I’m not having a good day. There are times when I find myself in a funk, and this is one of those times. It isn’t even always related to what’s going on in my life. Perhaps it’s a chemical thing, or maybe when things are bad all my energies go to holding the world together, so when not much is going on, all the emotions that I have to hold back in the heat of a crisis come leaking out.
Today my mom called. She’s been moving from one part of Germany to another, and was going on and on about how beautiful and quant her new surroundings are and how I should come over some time and visit her. I haven’t been back to Germany in years. Soon she’ll be retiring and my chance will be gone.
“I don’t think I can come,” I said. There was a sigh from the other end of the phone. “For starters, I can’t afford it, and I can’t see ever having enough days off from work to make the trip.” I’d have to take two days for getting there and back alone.
“I was just suggesting it,” she said. I could tell from her tone she was mildly irritated. I felt an overwhelming sense of frustration and I worked hard to suppress it in hopes of avoiding an argument. My poor mom was in a no win situation. She was trying to be nice, and I was in a mood. The suggestion of coming to Germany, something I want to do with all my heart but can’t, only made it worse.
It isn’t because I’m too sick to travel. In college I traveled internationally, sometimes when I was so sick I was afraid I’d pass out in the airport. I did it anyway.
It’s partly the money.
I’m just now recovering from a financial mess created by mounting medical bills a few years ago. I’m finally able to put away a few dollars, not much, every month. To spend $1,000 on an airline ticket would completely wipe out any progress I’ve made. And, of course, it always costs more than the ticket to travel. Then there are all the expenses I can’t avoid forever, but have put off for several years now. Things like replacing my kitchen table chairs. At any moment they are going to completely fall apart, but I’ve put off buying new ones. I need new pots and pans etc. The cheap ones I bought in college, and am still using, look like hell.
A lot of it has to do with a lack of time off. I’m always terrified of using my days off for fear something will happen and I’ll need them to be sick or to go to the National Institutes of Health. That's just part of the reality of living with Hermansky-Pudlak Syndrome, if you're experiencing any complications. I miss sometimes a half a day or more of work just going to a regular doctor’s appointment – and there are times when I have to do that every few weeks. (Thank God this spring hasn’t been one of them.) What if I get into the drug trial and have to travel four times a year to NIH? There goes almost four weeks a year, including travel time, and that’s before I’ve had a single cold or done anything for the HPS Network, or had even a holiday off.
This is a tough issue because I don’t think family understands. My mom lives in Germany. My dad lives in Colorado Springs. My maternal grandmother lives in Wichita and my paternal grandmother lives in Delaware. My brother lives in Washington. And, we’re not even getting into my aunts, or visiting friends from college etc. Everyone wants me to visit, and everyone seems to get their feelings hurt when I don’t come, or go to see another part of the family etc.
I’ve used quite a bit of my vacation time to do things for the HPS Network – and sometimes I wonder if family resents that. Again, I think it’s something they don’t always understand. Having a rare disease means treatment doesn’t just consist of going to the doctor. You’ve got to advocate for the research funding. You’ve got to push the drug company. You’ve got to work the politics to get the resources to keep things moving forward. You’ve got to network with the other patients. You’ve got to recruit people for the trials yourselves. You’ve got to read the medical journal articles to know what might help, and where to move next. There is no staff to do it. All that is just as much of my treatment as going to a doctor’s appointment. If I don’t do it, I might as well sit around and wait to die. I just don’t have the personality for that. I can’t cope if I don’t do something, or at least know it’s getting done.
Donna Appell asked me last week if I’d go to the Genetic Alliance meeting at the end of July. I think I can do it and only burn one vacation day.
“I’m worried about using all your days,” she said. “You need a vacation too.”
No doubt, but right now I’m so worried about the trial recruitment and several other things that I couldn’t relax if I did have a vacation. I can’t afford to go anywhere anyway. And, when the odd occasion arises that I do get a few days off, I invariably get depressed for at least part of them.
What I need is several months off just do deal with the psychological crap I’ve been through these past few years. But, that isn’t going to happen. So, having a few days off would probably only serve to open the Pandora’s box, yet not really give me enough time to process or do much about any of it. I’d be better off working on the cure than sitting around trying to relax.
This past week all my co-workers were sitting around comparing notes about what they plan to do for their vacations. I did feel angry and frustrated. Not at them, but just at this wacky reality that is my life.
Today my mom called. She’s been moving from one part of Germany to another, and was going on and on about how beautiful and quant her new surroundings are and how I should come over some time and visit her. I haven’t been back to Germany in years. Soon she’ll be retiring and my chance will be gone.
“I don’t think I can come,” I said. There was a sigh from the other end of the phone. “For starters, I can’t afford it, and I can’t see ever having enough days off from work to make the trip.” I’d have to take two days for getting there and back alone.
“I was just suggesting it,” she said. I could tell from her tone she was mildly irritated. I felt an overwhelming sense of frustration and I worked hard to suppress it in hopes of avoiding an argument. My poor mom was in a no win situation. She was trying to be nice, and I was in a mood. The suggestion of coming to Germany, something I want to do with all my heart but can’t, only made it worse.
It isn’t because I’m too sick to travel. In college I traveled internationally, sometimes when I was so sick I was afraid I’d pass out in the airport. I did it anyway.
It’s partly the money.
I’m just now recovering from a financial mess created by mounting medical bills a few years ago. I’m finally able to put away a few dollars, not much, every month. To spend $1,000 on an airline ticket would completely wipe out any progress I’ve made. And, of course, it always costs more than the ticket to travel. Then there are all the expenses I can’t avoid forever, but have put off for several years now. Things like replacing my kitchen table chairs. At any moment they are going to completely fall apart, but I’ve put off buying new ones. I need new pots and pans etc. The cheap ones I bought in college, and am still using, look like hell.
A lot of it has to do with a lack of time off. I’m always terrified of using my days off for fear something will happen and I’ll need them to be sick or to go to the National Institutes of Health. That's just part of the reality of living with Hermansky-Pudlak Syndrome, if you're experiencing any complications. I miss sometimes a half a day or more of work just going to a regular doctor’s appointment – and there are times when I have to do that every few weeks. (Thank God this spring hasn’t been one of them.) What if I get into the drug trial and have to travel four times a year to NIH? There goes almost four weeks a year, including travel time, and that’s before I’ve had a single cold or done anything for the HPS Network, or had even a holiday off.
This is a tough issue because I don’t think family understands. My mom lives in Germany. My dad lives in Colorado Springs. My maternal grandmother lives in Wichita and my paternal grandmother lives in Delaware. My brother lives in Washington. And, we’re not even getting into my aunts, or visiting friends from college etc. Everyone wants me to visit, and everyone seems to get their feelings hurt when I don’t come, or go to see another part of the family etc.
I’ve used quite a bit of my vacation time to do things for the HPS Network – and sometimes I wonder if family resents that. Again, I think it’s something they don’t always understand. Having a rare disease means treatment doesn’t just consist of going to the doctor. You’ve got to advocate for the research funding. You’ve got to push the drug company. You’ve got to work the politics to get the resources to keep things moving forward. You’ve got to network with the other patients. You’ve got to recruit people for the trials yourselves. You’ve got to read the medical journal articles to know what might help, and where to move next. There is no staff to do it. All that is just as much of my treatment as going to a doctor’s appointment. If I don’t do it, I might as well sit around and wait to die. I just don’t have the personality for that. I can’t cope if I don’t do something, or at least know it’s getting done.
Donna Appell asked me last week if I’d go to the Genetic Alliance meeting at the end of July. I think I can do it and only burn one vacation day.
“I’m worried about using all your days,” she said. “You need a vacation too.”
No doubt, but right now I’m so worried about the trial recruitment and several other things that I couldn’t relax if I did have a vacation. I can’t afford to go anywhere anyway. And, when the odd occasion arises that I do get a few days off, I invariably get depressed for at least part of them.
What I need is several months off just do deal with the psychological crap I’ve been through these past few years. But, that isn’t going to happen. So, having a few days off would probably only serve to open the Pandora’s box, yet not really give me enough time to process or do much about any of it. I’d be better off working on the cure than sitting around trying to relax.
This past week all my co-workers were sitting around comparing notes about what they plan to do for their vacations. I did feel angry and frustrated. Not at them, but just at this wacky reality that is my life.
Comments