I feel like I’m starting to emerge from the fog. I actually only yawned a few times at work today, although my concentration was still lacking. That feeling of constantly wanting to do nothing but lie down and sleep is so frustrating, and it’s been so nice to have a day free from it today.
More bombshells on the work front – but I’m not going to get into that here. Yet, even with those I didn’t want to go lie down and tune out the world. Hey, this is progress!
I’m still very worried about whatever the doc. thinks he heard in my lungs on Friday though. Of course, no phone call today with any test results. AAAAHHHH…..this is my big doctor gripe. I feel crappy enough to haul my rather large backside into the doctor’s office, shell out money for cab fare and take time off work – so obviously I’m quite concerned or I’d stay at home, eat chicken noodle soup and wade out the storm. But, if your test results come back and nothing much is wrong, you often never get a phone call. Maybe I’ll get a little note in the mail in about two weeks with “normal” checked off. I don’t think so! I guess I’ll have to start pestering someone tomorrow.
But for today I’m just happy I’m awake!
Several people now have asked me if I think my fatigue is a result of depression. I really don’t think so, but I understand why they’re asking.
When I was first diagnosed with HPS I was very depressed. It was scary, and my family just didn’t seem to “get it.” I felt so alone. There were no treatments and all I saw was a horrible prognosis and no support.
But today our drug trial is off and running. I personally know people who have done quite well on this drug. I know that while research may move “at the speed of science” that we’re making real progress. Yes, I have bad days and so when a doctor asks me, “Is it possible that you’re depressed?” I feel like being a smart-ass and asking them if they have any idea what it’s like to live with a rare disease like HPS. What an incredibly dumb question. Yes, I get depressed. I get frustrated at all the work there is to do and how few people there are to do it. I get to thinking about the six people I know that passed away from HPS in the last 14 months – and their siblings and family left behind. Yes, I have my moments.
But that being said, I’ve been in the darkest of dark places, and I don’t feel I’m there now because I’m more hopeful about my future than I’ve been in four years. I have pictures of some of the children with HPS hanging in my cube at work. When I'm really feeling frustrated at things, I look at their picture and I feel better because I know their lives will be different.
More bombshells on the work front – but I’m not going to get into that here. Yet, even with those I didn’t want to go lie down and tune out the world. Hey, this is progress!
I’m still very worried about whatever the doc. thinks he heard in my lungs on Friday though. Of course, no phone call today with any test results. AAAAHHHH…..this is my big doctor gripe. I feel crappy enough to haul my rather large backside into the doctor’s office, shell out money for cab fare and take time off work – so obviously I’m quite concerned or I’d stay at home, eat chicken noodle soup and wade out the storm. But, if your test results come back and nothing much is wrong, you often never get a phone call. Maybe I’ll get a little note in the mail in about two weeks with “normal” checked off. I don’t think so! I guess I’ll have to start pestering someone tomorrow.
But for today I’m just happy I’m awake!
Several people now have asked me if I think my fatigue is a result of depression. I really don’t think so, but I understand why they’re asking.
When I was first diagnosed with HPS I was very depressed. It was scary, and my family just didn’t seem to “get it.” I felt so alone. There were no treatments and all I saw was a horrible prognosis and no support.
But today our drug trial is off and running. I personally know people who have done quite well on this drug. I know that while research may move “at the speed of science” that we’re making real progress. Yes, I have bad days and so when a doctor asks me, “Is it possible that you’re depressed?” I feel like being a smart-ass and asking them if they have any idea what it’s like to live with a rare disease like HPS. What an incredibly dumb question. Yes, I get depressed. I get frustrated at all the work there is to do and how few people there are to do it. I get to thinking about the six people I know that passed away from HPS in the last 14 months – and their siblings and family left behind. Yes, I have my moments.
But that being said, I’ve been in the darkest of dark places, and I don’t feel I’m there now because I’m more hopeful about my future than I’ve been in four years. I have pictures of some of the children with HPS hanging in my cube at work. When I'm really feeling frustrated at things, I look at their picture and I feel better because I know their lives will be different.
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