I need to post an update, again mostly for my own record keeping. It has not been a great week on the health front. I’ve had a lot of diarrhea. It does improve with the Lomodil, but I’m wondering if Lomodil is really meant to be a long-term solution for this problem. I’ve also had some mild cramping about 30 minutes after I eat most of the week. I’m also back to having joint pain which is worse in the morning or if I sit still too long. And I’m back to being TIRED! That’s so frustrating for me. It really impacts my concentration and makes it hard for me to get my work done. Today I’ve slept a good part of the day. During most of the week I only slept a few hours a night because I had to keep getting up to go to the bathroom in the middle of the night. When I’m having diarrhea at night it’s very hard for me to sleep. I’m afraid I’ll fall into a deep sleep and not realize my bag is filling up – and boom – there will be a most horrible explosion! Yuk!
Again, none of this is severe, but it’s annoying and it’s an indicator that something is up.
My breathing has been a bit wonky too. One day I have no troubles, and the next day even just walking down the hall at the office has me feeling a tad out of breath. We’ve had some bad ozone days. I can tell they’re bad ozone days before I even hear it on the news – just walking to the bus stop I often feel it.
There’s a part of me that wonders if this is partly my upcoming NIH trip in the back of my mind. I’m really getting a bit nervous about this trip, which is really silly. It will be the one-year anniversary since I entered the drug trial. They’ll do the normal pulmonary function tests and six-minute walk test and they’ll do a CT scan, so I’ll have a pretty good idea whether my pulmonary fibrosis is stable or on the move. My last two trips have been very good on the lung front, so I’m not expecting any kind of drastic drop – but in the back of my mind I always have this worry that the time I go to NIH not expecting anything drastic will be the trip that they find something drastic.
This trip will be a very, very, busy trip. Not only will I have more tests this trip, but as far as I know the documentary film crew will be with me at least part of the week. I’m used to asking the questions instead of answering them, so in my mind I keep trying to think of what they might want to ask me. Evil grin! What would I ask me if I were doing the interview? HA! What do I want to be sure and share with them?
Again, none of this is severe, but it’s annoying and it’s an indicator that something is up.
My breathing has been a bit wonky too. One day I have no troubles, and the next day even just walking down the hall at the office has me feeling a tad out of breath. We’ve had some bad ozone days. I can tell they’re bad ozone days before I even hear it on the news – just walking to the bus stop I often feel it.
There’s a part of me that wonders if this is partly my upcoming NIH trip in the back of my mind. I’m really getting a bit nervous about this trip, which is really silly. It will be the one-year anniversary since I entered the drug trial. They’ll do the normal pulmonary function tests and six-minute walk test and they’ll do a CT scan, so I’ll have a pretty good idea whether my pulmonary fibrosis is stable or on the move. My last two trips have been very good on the lung front, so I’m not expecting any kind of drastic drop – but in the back of my mind I always have this worry that the time I go to NIH not expecting anything drastic will be the trip that they find something drastic.
This trip will be a very, very, busy trip. Not only will I have more tests this trip, but as far as I know the documentary film crew will be with me at least part of the week. I’m used to asking the questions instead of answering them, so in my mind I keep trying to think of what they might want to ask me. Evil grin! What would I ask me if I were doing the interview? HA! What do I want to be sure and share with them?
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