The major reason I've been making sure to keep health updates on this blog, even though they are largely cranky and no fun to read, is that those people who are diagnosed with any form of interstitial lung disease hear the same questions over and over again, and I want others in the same boat to see my journey, and know YOU ARE NOT ALONE. So here are the questions I get, and the answers:
#1. What did you do to cause this?
Unlike lung cancer, emphysema, and the rest, people with the forms of interstitial lung disease mine falls into are usually attacked by their bodies randomly, without having anything to do with lifestyle choices. While it works almost opposite of cancer, you can think of it in similar terms to those sorts of cancers that strike randomly...there may or may not be a genetic component, but if I just go to second cousins, I have only one relative sick with a similar disease out of a hundred people, and I'm negative for the antibodies she's positive for, so while we have a similar disease, it's not the same disease. I am a lifetime non-smoker...of anything. If I had been a smoker, things would be very bad for me.
#2. Will this kill you/is this killing you?
Interstitial lung disease is usually a secondary diagnosis. That is, people usually have something else, and ILD is a complication of whatever they have. This makes data on people with only ILD hard to come by. The mean lifespan post-diagnosis, according to three papers I have read, is seven years, but the median age of onset is 67! We literally have next to no data on people my age developing it...only a small handful of case studies. I was in my 30s when I first got sick with it. Unless I develop pneumonia, I could live 50 more years. If I develop pneumonia, or if the drugs I'm on to keep the ILD from killing me give me cancer, I'm pretty short for this world. I have to be very aggressive to avoid certain germs, which sucks when you're 'outdoorsy.' There is a chance I suddenly get better and it's all gone. Every year it persists, this chance gets smaller. I don't think it's likely. Get your kids immunized, folks, I'm the person in the herd who can't they talk about.
#3. Why don't you go on one of those mystery diagnosis shows?
We know what this is, it's one of a group of diseases in which the body attacks the lungs. It doesn't have a dramatic thing to look at like a tumor or interesting fluids, I just have no energy and can't walk without falling down, and everything hurts. We don't know what causes these things, but the world is not House, and doctors don't care what caused it. Seriously.
#4. Do you consider this a test of your faith?
I've gotten this one by email. No, I do not. I consider it a test of medical science. As a biologist, I'm fascinated by this. Immune systems like mine produce cells that eat tumors, and survive terrible bacterial and viral diseases. The problem is that they have a hard time telling healthy cells from unhealthy cells and also attack stuff that's supposed to be there. If I was of a different faith, and from a different educational background I would feel more scared, but I'm a rare disease-EVERYTHING we try with me is an experimental procedure, every drug that fails to put me into remission gives data for the next person with this disease. That's pretty damn cool. If it does kill me, my body is being donated to science. Seriously. My white blood cells proliferate, when not kept down with immunosuppressives, in a way similar to cancer cells, while being what you might understand as anticancer cells...like matter to antimatter. That's totally fucking cool.
#5. I have heard that you've said if it gets much worse you will end your own life, is this true?
Yes, it's true. I have to walk around in a state of pain pretty much 24/7, with bouts that are 11s on a scale of 1-10. If years go by and my health continues to decline, and the pain gets worse, I will end it myself. Right now, though, every time we try a drug on me, it might save someone's life. I have a hell of a body, otherwise, strong heart, strong liver, iron stomach. We can give me drugs that might kill a 60 year old and see if they help, and if they don't, I usually recover. We can give me high dose steroids that, while painful for me, mentally hellacious, and dangerous, set my lungs back to zero so we can try a new treatment when treatments fail. So far we've had three rounds of different drugs fail. Each round, the drug prices go up.
#6. Blah, blah, blah, gluten.
I've heard every variation on 'this is gluten intolerance' and various other fad intolerances of the day. There are real people with problems with gluten....I am not one. Likewise animal proteins, milk, and all but three plant tissues, one pollen, one mold, one class of drugs, and two dyes (one made from one of those plants.) I have had more allergy tests than most people can imagine, plus 'challenges.' We've ruled that out. I'm also not reacting to any heavy metals, not lead, gold, uranium ...or exposure to radiation.
#7. Blah, blah, blah, medical marijuana.
I'm allergic to hemp and if you like pot, smoke it (not near me, please, and not if you're one of those few people who turn into an asshole when stoned), but please don't equate your desire for escape from what's bugging you (pain, boredom, stress) with medical science. It's not. There is a reason we give people morphine instead of opium, a reason we give people aspirin instead of willow bark. Every additional component in something, whether it's 1000 man-made chemicals in a food or 100 nature-made chemicals in a plant, is a potential reaction. When you're like me, and every single variable you're doing has to be kept track of, the variation in non-standardized drugs of your choice can be a big fucking deal. I don't even drink anymore...we're assaulting my liver constantly.
#8. When is your next book coming out...
I can't sit at a computer for hours on end, or even on the sofa for hours on end, and I've got other shit going on. Also, I'm sleeping about 15 hours a day. So I don't know. I need to focus 100% on my health. It's what bugs me when I wake up, what keeps me up at night, what wakes me from naps and forces me to take them.
#9 Vitamin C, or your immune system 'helper' of choice.
If my immune system were any stronger, it would start eating small children as I walked past. That's the opposite of what I need. Seriously.
#10. Why are you so grumpy?
I am what I am, and I'm also in pain. It doesn't make me grumpy, but it cuts my tolerance for stupidity WAY DOWN. Basically I'm sitting here fighting a war that no one else can see (except when I'm strapped to a special monitor, or by blood tests) and people ask me dumb questions that they could find the answers out themselves. I've got big, huge stuff going on on a journey that no one can walk but me. I've got the perspective to know that you guys aren't on this battlefield with me, so you can't all understand it, so mostly I leave you out, but when I can, I answer questions, and this should stop me from answering these 10 questions for a while.
#1. What did you do to cause this?
Unlike lung cancer, emphysema, and the rest, people with the forms of interstitial lung disease mine falls into are usually attacked by their bodies randomly, without having anything to do with lifestyle choices. While it works almost opposite of cancer, you can think of it in similar terms to those sorts of cancers that strike randomly...there may or may not be a genetic component, but if I just go to second cousins, I have only one relative sick with a similar disease out of a hundred people, and I'm negative for the antibodies she's positive for, so while we have a similar disease, it's not the same disease. I am a lifetime non-smoker...of anything. If I had been a smoker, things would be very bad for me.
#2. Will this kill you/is this killing you?
Interstitial lung disease is usually a secondary diagnosis. That is, people usually have something else, and ILD is a complication of whatever they have. This makes data on people with only ILD hard to come by. The mean lifespan post-diagnosis, according to three papers I have read, is seven years, but the median age of onset is 67! We literally have next to no data on people my age developing it...only a small handful of case studies. I was in my 30s when I first got sick with it. Unless I develop pneumonia, I could live 50 more years. If I develop pneumonia, or if the drugs I'm on to keep the ILD from killing me give me cancer, I'm pretty short for this world. I have to be very aggressive to avoid certain germs, which sucks when you're 'outdoorsy.' There is a chance I suddenly get better and it's all gone. Every year it persists, this chance gets smaller. I don't think it's likely. Get your kids immunized, folks, I'm the person in the herd who can't they talk about.
#3. Why don't you go on one of those mystery diagnosis shows?
We know what this is, it's one of a group of diseases in which the body attacks the lungs. It doesn't have a dramatic thing to look at like a tumor or interesting fluids, I just have no energy and can't walk without falling down, and everything hurts. We don't know what causes these things, but the world is not House, and doctors don't care what caused it. Seriously.
#4. Do you consider this a test of your faith?
I've gotten this one by email. No, I do not. I consider it a test of medical science. As a biologist, I'm fascinated by this. Immune systems like mine produce cells that eat tumors, and survive terrible bacterial and viral diseases. The problem is that they have a hard time telling healthy cells from unhealthy cells and also attack stuff that's supposed to be there. If I was of a different faith, and from a different educational background I would feel more scared, but I'm a rare disease-EVERYTHING we try with me is an experimental procedure, every drug that fails to put me into remission gives data for the next person with this disease. That's pretty damn cool. If it does kill me, my body is being donated to science. Seriously. My white blood cells proliferate, when not kept down with immunosuppressives, in a way similar to cancer cells, while being what you might understand as anticancer cells...like matter to antimatter. That's totally fucking cool.
#5. I have heard that you've said if it gets much worse you will end your own life, is this true?
Yes, it's true. I have to walk around in a state of pain pretty much 24/7, with bouts that are 11s on a scale of 1-10. If years go by and my health continues to decline, and the pain gets worse, I will end it myself. Right now, though, every time we try a drug on me, it might save someone's life. I have a hell of a body, otherwise, strong heart, strong liver, iron stomach. We can give me drugs that might kill a 60 year old and see if they help, and if they don't, I usually recover. We can give me high dose steroids that, while painful for me, mentally hellacious, and dangerous, set my lungs back to zero so we can try a new treatment when treatments fail. So far we've had three rounds of different drugs fail. Each round, the drug prices go up.
#6. Blah, blah, blah, gluten.
I've heard every variation on 'this is gluten intolerance' and various other fad intolerances of the day. There are real people with problems with gluten....I am not one. Likewise animal proteins, milk, and all but three plant tissues, one pollen, one mold, one class of drugs, and two dyes (one made from one of those plants.) I have had more allergy tests than most people can imagine, plus 'challenges.' We've ruled that out. I'm also not reacting to any heavy metals, not lead, gold, uranium ...or exposure to radiation.
#7. Blah, blah, blah, medical marijuana.
I'm allergic to hemp and if you like pot, smoke it (not near me, please, and not if you're one of those few people who turn into an asshole when stoned), but please don't equate your desire for escape from what's bugging you (pain, boredom, stress) with medical science. It's not. There is a reason we give people morphine instead of opium, a reason we give people aspirin instead of willow bark. Every additional component in something, whether it's 1000 man-made chemicals in a food or 100 nature-made chemicals in a plant, is a potential reaction. When you're like me, and every single variable you're doing has to be kept track of, the variation in non-standardized drugs of your choice can be a big fucking deal. I don't even drink anymore...we're assaulting my liver constantly.
#8. When is your next book coming out...
I can't sit at a computer for hours on end, or even on the sofa for hours on end, and I've got other shit going on. Also, I'm sleeping about 15 hours a day. So I don't know. I need to focus 100% on my health. It's what bugs me when I wake up, what keeps me up at night, what wakes me from naps and forces me to take them.
#9 Vitamin C, or your immune system 'helper' of choice.
If my immune system were any stronger, it would start eating small children as I walked past. That's the opposite of what I need. Seriously.
#10. Why are you so grumpy?
I am what I am, and I'm also in pain. It doesn't make me grumpy, but it cuts my tolerance for stupidity WAY DOWN. Basically I'm sitting here fighting a war that no one else can see (except when I'm strapped to a special monitor, or by blood tests) and people ask me dumb questions that they could find the answers out themselves. I've got big, huge stuff going on on a journey that no one can walk but me. I've got the perspective to know that you guys aren't on this battlefield with me, so you can't all understand it, so mostly I leave you out, but when I can, I answer questions, and this should stop me from answering these 10 questions for a while.