky I am. Funny, but with pain, now every day since increasing my hours, is the recognition that I'm paying the cost, most people just don't understand how much has changed.
My next cardiology appointment is May 1. Even though nothing can be done, I'd still like it on the record that working more hours causes more pain. That, of course, gets me worrying about the future. Don't tell me not to borrow trouble--it doesn't work.
OK, tired enough to try for the bed thing...... Thanks for checking in, Laurie
posted by Laurie @ 12:34 AM
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