I’ve waited to post about the results of my NIH trip. Ryan and Sara have been on their honeymoon, and while I’m quite sure that couples on their honeymoons have much better things to do than check up on things at home online, just in case I didn’t want them to read about these results while they were away. I didn’t want to spoil the trip by having them worry.
But, they should now be home and so many of you have e-mailed asking (which I appreciate very much.)
My test results were sort of a mixed bag. The bad news is that pretty much all of my pulmonary function numbers fell, some by as much as 10 to 16 points. That’s a lot for a four-month period, especially since being in the trial my numbers have been heading upward – not downward. Thankfully, because they had improved so much they could also fall a lot and still not be that bad.
The NIH folks say that they can’t tell if this is just a blip, or a progression of my pulmonary fibrosis, until they see more tests with similar numbers. It’s possible that I still have some inflammation from the horrible cold I had for about eight weeks. They are encouraged that this might be the case because my DLCO didn’t change that much.
My doctor at home seemed to have the same opinion – don’t worry.
The trouble is that’s like asking the sun not to shine.
How can you not wonder in the back of your mind if you’re losing ground?
I came home and sulked for about two days. I felt incredibly tired from the wedding and the NIH trip, and to be honest, I felt depressed.
Today has been much better.
The truth is it is what it is. I’m not going to know if this is a blip, or a big problem, for four more months. I can either waste that time fretting and sulking, or I can continue to do the things that are important to me now. Today that’s working. Not sure if it will still work tomorrow.
Either way it would be a shame to just be miserable for the next four months worrying.
When I got home from the NIH I had another stack of forms waiting for me from the long-term disability people. Most are questions I’ve now answered over and over. I need the money badly, and I need it soon – but I must confess, I didn’t work on them today. I just wasn’t up to another day of documenting everything I can’t do and everything that’s wrong with me. I needed a day where I felt productive. I needed a day to climb out of this funk and start to feel better.
So, this morning I met for the first time with voc. Rehabilitation for the Blind to do the intake. While I had to hash out all the reasons I’m no longer working, at least I got to talk about all the things I can do, which was so nice for a change. We actually talked about plans for the future. The counselor seemed okay with my vocational goal to do non-profit management from home.
I swear, if you didn’t have a problem with depression before you start the process of applying for disability, you’ll suffer from it afterwards – groan. I understand why they have to be the way they have to be, I just get sick of it after a while.
After our meeting I worked on HPS outreach all day. It made me feel like I was getting something done – like I was productive and doing something, even if it was ever so small, on the road to the cure. It was the best medicine. Tomorrow I’ll face down those nasty forms again.
But, they should now be home and so many of you have e-mailed asking (which I appreciate very much.)
My test results were sort of a mixed bag. The bad news is that pretty much all of my pulmonary function numbers fell, some by as much as 10 to 16 points. That’s a lot for a four-month period, especially since being in the trial my numbers have been heading upward – not downward. Thankfully, because they had improved so much they could also fall a lot and still not be that bad.
The NIH folks say that they can’t tell if this is just a blip, or a progression of my pulmonary fibrosis, until they see more tests with similar numbers. It’s possible that I still have some inflammation from the horrible cold I had for about eight weeks. They are encouraged that this might be the case because my DLCO didn’t change that much.
My doctor at home seemed to have the same opinion – don’t worry.
The trouble is that’s like asking the sun not to shine.
How can you not wonder in the back of your mind if you’re losing ground?
I came home and sulked for about two days. I felt incredibly tired from the wedding and the NIH trip, and to be honest, I felt depressed.
Today has been much better.
The truth is it is what it is. I’m not going to know if this is a blip, or a big problem, for four more months. I can either waste that time fretting and sulking, or I can continue to do the things that are important to me now. Today that’s working. Not sure if it will still work tomorrow.
Either way it would be a shame to just be miserable for the next four months worrying.
When I got home from the NIH I had another stack of forms waiting for me from the long-term disability people. Most are questions I’ve now answered over and over. I need the money badly, and I need it soon – but I must confess, I didn’t work on them today. I just wasn’t up to another day of documenting everything I can’t do and everything that’s wrong with me. I needed a day where I felt productive. I needed a day to climb out of this funk and start to feel better.
So, this morning I met for the first time with voc. Rehabilitation for the Blind to do the intake. While I had to hash out all the reasons I’m no longer working, at least I got to talk about all the things I can do, which was so nice for a change. We actually talked about plans for the future. The counselor seemed okay with my vocational goal to do non-profit management from home.
I swear, if you didn’t have a problem with depression before you start the process of applying for disability, you’ll suffer from it afterwards – groan. I understand why they have to be the way they have to be, I just get sick of it after a while.
After our meeting I worked on HPS outreach all day. It made me feel like I was getting something done – like I was productive and doing something, even if it was ever so small, on the road to the cure. It was the best medicine. Tomorrow I’ll face down those nasty forms again.
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