If your image (or your chair) is used and you would like to be credited, or if you are offended and need it taken down, I will comply, although the images, music, etc., are here as a work of parody.
Friday, August 31, 2012
Video: Clint Eastwood's Existental Crisis
I will never be the videographer needed to tell the stories in my brain. So, here is my reaction to Clint Eastwood and the chair:
All of the images are from a Clint Eastwood image dump, except for the images of, well, chairs, including one that is apparently called 'the chair.'
If your image (or your chair) is used and you would like to be credited, or if you are offended and need it taken down, I will comply, although the images, music, etc., are here as a work of parody.
If your image (or your chair) is used and you would like to be credited, or if you are offended and need it taken down, I will comply, although the images, music, etc., are here as a work of parody.
Monday, August 20, 2012
Most recent appointment and Health Care Shenanigans
One of the things that people who oppose health care reform like to claim is that healthcare reform will make the government get between you and your doctor...and that private heath insurance somehow protects us from this.
When my second pulmonologist ruled out the cause of my illness that my first pulmonologist was hooked on (he thought it was an allergy to bird dander, we removed the allergen-including our cockatoo dying while was away from his home, which broke my heart) and even later proved conclusively that there was no stimulus outside of my body causing my illness, he wanted to send me to a third pulmonologist, a specialist in the type of disease I have, because he and I could help each other. He could try some of the treatments on me that he can't try at the doses he'd like on the normal sufferers of this-senior citizens. He could try the more radical treatments, with a stronger chance of curing me, but a dramatic chance of bad side effects, because I could probably heal from any of those side effects. Think of it this way...he could be using treatments with a low chance of curing me. Not merely improving my condition, but curing me. Most importantly, he had a relationship with my doctors and their clinic, and could send me home and have my local pulmonologist keep an eye on the day-to-day stuff. The doctor (3 hours drive away) wanted me as a patient, and was prepared to set it up so that I would only have to travel to his office maybe once or twice.
The insurance company vetoed this. They, instead, sent me to a guy who was closer, cheaper, and not quite as good. He is a rare disease guy, and talented, and he's a little more than an hour away. He does not return phone calls for weeks, is slow to share data, and is part of an organization that expects me to arrive at his clinic for every change of prescription...remember, every drug for this condition is an experimental drug with a chance of doing nothing, there is NO standard treatment. The first time we showed up at his office..they didn't know who I was.
I don't drive. It is good that I do not drive, because at this point in time, I'm not sure that driving is safe for me anymore, I'm very dizzy and my eyes blur often. Getting a trip an hour away is as hard as getting a trip 3 hours away for me...getting a ride across town for the pulmonologist who is local is hard. The doctor who the insurance company rejected was prepared to work with my local doctors because anyone can monitor my blood pressure and I can get my blood drawn anywhere...he was willing to do a lot of these things *without being paid* because the research data on my rare disease can save the lives of other patients of his.
After a year of being seen by the rare disease guy that the insurance company allowed, I am considerably sicker, and the insurance company will likely have to pay for me to be hospitalized if my condition does not improve. My condition will not improve unless we begin a new experimental drug, and the doctor the insurance company will pay for is not returning calls from me or my other doctors. If we don't start an experimental drug within the month or so *and* have that drug work, I will be hospitalized.
Every time my health 'bottoms out' so to speak, there is a chance that I could die. I don't say that to be dramatic, since we ruled out all the easy stuff, we realized I have a disease that kills people, but we don't know how long it takes to kill someone without complicating diseases...most of the time people who get this have diabetes, or cancers, or are just really, really old. If I don't have a stroke, get pneumonia, or have a heart attack from the drugs to treat me, and I don't develop an opportunistic infection from the immunosuppressants, I could make it for many more years. But every time I get sick to the point of hospitalization, I'm rolling the dice and I could die.
The usual course of treatment for the exact ILD I have is hospice care, because you see it in unwell 70 year olds...make their last year of life comfortable, and let them move on in peace. We don't recommend hospice for me because it's possible for me to live 20, 30, 50 years longer with this disease...but if I roll a 1 on that d20 of life, I've only got a few months, and every time I bottom out I'm rolling that die...and the more I bottom out, the more likely I have a bad result from it.
So, how is the insurance company, which got between me and my doctor's wishes, not a death panel? How is rendering me completely disabled because my chances of full remission are dwindling every day as I get more sick and therefore LESS capable of dealing with the dramatic treatments, and therefore less of a fit for the high-risk, high reward treatment courses, a better choice for the country..for ANYONE's pocketbook?
And how is the little old lady that dies of my disease because we don't have data on the newest drug not also their victim?
When my second pulmonologist ruled out the cause of my illness that my first pulmonologist was hooked on (he thought it was an allergy to bird dander, we removed the allergen-including our cockatoo dying while was away from his home, which broke my heart) and even later proved conclusively that there was no stimulus outside of my body causing my illness, he wanted to send me to a third pulmonologist, a specialist in the type of disease I have, because he and I could help each other. He could try some of the treatments on me that he can't try at the doses he'd like on the normal sufferers of this-senior citizens. He could try the more radical treatments, with a stronger chance of curing me, but a dramatic chance of bad side effects, because I could probably heal from any of those side effects. Think of it this way...he could be using treatments with a low chance of curing me. Not merely improving my condition, but curing me. Most importantly, he had a relationship with my doctors and their clinic, and could send me home and have my local pulmonologist keep an eye on the day-to-day stuff. The doctor (3 hours drive away) wanted me as a patient, and was prepared to set it up so that I would only have to travel to his office maybe once or twice.
The insurance company vetoed this. They, instead, sent me to a guy who was closer, cheaper, and not quite as good. He is a rare disease guy, and talented, and he's a little more than an hour away. He does not return phone calls for weeks, is slow to share data, and is part of an organization that expects me to arrive at his clinic for every change of prescription...remember, every drug for this condition is an experimental drug with a chance of doing nothing, there is NO standard treatment. The first time we showed up at his office..they didn't know who I was.
I don't drive. It is good that I do not drive, because at this point in time, I'm not sure that driving is safe for me anymore, I'm very dizzy and my eyes blur often. Getting a trip an hour away is as hard as getting a trip 3 hours away for me...getting a ride across town for the pulmonologist who is local is hard. The doctor who the insurance company rejected was prepared to work with my local doctors because anyone can monitor my blood pressure and I can get my blood drawn anywhere...he was willing to do a lot of these things *without being paid* because the research data on my rare disease can save the lives of other patients of his.
After a year of being seen by the rare disease guy that the insurance company allowed, I am considerably sicker, and the insurance company will likely have to pay for me to be hospitalized if my condition does not improve. My condition will not improve unless we begin a new experimental drug, and the doctor the insurance company will pay for is not returning calls from me or my other doctors. If we don't start an experimental drug within the month or so *and* have that drug work, I will be hospitalized.
Every time my health 'bottoms out' so to speak, there is a chance that I could die. I don't say that to be dramatic, since we ruled out all the easy stuff, we realized I have a disease that kills people, but we don't know how long it takes to kill someone without complicating diseases...most of the time people who get this have diabetes, or cancers, or are just really, really old. If I don't have a stroke, get pneumonia, or have a heart attack from the drugs to treat me, and I don't develop an opportunistic infection from the immunosuppressants, I could make it for many more years. But every time I get sick to the point of hospitalization, I'm rolling the dice and I could die.
The usual course of treatment for the exact ILD I have is hospice care, because you see it in unwell 70 year olds...make their last year of life comfortable, and let them move on in peace. We don't recommend hospice for me because it's possible for me to live 20, 30, 50 years longer with this disease...but if I roll a 1 on that d20 of life, I've only got a few months, and every time I bottom out I'm rolling that die...and the more I bottom out, the more likely I have a bad result from it.
So, how is the insurance company, which got between me and my doctor's wishes, not a death panel? How is rendering me completely disabled because my chances of full remission are dwindling every day as I get more sick and therefore LESS capable of dealing with the dramatic treatments, and therefore less of a fit for the high-risk, high reward treatment courses, a better choice for the country..for ANYONE's pocketbook?
And how is the little old lady that dies of my disease because we don't have data on the newest drug not also their victim?
Wednesday, August 8, 2012
quicky thing Re: Doctor Who
Since it's one of my most frequently looked at thingys, I put links to each of the Doctor Who guides at the bottom of the last. In order, they go:
http://www.labgrrl.com/2009/10/where-to-get-your-doctor-who-part-one.html
http://www.labgrrl.com/2009/10/where-to-get-your-doctor-who-part-two.html
http://www.labgrrl.com/2009/10/where-to-get-your-doctor-who-part-three.html
http://www.labgrrl.com/2009/11/where-to-get-your-doctor-who-part-four.html
http://www.labgrrl.com/2009/12/where-to-get-your-doctor-who-part-five.html
http://www.labgrrl.com/2010/01/where-to-get-your-who-part-6.html
http://www.labgrrl.com/2010/08/where-to-get-your-who-part-7.html
http://www.labgrrl.com/2009/10/where-to-get-your-doctor-who-part-one.html
http://www.labgrrl.com/2009/10/where-to-get-your-doctor-who-part-two.html
http://www.labgrrl.com/2009/10/where-to-get-your-doctor-who-part-three.html
http://www.labgrrl.com/2009/11/where-to-get-your-doctor-who-part-four.html
http://www.labgrrl.com/2009/12/where-to-get-your-doctor-who-part-five.html
http://www.labgrrl.com/2010/01/where-to-get-your-who-part-6.html
http://www.labgrrl.com/2010/08/where-to-get-your-who-part-7.html
Tuesday, August 7, 2012
Better, then worse, better, then worse.
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.
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