Blogging is the absolute last thing I should be doing right now. I’ll pay for it this week. But, my joint pain is almost non-existent tonight. I’ve eaten a real meal and while it still might cause the runs, at least it isn’t painfully moving through my system. And, I’m feeling like ranting a bit. I’ve been trying to work on my stories for work, but until I do some ranting, I’m sure I won’t be able to concentrate.
I blog about almost anything related to Hermansky-Pudlak Syndrome on this blog – right down to the color of my poo sometimes. I want to create an honest picture of HPS, and honestly many of us with HPS spend a lot of time on such issues that seem just too personal or irrelevant to an outsider.
But there’s a part of the picture missing. There’s parts that I hesitate to blog about. I don’t mind sharing everything, but those closest to me, and other HPSers, don’t always feel the same way. I often leave out parts of the story trying to protect people, even on days when I don’t think they deserve it.
I also worry about who will be reading the blog on any particular day. Sometimes a new person comes along. Do they really need my emotional baggage on a bad day? These are the things I worry about.
But, I think I need to get over some of these things – to a point. I still want to protect those closest to me and those who have shared confidences with me, but sometimes things happen that are so typical of what it’s like to live with HPS that I feel like I’m being dishonest to the story if I don’t share them.
So, with that in mind, I’m going to delicately share some of what’s on my jumbled mind this evening.
Earlier today I was talking to someone very close to me, someone I love very much. This person asked how I was, and I happily reported my pain level was way down. I made the mistake, however, of venting a very real frustration.
I’m a little frustrated with doctors right now. After being unable to reach mine to beg for an earlier appointment (something before July would be nice), I decided after hemming and hawing about it for these past few months that I really did need to make a change. So, I’ve been on the hunt, looking up doctors and trying to find out something, anything, about them besides just their office hours. I found a few that looked like possible good fits, but I couldn’t get an appointment for weeks.
I’ve been in a lot of pain this past week (although much better now) and so the idea of waiting a month or more to keep the ball rolling on these issues seemed like too much to ask of me. But, there was no sympathy on the other end of the line at most of the offices. I was told if I was really hurting to go to the emergency room. Yeah, a fat lot of good that will do. NIH had already scanned and poked me and done about everything that could be done in an emergency room. I don’t want more pain killers. I want to start working on solving the problem.
So, I vented. I vented that I’d worked so hard to build a good relationship with a doctor, had done what I’m supposed to do, and now when I need help I’m a stranger to everyone. I’ll be starting from the beginning again, “Hermansky-Pudlak Syndrome, Oh, what’s that? How do you spell it?”
The response I got, “Well, maybe your doctor thinks you’re a bit of a hypochondriac. You can be so overly dramatic.”
I firmly addressed it and we moved on in the conversation, but I’ve been just fuming about it all day. It isn’t the first time this person has made such comments. I’m sure it won’t be the last.
For starters, that’s not what’s going on. Since finding this doctor I’ve seen him for two flu shots, one NIH follow up and a case of strep throat. That’s it. I didn’t see him for any of the stuff this winter because I could never get an appointment – hence the problem. I hate going to the doctor. I constantly agonize about whether to go when something is wrong, partly because I can hear that very voice in my head making me feel stupid for feeling bad.
But, the comment hurts. It was like being stabbed in the back. Just when I needed moral support I got ridicule. This person has been invited to participate in my care, to sit down with the world’s experts on HPS and learn about what we’re dealing with – but has consistently declined. Yet, they’re always ready with advice about how I’m supposed to feel and what I should do. Yet, they don’t seem capable of listening or truly understanding the whole picture here.
This evening while cooking some food for the week I watched Ted Koppel’s Discovery Channel special on living with cancer. (I plan more blogging about this later.) It was very good. I could identify with much of what the cancer patients talked about.
There was one part of the documentary where the subject of the film’s doctor was talking to Koppel about the reality of his diagnosis. He said something to the effect of, “This cancer is going to kill Leroy eventually.” Leroy overheard the comment and was upset about it. He was upset because he’d made that transition between getting a life threatening, seemingly hopeless diagnosis, to trying treatments and developing a sincere hope.
Koppel asked both men well after the fact to reflect on the moment. The doctor said he felt horrible about saying it. He felt horrible about how it had upset Leroy. But he said it because he was trying to make a point to the viewing public. He said sometimes he feels like saying to the world. “Don’t you get it? Cancer can kill you.” He was trying to rally support for the cause by being blunt about the consequences.
I don’t want to get into some sort of strange disease, who has it worse competition. But this is a doctor saying this about cancer – a term almost everyone in the general population can recognize as not being a generally good thing, or something you’d never want to have happen to you. Most people might not understand everything about cancer, but upon hearing the word they at least know it’s serious.
The same is not true for those of us with ultra rare disorders. When people hear the words, “Hermansky-Pudlak Syndrome” they don’t have any notion of what that is, how serious it can be etc. When we, as patients, try to explain it, the words are often coming out of a very healthy mouth. And the better we do, the less seriously our supposed support networks take our situation because, after all, we’re “fine.” That doesn’t mean that we’re not coping with serious issues, if not always physically than mentally.
Four years ago I had this life altering experience. I know what it’s like to have some schmuck in a white coat tell you you’re not going to be around as long as you think. I’ve been through a process since that time. I’ve developed new attitudes about life and death. I’ve found hope. I’ve found a possible treatment where I didn’t think I’d ever have one. I’m doing really well now. But, because I’m doing well, it’s as if what I went through four years ago is being held against me. To “their” minds, it didn’t happen. I was just being dramatic.
But the truth is I straddle this HPS world, between extreme hope and optimism, and the constant knowledge that things could change. I know that HPS can be a life and death fight, because I’ve watched my friends die. I might not have the same fate – but these past four years have been such a journey. Trying to stay vigilant about my health care and compliant with NIH’s instructions and suggestions takes work. So, to have someone who has turned away from an up front look at HPS tell me, “Well, maybe they think you’re being a hypochondriac. You can be so dramatic.” I can’t even begin to tell you how angry it makes me.
I’m blogging about it because I know I’m not the only person to have this experience. I know other HPS’ers have been in similar places. I know other people with rare disorders not fortunate enough to have ailments the public recognizes have had similar experiences.
I blog about almost anything related to Hermansky-Pudlak Syndrome on this blog – right down to the color of my poo sometimes. I want to create an honest picture of HPS, and honestly many of us with HPS spend a lot of time on such issues that seem just too personal or irrelevant to an outsider.
But there’s a part of the picture missing. There’s parts that I hesitate to blog about. I don’t mind sharing everything, but those closest to me, and other HPSers, don’t always feel the same way. I often leave out parts of the story trying to protect people, even on days when I don’t think they deserve it.
I also worry about who will be reading the blog on any particular day. Sometimes a new person comes along. Do they really need my emotional baggage on a bad day? These are the things I worry about.
But, I think I need to get over some of these things – to a point. I still want to protect those closest to me and those who have shared confidences with me, but sometimes things happen that are so typical of what it’s like to live with HPS that I feel like I’m being dishonest to the story if I don’t share them.
So, with that in mind, I’m going to delicately share some of what’s on my jumbled mind this evening.
Earlier today I was talking to someone very close to me, someone I love very much. This person asked how I was, and I happily reported my pain level was way down. I made the mistake, however, of venting a very real frustration.
I’m a little frustrated with doctors right now. After being unable to reach mine to beg for an earlier appointment (something before July would be nice), I decided after hemming and hawing about it for these past few months that I really did need to make a change. So, I’ve been on the hunt, looking up doctors and trying to find out something, anything, about them besides just their office hours. I found a few that looked like possible good fits, but I couldn’t get an appointment for weeks.
I’ve been in a lot of pain this past week (although much better now) and so the idea of waiting a month or more to keep the ball rolling on these issues seemed like too much to ask of me. But, there was no sympathy on the other end of the line at most of the offices. I was told if I was really hurting to go to the emergency room. Yeah, a fat lot of good that will do. NIH had already scanned and poked me and done about everything that could be done in an emergency room. I don’t want more pain killers. I want to start working on solving the problem.
So, I vented. I vented that I’d worked so hard to build a good relationship with a doctor, had done what I’m supposed to do, and now when I need help I’m a stranger to everyone. I’ll be starting from the beginning again, “Hermansky-Pudlak Syndrome, Oh, what’s that? How do you spell it?”
The response I got, “Well, maybe your doctor thinks you’re a bit of a hypochondriac. You can be so overly dramatic.”
I firmly addressed it and we moved on in the conversation, but I’ve been just fuming about it all day. It isn’t the first time this person has made such comments. I’m sure it won’t be the last.
For starters, that’s not what’s going on. Since finding this doctor I’ve seen him for two flu shots, one NIH follow up and a case of strep throat. That’s it. I didn’t see him for any of the stuff this winter because I could never get an appointment – hence the problem. I hate going to the doctor. I constantly agonize about whether to go when something is wrong, partly because I can hear that very voice in my head making me feel stupid for feeling bad.
But, the comment hurts. It was like being stabbed in the back. Just when I needed moral support I got ridicule. This person has been invited to participate in my care, to sit down with the world’s experts on HPS and learn about what we’re dealing with – but has consistently declined. Yet, they’re always ready with advice about how I’m supposed to feel and what I should do. Yet, they don’t seem capable of listening or truly understanding the whole picture here.
This evening while cooking some food for the week I watched Ted Koppel’s Discovery Channel special on living with cancer. (I plan more blogging about this later.) It was very good. I could identify with much of what the cancer patients talked about.
There was one part of the documentary where the subject of the film’s doctor was talking to Koppel about the reality of his diagnosis. He said something to the effect of, “This cancer is going to kill Leroy eventually.” Leroy overheard the comment and was upset about it. He was upset because he’d made that transition between getting a life threatening, seemingly hopeless diagnosis, to trying treatments and developing a sincere hope.
Koppel asked both men well after the fact to reflect on the moment. The doctor said he felt horrible about saying it. He felt horrible about how it had upset Leroy. But he said it because he was trying to make a point to the viewing public. He said sometimes he feels like saying to the world. “Don’t you get it? Cancer can kill you.” He was trying to rally support for the cause by being blunt about the consequences.
I don’t want to get into some sort of strange disease, who has it worse competition. But this is a doctor saying this about cancer – a term almost everyone in the general population can recognize as not being a generally good thing, or something you’d never want to have happen to you. Most people might not understand everything about cancer, but upon hearing the word they at least know it’s serious.
The same is not true for those of us with ultra rare disorders. When people hear the words, “Hermansky-Pudlak Syndrome” they don’t have any notion of what that is, how serious it can be etc. When we, as patients, try to explain it, the words are often coming out of a very healthy mouth. And the better we do, the less seriously our supposed support networks take our situation because, after all, we’re “fine.” That doesn’t mean that we’re not coping with serious issues, if not always physically than mentally.
Four years ago I had this life altering experience. I know what it’s like to have some schmuck in a white coat tell you you’re not going to be around as long as you think. I’ve been through a process since that time. I’ve developed new attitudes about life and death. I’ve found hope. I’ve found a possible treatment where I didn’t think I’d ever have one. I’m doing really well now. But, because I’m doing well, it’s as if what I went through four years ago is being held against me. To “their” minds, it didn’t happen. I was just being dramatic.
But the truth is I straddle this HPS world, between extreme hope and optimism, and the constant knowledge that things could change. I know that HPS can be a life and death fight, because I’ve watched my friends die. I might not have the same fate – but these past four years have been such a journey. Trying to stay vigilant about my health care and compliant with NIH’s instructions and suggestions takes work. So, to have someone who has turned away from an up front look at HPS tell me, “Well, maybe they think you’re being a hypochondriac. You can be so dramatic.” I can’t even begin to tell you how angry it makes me.
I’m blogging about it because I know I’m not the only person to have this experience. I know other HPS’ers have been in similar places. I know other people with rare disorders not fortunate enough to have ailments the public recognizes have had similar experiences.
Comments