Warning - to the non-HPS'er, this might fall under the heading of too much personal information. Read at your own risk.
I need to post a health update. Honestly, I sort of hate doing it. But, the point of this blog is to help document day-to-day life (in my life anyway) with HPS as well as to help document things for my own care. I’m getting sort of sloppy about this lately.
I think it’s because I’m spending so much time filing out depressing disability paperwork that by the time I deal with that, the last thing I want to do is whine some more about my issues. But, I do need to sort of keep track of this stuff.
It’s sometimes amazing to me (and I remember this from my super sick days in college too) how you can feel so amazingly crappy at one point, and a few hours later, so much better. But those crappy times can really interfere with day-to-day life.
My bowels are acting weird and I need to start documenting it to figure out if it’s medication related or something else maybe I need to be mentioning to one of my doctors.
Yesterday, for example, was diarrhea day. I was up most of the night the night before last with the runs. And after a few hours of empting my appliance every hour, the code browns started up.
The skin around my stoma doesn’t look too bad. There’s a little raw spot right at the base of the stoma, but it seems like the stoma its self, right around the base, is bleeding some and feels sore.
Then last night and this morning it was constipation day. Because I seem to be going back and forth between these extremes, I hadn’t taken anything. Last night I had to leave Homers because of a code brown. It felt as though the stoma was just straining against the appliance and the poo just sort of sat there right on the stoma, probably melting the seal, thus the code brown that time.
This morning I was slow getting going because my stomach was all crampy. The cramps weren’t horrible, but uncomfortable. They feel like female cramps, only it isn’t time for that.
This afternoon, as if someone had flipped a switch, we were back to the runs. I ate some nachos (okay, maybe not the best choice) and went to Homers. By the time I got to Homers I was having a bathroom emergency. My pouch was filling up like someone had turned on a faucet and my tummy was cramping again, this time more painful. The sweat was starting to form on my brow as I danced around outside the bathroom.
This poor lady was in there forever! I nearly went to the men’s room for fear of a poo explosion. It made me think of my own long history of bathroom episodes when someone was probably wondering if I’d ever come out again. I could hear the toilet flush and thought, okay, she’s almost done. Then I heard the sink – then God only knows what she was doing. I thought I was in big trouble!
My blood pressure has been hard to regulate, so I’m taking it often now. I really need to have a talk with a doc about these meds. It seems like my blood pressure “needs” are different depending on the day. When I’m having a diarrhea day, I start having dehydration issues and my blood pressure goes much lower. On other days when I’m running around and more active, it runs higher and seems to need more umph to keep it in the right range.
The other thing is I don’t seem to tolerate the low blood pressures well. What wouldn’t be that low for some seems to make me dizzy and very tired feeling.
The night before last I also had another code red thanks to the skin issue. It seems like things are all good again. But one of the scabs over one of the sores must have come off in the night. The skin is so dry. I woke up and had blood all over my nightgown and sheets. The sheets are red so I don’t think the stains will be that noticeable – but the nightgown is beyond help. That’s the third nightgown I’ve had to throw away for some sort of massive bio-stain in two months. Ahhh…like I can afford that.
Last weekend I had another cold. I felt horrible Saturday and spent the entire day in bed. Thankfully, this cold came and went rather quickly, although I’ve still got a bit of a dry cough going on.
My fatigue and wacky sleep schedule seems a bit problematic if I hope to operate in the real world. I think part of the problem, however, is that when you’re up most of the night with issues, even just one day a week (and for me it’s more than that), it’s like constantly having jetlag without the bonus of an international vacation.
I try to force myself to keep to a reasonably normal schedule, but eventually I just get to feeling so tired that I give in and sleep too long and then I’m all off again.
On the good news front – we did have a bit of sunshine and I went for some nice walks. I really, really needed some exercise. I was worried I’d been cooped up long enough that my endurance would be down again, but I did okay. And, despite the bowel trouble, my joint pain hasn’t been bad (except occasionally in my fingers) and my acid reflux seems well controlled right now.
NIH did put me on iron, which could be affecting my bowel. I’ve also been on antibiotics again, which could have my bowel “balance” disturbed. I think I just need to make myself start paying more attention.
I need to post a health update. Honestly, I sort of hate doing it. But, the point of this blog is to help document day-to-day life (in my life anyway) with HPS as well as to help document things for my own care. I’m getting sort of sloppy about this lately.
I think it’s because I’m spending so much time filing out depressing disability paperwork that by the time I deal with that, the last thing I want to do is whine some more about my issues. But, I do need to sort of keep track of this stuff.
It’s sometimes amazing to me (and I remember this from my super sick days in college too) how you can feel so amazingly crappy at one point, and a few hours later, so much better. But those crappy times can really interfere with day-to-day life.
My bowels are acting weird and I need to start documenting it to figure out if it’s medication related or something else maybe I need to be mentioning to one of my doctors.
Yesterday, for example, was diarrhea day. I was up most of the night the night before last with the runs. And after a few hours of empting my appliance every hour, the code browns started up.
The skin around my stoma doesn’t look too bad. There’s a little raw spot right at the base of the stoma, but it seems like the stoma its self, right around the base, is bleeding some and feels sore.
Then last night and this morning it was constipation day. Because I seem to be going back and forth between these extremes, I hadn’t taken anything. Last night I had to leave Homers because of a code brown. It felt as though the stoma was just straining against the appliance and the poo just sort of sat there right on the stoma, probably melting the seal, thus the code brown that time.
This morning I was slow getting going because my stomach was all crampy. The cramps weren’t horrible, but uncomfortable. They feel like female cramps, only it isn’t time for that.
This afternoon, as if someone had flipped a switch, we were back to the runs. I ate some nachos (okay, maybe not the best choice) and went to Homers. By the time I got to Homers I was having a bathroom emergency. My pouch was filling up like someone had turned on a faucet and my tummy was cramping again, this time more painful. The sweat was starting to form on my brow as I danced around outside the bathroom.
This poor lady was in there forever! I nearly went to the men’s room for fear of a poo explosion. It made me think of my own long history of bathroom episodes when someone was probably wondering if I’d ever come out again. I could hear the toilet flush and thought, okay, she’s almost done. Then I heard the sink – then God only knows what she was doing. I thought I was in big trouble!
My blood pressure has been hard to regulate, so I’m taking it often now. I really need to have a talk with a doc about these meds. It seems like my blood pressure “needs” are different depending on the day. When I’m having a diarrhea day, I start having dehydration issues and my blood pressure goes much lower. On other days when I’m running around and more active, it runs higher and seems to need more umph to keep it in the right range.
The other thing is I don’t seem to tolerate the low blood pressures well. What wouldn’t be that low for some seems to make me dizzy and very tired feeling.
The night before last I also had another code red thanks to the skin issue. It seems like things are all good again. But one of the scabs over one of the sores must have come off in the night. The skin is so dry. I woke up and had blood all over my nightgown and sheets. The sheets are red so I don’t think the stains will be that noticeable – but the nightgown is beyond help. That’s the third nightgown I’ve had to throw away for some sort of massive bio-stain in two months. Ahhh…like I can afford that.
Last weekend I had another cold. I felt horrible Saturday and spent the entire day in bed. Thankfully, this cold came and went rather quickly, although I’ve still got a bit of a dry cough going on.
My fatigue and wacky sleep schedule seems a bit problematic if I hope to operate in the real world. I think part of the problem, however, is that when you’re up most of the night with issues, even just one day a week (and for me it’s more than that), it’s like constantly having jetlag without the bonus of an international vacation.
I try to force myself to keep to a reasonably normal schedule, but eventually I just get to feeling so tired that I give in and sleep too long and then I’m all off again.
On the good news front – we did have a bit of sunshine and I went for some nice walks. I really, really needed some exercise. I was worried I’d been cooped up long enough that my endurance would be down again, but I did okay. And, despite the bowel trouble, my joint pain hasn’t been bad (except occasionally in my fingers) and my acid reflux seems well controlled right now.
NIH did put me on iron, which could be affecting my bowel. I’ve also been on antibiotics again, which could have my bowel “balance” disturbed. I think I just need to make myself start paying more attention.
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