It’s late. Very late. I don’t think I’ll sleep much tonight. My apartment looks like a laundry mat exploded with various articles of clothing, ranging from pants and shirts, to panty hose and bras, dangling from every hook or piece of furniture.
I’m trying to get ready to go to the American Thoracic Society meeting with Donna Appell, Founder and President of the Hermansky-Pudlak Syndrome Network, to hopefully educate some new doctors about HPS.
Nothing about this trip has gone according to plan. It’s almost 1:00 am and I’m still trying to wrap up things for work (and I don’t think it’s all going to get done.) My laundry is strewn about because we’re not allowed to use the dryers after 10:00 pm in my building. As sure as I put something in the dryer, someone will complain.
After work I had to run to the bank, the dry cleaners, the post office, the drug store – and then by the time I got home after all that walking – I accidentally fell asleep until 9:00 pm. So now I’m hoping that some of these clothes will dry by morning so I can pack them.
This has been another tough HPS week for me. My health has actually been better – cough still hangs on but is better, less joint pain etc. But, several HPSers I stay in touch with have had a variety of medical and personal setbacks and tragedies this week.
On Thursday I got three pieces of bad news about three different HPS friends in the course of about two hours. Thursdays are my worst day of the week at work because our newsletter goes out – and this Thursday was particularly hellish because we kept having server problems. At one point I just felt like exploding. The newsletter would have been enough to send me into orbit, but the absurdity that these people needed me, and that I had to focus on the newsletter really put it over the top.
In our old building, where I had an office with a door instead of a cubicle, I could shut the door for a few minutes, have a good cry, and move on. But now, I’m out in the open with everyone around. The tears started rolling down my face and I forced myself not to make any noise, biting my cheek. I prayed no one would come around the corner to ask me anything in those few moments because as long as I didn’t have to turn around, no one would know I was crying. If they caught me crying, what would I say?
The best thing I can do for these friends is recruit more people for the protocol. While providing a listening ear is helpful, ultimately their best shot is for this protocol to go forward as quickly as possible.
I can’t describe what that feels like – to know that, to know exactly what needs to be done to further that goal, and then to be stuck sitting there, dickering over whether a newsletter goes out and having some boss griping about whether you’ve had time to make 200 copies for her etc…that’s the part that’s hardest for me to cope with. This week it’s been especially hard.
I feel like I’m failing my friends and family. Fighting for a cure is a full-time job, and we’re being slowed down because no one can work full-time to do what it’s going to take.
At least for a few days this week I can work on HPS full time. I can hopefully find some doctors who don’t even yet realize they’ve got HPS patients. I know it isn’t much of a vacation, and that I sorely need a vacation, but in many, many ways just being able to focus on this non-stop for five days will be a stress reliever.
I’m trying to get ready to go to the American Thoracic Society meeting with Donna Appell, Founder and President of the Hermansky-Pudlak Syndrome Network, to hopefully educate some new doctors about HPS.
Nothing about this trip has gone according to plan. It’s almost 1:00 am and I’m still trying to wrap up things for work (and I don’t think it’s all going to get done.) My laundry is strewn about because we’re not allowed to use the dryers after 10:00 pm in my building. As sure as I put something in the dryer, someone will complain.
After work I had to run to the bank, the dry cleaners, the post office, the drug store – and then by the time I got home after all that walking – I accidentally fell asleep until 9:00 pm. So now I’m hoping that some of these clothes will dry by morning so I can pack them.
This has been another tough HPS week for me. My health has actually been better – cough still hangs on but is better, less joint pain etc. But, several HPSers I stay in touch with have had a variety of medical and personal setbacks and tragedies this week.
On Thursday I got three pieces of bad news about three different HPS friends in the course of about two hours. Thursdays are my worst day of the week at work because our newsletter goes out – and this Thursday was particularly hellish because we kept having server problems. At one point I just felt like exploding. The newsletter would have been enough to send me into orbit, but the absurdity that these people needed me, and that I had to focus on the newsletter really put it over the top.
In our old building, where I had an office with a door instead of a cubicle, I could shut the door for a few minutes, have a good cry, and move on. But now, I’m out in the open with everyone around. The tears started rolling down my face and I forced myself not to make any noise, biting my cheek. I prayed no one would come around the corner to ask me anything in those few moments because as long as I didn’t have to turn around, no one would know I was crying. If they caught me crying, what would I say?
The best thing I can do for these friends is recruit more people for the protocol. While providing a listening ear is helpful, ultimately their best shot is for this protocol to go forward as quickly as possible.
I can’t describe what that feels like – to know that, to know exactly what needs to be done to further that goal, and then to be stuck sitting there, dickering over whether a newsletter goes out and having some boss griping about whether you’ve had time to make 200 copies for her etc…that’s the part that’s hardest for me to cope with. This week it’s been especially hard.
I feel like I’m failing my friends and family. Fighting for a cure is a full-time job, and we’re being slowed down because no one can work full-time to do what it’s going to take.
At least for a few days this week I can work on HPS full time. I can hopefully find some doctors who don’t even yet realize they’ve got HPS patients. I know it isn’t much of a vacation, and that I sorely need a vacation, but in many, many ways just being able to focus on this non-stop for five days will be a stress reliever.
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