Journal entry by dody benfer —
My first journal entry.. What do i say? What part of "me" is anyone interested in reading about? Lets see...
Hi.. My name is Dody. I have chronic illnesses that are never going to go away, although sometimes i feel better, and sometimes i feel too sick to even wake up. This week i feel not half bad.. Thats about as good as it gets anymore. I went to the hemotologist last week and got a phlebotomy, and that makes all the difference in the world. I dont understand, for as much better as they make me feel, why the doctor doesnt have me get them more often.
"I don't understand" seems to be the most used thought and phrase of my exixtance with the health care industry. I really dont understand the most why no one ever does investigative stuff. Or i should say, almost noone. I went to Iowa City in September 2011 and they were considerate enough to give me a diagnosis... for the first time since 1999 when i was inpatient for a portal vein thrombosis. I had no idea at that time in 1999 what that meant, and (my most used and over used phrase) I dont understand why they didnt do something about getting rid of it then... or now. just ignore. Watch and wait they call it. observation they call it all. Observe me getting sicker and sicker as more time goes by. So, in 2011 they diagnosed a Jak 2 mutation. They decided it was something called Polycythemia Vera, although no one ever has totally convinced me of the specifics of that one since the number one symptom is too many red blood cells, which my labs never show. But it could be because they are hiding in the enlarged spleen, i suppose. so, that is problem number one on the list.... The liver is messing up because of the blood clot on the portal vein, causing the liver to slowly die. And keeping me sick, nauseas and weak all of the time.
Hi.. My name is Dody. I have chronic illnesses that are never going to go away, although sometimes i feel better, and sometimes i feel too sick to even wake up. This week i feel not half bad.. Thats about as good as it gets anymore. I went to the hemotologist last week and got a phlebotomy, and that makes all the difference in the world. I dont understand, for as much better as they make me feel, why the doctor doesnt have me get them more often.
"I don't understand" seems to be the most used thought and phrase of my exixtance with the health care industry. I really dont understand the most why no one ever does investigative stuff. Or i should say, almost noone. I went to Iowa City in September 2011 and they were considerate enough to give me a diagnosis... for the first time since 1999 when i was inpatient for a portal vein thrombosis. I had no idea at that time in 1999 what that meant, and (my most used and over used phrase) I dont understand why they didnt do something about getting rid of it then... or now. just ignore. Watch and wait they call it. observation they call it all. Observe me getting sicker and sicker as more time goes by. So, in 2011 they diagnosed a Jak 2 mutation. They decided it was something called Polycythemia Vera, although no one ever has totally convinced me of the specifics of that one since the number one symptom is too many red blood cells, which my labs never show. But it could be because they are hiding in the enlarged spleen, i suppose. so, that is problem number one on the list.... The liver is messing up because of the blood clot on the portal vein, causing the liver to slowly die. And keeping me sick, nauseas and weak all of the time.
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