I feel great. I mean I really feel great.
My joints don’t hurt. I’ve been sleeping well. My back pain is gone, provided I drink about 12 to 15 bottles of water a day. My stomach doesn’t hurt. Nothing is bleeding.
The only abnormality to my overall general health today is my frequent need to go to the bathroom because of all the water I’m drinking in hopes of keeping what seems to be kidney pain at bay.
I feel like I could take on the world. The problem is I actually tried to do it.
When I have days like this when I feel truly good all day free from fatigue or any of the other subtle maladies that seem to frequent my life, I feel as though I must do every single thing on my list of things to do all at once.
It’s a precious day and I can’t waste a single minute of it.
The result, however, is that I struggle to really get anything done. I’m like a nat flittering around in circles unable to land in one place. Nothing can wait. It must be done now.
I strode into work today with what seemed like a reasonable list of things to do. I needed to send out a survey to collect data for a feature I’m writing for the March issue. I needed to finish my boss’s podcast script. I needed to light a fire under the city that’s purchased an advertorial in our March issue and get them to decide exactly what they want and whether they want me to write it for them, or farm it out to one of their own writers. I needed to find, report and write a news story for our daily news on the Web site. I needed to make a list of subjects for a department I’m responsible for that would cover the next six months so the sales staff would have it.
And, I needed to cure Hermansky-Pudlak Syndrome. Okay, I didn’t expect to cure it, but my list of HPS goals and ambitions is as long as my work list of things to do. The only problem is I have to do the “real world” things first. Yet I feel good today, full of energy, and I can’t waste it. The HPS work is too important to be second best in my life.
So, between reporting, writing scripts, and making phone calls I was trying to accomplish a snippet of other things. During lunch I spoke Elsie, a fellow HPS’er, who organizes for us in Florida. She’s trying to put together a Florida contingent for the conference and we needed to pow-wow about who she’d heard back from and what they needed.
Elsie’s brother passed away from HPS two years ago. She’s trying to obtain her brother’s medical records for HPS researchers to study, but the task is proving difficult and Elsie updated me on the most recent installment of the saga.
I talked to Donna to update her on some of the things I’d finished and learned we’ve got about 20 people coming from Puerto Rico. It’s great news. It’s fantastic news. It’s progress to the cure – but man is it expensive. The cost of flights, hotel rooms etc. started to mount in my head.
Money. We need money. And we need it now.
Grants we’ve applied for and haven’t received began to flow through my head. We need to try again. We need to take what we’ve learned from failure and maximize it. Fundraiser ideas sort of flew between my ears all afternoon as I worked like paper airplanes being lobbed across a room. Should I stop and write them down – no time. Deadlines.
Tonight I’m in the midst of ridiculous writers block. I’m in the process of writing invitations to people who currently have nothing to do with the HPS world, but whom we’d love to draw in, hoping to gain their wisdom or connections to further our cause.
It’s a simple one-page letter – the sort of thing that normally I could dash off in minutes. Yet, I know that with several of these I’ve got one shot. It has to be perfect. It has to grab them and suck them in and make them want to meet us. Everything I write sounds bla, boring or just sappy.
What I want to say is HELP ME! HELP US! PLEASE! We’re dangling over a dangerous ledge and there are so many people in the world that could help pull us to safety, if only they could hear us. If only they understood.
One of my HPS friends has “gone missing” in recent weeks. I tried to send e-mail and call, but the e-mails are bouncing and the number is no longer working. I needed to go on the hunt for him. In the back of my mind I fear he’s passed away, yet I thought someone might have called Donna or I if that had happened. Suddenly I can’t stop thinking about him. I need to know, yet I might never find out. Like others, he might just fade away never to be heard from again because the non-HPS’ers in his life probably don’t realize we knew each other or that we’d want to know.
Now the day is over and I need to go to bed. There’s so much from the day left undone and my mind is still swimming. Conference is coming like a freight train. I keep thinking of things we need to be doing and it frustrates me that I can’t be in Oyster Bay to help Donna.
Trying to quiet my mind, I gave up on the letters and sat down to drink a cup of tea. Calm. I need calm. On PBS there was a documentary about Annie Leibovitz. If you don’t know her, she’s a very famous photographer. She’s shot for Rolling Stone, Vanity Fair, Vogue etc. My mind raced again.
She’s going to be speaking in Kansas City Friday night. The tickets aren’t cheap. The cab fare wouldn’t be cheap either. Looking at her photos as they told her story got my creative juices flowing. Even though many of the photos were posed she still managed to capture something in them. Each one told a story.
A story. We need to tell our story. What I wouldn’t give to have a few minutes to pick the brain of such a master about how we could tell our HPS story better. Would she even talk to a wannabe casual photographer with a long white cane? I started thinking about the way she conceptualizes the shots. Wow – wish we could do more of that on our covers. To have such a budget!
I started thinking of people I know well enough to get them to pose. What I could do at conference that would create some good pictures to tell our story? (Like I’ve got time for that!) Rick, our photographer friend, is so much better at this than I am. But I need photos I can pull and use in an instant whenever I need them.
It’s time for bed. I must make my brain shut up. I just don’t feel finished with the day just yet. Time to take my pills.
My joints don’t hurt. I’ve been sleeping well. My back pain is gone, provided I drink about 12 to 15 bottles of water a day. My stomach doesn’t hurt. Nothing is bleeding.
The only abnormality to my overall general health today is my frequent need to go to the bathroom because of all the water I’m drinking in hopes of keeping what seems to be kidney pain at bay.
I feel like I could take on the world. The problem is I actually tried to do it.
When I have days like this when I feel truly good all day free from fatigue or any of the other subtle maladies that seem to frequent my life, I feel as though I must do every single thing on my list of things to do all at once.
It’s a precious day and I can’t waste a single minute of it.
The result, however, is that I struggle to really get anything done. I’m like a nat flittering around in circles unable to land in one place. Nothing can wait. It must be done now.
I strode into work today with what seemed like a reasonable list of things to do. I needed to send out a survey to collect data for a feature I’m writing for the March issue. I needed to finish my boss’s podcast script. I needed to light a fire under the city that’s purchased an advertorial in our March issue and get them to decide exactly what they want and whether they want me to write it for them, or farm it out to one of their own writers. I needed to find, report and write a news story for our daily news on the Web site. I needed to make a list of subjects for a department I’m responsible for that would cover the next six months so the sales staff would have it.
And, I needed to cure Hermansky-Pudlak Syndrome. Okay, I didn’t expect to cure it, but my list of HPS goals and ambitions is as long as my work list of things to do. The only problem is I have to do the “real world” things first. Yet I feel good today, full of energy, and I can’t waste it. The HPS work is too important to be second best in my life.
So, between reporting, writing scripts, and making phone calls I was trying to accomplish a snippet of other things. During lunch I spoke Elsie, a fellow HPS’er, who organizes for us in Florida. She’s trying to put together a Florida contingent for the conference and we needed to pow-wow about who she’d heard back from and what they needed.
Elsie’s brother passed away from HPS two years ago. She’s trying to obtain her brother’s medical records for HPS researchers to study, but the task is proving difficult and Elsie updated me on the most recent installment of the saga.
I talked to Donna to update her on some of the things I’d finished and learned we’ve got about 20 people coming from Puerto Rico. It’s great news. It’s fantastic news. It’s progress to the cure – but man is it expensive. The cost of flights, hotel rooms etc. started to mount in my head.
Money. We need money. And we need it now.
Grants we’ve applied for and haven’t received began to flow through my head. We need to try again. We need to take what we’ve learned from failure and maximize it. Fundraiser ideas sort of flew between my ears all afternoon as I worked like paper airplanes being lobbed across a room. Should I stop and write them down – no time. Deadlines.
Tonight I’m in the midst of ridiculous writers block. I’m in the process of writing invitations to people who currently have nothing to do with the HPS world, but whom we’d love to draw in, hoping to gain their wisdom or connections to further our cause.
It’s a simple one-page letter – the sort of thing that normally I could dash off in minutes. Yet, I know that with several of these I’ve got one shot. It has to be perfect. It has to grab them and suck them in and make them want to meet us. Everything I write sounds bla, boring or just sappy.
What I want to say is HELP ME! HELP US! PLEASE! We’re dangling over a dangerous ledge and there are so many people in the world that could help pull us to safety, if only they could hear us. If only they understood.
One of my HPS friends has “gone missing” in recent weeks. I tried to send e-mail and call, but the e-mails are bouncing and the number is no longer working. I needed to go on the hunt for him. In the back of my mind I fear he’s passed away, yet I thought someone might have called Donna or I if that had happened. Suddenly I can’t stop thinking about him. I need to know, yet I might never find out. Like others, he might just fade away never to be heard from again because the non-HPS’ers in his life probably don’t realize we knew each other or that we’d want to know.
Now the day is over and I need to go to bed. There’s so much from the day left undone and my mind is still swimming. Conference is coming like a freight train. I keep thinking of things we need to be doing and it frustrates me that I can’t be in Oyster Bay to help Donna.
Trying to quiet my mind, I gave up on the letters and sat down to drink a cup of tea. Calm. I need calm. On PBS there was a documentary about Annie Leibovitz. If you don’t know her, she’s a very famous photographer. She’s shot for Rolling Stone, Vanity Fair, Vogue etc. My mind raced again.
She’s going to be speaking in Kansas City Friday night. The tickets aren’t cheap. The cab fare wouldn’t be cheap either. Looking at her photos as they told her story got my creative juices flowing. Even though many of the photos were posed she still managed to capture something in them. Each one told a story.
A story. We need to tell our story. What I wouldn’t give to have a few minutes to pick the brain of such a master about how we could tell our HPS story better. Would she even talk to a wannabe casual photographer with a long white cane? I started thinking about the way she conceptualizes the shots. Wow – wish we could do more of that on our covers. To have such a budget!
I started thinking of people I know well enough to get them to pose. What I could do at conference that would create some good pictures to tell our story? (Like I’ve got time for that!) Rick, our photographer friend, is so much better at this than I am. But I need photos I can pull and use in an instant whenever I need them.
It’s time for bed. I must make my brain shut up. I just don’t feel finished with the day just yet. Time to take my pills.
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Love Candice & Crystal