For 17 years I've been battling shoulder pain. I blamed it on the lupus/ fibro, because it showed up at the same time as the illness, but it seems it might instead be connected to my guitar playing habits. Regardless of the cause, it still freaking hurts and keeps me awake most nights. Because I'm now taking low dose naltrexone, I can no longer take the very effective narcotics my doctor prescribed me.
I've also been told for years to avoid advil, of which at one point I was taking 12 pills a day- because it damages your kidneys when you take it habitually. That was upsetting to me, because Advil was so effective and non-narcotic; it didn't make me sleepy, or have any other effects that I was conscious of.
I'm getting acupuncture again, which helps some, but my habits of guitar playing and long drives (my job, in other words) kind of undo the treatments, so I'm still suffering and trying to find ways to manage the pain.
So, I was pretty glad to to hear that ibuprofen is now available as a gel. I got a voltaren Rx from my rhuematologist, but i first heard about the gel's availability from a friend who bought some on amazon.com.
I'm also a fan of icy hot, but you can't use icy hot in combination with a heating pad, which I like to use when the gel isn't enough.
I also sometimes use salonpas capsacium patches, which you can leave on for 8 hours. They can feel a bit like ripping off a bandaid when you remove them, but if you coast them with oil before removing, it helps a lot (I use olive oil even though it grosses my hubby out to be using food products on skin. Well, at least he's not kinky.).
I also have some flexor patches, which are ibuprofen patches. I didn't find them quite as helpful as the gel, which I also use on my foot (I'm not entirely cured of the Morton's neuroma, the inflamed foot thing i developed this past summer and got a couple shots for).
I also have a TENS unit, which has been really helpful at times.
And a suction cup massage device!
And relaxation CDs.
Anybody else got some good tricks you'd like to share?
Sunday, December 13, 2009
fight off colds fast
Whenever I feel a cold coming on, I grab my bottle of Umcka cold care and take it every few hours. Rarely do I have a cold last longer than a few days, now that I've discovered this stuff, which was recommended to me, if I recall correctly, by a worker at Whole Foods. Given that I've got an immune system that is always either suppressed by drugs or busy fighting a civil war with my own body, I find it pretty remarkable that I'm able to keep the common cold from lasting more than a couple days, or even worse, landing me in the hospital or turning into pneumonia. It seems to work by boosting immunity and creating a fever, because I always feel kind of feverish about an hour after taking it.
I've been using this stuff (as needed, a couple times a year) for about 8 years now, totally swear by it. Being cold and flu season, I thought I'd write a post about it, in case it might be of help to someone else.
I've been using this stuff (as needed, a couple times a year) for about 8 years now, totally swear by it. Being cold and flu season, I thought I'd write a post about it, in case it might be of help to someone else.
Wednesday, December 9, 2009
what's illness and what's not
well, here's a real shocker: the shoulder pain i have been attributing to fibro for 17 years is in fact caused by something else: hanging my right arm over a guitar for hours at a time on a regular basis. I'm short (5'2") and your typical guitar is made with someone much taller in mind, so it knocks my frame way out of any remotely ergonomic position and leaves it there for hours at a time nearly every day. Pain is a great motivator, and so for the last couple of weeks I've been quite motivated- to do something about the pain. So i went back to get some acupuncture, something I've gone without for several months. That's when I found out the pain was not from fibro, or lupus, but from bad guitar-playing habits.
Sometimes it's not just the illness, and now I find I neither have to put up with the pain, nor do i have to keep throwing all sorts of pain remedies at it. Nor do i have to go get some cortisone pumped into it. I just need to turn the guitar facedown on my lap when I'm just holding it and yapping, and not actually playing it; and, I need to use a smaller guitar. Meanwhile, the acupuncture appointment broke the cycle of pain, tension, and inflammation.
3 weeks ago I started taking LDN (low dose naltrexone). It has been extremely effective in a couple of clinical trials for lupus patients. In order to go on LDN I had to give up all my narcotic painkillers (I've only had a doctor who would give me narcotics for the last 2 years). I was pretty uncomfortable for a couple weeks, with the shoulder pain- until I got the acupuncture. But meanwhile I had noticed my brain fog had lifted. Now for a while I've been attributing my brain fog to fibro and lupus. Sometimes over the course of 17 years that really has been the cause. Now that it is lifting, I'm not sure if ti's because the LDN is calming down the lupus activity, or just that i have a completely narcotic-free brain for the first time in a while.
About a month ago my insomnia was running wild, so I got a relaxation tape. It seemed to break the cycle of tension and anxiety, and I am now pretty much able to fall asleep without much trouble. In fact I've cut my sleep aid in half in the last few weeks. Which may also have something to do with improved brain function. Was I able to cut it in half because of the LDN or because I broke the anxiety cycle with the tapes? I may never know.
So, the point of this rambling is this: whatever it takes to break the cycle. Just as disease can bring you into a downward spiral where you can't tell whether the pain is because you're depressed or you're depressed because you're in pain (who cares? let's just get things turned around!)- so, too can healing be an upward spiral: I'm in less pain so i sleep better so i need less sleep medication so my brain is clearer. And, I'm more well-rested, therefore I feel better, therefore I am happier, therefore I feel better. And so on.
Sometimes it's not just the illness, and now I find I neither have to put up with the pain, nor do i have to keep throwing all sorts of pain remedies at it. Nor do i have to go get some cortisone pumped into it. I just need to turn the guitar facedown on my lap when I'm just holding it and yapping, and not actually playing it; and, I need to use a smaller guitar. Meanwhile, the acupuncture appointment broke the cycle of pain, tension, and inflammation.
3 weeks ago I started taking LDN (low dose naltrexone). It has been extremely effective in a couple of clinical trials for lupus patients. In order to go on LDN I had to give up all my narcotic painkillers (I've only had a doctor who would give me narcotics for the last 2 years). I was pretty uncomfortable for a couple weeks, with the shoulder pain- until I got the acupuncture. But meanwhile I had noticed my brain fog had lifted. Now for a while I've been attributing my brain fog to fibro and lupus. Sometimes over the course of 17 years that really has been the cause. Now that it is lifting, I'm not sure if ti's because the LDN is calming down the lupus activity, or just that i have a completely narcotic-free brain for the first time in a while.
About a month ago my insomnia was running wild, so I got a relaxation tape. It seemed to break the cycle of tension and anxiety, and I am now pretty much able to fall asleep without much trouble. In fact I've cut my sleep aid in half in the last few weeks. Which may also have something to do with improved brain function. Was I able to cut it in half because of the LDN or because I broke the anxiety cycle with the tapes? I may never know.
So, the point of this rambling is this: whatever it takes to break the cycle. Just as disease can bring you into a downward spiral where you can't tell whether the pain is because you're depressed or you're depressed because you're in pain (who cares? let's just get things turned around!)- so, too can healing be an upward spiral: I'm in less pain so i sleep better so i need less sleep medication so my brain is clearer. And, I'm more well-rested, therefore I feel better, therefore I am happier, therefore I feel better. And so on.
Thursday, December 3, 2009
Book Synopsis: Model Patient: My LIfe as an Incurable WIseass
Just finished reading Model Patient: My Life as an Incurable Wise-Ass, by Karen Duffy.
This is a memoir, released in 2000, and was a NY Times bestseller.
Karen was something of a celebrity when she developed sarcoidosis, an autoimmune disease that causes hardening of soft tissues. In her case, they discovered a lesion on her spine; her sarcoidosis was a rare form, being sarcoidosis of the central nervous system. She was (and is) a model for Almay, was an MTV VJ, and appeared in Michael Moore's TV Nation and The Awful Truth, and in Dumb and Dumber.
Karen has a fantastic attitude toward life in general- she's got a great sense of humor, and of fun and play, fearlessness, and spontaneity. She was raised devout Catholic, by parents who instilled in her and her siblings the importance of community service. Karen was a recreational therapist in a nursing home when her modeling career took off. She kept that job for as long as she could, juggling both careers until the modeling and acting took up too much time. Later, when very ill she goes back to the nursing home ot volunteer- and helping cheer up others others cheers her up.
Occasionally, her humor and attitudes towards other illnesses comes off as insensitive and flip, like her assumption that "we know what causes" lung cancer (smoking. Actually, not true- a very large percentage of people with lung cancer never smoked) and her list of disease that she thinks are funny like Stiff Person Syndrome and Wandering Spleen- My rule of thumb is to only joke about things I've actually gone through. Making fun of others' maladies, even if you're suffering from something equally weird or embarrassing, is skating on thin ice, like a black guy making Jew jokes or vice versa. Maybe you've both suffered because of your ethnicity, but that doesn't give you permission to joke about the other person's suffering.
I also disagree with her blanket dismissal of all alternative medicine as quackery and her claim that in China they don't even use Chinese Medicine. Were she to look into the history of so-called modern medicine, she'd realize it is only about 150 years old, and that only 150 years ago doctors routinely amputated perfectly good legs and drove drills into skulls, leaving their patients catatonic. She dismisses acupuncture without looking into it, and makes assumptions that the needles will hurt a lot, which in fact they don't. And she makes numerous jokes about enemas, basically holding them up as some kind of running joke about how idiotic people are for trying anything that's not a pill or a shot. She sums up her attitude towards medical treatment in one word: "Compliance." When you have a chronic illness, in my experience, unquestioning compliance can be very dangerous. The kinds of drugs that save your life, like prednisone, can also leave you just as sick from their long-term use. She herself now has been very damaged by both the disease and the treatments, and has acquired morphine addiction. She *has* to have morphine every few hours.
It's not surprising she would go the route of compliance, as this completely jibes with her upbringing and current practice of devout Catholicism, which has an extreme deference to authority. I don't fault her for it, and she seems to be totally OK with her choices, despite the fact that her choices have left her with a morphine addiction and changes in appearance (from the steroids) that caused her to undergo plastic surgery to correct them (something I have considered, if I could afford it- who wants a turkey neck in their 20s?). I just don't agree with the attitude of total unquestioning compliance for myself, and I don't think she should dismiss all other choices as "Quackery" without even looking into them. She even says that everyone has to deal with illness with their own approach that works for them. So I just wish she's show the same respect for other people's choices (and diseases) that she wants for her own.
That being said, it's a funny, colorful, well-written, page-turning memoir, and I'm glad I read it. It's the best "illness memoir" I've read yet. Karen is someone I would love to be friends with, and who I am sure I would admire even more if I actually knew her. She seems truly full of life, both before and after developing this disease.
Overall, this book is a great read and has a lot to offer in terms of dealing emotionally with serious illness. I still haven't finished reading David Lee Roth's or Michael J Fox's autobiographies, and I tore through this one in 3 days, which to me is the mark of a great book- I couldn't put it down!
This is a memoir, released in 2000, and was a NY Times bestseller.
Karen was something of a celebrity when she developed sarcoidosis, an autoimmune disease that causes hardening of soft tissues. In her case, they discovered a lesion on her spine; her sarcoidosis was a rare form, being sarcoidosis of the central nervous system. She was (and is) a model for Almay, was an MTV VJ, and appeared in Michael Moore's TV Nation and The Awful Truth, and in Dumb and Dumber.
Karen has a fantastic attitude toward life in general- she's got a great sense of humor, and of fun and play, fearlessness, and spontaneity. She was raised devout Catholic, by parents who instilled in her and her siblings the importance of community service. Karen was a recreational therapist in a nursing home when her modeling career took off. She kept that job for as long as she could, juggling both careers until the modeling and acting took up too much time. Later, when very ill she goes back to the nursing home ot volunteer- and helping cheer up others others cheers her up.
Occasionally, her humor and attitudes towards other illnesses comes off as insensitive and flip, like her assumption that "we know what causes" lung cancer (smoking. Actually, not true- a very large percentage of people with lung cancer never smoked) and her list of disease that she thinks are funny like Stiff Person Syndrome and Wandering Spleen- My rule of thumb is to only joke about things I've actually gone through. Making fun of others' maladies, even if you're suffering from something equally weird or embarrassing, is skating on thin ice, like a black guy making Jew jokes or vice versa. Maybe you've both suffered because of your ethnicity, but that doesn't give you permission to joke about the other person's suffering.
I also disagree with her blanket dismissal of all alternative medicine as quackery and her claim that in China they don't even use Chinese Medicine. Were she to look into the history of so-called modern medicine, she'd realize it is only about 150 years old, and that only 150 years ago doctors routinely amputated perfectly good legs and drove drills into skulls, leaving their patients catatonic. She dismisses acupuncture without looking into it, and makes assumptions that the needles will hurt a lot, which in fact they don't. And she makes numerous jokes about enemas, basically holding them up as some kind of running joke about how idiotic people are for trying anything that's not a pill or a shot. She sums up her attitude towards medical treatment in one word: "Compliance." When you have a chronic illness, in my experience, unquestioning compliance can be very dangerous. The kinds of drugs that save your life, like prednisone, can also leave you just as sick from their long-term use. She herself now has been very damaged by both the disease and the treatments, and has acquired morphine addiction. She *has* to have morphine every few hours.
It's not surprising she would go the route of compliance, as this completely jibes with her upbringing and current practice of devout Catholicism, which has an extreme deference to authority. I don't fault her for it, and she seems to be totally OK with her choices, despite the fact that her choices have left her with a morphine addiction and changes in appearance (from the steroids) that caused her to undergo plastic surgery to correct them (something I have considered, if I could afford it- who wants a turkey neck in their 20s?). I just don't agree with the attitude of total unquestioning compliance for myself, and I don't think she should dismiss all other choices as "Quackery" without even looking into them. She even says that everyone has to deal with illness with their own approach that works for them. So I just wish she's show the same respect for other people's choices (and diseases) that she wants for her own.
That being said, it's a funny, colorful, well-written, page-turning memoir, and I'm glad I read it. It's the best "illness memoir" I've read yet. Karen is someone I would love to be friends with, and who I am sure I would admire even more if I actually knew her. She seems truly full of life, both before and after developing this disease.
Overall, this book is a great read and has a lot to offer in terms of dealing emotionally with serious illness. I still haven't finished reading David Lee Roth's or Michael J Fox's autobiographies, and I tore through this one in 3 days, which to me is the mark of a great book- I couldn't put it down!
Sunday, November 22, 2009
The only diet book you'll ever need
Of all the diet books i've read, this one is the most grounded, non-faddish book. it is full of citations (references to research) and matter-of-fact, down-to-earth, solid advice. Dr. Fuhrman researched more than 2,000 studies on diet before writing this book. He is a lifelong athlete and -hard to believe in America- has never had a sip of soda. He really practices whawt he preaches.
Frequently cited is the China study, research on folks in rural china who live very long, healthy lives.
It's becoming clearer all the time that a great deal of the health problems in the US are caused or at the very least aggravated by what we put in our mouths. The good news, then, is that we can reverse a lot of illnesses that modern medicine has "no cure" for by simply changing what we eat.
Of course the problem is, most of us are actually addicted to the very things that are killing us, so it's going to be hard to give those things up. Just like an alcholic, or a smoker, sometimes there's a food monkey on your back.
Dr Fuhrman, after much research, has come up with a simple but effective plan. It can be summed up in one sentence: eat plants, nuts, and beans, and nothing else (and your health will vastly improve, possibly even reversing illness altogether).
It ticked me off at first, but that was because i knew he was right and i didn't want to change my diet yet again. but i am mostly following his suggestions and while I have not seen a sudden reverse trend in my lab tests to the better, i look better- i get lots of compliments lately! and i've lost a few pounds. i've got to get chocolate out of my life, and stop soda altogether (I gave up diet soda 2 years ago, and have 1 or 2 regular sodas a week)- those are my last remaining vices. nothing redeeming in soda, and no one needs chocolate daily, even in small amounts. sigh.
The only shortcoming in this book, in my opinion, and it's a very small shortcoming, is that Dr. Fuhrman never ate junk food, so he has no idea how hard it is to change your evil ways and engrained habits. At first, I thought his book might be better received if he would be less hardcore about it, and let people slowly change their habits. But now I think that would have watered down his message, and that the only way for him to say what he needed to say was to be completely uncompromising.
In a nutshell, best book about diet out there. It's not so much abotu weight loss, but changing your habits for the purpose of improving your health. A lot of people say they want to lose weight "for health reasons" but really, they just want to lose weight without sounding vain. This book tells you how to eat for health reasons and oh by the way you'll probably lose weight.
there is also the book the lupus recovery diet, which suggests a low fat vegan (no animal products) diet. that author worked with the author of eat to live so there is some overlap.
Eat to live is slightly cheaper and has more scientific content. The lupus recovery diet has more patient testimony. Both have recipes.
Frequently cited is the China study, research on folks in rural china who live very long, healthy lives.
It's becoming clearer all the time that a great deal of the health problems in the US are caused or at the very least aggravated by what we put in our mouths. The good news, then, is that we can reverse a lot of illnesses that modern medicine has "no cure" for by simply changing what we eat.
Of course the problem is, most of us are actually addicted to the very things that are killing us, so it's going to be hard to give those things up. Just like an alcholic, or a smoker, sometimes there's a food monkey on your back.
Dr Fuhrman, after much research, has come up with a simple but effective plan. It can be summed up in one sentence: eat plants, nuts, and beans, and nothing else (and your health will vastly improve, possibly even reversing illness altogether).
It ticked me off at first, but that was because i knew he was right and i didn't want to change my diet yet again. but i am mostly following his suggestions and while I have not seen a sudden reverse trend in my lab tests to the better, i look better- i get lots of compliments lately! and i've lost a few pounds. i've got to get chocolate out of my life, and stop soda altogether (I gave up diet soda 2 years ago, and have 1 or 2 regular sodas a week)- those are my last remaining vices. nothing redeeming in soda, and no one needs chocolate daily, even in small amounts. sigh.
The only shortcoming in this book, in my opinion, and it's a very small shortcoming, is that Dr. Fuhrman never ate junk food, so he has no idea how hard it is to change your evil ways and engrained habits. At first, I thought his book might be better received if he would be less hardcore about it, and let people slowly change their habits. But now I think that would have watered down his message, and that the only way for him to say what he needed to say was to be completely uncompromising.
In a nutshell, best book about diet out there. It's not so much abotu weight loss, but changing your habits for the purpose of improving your health. A lot of people say they want to lose weight "for health reasons" but really, they just want to lose weight without sounding vain. This book tells you how to eat for health reasons and oh by the way you'll probably lose weight.
there is also the book the lupus recovery diet, which suggests a low fat vegan (no animal products) diet. that author worked with the author of eat to live so there is some overlap.
Eat to live is slightly cheaper and has more scientific content. The lupus recovery diet has more patient testimony. Both have recipes.
Thursday, November 5, 2009
To sleep, perchance to heal
I've had insomnia for as along as I can remember. If I didn't need to sleep to heal, I just say "who cares" and stay up all night watching Law and Order reruns, or tackle that mountain of paper in my office that needs filing. Or clean out my sock drawer. Well, that would probably wake up my husband. But I'd just get out of bed and do something productive with the lost sleep time. But I need to sleep to heal, or at least to keep from sliding downhill into a hospital bed.
But once I put that pressure on myself to that *must* sleep, now I have performance anxiety added to the mix- what if i can't sleep? Oh god, there's the paper delivery guy. Oh now I hear the trash trucks. it's getting light outside. crap.
I've been on bunches of sleep meds. Ambien just made my face puffy, still couldn't sleep. Rozaren has great commercials with Abe LIncoln and beavers, but my dreams were still missing me, even with a double dose. Attivan actually works for me, but it erases my memory and makes me tired (how can you tell - lupus makes you tired! OK, even more tired).
A great deal of the reason I can't sleep is that I can't shut off my brain. i worry about stupid crap that probably won't happen, or stupid stuff that already happened and I should have handled better, or stupid stuff that will happen but doesn't matter, or I can't do anything about... or, best of all, i worry about not getting enough sleep, causing me to not be able to fall asleep. Anti-anxiety meds work great for this, but for every drug there is a price to pay, and i don't just mean $, because attivan generic is cheap. Having no short-term memory is actually getting to be a problem. Thankfully, my husband is very trustworthy. Because when people tell me I said on Monday "I'd like to go to a 5-hour play about ringworms this weekend," i just have to take their word for it that I did indeed say that. CLearly it's time to get off the attivan. it's been 3 years.
I started taking it in the hospital when I was almost literally climbing the walls because 1) i hate being in the hospital 2) they pout me on a high dose of prednisone. I was about to check out A.M.A (funny how "American Medical Association" and "Against medical advice" have the same acronym) and they gave me some attivan to calm me down. Meanwhile I already had plans to sneak out that night for dinner with my fiance and my mom so get some real food. I took the attivan first. I remember getting the menu, and I remember signing the hospital log on the way back in as a "visitor" (I signed in as my sister coming to visit myself). The rest I have to take my fiance's word on.
Anyway, it's time to deal with this monster. So i bought this guided imagery cassette (yes a cassette) and listened to it on my walkman (yes a walkman) and listened to it with my pet rock (no, not really) as i lay in bed, and after 4 straight nights of lousy/ no sleep, I finally relaxed and fell asleep. I often use CNN when I can't sleep, but the content on CNN can't possibly be what I really want in my subconscious: political fighting, rape, murder, balloon boy. I need something more healing (which would be just about anything else short of Nightmare on Elm Street).
The cassette was so good I went looking to see if it had been re-released on CD, and it has, so I repurchased it. (Just like the good old days when I bought an album on LP, then cassette, then CD... then mp3). It's called "Health Journeys: A Guided Meditation to Help You with Rheumatoid Arthritis or Lupus" by
Belleruth Naparstek
The meditations are specifically for someone with RA or lupus. it's so nice not to be borrowing something from cancer and trying to adapt it. It is specifically for us, and right on target, and I've used it 4 nights in a row. Not only am I actually falling asleep, it's to something not just non-toxic, but actually healing. I also feel more relaxed during the day.
This same author also has a CD specifically for sleep:
But once I put that pressure on myself to that *must* sleep, now I have performance anxiety added to the mix- what if i can't sleep? Oh god, there's the paper delivery guy. Oh now I hear the trash trucks. it's getting light outside. crap.
I've been on bunches of sleep meds. Ambien just made my face puffy, still couldn't sleep. Rozaren has great commercials with Abe LIncoln and beavers, but my dreams were still missing me, even with a double dose. Attivan actually works for me, but it erases my memory and makes me tired (how can you tell - lupus makes you tired! OK, even more tired).
A great deal of the reason I can't sleep is that I can't shut off my brain. i worry about stupid crap that probably won't happen, or stupid stuff that already happened and I should have handled better, or stupid stuff that will happen but doesn't matter, or I can't do anything about... or, best of all, i worry about not getting enough sleep, causing me to not be able to fall asleep. Anti-anxiety meds work great for this, but for every drug there is a price to pay, and i don't just mean $, because attivan generic is cheap. Having no short-term memory is actually getting to be a problem. Thankfully, my husband is very trustworthy. Because when people tell me I said on Monday "I'd like to go to a 5-hour play about ringworms this weekend," i just have to take their word for it that I did indeed say that. CLearly it's time to get off the attivan. it's been 3 years.
I started taking it in the hospital when I was almost literally climbing the walls because 1) i hate being in the hospital 2) they pout me on a high dose of prednisone. I was about to check out A.M.A (funny how "American Medical Association" and "Against medical advice" have the same acronym) and they gave me some attivan to calm me down. Meanwhile I already had plans to sneak out that night for dinner with my fiance and my mom so get some real food. I took the attivan first. I remember getting the menu, and I remember signing the hospital log on the way back in as a "visitor" (I signed in as my sister coming to visit myself). The rest I have to take my fiance's word on.
Anyway, it's time to deal with this monster. So i bought this guided imagery cassette (yes a cassette) and listened to it on my walkman (yes a walkman) and listened to it with my pet rock (no, not really) as i lay in bed, and after 4 straight nights of lousy/ no sleep, I finally relaxed and fell asleep. I often use CNN when I can't sleep, but the content on CNN can't possibly be what I really want in my subconscious: political fighting, rape, murder, balloon boy. I need something more healing (which would be just about anything else short of Nightmare on Elm Street).
The cassette was so good I went looking to see if it had been re-released on CD, and it has, so I repurchased it. (Just like the good old days when I bought an album on LP, then cassette, then CD... then mp3). It's called "Health Journeys: A Guided Meditation to Help You with Rheumatoid Arthritis or Lupus" by
Belleruth Naparstek
The meditations are specifically for someone with RA or lupus. it's so nice not to be borrowing something from cancer and trying to adapt it. It is specifically for us, and right on target, and I've used it 4 nights in a row. Not only am I actually falling asleep, it's to something not just non-toxic, but actually healing. I also feel more relaxed during the day.
This same author also has a CD specifically for sleep:
Monday, November 2, 2009
Low Dose Naltrexone
I'd like to be more excited about the announcement of a new drug specifically for lupus called Benlysta. I really would. But it is effective in about 42% of patients, and the placebo worked for 34%. And I am certain, with this being a genetic tweaking kind of drug, it's going to be very expensive. In fact, I'm sure it is, as Glaxo-Smith Kline is aleady referring to it as a "very major" opportunity:
http://www.forexyard.com/en/reuters_inner.tpl?action=2009-11-12T205006Z_01_N12429750_RTRIDST_0_HEALTH-SUMMIT-GLAXOSMITHKLINE-BENLYSTA
So I'm sorry. I appreciate all the hard work and even more the fact that someone is trying to develop something specifically for lupus.
However in my mind, the next great hope for autoimmune disease is something that has been around for a while and is cheap- and I gotta say after 17 years of dealing with the horrible effects of lupus and the equally horrible effects of the drugs used to treat lupus, I am ready for something else, especially if it is cheap, non-toxic, and doesn't suppress your immune system or screw with your genes.
I had 3 people tell me about LDN (low-dose naltrexone) in the course of a month, so I knew the universe was trying to tell me something! I printed out the info on the website and brought it to my rheumatologist this past Friday. he's supposed to call me Monday after he has a chance to research it and let me know whether he's be willing to prescribe it for me. If he doesn't call em Monday I will call him Tuesday. And id he doesn't prescribe it for me, I will be looking for another doctor.
My inflammation (sed rate) hasn't been below 55 all year, and living with that kind of inflammation is really dangerous. I managed to turn things around back in February and my tests even went negative briefly. But then i was exposed to mold and went into fibromyalgia attacks, then i got a neuroma in my foot form wearing tight shoes, and got rid of that and caught a virus. I'm tired of being so vulnerable!
So here's hoping. I'm hearing great things about this drug, which was developed in high doses to treat addiction. I'm not a fan of drugs in general, but with lupus, we just don't seem to be able to get by or get better without some kind of pharmaceutical assistance, at least during crisis. LDN is not an immune suppressant, nor an immune booster, but an immune modulator- it gets your body to make more endorphins (and who with lupus couldn't use some feel-good substances!) and to stop attacking itself. Really sounds like the right approach.
Right now, as we sit here and stare at our computer screens, there are clinical trials going on in Europe using LDN to treat autoimmune diseases including lupus (SLE). There will probably not be any such trials in the US because the medicine is no longer under patent and therefore not profitable. But it is legal and ethical for doctors to prescribe it, if you can convince them to do so. It's called "off-label use."
I just took my first dose as of 11/16/09. If it is going to be effective for me, I should notice improvement in 1-2 weeks. It tastes gross, but hey, it's only 1 milliliter. Not any worse than prednisone. I'm already gluten and dairy-free, and off opiate pain-killers, so the typical interfering factors are a non-issue. Here's hoping.
To get more in-depth info on LDN, check out the LDN webpage. There are discussion groups you can join.
http://www.lowdosenaltrexone.org/
A doctor talks about the effectiveness of LDN for autoimmune disorders, specifically RA and Systemic Lupus:
http://www.youtube.com/watch?v=nttilGKpJvU
update 11/22: not quite a week on the LDN. I've had really uncomfortable fibro pain all week, which actually started before I started taking the LDN, but once you start LDN you can't take narcotics anymore. So, I was left with picking from my basket of old tricks I've used for the first 15 years of this illness, during which no one ever gave me any narcotics unless I was in the hospital. Hubby gave me shoulder rubs, which gets the pain from (scale of 10) from a 10 to, say, a 6. Used capsacium (Salonpas) patches which helped get it down to a 4. Still makes it hard to sleep. Taking Aleve and/ or prescription aspirin, shaves the pain down to a 3, slept propped up for several nights. I have only 2 nights of insomnia, a side effect of LDN for some people.
update 11/29: The pain is still not under control but I do seem to have more energy- I can do more in a day- and my brain fog is nearly gone. For the last year, I've barely been able to finish a sentence without losing my train of thought, and that is not much of a problem this past week.
From what I've seen, it's going to take 1-6 months for the LDN to really turn around the whole autoimmune process, but if it really turns it around and getes my body to stop attacking itself (and does so without side effects and causing weight gain, mood swings, hair loss and serious illnesses such as diabetes and osteoporosis, a la prednisone) then it will have been worth having to give up my sure-fire narcotic pain relief short-term to just not have pain long-term.
update 11/30: i upped my dose from 2.0 to 3.0 tonight. I was in constant pain all weekend, all around my upper body, which I think I've traced to having carried my guitar around in a gig bag on my back both Friday and Saturday. The cold air is also not agreeing with my lungs- my chest feels really tight.
I overheard some guy tonight blabbing about how he lost a bunch of weight by just going jogging twice a week. he seemed to believe that anyone could lose weight that easily. it made me really mad, because he put out so little effort and almost painlessly met his goal. I feel like i make so many changes and sacrifices and sometimes don't see any results, and just have to keep giving up more and more and more things - first no overexertion and no sunshine, then no soda; then, no bread, no lunchmeat, no dairy. And still my numbers are terrible and I'm in constant pain. And now, no painkillers. What's next, no smiling? i shouldn't have to work this hard to feel normal! what the hell went WRONG?! OK, just had to rant for a minute. Makes me crazy when healthy people take their well-being for granted and they can't imagine why everyone else can't just go jogging and have the weight fall off, or lose 2 pounds every morning by peeing, or drink a red bull and power through it all.
Anyhow my current idea about what to do next if the LDN doesn't start showing results ASAP is to do a Candida cleanse (this is strongly encouraged by those who know about LDN)- meaning give up EVEN MORE foods (temporarily), including all sugar, even fruits, take some herbs, and kill off the yeast in my gut. Yeast overgrows if 1) you eat/ drink too much sugar 2) your immune system is compromised by stress or immune suppressants, such as prednisone and cellcept, which i've taken 3) anitbiotics. I did the candida diet both the other times I took prednisone, in 1994 and 2002, but haven't done it since the 2006 hospital stay/ year-long prednisone usage. Dreading the cleanse, feel like I've already sacrificed enough by going vegan and gluten free and giving up diet soda and giving up my narcotics and being in pain for the last 2 weeks, but i absolutely must get to the bottom of this thing, or i'm going to end up even worse off - back on prednisone, moonfaced and hairless, biding my time til my turn on the gurney, lining up to have my bones replaced after the drug eats them away.
update 12/3 (Day 17 on LDN): I'm now taking 4.5 mg a night. well turns out some of that shoulder pain was caused by carrying around the guitar on my back. I know that because that alone has cost me enduring days of shoulder pain before. And also now that my "Aunt Flow" is here, 3 days early , as usual (If she's always early then I guess early is the new "on time" for me), I am starting to get some relief from the pain. Also aided by icy hot, my husband giving me several back rubs, and me doing chi gung, and doing tons of shoulder rolls. I also listen to relaxation tapes when I go to bed, and try to breathe *into* the pain and tightness, instead of breathing shallowly to avoid pain. It's hard for me to measure how anything else is doing in regards to the LDN - the pain kind of swallows up awareness of anything else. I've been staying up til 5am because i can't stand going to bed when I hurt. Turning off all the lights and distractions and lying down and putting weight on my hurting shoulders just magnifies the whole thing 100-fold. But I do seem to be less forgetful and mentally foggy. Once the pain completely dissipates I'll have more perspective on everything else.
update 12/10 (day 24 on LDN): After seeing the acupuncturist last week, I now know that the shoulder pain I've been blaming on lupus and fibro is probably caused by playing guitar. I had a great acup. treatment with needles, TENS unit and cupping. It got rid of 80-90% of the pain. Hubby continues to give me back rubs to keep it under control, and I got another treatment today. Dr Wu (my acupuncturist) asked me for my lab results so she can make a case study of me. She has completely turned around the health of people with lupus before. I'd like to be in that company. Meanwhile I've been able to cut my sleep med in half since starting LDN. Which means I'm less groggy and less brain foggy. I continue to stay gluten-free, vegan, and no aspartame (diet soda, or anything else with nutrasweet). I also added taking liquid vitamin D to the mix, as most Americans have vit D deficiency, and it is linked to autoimmunity. Normally you get your vit D from the sun, and people with lupus have to avoid the sun. So you'd think that we would be ordered to take vit D, wouldn't you? Too obvious?
Also, someone suggested that since LDN is supposed to be taken in sync with your biorhythms, between 9pm and 2am, that we should account for dalylight savings time. So that means to take it between 8pm and 1am. I've set an alarm on my digital watch to make sure I take it before 1am each night (I'm still a nightowl).
When I get better (not if, but when, because I've done it before) it may be hard to trace it to one thing, because I'm doing acupuncture, taking vit D, changed my diet and started LDN. However, I went gluten free 1 year before starting LDN, and gave up nutrasweet 2 years before. I went vegan 2 months before, and before starting LDN, after all those changes, my numbers were not improving. I always need more than just diet. Diet and acupuncture alone would do it, and did it before. But then I got sick as soon as I hit immune challenges (mold exposure, stress). Therefore I'm combining the 2 things that worked before, plus LDN and vit D, in hopes that I'll get better faster and stay better longer. I'm feeling very positive about this path.
update 12/13: shoulder pain is back, kept me up most of the night. used ibuprofen gel, heating pad, suction cup massager, helped long enough to fall asleep, but not all night. I seem to need a massage every few hours. Of course this attack was brought to you courtesy of driving 500 miles and playing 2 shows in the course of 24 hours. Meanwhile (knock on wood) It's been a while since I've had to take anything for a headache and I don't seem to be having pain anywhere else (such as elbows, knees, ankles, fingers, which often swell and hurt when the disease is active). And my, um, bathroom results are back to normal (had a few days of- let's call it "doing number 3").
http://www.forexyard.com/en/reuters_inner.tpl?action=2009-11-12T205006Z_01_N12429750_RTRIDST_0_HEALTH-SUMMIT-GLAXOSMITHKLINE-BENLYSTA
So I'm sorry. I appreciate all the hard work and even more the fact that someone is trying to develop something specifically for lupus.
However in my mind, the next great hope for autoimmune disease is something that has been around for a while and is cheap- and I gotta say after 17 years of dealing with the horrible effects of lupus and the equally horrible effects of the drugs used to treat lupus, I am ready for something else, especially if it is cheap, non-toxic, and doesn't suppress your immune system or screw with your genes.
I had 3 people tell me about LDN (low-dose naltrexone) in the course of a month, so I knew the universe was trying to tell me something! I printed out the info on the website and brought it to my rheumatologist this past Friday. he's supposed to call me Monday after he has a chance to research it and let me know whether he's be willing to prescribe it for me. If he doesn't call em Monday I will call him Tuesday. And id he doesn't prescribe it for me, I will be looking for another doctor.
My inflammation (sed rate) hasn't been below 55 all year, and living with that kind of inflammation is really dangerous. I managed to turn things around back in February and my tests even went negative briefly. But then i was exposed to mold and went into fibromyalgia attacks, then i got a neuroma in my foot form wearing tight shoes, and got rid of that and caught a virus. I'm tired of being so vulnerable!
So here's hoping. I'm hearing great things about this drug, which was developed in high doses to treat addiction. I'm not a fan of drugs in general, but with lupus, we just don't seem to be able to get by or get better without some kind of pharmaceutical assistance, at least during crisis. LDN is not an immune suppressant, nor an immune booster, but an immune modulator- it gets your body to make more endorphins (and who with lupus couldn't use some feel-good substances!) and to stop attacking itself. Really sounds like the right approach.
Right now, as we sit here and stare at our computer screens, there are clinical trials going on in Europe using LDN to treat autoimmune diseases including lupus (SLE). There will probably not be any such trials in the US because the medicine is no longer under patent and therefore not profitable. But it is legal and ethical for doctors to prescribe it, if you can convince them to do so. It's called "off-label use."
I just took my first dose as of 11/16/09. If it is going to be effective for me, I should notice improvement in 1-2 weeks. It tastes gross, but hey, it's only 1 milliliter. Not any worse than prednisone. I'm already gluten and dairy-free, and off opiate pain-killers, so the typical interfering factors are a non-issue. Here's hoping.
To get more in-depth info on LDN, check out the LDN webpage. There are discussion groups you can join.
http://www.lowdosenaltrexone.org/
A doctor talks about the effectiveness of LDN for autoimmune disorders, specifically RA and Systemic Lupus:
http://www.youtube.com/watch?v=nttilGKpJvU
update 11/22: not quite a week on the LDN. I've had really uncomfortable fibro pain all week, which actually started before I started taking the LDN, but once you start LDN you can't take narcotics anymore. So, I was left with picking from my basket of old tricks I've used for the first 15 years of this illness, during which no one ever gave me any narcotics unless I was in the hospital. Hubby gave me shoulder rubs, which gets the pain from (scale of 10) from a 10 to, say, a 6. Used capsacium (Salonpas) patches which helped get it down to a 4. Still makes it hard to sleep. Taking Aleve and/ or prescription aspirin, shaves the pain down to a 3, slept propped up for several nights. I have only 2 nights of insomnia, a side effect of LDN for some people.
update 11/29: The pain is still not under control but I do seem to have more energy- I can do more in a day- and my brain fog is nearly gone. For the last year, I've barely been able to finish a sentence without losing my train of thought, and that is not much of a problem this past week.
From what I've seen, it's going to take 1-6 months for the LDN to really turn around the whole autoimmune process, but if it really turns it around and getes my body to stop attacking itself (and does so without side effects and causing weight gain, mood swings, hair loss and serious illnesses such as diabetes and osteoporosis, a la prednisone) then it will have been worth having to give up my sure-fire narcotic pain relief short-term to just not have pain long-term.
update 11/30: i upped my dose from 2.0 to 3.0 tonight. I was in constant pain all weekend, all around my upper body, which I think I've traced to having carried my guitar around in a gig bag on my back both Friday and Saturday. The cold air is also not agreeing with my lungs- my chest feels really tight.
I overheard some guy tonight blabbing about how he lost a bunch of weight by just going jogging twice a week. he seemed to believe that anyone could lose weight that easily. it made me really mad, because he put out so little effort and almost painlessly met his goal. I feel like i make so many changes and sacrifices and sometimes don't see any results, and just have to keep giving up more and more and more things - first no overexertion and no sunshine, then no soda; then, no bread, no lunchmeat, no dairy. And still my numbers are terrible and I'm in constant pain. And now, no painkillers. What's next, no smiling? i shouldn't have to work this hard to feel normal! what the hell went WRONG?! OK, just had to rant for a minute. Makes me crazy when healthy people take their well-being for granted and they can't imagine why everyone else can't just go jogging and have the weight fall off, or lose 2 pounds every morning by peeing, or drink a red bull and power through it all.
Anyhow my current idea about what to do next if the LDN doesn't start showing results ASAP is to do a Candida cleanse (this is strongly encouraged by those who know about LDN)- meaning give up EVEN MORE foods (temporarily), including all sugar, even fruits, take some herbs, and kill off the yeast in my gut. Yeast overgrows if 1) you eat/ drink too much sugar 2) your immune system is compromised by stress or immune suppressants, such as prednisone and cellcept, which i've taken 3) anitbiotics. I did the candida diet both the other times I took prednisone, in 1994 and 2002, but haven't done it since the 2006 hospital stay/ year-long prednisone usage. Dreading the cleanse, feel like I've already sacrificed enough by going vegan and gluten free and giving up diet soda and giving up my narcotics and being in pain for the last 2 weeks, but i absolutely must get to the bottom of this thing, or i'm going to end up even worse off - back on prednisone, moonfaced and hairless, biding my time til my turn on the gurney, lining up to have my bones replaced after the drug eats them away.
update 12/3 (Day 17 on LDN): I'm now taking 4.5 mg a night. well turns out some of that shoulder pain was caused by carrying around the guitar on my back. I know that because that alone has cost me enduring days of shoulder pain before. And also now that my "Aunt Flow" is here, 3 days early , as usual (If she's always early then I guess early is the new "on time" for me), I am starting to get some relief from the pain. Also aided by icy hot, my husband giving me several back rubs, and me doing chi gung, and doing tons of shoulder rolls. I also listen to relaxation tapes when I go to bed, and try to breathe *into* the pain and tightness, instead of breathing shallowly to avoid pain. It's hard for me to measure how anything else is doing in regards to the LDN - the pain kind of swallows up awareness of anything else. I've been staying up til 5am because i can't stand going to bed when I hurt. Turning off all the lights and distractions and lying down and putting weight on my hurting shoulders just magnifies the whole thing 100-fold. But I do seem to be less forgetful and mentally foggy. Once the pain completely dissipates I'll have more perspective on everything else.
update 12/10 (day 24 on LDN): After seeing the acupuncturist last week, I now know that the shoulder pain I've been blaming on lupus and fibro is probably caused by playing guitar. I had a great acup. treatment with needles, TENS unit and cupping. It got rid of 80-90% of the pain. Hubby continues to give me back rubs to keep it under control, and I got another treatment today. Dr Wu (my acupuncturist) asked me for my lab results so she can make a case study of me. She has completely turned around the health of people with lupus before. I'd like to be in that company. Meanwhile I've been able to cut my sleep med in half since starting LDN. Which means I'm less groggy and less brain foggy. I continue to stay gluten-free, vegan, and no aspartame (diet soda, or anything else with nutrasweet). I also added taking liquid vitamin D to the mix, as most Americans have vit D deficiency, and it is linked to autoimmunity. Normally you get your vit D from the sun, and people with lupus have to avoid the sun. So you'd think that we would be ordered to take vit D, wouldn't you? Too obvious?
Also, someone suggested that since LDN is supposed to be taken in sync with your biorhythms, between 9pm and 2am, that we should account for dalylight savings time. So that means to take it between 8pm and 1am. I've set an alarm on my digital watch to make sure I take it before 1am each night (I'm still a nightowl).
When I get better (not if, but when, because I've done it before) it may be hard to trace it to one thing, because I'm doing acupuncture, taking vit D, changed my diet and started LDN. However, I went gluten free 1 year before starting LDN, and gave up nutrasweet 2 years before. I went vegan 2 months before, and before starting LDN, after all those changes, my numbers were not improving. I always need more than just diet. Diet and acupuncture alone would do it, and did it before. But then I got sick as soon as I hit immune challenges (mold exposure, stress). Therefore I'm combining the 2 things that worked before, plus LDN and vit D, in hopes that I'll get better faster and stay better longer. I'm feeling very positive about this path.
update 12/13: shoulder pain is back, kept me up most of the night. used ibuprofen gel, heating pad, suction cup massager, helped long enough to fall asleep, but not all night. I seem to need a massage every few hours. Of course this attack was brought to you courtesy of driving 500 miles and playing 2 shows in the course of 24 hours. Meanwhile (knock on wood) It's been a while since I've had to take anything for a headache and I don't seem to be having pain anywhere else (such as elbows, knees, ankles, fingers, which often swell and hurt when the disease is active). And my, um, bathroom results are back to normal (had a few days of- let's call it "doing number 3").
Wednesday, September 23, 2009
Smoothies- good for you?
In an attempt to get more fruit into my diet, I've been making lots of smoothies at home. I know what goes into them when I make them: fruit, ice, and a little rice milk. That's it.
Well, America, do not assume that is what goes into a smoothie at the mall. All smoothies are not created equal. Your mileage will most definitely vary. I was on a long trip, searching daily for something to eat that wasn't bad for me. The Luna bars in my suitcase were the healthiest things I had for 10 days. I went to many places looking for smoothies and nearly all of them were made of 8 ounces of sugar water, some ice, and a few berries. That is not health food. It is one step above Kool-Aid.
I have, however, found 2 chains that serve real honest-to-God smoothies: no added sugar, no corn syrup, just fruit and ice, maybe yogurt if you want it.
They are:
Jamba Juice
Smoothie King
If you're not sure what's in it, ask. Is there anything in it besides fruit and ice? Do you put water in it? If they hold up a gallon jug that looks like tea, that's the 8 ounces of sugar water that has no nutritional value whatsoever. Save yourself $7 and have a candy bar. It's about as (un)healthy. Or look around for a Jamba Juice or Smoothie King.
I am not connected to or paid by either company. Just sharing what I'm learning, in my effort to find good food.
Well, America, do not assume that is what goes into a smoothie at the mall. All smoothies are not created equal. Your mileage will most definitely vary. I was on a long trip, searching daily for something to eat that wasn't bad for me. The Luna bars in my suitcase were the healthiest things I had for 10 days. I went to many places looking for smoothies and nearly all of them were made of 8 ounces of sugar water, some ice, and a few berries. That is not health food. It is one step above Kool-Aid.
I have, however, found 2 chains that serve real honest-to-God smoothies: no added sugar, no corn syrup, just fruit and ice, maybe yogurt if you want it.
They are:
Jamba Juice
Smoothie King
If you're not sure what's in it, ask. Is there anything in it besides fruit and ice? Do you put water in it? If they hold up a gallon jug that looks like tea, that's the 8 ounces of sugar water that has no nutritional value whatsoever. Save yourself $7 and have a candy bar. It's about as (un)healthy. Or look around for a Jamba Juice or Smoothie King.
I am not connected to or paid by either company. Just sharing what I'm learning, in my effort to find good food.
Tuesday, August 25, 2009
Book Synopsis: The Last Lecture
I'm a little behind the curve on reading the latest best-sellers. But then that means I can get them at the library or really cheap used. So, I finally got around to reading The Last Lecture by (the late) Randy Pausch.
If you're like my husband, and unable to read or talk about death, then this book will not be enjoyable for you. But if you're like me, and you've already faced your own mortality, the mentions of death, mortality and illness won't bother you. That's not really what the book is about- it's about living life fully. But to understand why he is giving the lecture, you have to know the circumstances of his life. He had been diagnosed with pancreatic cancer, one of the scariest cancers with the highest mortality rates. He was given months to live. According to his blog, he seems to have lived 2 years after diagnosis, thanks in part to a radical surgery shortly after diagnosis. Randy and his wife had 3 young kids, and he had a career he loved, so he had every reason to live, and this lecture was his attempt to bottle up everything he wanted to tell their kids once they were old enough to understand it. We just get to listen in. The lecture was given live at the university where he worked; they actually had a legacy of "last Lectures," where, strangely enough, professors were asked to give a lecture addressing "What wisdom would we impart to the world if we knew it was our last chance." And the author was asked to speak in the series.
The book is not a transcript of the lecture. It was written afterward, as Randy went on long bike rides and his co-author transcribed the conversation. It's something of a memoir, but Randy tries to squeeze in as many life lessons as possible throughout. The most tangible, practical advice is contained in his time management section. When you haven't got much time to live, you haven't got any to waste, so here's a guy who knows the value of time management. FYI, it is not really about conquering or living with illness.
I found it an easy, uplifting read with some good advice on conducting your life.
Right now I am reading Eat to Live. I actually had lunch at the same table as Dr Fuhrman and his wife yesterday. They live what they preach and are very passionate about nutrition and healing. More on that soon. My progress on that book may be slowed a bit by my intermittent reading of David Leee Roth's autobiography (gotta balance out that Last lecture seriousness somehow, right?)
If you're like my husband, and unable to read or talk about death, then this book will not be enjoyable for you. But if you're like me, and you've already faced your own mortality, the mentions of death, mortality and illness won't bother you. That's not really what the book is about- it's about living life fully. But to understand why he is giving the lecture, you have to know the circumstances of his life. He had been diagnosed with pancreatic cancer, one of the scariest cancers with the highest mortality rates. He was given months to live. According to his blog, he seems to have lived 2 years after diagnosis, thanks in part to a radical surgery shortly after diagnosis. Randy and his wife had 3 young kids, and he had a career he loved, so he had every reason to live, and this lecture was his attempt to bottle up everything he wanted to tell their kids once they were old enough to understand it. We just get to listen in. The lecture was given live at the university where he worked; they actually had a legacy of "last Lectures," where, strangely enough, professors were asked to give a lecture addressing "What wisdom would we impart to the world if we knew it was our last chance." And the author was asked to speak in the series.
The book is not a transcript of the lecture. It was written afterward, as Randy went on long bike rides and his co-author transcribed the conversation. It's something of a memoir, but Randy tries to squeeze in as many life lessons as possible throughout. The most tangible, practical advice is contained in his time management section. When you haven't got much time to live, you haven't got any to waste, so here's a guy who knows the value of time management. FYI, it is not really about conquering or living with illness.
I found it an easy, uplifting read with some good advice on conducting your life.
Right now I am reading Eat to Live. I actually had lunch at the same table as Dr Fuhrman and his wife yesterday. They live what they preach and are very passionate about nutrition and healing. More on that soon. My progress on that book may be slowed a bit by my intermittent reading of David Leee Roth's autobiography (gotta balance out that Last lecture seriousness somehow, right?)
Thursday, August 20, 2009
What British health care is really like
Here is an e mail from a friend of mine, who is British and has been fighting myeloma for the last year or so. He wanted to et the record straight about government health care in England. (FYI I don't have a direct line of communication to Sarah Palin.)
Dear Carla
You're American - tell that lunatic Sarah Palin to stop peddling lies about our National Health Service! It appears from over here that some rather ugly people are coming out of the woodwork to try and persuade you all that the British NHS is some kind of communist conspiracy that, if adopted in the US will result in bodies lying in the street (I thought that was what happened after Hurricane Katrina thanks to neglected flood defences...) and doctors arbitrarily deciding who lives and dies.
Sure, the NHS isn't perfect, far from it is some respects due to our idiot government's obsession with targets being met to produce good-looking statistics, hence a top-heavy administration full of box-tickers and not enough actual workers like cleaners in some areas. I can't say though that I have anything to complain about after my experiences. While I was cooped up during most of February in the (spotlessly clean) isolation room, I asked one of the nurses what the difference was between the way I was being accomodated and treated and the private patients on another floor. She said they got a compliemntary newspaper and a better view out of the window.
What did you tell me about how much your various drugs had cost you in the last year? I think you mentioned the figure of $7000. Here in April they made cancer drugs free - previously I had been supplied with all my stuff using a card costing about $150 for a year, irrespective of the quantities. Prior to that I had to pay about $12 for each prescription, sometimes three or four a time, so the high use card became the better option, but as I say now no charge at all.
I wonder if Ms Palin gets paid by the drug and insurance companies in cash or with stock options and Mercedes sports cars.
There, I feel better now, having a little rant about these BS merchants!
Hope things are good with you. Best wishes
Martin
Dear Carla
You're American - tell that lunatic Sarah Palin to stop peddling lies about our National Health Service! It appears from over here that some rather ugly people are coming out of the woodwork to try and persuade you all that the British NHS is some kind of communist conspiracy that, if adopted in the US will result in bodies lying in the street (I thought that was what happened after Hurricane Katrina thanks to neglected flood defences...) and doctors arbitrarily deciding who lives and dies.
Sure, the NHS isn't perfect, far from it is some respects due to our idiot government's obsession with targets being met to produce good-looking statistics, hence a top-heavy administration full of box-tickers and not enough actual workers like cleaners in some areas. I can't say though that I have anything to complain about after my experiences. While I was cooped up during most of February in the (spotlessly clean) isolation room, I asked one of the nurses what the difference was between the way I was being accomodated and treated and the private patients on another floor. She said they got a compliemntary newspaper and a better view out of the window.
What did you tell me about how much your various drugs had cost you in the last year? I think you mentioned the figure of $7000. Here in April they made cancer drugs free - previously I had been supplied with all my stuff using a card costing about $150 for a year, irrespective of the quantities. Prior to that I had to pay about $12 for each prescription, sometimes three or four a time, so the high use card became the better option, but as I say now no charge at all.
I wonder if Ms Palin gets paid by the drug and insurance companies in cash or with stock options and Mercedes sports cars.
There, I feel better now, having a little rant about these BS merchants!
Hope things are good with you. Best wishes
Martin
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