I've gotten the stomach flu twice since getting lupus and lost 3 weeks to it. i was in the bathroom for a week both times, and shaky and wornout for the next 2. and let's just say i'll never eat chocolate chip ice cream again.
I don't know if our immune system is really stronger, as is suggested by some doctors (those with immune systems having "hyperactive" immune systems) or if it's just confused, and going after the wrong things.
Columnist Dr. Paul G Donahue, MD, says "Lupus isn't a blood disease. It is more like an illness, such as rheumatoid arthritis. It's one of those many illnesses where the immune system turns against its own body. It produces a slew of antibodies — immune system grenades — and tosses them at many organs."
Most people in alternative medicine would say our bodies are overloaded with toxic stuff - chemicals pesitcides, colorings, etc. That are now part of modern life (autoimmune disease rates have tripled in the last 4 decades, so i don't think it's genetic!)
So, grenades. Good metaphor. Maybe it's like the war on terror. While we're distracted fighting in Iraq (lupus/ attacking our own healthy tissue because it's been infiltrated by foreigners), other terrorist cells (cells! ha!) are sneaking around in other parts of our bodies wreaking havoc. Sadly i don't think you can win a war on terror. Best we can hope for is a tenuous peace, which is the same we hope for with lupus. i'd love to eradicate it, but i think the best we can hope for is a long deep or even permanent remission.
so why do i think we get sicker longer with things like the flu? well for one thing, out defenses are down if we're on immune suppressants such as prednisone, plaquenil, cellcept, etc.- IOW most of the drugs that are thrown at lupus. If not the drugs, then the war on terror theory. Like an army stretched too thin, our T cells can only be in so many places at once, then it runs out of resources. Maybe a combination of both.
Those in alternative medicine suggest, and my experience has borne this out, that reducing irritants helps lessen symptoms as well as reduce the needed amount of meds to control lupus and other autoimmune diseases. It is commonly suggested to go on either a gluten-free, yeast-free, or low-fat vegan diet. My 18 months on the Candida diet, I felt great and I was my ideal weight. I fell off the wagon, and while I try to at least limit my gluten intake, it really needs to be a completely gluten-free diet to make any difference.
Jenny McCarthy has just released a book about her experience healing her son from Autism. His autism set in the moment he received a large dose of multiple vaccines, and over the course of several years on a gluten-free, dairy-free diet (watch for hidden dairy and gluten in many products), and much unconditional love, he came out of it and is now a loving, outgoing child. The Center for Disease Control dismisses her amazing story as "anecdotal." Anecdotes are where breakthrough science begins, if it is sincerely interested in healing (and not controlled by those who want to sell us drugs and vaccines). Jenny refers to her son's autism as both "autism" and a "vaccine injury," and while she hesitates to say he is healed, because she feels that his autism could be re-triggered by environmental and dietary toxins, she does say he is recovered. A tenuous peace.
I believe we can find a tenuous peace with lupus and be on few or no drugs. But we have to be willing to make some tough choices and be disciplined about our diets, and to experiment a bit 'til we find what works for us. It's hard work (who wants to give up pizza?), and some folks are going to think you're crazy. But in my experience, being sick is hard work, even more people think you're crazy (hypochondriac anyone? lazy? all in your head?). And it sucks a lot more.
Friday, October 17, 2008
Monday, September 1, 2008
Hands offa my kidneys!
The evil kidney biopsy is on my list of 15 least medical procedures, along with catheter and root canal. the thing about kidney biopsy is that while your doc may tell you it is necessary, many other docs will tell you it is not. and according to whatever book it was i was reading the first time i was *told* I *needed* a biopsy, these biopsies are a matter of debate among docs as to whether they are necessary and whether they even provide any useful information.
As far as I can tell, there's no real upside to getting a biopsy.
However, there are definite downsides. There are major arteries in the kidneys. if they happen to hit one while rooting around trying to snip a few pieces of tissue off your kidney, you can have a dangerous amount of internal bleeding. if you are a bleeder, like me, you may spend all day in the hospital receiving anti-coagulants until it's safe enough for them to do the test (my 2nd biopsy). or they may choose to instead play it safe and do an open biopsy (cut you open) so they can see what they're doing better. if this is the case, you will be put under general (complete) anesthesia, intubated, both of which are not without risk, in a hospital, which is teeming with germs. then you may (as i did) get infected and have green puss oozing out your side. in my case I'm allergic to so many antibiotics i decided to kill it off myself by taking 60 garlic pills a day. in the summer. with no air conditioning. (on the other hand, i was completely safe from vampire attacks). (my first biopsy).
both times i was told it might be a class 4, whatever that means, and both time i was told there was "not enough tissue."
i really suspect this test at best is a useless exercise, and at worst an invasive and unnecessary way to make money off the backs of and at significant risk to patients.
There will not be a 3rd biopsy on my kidneys.
they can get the info i need from urinalysis and blood draws.
As far as I can tell, there's no real upside to getting a biopsy.
However, there are definite downsides. There are major arteries in the kidneys. if they happen to hit one while rooting around trying to snip a few pieces of tissue off your kidney, you can have a dangerous amount of internal bleeding. if you are a bleeder, like me, you may spend all day in the hospital receiving anti-coagulants until it's safe enough for them to do the test (my 2nd biopsy). or they may choose to instead play it safe and do an open biopsy (cut you open) so they can see what they're doing better. if this is the case, you will be put under general (complete) anesthesia, intubated, both of which are not without risk, in a hospital, which is teeming with germs. then you may (as i did) get infected and have green puss oozing out your side. in my case I'm allergic to so many antibiotics i decided to kill it off myself by taking 60 garlic pills a day. in the summer. with no air conditioning. (on the other hand, i was completely safe from vampire attacks). (my first biopsy).
both times i was told it might be a class 4, whatever that means, and both time i was told there was "not enough tissue."
i really suspect this test at best is a useless exercise, and at worst an invasive and unnecessary way to make money off the backs of and at significant risk to patients.
There will not be a 3rd biopsy on my kidneys.
they can get the info i need from urinalysis and blood draws.
Friday, August 29, 2008
Post-partial depression
Last week I wrote about my visit to the dentist and how much the Novocain shot hurt. I actually had to get two shots, because I could still feel the drill after the first one. But the drill didn't really hurt, so I asked the dentist not to give me a second shot, but she did anyway. The second that Novocain entered my system I instantly felt like crying.
Several days later, I gathered enough of my senses to look it up online. Once i finally figured out how to spell Novocain, it all fell into place. (FYI, the generic version has an "e" at the end, and if you search online using this spelling you will find a song by Green Day and a weird movie of the same name).
According to Drugs.com, the FDA advises using as low dosage as possible to avoid adverse side effects. And warns against using Novocain on patients with known drug allergies, of which I have several. (Several drugs give me a full-body rash, one makes my tongue swell up, one makes me hurl, and latex makes my skin fell like it's burning.) So, with several drug allergies listed on my chart, why did I get not one, but *two* shots? I ended up with a 6-day attack of fibromyalgia, of which I had been free for several months, severe anxiety, and major mood swings. All of which ended after 2 back-to-back and lengthy acupuncture treatments, but if I did not have a fantastic and available acupuncturist, i would still be suffering instead of sitting here typing about this in past tense.
The main lessons I want to share from this experience are these:
First of all, if you have drug sensitivities, you may not want to use Novocain. l have learned, via my pointing and clicking, that there is a far more hypoallergenic drug available that will give the same numbing, called Lidocaine. In the future, I will list Novocain (and Novocaine) as a drug allergy, so that I do not have to go through this again. It would probably be wise to do a detox of some sort an such an injection as well, since these things have to be metabolized by the liver. (I already take milk thistle every night because I take prescriptions every day).
Second of all, before embarking on major dental procedures, make sure your body is ready to handle the trauma. Yes, trauma. It is important to deal with cavities and broken teeth, as they can lead to larger problems, but make sure you are ready, or at least that you have some form of support (such as acupuncture, or another form of complementary medicine) to help you get back to yourself afterwards. We don't need to volunteer for a setback in our efforts to regain our health.
Third, always remember you are in charge. When the dentist starting grinding on my good tooth to make it match up with the new porcelain inlay on the tooth below it, I told her to stop it. When I go for my next cleaning, I am *not* going to do the fluoride treatment, which they handed me to swish around my mouth without asking me if I wanted it, and for which my insurance did not pay. I do not care about the money as much as the fact that Fluoride is a chemical. It is toxic. Its benefits are questionable, and its toxic qualities are a frequent topic of discussion in Europe, where they do *not* allow Fluoride in the water supply. The US drinking water supply is routinely fluoridated, as are most toothpastes. There are only a few toothpastes out there that do not contain fluoride, such as Tom's of Maine (I love the cinnamint flavor). I don't need any more toxic crap in my body than is already dumped there on a daily basis through air pollution, pesticides, flame retardants in fabrics, and Lord knows what else- I'm not going to volunteer to have more chemicals in my body! Read about fluoride, both sides of the discussion, from more than one source, and make your own decision.
Several days later, I gathered enough of my senses to look it up online. Once i finally figured out how to spell Novocain, it all fell into place. (FYI, the generic version has an "e" at the end, and if you search online using this spelling you will find a song by Green Day and a weird movie of the same name).
According to Drugs.com, the FDA advises using as low dosage as possible to avoid adverse side effects. And warns against using Novocain on patients with known drug allergies, of which I have several. (Several drugs give me a full-body rash, one makes my tongue swell up, one makes me hurl, and latex makes my skin fell like it's burning.) So, with several drug allergies listed on my chart, why did I get not one, but *two* shots? I ended up with a 6-day attack of fibromyalgia, of which I had been free for several months, severe anxiety, and major mood swings. All of which ended after 2 back-to-back and lengthy acupuncture treatments, but if I did not have a fantastic and available acupuncturist, i would still be suffering instead of sitting here typing about this in past tense.
The main lessons I want to share from this experience are these:
First of all, if you have drug sensitivities, you may not want to use Novocain. l have learned, via my pointing and clicking, that there is a far more hypoallergenic drug available that will give the same numbing, called Lidocaine. In the future, I will list Novocain (and Novocaine) as a drug allergy, so that I do not have to go through this again. It would probably be wise to do a detox of some sort an such an injection as well, since these things have to be metabolized by the liver. (I already take milk thistle every night because I take prescriptions every day).
Second of all, before embarking on major dental procedures, make sure your body is ready to handle the trauma. Yes, trauma. It is important to deal with cavities and broken teeth, as they can lead to larger problems, but make sure you are ready, or at least that you have some form of support (such as acupuncture, or another form of complementary medicine) to help you get back to yourself afterwards. We don't need to volunteer for a setback in our efforts to regain our health.
Third, always remember you are in charge. When the dentist starting grinding on my good tooth to make it match up with the new porcelain inlay on the tooth below it, I told her to stop it. When I go for my next cleaning, I am *not* going to do the fluoride treatment, which they handed me to swish around my mouth without asking me if I wanted it, and for which my insurance did not pay. I do not care about the money as much as the fact that Fluoride is a chemical. It is toxic. Its benefits are questionable, and its toxic qualities are a frequent topic of discussion in Europe, where they do *not* allow Fluoride in the water supply. The US drinking water supply is routinely fluoridated, as are most toothpastes. There are only a few toothpastes out there that do not contain fluoride, such as Tom's of Maine (I love the cinnamint flavor). I don't need any more toxic crap in my body than is already dumped there on a daily basis through air pollution, pesticides, flame retardants in fabrics, and Lord knows what else- I'm not going to volunteer to have more chemicals in my body! Read about fluoride, both sides of the discussion, from more than one source, and make your own decision.
Friday, August 22, 2008
Jaw-dropping day at the dentist
oh if only my dentist was as wacky as Steve Martin.
so far, i have survived visit 2 of 3 scheduled visits in the remodeling of my mouth (structural, not cosmetic- getting my first cleaning in 14 years, 2 molars restored with porcelain and a nightguard made. you night-grinders know what this is: we get to look like Rocky every night. Such a turnon! the only thing sexier than seeing your mate wearing a big rubber mouthguard is watching them take it out and seeing spit flying everywhere. Oh yeah!)
i have dental insurance (thank you, hubby's job) so about 2/3 of the cost is covered so far, but i fear i may be about to hit a cap. or is it a crown. HAHAHAHA. just a little tongue-in-cheek humor. HAHAHAHAHA
no they didn't give me laughing gas. and dang i coulda used some. my fear and loathing of the dentist outstrips my fears of both new york city and Best Buy. stay tuned to lupusandhumor and learn all Carla's neuroses, one by one.
the worst part for me is the novacaine shot. crap it hurts! i had to get 2 shots today- 1st one wasn't enough. i hate shots, i hate needles, i get more of each every year than McCain has houses. i never get used to it. you're being injured when someone stabs you in the vein and takes out, oh 20 vials of blood. but that's another story, one covered quite thoroughly on my "Sick Humor" CD and in my previous blogs.
Anyway today's visit was 3 hours and $750. oh but they validated my parking, so that was free.
Next time, and I'm not kidding, I'm bringing a blanket (too cold in there), sunglasses (flourescent light glaring in my eyes), a teddy bear, and Joe to drive me because- no kidding- I'm going to dope up on either attivan or a muscle relaxer. or both. they'll have to hold my jaw open. i'll be so zonked i'll have to wear wear a bucket to catch my drool. I'm exaggerating- but this is what I must promise myself, if I am to get motivated to go back for more torture in 2 weeks. I think i've found something I hate more than a pap smear.
When I told the dentist that i had these drugs in my cabinet (ok, bowl of bottles on my counter, not very feng shui, but i never forget my important meds), she looked jealous and said "wow." i told her if she wanted lupus, she could probably get some heavy drugs too (but I don't recommend it). It drives me crazy when people get jealous of folks with lupus ("oh i wish I could lay in the bed and read!"- after I had a stroke! I wished I could lay in the bed and read, too, but i see spots and zig zags all day long!) Point is, if your life is so messed up that you're jealous of someone with a debilitating chronic illness, first of all, keep it to yourself, and second of all, it's time for you to change your situation. Oy!
Anyway to find out why I'm putting myself through all this, tune in later for That's Inflammatory! Part 5
(I have no idea how many parts there will be to this series! I'll keep writing til my sed rate is zero).
so far, i have survived visit 2 of 3 scheduled visits in the remodeling of my mouth (structural, not cosmetic- getting my first cleaning in 14 years, 2 molars restored with porcelain and a nightguard made. you night-grinders know what this is: we get to look like Rocky every night. Such a turnon! the only thing sexier than seeing your mate wearing a big rubber mouthguard is watching them take it out and seeing spit flying everywhere. Oh yeah!)
i have dental insurance (thank you, hubby's job) so about 2/3 of the cost is covered so far, but i fear i may be about to hit a cap. or is it a crown. HAHAHAHA. just a little tongue-in-cheek humor. HAHAHAHAHA
no they didn't give me laughing gas. and dang i coulda used some. my fear and loathing of the dentist outstrips my fears of both new york city and Best Buy. stay tuned to lupusandhumor and learn all Carla's neuroses, one by one.
the worst part for me is the novacaine shot. crap it hurts! i had to get 2 shots today- 1st one wasn't enough. i hate shots, i hate needles, i get more of each every year than McCain has houses. i never get used to it. you're being injured when someone stabs you in the vein and takes out, oh 20 vials of blood. but that's another story, one covered quite thoroughly on my "Sick Humor" CD and in my previous blogs.
Anyway today's visit was 3 hours and $750. oh but they validated my parking, so that was free.
Next time, and I'm not kidding, I'm bringing a blanket (too cold in there), sunglasses (flourescent light glaring in my eyes), a teddy bear, and Joe to drive me because- no kidding- I'm going to dope up on either attivan or a muscle relaxer. or both. they'll have to hold my jaw open. i'll be so zonked i'll have to wear wear a bucket to catch my drool. I'm exaggerating- but this is what I must promise myself, if I am to get motivated to go back for more torture in 2 weeks. I think i've found something I hate more than a pap smear.
When I told the dentist that i had these drugs in my cabinet (ok, bowl of bottles on my counter, not very feng shui, but i never forget my important meds), she looked jealous and said "wow." i told her if she wanted lupus, she could probably get some heavy drugs too (but I don't recommend it). It drives me crazy when people get jealous of folks with lupus ("oh i wish I could lay in the bed and read!"- after I had a stroke! I wished I could lay in the bed and read, too, but i see spots and zig zags all day long!) Point is, if your life is so messed up that you're jealous of someone with a debilitating chronic illness, first of all, keep it to yourself, and second of all, it's time for you to change your situation. Oy!
Anyway to find out why I'm putting myself through all this, tune in later for That's Inflammatory! Part 5
(I have no idea how many parts there will be to this series! I'll keep writing til my sed rate is zero).
Monday, August 18, 2008
That's inflammatory! Part 4
The Biblical Diet is the focus of Part 4 of this series.
Who would know better than our Creator what makes our bodies function properly, and give us overall well-being? Feeling whole in body creates a calm in our minds and souls and helps us in every area of life.
~~~~~
Meat:
~~~~~
Beef: on special occasions
Lamb: on special occasions
Pork: never
Shellfish: never
Domestic Fowl: chickens, geese, pigeons, partridges, duck and quail: more frequently
Fish: frequently
animal fat and blood: never
Some folks might think God was a vegetarian, Apparently not. We are instructed to eat red meat, such as beef or lamb, but *sparingly*, meaning on special occasions. Not daily, or even weekly. Just at feasts or festivals. We are instructed *not* to eat pork or shellfish *at all*. Maybe that's why Jesus fed the masses with loves and fishes, not loaves and ribs. When i asked my Jewish roommate why Jews did not eat pork or shellfish she said "It's because they eat garbage." OK! That's a good enough answer for me!
Animal fat and blood are where the toxins are stored. For me, the idea of eating either is so repulsive, I don't need a reason to not eat it, but if this is a delicacy for you, then know this is where the most toxic stuff is.
~~~~
Fats:
~~~~~
eat only 30% of your calories from fat
Olive Oil (virgin or extra virgin only): 2 thumbs up
Canola Oil: 2 thumbs up
canola, safflower and sunflower: also good
butter: in moderation
margarine: avoid
cheese: in moderation
~~~~~~~~~
Grains
~~~~~~~
wheat- good if it's not refined
barley - ditto
millet- ditto
Spelt: highly recommended
legums (beans): strongly recommended (try not get to overprocessed salty canned beans)
Spelt has never become a mainstream grain, and so of all the grains, it is a rare one in that it is still in its original form. The spelt seeds of today are just like the spelt seeds of biblical times. Wheat has been manipulated and modified so many times that a large part of our population has become intolerant to wheat, in the forms of celian disease, gluten intolerance, and carbohydrate addiction.
~~~~~~~~~~~~~~~~~~~
Fruits and Vegetables:
~~~~~~~~~~~~~~~~~~
Eat lots of these!
veggies: leeks, onions, garlic and cucumbers: yes!
Fruits: apples, figs, grapes, berries, apricots, melons and pomegranates, grapes, olives.
in the Bible, fruits were eaten fresh, dried, pressed into cakes, and squeezed for juice. But beware, fruit juice on the typical grocery store shelf can contain as little as 10% juice. It cna also contain a *lot* of pesticide. You want organic 100% juice, which you can either buy or make yourself.
Yes, it is more work and costs more to eat well. It takes more effort to find healthy food (in Harlem, you have to travel 45 minutes each way to buy a tomato!). But what good is it for modern medicine to keep up alive to 100+ years old if we are riddled with disease. The cure for many ills is to simply stop eating and drinking garbage. Granted, if I eat garbage, then I won't be kosher, and if I run across a kosher cannibal, they won't want to eat me. But even taking into account that one potential encounter, the odds are still pretty low that eating garbage will save my life.
However, my odds of inflammation are 100% if I eat garbage, and my odds of heart disease and obesity are quite high. When you survey people and ask them if they want to live to be 100, the answer is always "it depends.." on what? Most people are afraid they will be sickly. If you could guarantee they would have their health, then the answers would be quite different.
We are not victims. yes, some of us have more health problems than we deserve, while others *do* eat garbage and seem to never gain weight or have other consequences. But most of us *know* in our hearts that if we want peak performance from our bodies and minds, we should be fueling our bodies real food, not cartoonish boxes of "fun food."
It's tempting, but I will not purchase a box of "relacore" or whatever the latest fad diet pill is on TV (that will probably later prove to be the cause of many heart attacks), nor will i be getting liposuction (have you ever seen footage of this violent invasive procedure?), so that I can keep on eating whatever I please.
Eating real food also appeals to the rebel in me who wants to thumb their nose at the system and say "I'm not buying into your crap! You can't control me with your ads and your promises of something for nothing!"
So if you can't get motivated by doing what the Lord recommends, or by knowing you're taking back control of your health, then do it to get back at The Man.
Who would know better than our Creator what makes our bodies function properly, and give us overall well-being? Feeling whole in body creates a calm in our minds and souls and helps us in every area of life.
~~~~~
Meat:
~~~~~
Beef: on special occasions
Lamb: on special occasions
Pork: never
Shellfish: never
Domestic Fowl: chickens, geese, pigeons, partridges, duck and quail: more frequently
Fish: frequently
animal fat and blood: never
Some folks might think God was a vegetarian, Apparently not. We are instructed to eat red meat, such as beef or lamb, but *sparingly*, meaning on special occasions. Not daily, or even weekly. Just at feasts or festivals. We are instructed *not* to eat pork or shellfish *at all*. Maybe that's why Jesus fed the masses with loves and fishes, not loaves and ribs. When i asked my Jewish roommate why Jews did not eat pork or shellfish she said "It's because they eat garbage." OK! That's a good enough answer for me!
Animal fat and blood are where the toxins are stored. For me, the idea of eating either is so repulsive, I don't need a reason to not eat it, but if this is a delicacy for you, then know this is where the most toxic stuff is.
~~~~
Fats:
~~~~~
eat only 30% of your calories from fat
Olive Oil (virgin or extra virgin only): 2 thumbs up
Canola Oil: 2 thumbs up
canola, safflower and sunflower: also good
butter: in moderation
margarine: avoid
cheese: in moderation
~~~~~~~~~
Grains
~~~~~~~
wheat- good if it's not refined
barley - ditto
millet- ditto
Spelt: highly recommended
legums (beans): strongly recommended (try not get to overprocessed salty canned beans)
Spelt has never become a mainstream grain, and so of all the grains, it is a rare one in that it is still in its original form. The spelt seeds of today are just like the spelt seeds of biblical times. Wheat has been manipulated and modified so many times that a large part of our population has become intolerant to wheat, in the forms of celian disease, gluten intolerance, and carbohydrate addiction.
~~~~~~~~~~~~~~~~~~~
Fruits and Vegetables:
~~~~~~~~~~~~~~~~~~
Eat lots of these!
veggies: leeks, onions, garlic and cucumbers: yes!
Fruits: apples, figs, grapes, berries, apricots, melons and pomegranates, grapes, olives.
in the Bible, fruits were eaten fresh, dried, pressed into cakes, and squeezed for juice. But beware, fruit juice on the typical grocery store shelf can contain as little as 10% juice. It cna also contain a *lot* of pesticide. You want organic 100% juice, which you can either buy or make yourself.
Yes, it is more work and costs more to eat well. It takes more effort to find healthy food (in Harlem, you have to travel 45 minutes each way to buy a tomato!). But what good is it for modern medicine to keep up alive to 100+ years old if we are riddled with disease. The cure for many ills is to simply stop eating and drinking garbage. Granted, if I eat garbage, then I won't be kosher, and if I run across a kosher cannibal, they won't want to eat me. But even taking into account that one potential encounter, the odds are still pretty low that eating garbage will save my life.
However, my odds of inflammation are 100% if I eat garbage, and my odds of heart disease and obesity are quite high. When you survey people and ask them if they want to live to be 100, the answer is always "it depends.." on what? Most people are afraid they will be sickly. If you could guarantee they would have their health, then the answers would be quite different.
We are not victims. yes, some of us have more health problems than we deserve, while others *do* eat garbage and seem to never gain weight or have other consequences. But most of us *know* in our hearts that if we want peak performance from our bodies and minds, we should be fueling our bodies real food, not cartoonish boxes of "fun food."
It's tempting, but I will not purchase a box of "relacore" or whatever the latest fad diet pill is on TV (that will probably later prove to be the cause of many heart attacks), nor will i be getting liposuction (have you ever seen footage of this violent invasive procedure?), so that I can keep on eating whatever I please.
Eating real food also appeals to the rebel in me who wants to thumb their nose at the system and say "I'm not buying into your crap! You can't control me with your ads and your promises of something for nothing!"
So if you can't get motivated by doing what the Lord recommends, or by knowing you're taking back control of your health, then do it to get back at The Man.
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