Well, It happened. I jumped off the cliff, sort of speak. I’ve asked to be placed on short-term disability leave, and given the nature of things at work, I don’t think I’m going back. As usual, I’m being a bit selective about what I blog about in this situation. I’m hoping to come to an agreeable solution for everyone involved and I wouldn’t mind, one day, freelancing for my employer. I’ve covered my industry for 10 years plus and have a lot of contacts.
The whole situation seems surreal. One minute I feel such a great sense of relief that this saga is over. I don’t have to go back. I don’t have to live in fear anymore. I don’t have to work my butt off only to feel as though I’m falling short and not cutting the mustard. I don’t have to worry about how my health issues are affecting my co-workers. It feels like a giant weight has been taken off my shoulders and I can start to heal up a bit – physically and emotionally – and figure out what to do with the rest of my life.
On the other hand, I feel horrible and depressed. I’ve worked really hard to balance my health issues with work and I feel like I’ve failed.
Majoring in journalism, and then working in this field as a legally blind person hasn’t always been easy. I’ve had to have a kind of hunger for it to overcome some of the discrimination I’ve experienced over the years. This is a major career blow at a time when editors by the thousands are being let go.
The really frustrating thing is I always thought that when this day came, it would be because of a major Crohn’s flare-up or a major tank in my pulmonary function tests. I’m so blessed to be doing as well as I am in those areas. Even so, HPS (and then compound that with stress issues) has a way of still creeping into one’s work life, even if you’re doing pretty well.
I think that’s hard for doctors to understand.
For example – the clinical trial. I miss about three weeks of work a year for the trial. Not quite, but just about that. NIH, partly because of their growing work load from HPSland, is trying to shave down the admission times for the trial. The problem is, however, that when you try to cut things close at NIH, often you end up staying longer anyway. Radiology and ophthalmology, for example, are two clinics you can almost bet money will be running late every single time – so you end up missing some other appointment you were supposed to go to and then it has to be rescheduled etc.
In my line of work there are news cycles. If I miss three days, the absolute minimum if everything goes according to plan, it’s almost worse than missing five days. You come back in the middle of the news cycle and the co-workers that are already overwhelmed with trying to fill in for you are relieved to see you back and promptly hand everything back. Suddenly you’ve got to accomplish what is hard to do in a week within two days.
I’ve been working a lot of overtime this past year to try to keep all the balls in the air, but honestly, after an eight-hour day at work it’s hard to be incredibly productive into the evening. My eyes just get tired! That’s why I haven’t finished reading a book for pleasure, or a painting, in over two years.
Another frequent problem for me is the “code browns” (ostomy leaks). If you have one on deadline it makes a big impact on everyone else on the team – even if you’re only out an hour fixing things. An hour on deadline is a problem. I’ve seen ostomy nurses and GI folks in Kansas City and at NIH, and no one seems to be able to fix this problem. They all sort of shake their heads and say, well, that sore doesn’t look so bad – just do so and so and it will go away. But with HPS, it doesn’t always just “go away.” Even a little bit of blood is enough moisture to cause a problem. A nurse might be able to help fix things short term – but no one seems to be able to make these things stop happening. And everyone seems to look at them as one incident. For me, however, they are regular events. You try being in a meeting at work only to suddenly feel poop leaking through your clothes and tell me it isn’t a big deal!
Then there are doctor appointments. I don’t have many, but I do have them. A 15-minute appointment might not seem like a big deal, but when you don’t drive a 15-minute appointment isn’t something you sneak out for on your lunch hour. Getting to and from the appointment using paratransit or taxis can take the better part of the day. So, heaven forbid you develop an issue that involves being sick a few days, and then follow up.
And then there’s the run-of-the-mill health issues everyone has. They aren’t a big deal, but add them to being gone three weeks off the top, and then all of this other stuff, and it adds up. Take my periods, for example. The IUD has been a Godsend and I wish I’d done it sooner. But I didn’t. I tried the pills that didn’t work until things finally got so bad that I’d regularly miss a day or two a month just because of the excessive bleeding that was so bad I couldn’t leave the house. This problem might be solved, but the damage to my “rep” is already done.
Then there’s the “political capital” we all have in our work places. I feel like the only reason I’ve been able to hang in there as long as I have is because I have a 10-year history with this company. I’m extremely worried about what happens when I try to return to the work force in another job and I don’t have that sort of political capital.
And then there’s the emotional impact of living with HPS. Everyone has different coping techniques and I’m not judging anyone here. But to tell me to just “forget” about trying to fill this drug trial or being involved to my ears sounds like the most ridiculous suggestion obviously made by someone who doesn’t get it. If I had a common disorder, I might feel like I could do that. I might feel like I could come and go as my life allowed – I might feel like I could just worry about my own health issues and my own little world.
But, I don’t feel that it’s an unreasonable argument to say that I’m doing as well as I am because I’ve been so involved, and thus have had access to the things I need – both medical and social support systems. I didn’t set out to be in the position that I’m in, but I’m here now and the clock is ticking – for me and for everyone else. That means sometimes being very involved in the lives of very sick people. I consider that an honor. But, hey, it does mean that you’ve got bad days where perhaps your concentration is on something besides work.
Needless to say, the impact that HPS can have on our lives can’t just be summed up by lab reports. There’s a whole greater psycho/social picture that often isn’t appreciated by the medical world – but it’s a day-to-day reality for even relatively healthy HPSers.
The whole situation seems surreal. One minute I feel such a great sense of relief that this saga is over. I don’t have to go back. I don’t have to live in fear anymore. I don’t have to work my butt off only to feel as though I’m falling short and not cutting the mustard. I don’t have to worry about how my health issues are affecting my co-workers. It feels like a giant weight has been taken off my shoulders and I can start to heal up a bit – physically and emotionally – and figure out what to do with the rest of my life.
On the other hand, I feel horrible and depressed. I’ve worked really hard to balance my health issues with work and I feel like I’ve failed.
Majoring in journalism, and then working in this field as a legally blind person hasn’t always been easy. I’ve had to have a kind of hunger for it to overcome some of the discrimination I’ve experienced over the years. This is a major career blow at a time when editors by the thousands are being let go.
The really frustrating thing is I always thought that when this day came, it would be because of a major Crohn’s flare-up or a major tank in my pulmonary function tests. I’m so blessed to be doing as well as I am in those areas. Even so, HPS (and then compound that with stress issues) has a way of still creeping into one’s work life, even if you’re doing pretty well.
I think that’s hard for doctors to understand.
For example – the clinical trial. I miss about three weeks of work a year for the trial. Not quite, but just about that. NIH, partly because of their growing work load from HPSland, is trying to shave down the admission times for the trial. The problem is, however, that when you try to cut things close at NIH, often you end up staying longer anyway. Radiology and ophthalmology, for example, are two clinics you can almost bet money will be running late every single time – so you end up missing some other appointment you were supposed to go to and then it has to be rescheduled etc.
In my line of work there are news cycles. If I miss three days, the absolute minimum if everything goes according to plan, it’s almost worse than missing five days. You come back in the middle of the news cycle and the co-workers that are already overwhelmed with trying to fill in for you are relieved to see you back and promptly hand everything back. Suddenly you’ve got to accomplish what is hard to do in a week within two days.
I’ve been working a lot of overtime this past year to try to keep all the balls in the air, but honestly, after an eight-hour day at work it’s hard to be incredibly productive into the evening. My eyes just get tired! That’s why I haven’t finished reading a book for pleasure, or a painting, in over two years.
Another frequent problem for me is the “code browns” (ostomy leaks). If you have one on deadline it makes a big impact on everyone else on the team – even if you’re only out an hour fixing things. An hour on deadline is a problem. I’ve seen ostomy nurses and GI folks in Kansas City and at NIH, and no one seems to be able to fix this problem. They all sort of shake their heads and say, well, that sore doesn’t look so bad – just do so and so and it will go away. But with HPS, it doesn’t always just “go away.” Even a little bit of blood is enough moisture to cause a problem. A nurse might be able to help fix things short term – but no one seems to be able to make these things stop happening. And everyone seems to look at them as one incident. For me, however, they are regular events. You try being in a meeting at work only to suddenly feel poop leaking through your clothes and tell me it isn’t a big deal!
Then there are doctor appointments. I don’t have many, but I do have them. A 15-minute appointment might not seem like a big deal, but when you don’t drive a 15-minute appointment isn’t something you sneak out for on your lunch hour. Getting to and from the appointment using paratransit or taxis can take the better part of the day. So, heaven forbid you develop an issue that involves being sick a few days, and then follow up.
And then there’s the run-of-the-mill health issues everyone has. They aren’t a big deal, but add them to being gone three weeks off the top, and then all of this other stuff, and it adds up. Take my periods, for example. The IUD has been a Godsend and I wish I’d done it sooner. But I didn’t. I tried the pills that didn’t work until things finally got so bad that I’d regularly miss a day or two a month just because of the excessive bleeding that was so bad I couldn’t leave the house. This problem might be solved, but the damage to my “rep” is already done.
Then there’s the “political capital” we all have in our work places. I feel like the only reason I’ve been able to hang in there as long as I have is because I have a 10-year history with this company. I’m extremely worried about what happens when I try to return to the work force in another job and I don’t have that sort of political capital.
And then there’s the emotional impact of living with HPS. Everyone has different coping techniques and I’m not judging anyone here. But to tell me to just “forget” about trying to fill this drug trial or being involved to my ears sounds like the most ridiculous suggestion obviously made by someone who doesn’t get it. If I had a common disorder, I might feel like I could do that. I might feel like I could come and go as my life allowed – I might feel like I could just worry about my own health issues and my own little world.
But, I don’t feel that it’s an unreasonable argument to say that I’m doing as well as I am because I’ve been so involved, and thus have had access to the things I need – both medical and social support systems. I didn’t set out to be in the position that I’m in, but I’m here now and the clock is ticking – for me and for everyone else. That means sometimes being very involved in the lives of very sick people. I consider that an honor. But, hey, it does mean that you’ve got bad days where perhaps your concentration is on something besides work.
Needless to say, the impact that HPS can have on our lives can’t just be summed up by lab reports. There’s a whole greater psycho/social picture that often isn’t appreciated by the medical world – but it’s a day-to-day reality for even relatively healthy HPSers.
Comments
This post gives us "outsiders" just a glimpse of what people with HPS live with day to day.
Very powerful.
I'm sorry you are in the position you are in, but I'm glad you have the gift of the written word that you do.
I wish you peace as you negotiate the challenges ahead.