I feel like one of those bobble toys where the head spins around and then pops off.
My phone was ringing with Hermansky-Pudlak Syndrome calls before I even got out of the shower this morning. Frankly, that was the highlight of my day. I love working on HPS things, even on the days when the calls are tough and emotional. And today there have been some tough and emotional things going on in HPSland. I feel like it’s what I’m supposed to be doing.
But that doesn’t pay my bills. Work pays the bills, and work is a big stress pit right now. I can’t get into all the reasons why, but the fact that my boss is on maternity leave and our editorial assistant, while eager and smart, is a bit wet behind the ears, isn’t helping. It really would have been ideal if we’d been able to hire him well before my boss left for her leave. He needs to be trained, and I’m doing a lousy job of training him because I can barely keep my head above water.
Our publisher is running the ship while our editor-in-chief is away. Sometimes it’s hard to draw the line between all the great things we could do that would make the magazine even better, and what we can realistically accomplish with our given resources. She lives in the land of the former, and I live in the land of the ladder.
Then factor in things like my wonky body. Hey, guess what – I get tired. I especially get tired when I’m taking home work every night. And when I get tired, my nystagmus is a mess. And when my nystagmus is a mess, it’s really hard to edit things because your eyes don’t want to stay still long enough to focus on a line of text.
I’m in the process of rewriting my feature. I’d written it as assigned, but then it was decided it would be even better if done a different way. And it will be better – and I’d like it to be better – but it’s not the only thing I have to get done, and get done NOW! Personally, it’s not the priority I would have made.
Tonight I took home some articles to edit. One came in from a freelancer, and it’s just not what I was looking for at all. It needs a lot of work. I’m tired and I can’t focus on the words. I don’t have time to give it back to the writer to rework. It’s part of a supplement and it has to go to the printer ahead of the magazine. It needs to be done NOW!
I have a bunch of other stuff I need to edit to keep our editorial assistant moving forward, but I haven’t had time because of the two projects mentioned above. And it needs to be done NOW!
Oh, and then there’s the other five articles I’m supposed to have done this week. And they need to be done NOW!
Oh, and then because I’m an idiot, I took on a freelance story this week. Why, you ask? Because I need the money. Those dizzy spells last week cost me about $70. It wasn’t in my budget. I need to make it back.
When I left work today I felt like a wind up toy ready to burst. I felt so stressed out and overwhelmed. And then as I sat on the bus home, I felt down right pissed off. (Excuse the language, but mad or angry don’t quite cover it.)
I’m doing the best I can. I can only edit one thing at a time. No one is going to die if I finish my feature tomorrow or the next day. These work issues are not life or death. One thing HPS teaches you is what having a real problem means. Why am I pushed to the limits for something so trivial? If I’m going to be this stressed out over work, there should be a real sense of mission about it. This level of stress should be reserved for things that really matter – not unrealistic goals or profits or personalities. And yet, it’s now late at night and I feel like my body is still racing.
I’m trying really hard to get it all done and not complain because I need a favor, and I dare not ask until the issue is in better shape.
In October there’s going to be a conference of genetics counselors in Kansas City – yep, right on my back doorstep. Another item on my list that needs to be done NOW! is an application to go representing a patient advocacy group. I have GOT to make that happen, but it will mean missing two days of work. I also need to miss a day of work in November for the HPS board meeting, and then there’s the last NIH trip of the year. I’ve now used all of my vacation, sick and personal days. I’m well into FMLA territory. I’m skating on grace until the end of the year.
The genetics conference is important, however. Most parents of children with albinism end up visiting a genetics counselor at some stage. So often it seems a guestimation of the type of albinism is made based on physical appearance and the family is sent merrily on their way with their diagnosis. Rarely is a mention ever made of HPS, to be on the lookout for bruises or nose bleeds etc. What if children with albinism were screened for HPS as a matter of course? What would it take to make that happen? What are the pros and cons? Too often children with HPS, or adults for that matter, aren’t on the HPS radar until something bad happens. Surely it doesn’t have to be that way.
My “style” if you will, when dealing with a new group, a new segment of outreach etc. is to sit back and observe and figure out who is who, and what is what. I’m not hoping to attend this conference and change the world. I’m hoping to maybe learn a little more about this segment of the medical world, better appreciate how they work and what they do, and hopefully make a few contacts or allies that can help us figure out how to get children diagnosed early.
Everyone please forgive me for being slow to respond to e-mails. We’ve got a couple of fundraiser ideas and I need to e-mail some of you back about those projects. But, it isn’t falling into the NOW! category just yet.
My phone was ringing with Hermansky-Pudlak Syndrome calls before I even got out of the shower this morning. Frankly, that was the highlight of my day. I love working on HPS things, even on the days when the calls are tough and emotional. And today there have been some tough and emotional things going on in HPSland. I feel like it’s what I’m supposed to be doing.
But that doesn’t pay my bills. Work pays the bills, and work is a big stress pit right now. I can’t get into all the reasons why, but the fact that my boss is on maternity leave and our editorial assistant, while eager and smart, is a bit wet behind the ears, isn’t helping. It really would have been ideal if we’d been able to hire him well before my boss left for her leave. He needs to be trained, and I’m doing a lousy job of training him because I can barely keep my head above water.
Our publisher is running the ship while our editor-in-chief is away. Sometimes it’s hard to draw the line between all the great things we could do that would make the magazine even better, and what we can realistically accomplish with our given resources. She lives in the land of the former, and I live in the land of the ladder.
Then factor in things like my wonky body. Hey, guess what – I get tired. I especially get tired when I’m taking home work every night. And when I get tired, my nystagmus is a mess. And when my nystagmus is a mess, it’s really hard to edit things because your eyes don’t want to stay still long enough to focus on a line of text.
I’m in the process of rewriting my feature. I’d written it as assigned, but then it was decided it would be even better if done a different way. And it will be better – and I’d like it to be better – but it’s not the only thing I have to get done, and get done NOW! Personally, it’s not the priority I would have made.
Tonight I took home some articles to edit. One came in from a freelancer, and it’s just not what I was looking for at all. It needs a lot of work. I’m tired and I can’t focus on the words. I don’t have time to give it back to the writer to rework. It’s part of a supplement and it has to go to the printer ahead of the magazine. It needs to be done NOW!
I have a bunch of other stuff I need to edit to keep our editorial assistant moving forward, but I haven’t had time because of the two projects mentioned above. And it needs to be done NOW!
Oh, and then there’s the other five articles I’m supposed to have done this week. And they need to be done NOW!
Oh, and then because I’m an idiot, I took on a freelance story this week. Why, you ask? Because I need the money. Those dizzy spells last week cost me about $70. It wasn’t in my budget. I need to make it back.
When I left work today I felt like a wind up toy ready to burst. I felt so stressed out and overwhelmed. And then as I sat on the bus home, I felt down right pissed off. (Excuse the language, but mad or angry don’t quite cover it.)
I’m doing the best I can. I can only edit one thing at a time. No one is going to die if I finish my feature tomorrow or the next day. These work issues are not life or death. One thing HPS teaches you is what having a real problem means. Why am I pushed to the limits for something so trivial? If I’m going to be this stressed out over work, there should be a real sense of mission about it. This level of stress should be reserved for things that really matter – not unrealistic goals or profits or personalities. And yet, it’s now late at night and I feel like my body is still racing.
I’m trying really hard to get it all done and not complain because I need a favor, and I dare not ask until the issue is in better shape.
In October there’s going to be a conference of genetics counselors in Kansas City – yep, right on my back doorstep. Another item on my list that needs to be done NOW! is an application to go representing a patient advocacy group. I have GOT to make that happen, but it will mean missing two days of work. I also need to miss a day of work in November for the HPS board meeting, and then there’s the last NIH trip of the year. I’ve now used all of my vacation, sick and personal days. I’m well into FMLA territory. I’m skating on grace until the end of the year.
The genetics conference is important, however. Most parents of children with albinism end up visiting a genetics counselor at some stage. So often it seems a guestimation of the type of albinism is made based on physical appearance and the family is sent merrily on their way with their diagnosis. Rarely is a mention ever made of HPS, to be on the lookout for bruises or nose bleeds etc. What if children with albinism were screened for HPS as a matter of course? What would it take to make that happen? What are the pros and cons? Too often children with HPS, or adults for that matter, aren’t on the HPS radar until something bad happens. Surely it doesn’t have to be that way.
My “style” if you will, when dealing with a new group, a new segment of outreach etc. is to sit back and observe and figure out who is who, and what is what. I’m not hoping to attend this conference and change the world. I’m hoping to maybe learn a little more about this segment of the medical world, better appreciate how they work and what they do, and hopefully make a few contacts or allies that can help us figure out how to get children diagnosed early.
Everyone please forgive me for being slow to respond to e-mails. We’ve got a couple of fundraiser ideas and I need to e-mail some of you back about those projects. But, it isn’t falling into the NOW! category just yet.
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