That's inflammatory! Part One: Diet soda

What not to eat if you have autoimmune disease: part one

I know for a fact that lupus is characterized by inflammation. I can only imagine other autoimmune diseases also have inflammation as a characteristic. So wouldn't it behoove us to avoid behaviors and situations that increase inflammation? There are many irritants out there that trigger an immune response.

I can't control the fact that planes fly over my house and pollute the air, or that corporations dump poisons in our water.
And I can't control the fact that much of our food supply is garbage. But I can control what I put in my mouth. I don't have to eat the garbage- that is a choice (though not always an easy one!). And some of the things that are touted as being good for you are actually garbage.

Have you tried to find something healthy to eat in your typical restaurant? Something *not* fried, or laden with fatty sauces, sugar, MSG, salt? I end up defaulting to what I call the "typical girl special": chicken caesar salad with the dressing on the side. To be a true "typical girl special," that would come with a large diet coke. But I have ended my decades- long romance with diet sodas. I tell you, it's like quitting cigarettes. I honestly can't tell you how many times I quit drinking diet soda before I finally succeeded, and I still live in fear I'll fall off the wagon. I just tell myself every time I look at a cold dripping tempting bottle of diet something, "poison." Some sources say that aspartame (a.k.a. "nutrasweet," a.k.a. "Equal," in the blue packet) turns into formaldehyde when it gets into your body. Some say it turns into formaldehyde *before* it enters the body, if the temperature is warm enough. Hawaii tried to ban aspartame (a.k.a nutrasweet) from its food supply, and the US federal government wouldn't let them! (Can you imagine how angry Americans would be if they got to paradise and there was no Diet Coke? "What kind of hellhole is this??! Honey take me home!") There are efforts in other countries to get this stuff out of their food supplies as well, including Ireland and New Zealand. Some theorize that it is a major contributor to Gulf War Syndrome. Others say it causes to birth defects in our children and, in a trial, an 86% *death* rate in monkeys. (http://maintainwealth.blogspot.com/2008/08/aspartame-murders-infants.html ). This "food" has no place in our diets, in our fridges, in our food chain, or in our stores.

I do believe this: there are no casual diet soda drinkers. People either don't drink it, or they chain-drink it like a crack addict, waking up with their first thought being "I gotta have me a hit of diet soda." i have ridden my bicycle to the store in my pajamas to get a diet coke before i would do anything else. It was ruling my day, every day.

I find that getting a monkey off your back is a little more doable if you can find some kind of replacement. I mean I wasn't going to go *caffeine* free on top of ditching the tyrannical nutrasweet. One vice at a time. So, about 9 months after giving up the junk, i am still doing fine drinking filtered or water green tea (which I brew at home) with stevia, a natural sweetener. If I really feel like partying, I have a regular Coke. But I don't do that too often, because it is made with high fructose corn syrup, which is genetically modified (and fattening). I may not be Elle MacPherson, but I am not ready to have my genes modified. And something tells me consuming genetically modified foods is not going to get me any closer to looking like Elle. I hear Mexican Coca Cola is still made with sugar, and there are some natural sodas out there as well, made with juice. And there's seltzer, which is great plain or with a splash of organic juice (read the seltzer bottle- some of it has nutrasweet!!). Of course mankind did pretty well for several eons without sodas to drink.

Many of us with a lupus diagnosis feel like we're being randomly attacked by some mysterious force. But there are some things we can do to limit the likelihood of attack, and one of them is to stop eating garbage.

read more about nutrasweet's dangers:
http://www.sweetpoison.com/aspartame-information.html

coming in part 2: sodium nitrate, vegan diets

Pick your poison

Wow. Comedian Bernie Mac, dead at 50. The papers say it was pneumonia. My husband said "Who dies of pneumonia anymore, especially at age 50?"

Someone who is on immune suppressants, that's who. Bernie Mac had sarcoidosis, an autoimmune disease, and it was being controlled by immune suppressants. The doctors declared his condition to be "in remission," but that remission came at the price of him not being able to fight off pneumonia.

This is frightening for those of us who have been given the choice between dying of kidney failure or having our immune suppressants squashed, leaving us vulnerable to death by pneumonia and other illnesses that would otherwise be life-threatening, were our immune systems not suppressed. What are we supposed to do? I know for a fact I would be dead if I hadn't finally given in and taken the damn prednisone. But I resisted taking it for 8 months because I read about all the side effects and those to me sounded worse than just being in pain. I didn't consider that my vital organs were being attacked.

But at age 25, I was not ready for osteoporosis, diabetes, hair loss, weight gain, mood swings, a giant moon-face, acne, cataracts, immune suppression (meaning, vulnerability to all diseases) and all the other garbage that goes along with long-term high-dose prednisone usage. In retrospect, I think there would be something wrong with me if I *didn't* find this idea objectionable! Who wants to be a fat, moody, moon-faced, blind, brittle-boned diabetic before age 30, if there is any other possible way to deal with their situation? I mean, I was still single. This is no condition to be in on the dating scene. Crap, it's just no way to go through life, especially when your condition is caused by medicine.

What are we supposed to do? Well, according to Mike Adams ("the Health Ranger")... "It's simple: Visit a naturopath, get off all the chemicals and medications, eliminate all the junk from his diet (processed foods, etc.) and transition to a mostly plant-based diet rich in superfoods and living foods. His lung condition would have disappeared and his immune system would have been strong enough to withstand common infections. (He also would have experienced increased energy and lost some excess body fat.)

This is a fine idea, in principle. But Mike Adams, I'm pretty sure, has never had to first-hand deal with either sarcoidosis or any other life-threatening chronic illness involving demoralizing chronic pain. I decided to try the naturopathic approach myself the first time i was ill, and let me tell you- when the disease is in attack mode, unless you have someone making your food for you, and coming to your house treating you, you won't have the energy to do the amount of work it takes to get better using naturopathy alone. There is a lot of shopping for fresh food, driving to appointments, food prep and cleanup. and when i was in the condition I was in in 1992, I had to spend a half-hour working up the gumption to get off the sofa to go to the bathroom.

As much as I detest being on drugs, I've found them to be a "necessary evil" for periods of time in my life. I go on the drugs to stop the disease from destroying my kidneys, lungs, heart, brain, and whatever else it may be attacking, then as soon as I start feeling a bit better, I start doing the things I know I should be doing: acupuncture, gentle exercise, eating less garbage and more real food (fruits, veggies, nuts, beans, filtered water, salmon), and doing things and being with people who make me happy. and reading plenty of comic books. The two approaches work together, and I taper off the drugs as my test results improve. I desperately want to be drug-free, but I more desperately want to have all my original vital organs intact. I am presently not on prednisone. I've never been on it for more than a year, even though my doctors would like to keep me on a "maintenance" dose. I am on cellcept right now (I was on both immune suppressants for 9 months after my last attack), and as long as my tests are OK, I figure one immune suppressant in my life is enough. It's the costlier of the 2 drugs by far, but i get to keep my bones and eyes. SO from that perspective, it's cheaper than cataract surgery and double hip adn knee replacements, both of which, of course, leave you open to staph infection...

Point being, it's our lives. If I don't want to take prednisone, I don't have to. They can't make me. If I were a child, they could probably force my parents to give it to me, but i'm not a child (at least not according to my drivers' license). However, I have to live with the consequences of my decisions, and sometimes taking prednisone for 9 months is better than being in chronic pain while lupus eats away at my vital organs.

Attack of the Killer Kidneys

I've had kidney involvement with lupus since 1992. Or as the docs say, Lupus Nephritis. What it means is the lupus (immune system gone awry) is attacking the kidneys. Not so long ago, say 40-50 years ago, this was a death sentence.

But nowadays, this attack can be halted, and even reversed, with drugs. I've had my kidney function go down to somewhere around 25-30%, told it would never improve, and to be expecting a transplant/ dialysis within 5 years (that was 6 years ago).

In fact, my function has gone this low 3 times (with each lupus flare), and has always returned to normal after getting the lupus under control. The first time we used just prednisone. I also got chelation therapy from an alternative practitioner and went natural with my diet, avoiding gluten and making my own juices. I was on prednisone for about a year, starting at a high dose.

The second time I got sick (lupus flare as they say), I had prednisone, 4 blood pressure meds, chemotherapy (cytoxan) and some other drugs that were for other problems (no fun drugs like marijuana though- gotta move to California!), as well as chelation therapy, diet change (candida diet), herbs, and lots of acupuncture. Again on prednisone for about a year, the other drugs for 1-2 years.

the 3rd time, i refused the cytoxan because it made me so sick, and it has been controlled this time with prednisone (for about a year), cellcept (on this indefinitely- about 18 months so far. it can be very expensive, by the way, depending on your insurance), another blood pressure med, a few other unrelated drugs and acupuncture and diet change (low sugar, low salt, eliminate nutrasweet, avoid gluten). I always go back to my crappy diet. Will i ever learn?

I've had this disease since 1992, and I haven't had to go on diaysis or get a transplant yet.

I do know someone who had lupus, got a kidney transplant, is on some drugs to keep her from rejecting the organ, and hasn't had a recurrence of the lupus for over a decade! so, a transplant is not the worst thing that can happen to you. it was a new lease on life for her. meanwhile, I'm doing OK. I don't have the verve I did when i was completely healthy, but i've found a balance between doing stuff and resting, and hopefully will avoid a 4th "episode" as long as possible- maybe forever? It's possible (must not eat crap. must not eat crap.)

A note on the transplants, and this is really messed up. If you use medical marijuana, you may be refused for an organ transplant, even though the marijuana was prescribed by an M.D. The federal law trumps the state laws in this area. So, if you're in pain and also a candidate for an organ transplant, you're better off using Percocet (even though is causes constipation and is cut with Tylenol, which is toxic to your liver). SO, pop all the pills you want just don't smoke and plants.

So, anyway, if you've got lupus, and lupus nephritis, you'll be OK if you can get your hands on some prednisone (which believe me, they're happy to hand out. My cat and I were on prednisone at the same time once. His was cherry flavored. mine tasted like rat poison. or what i imagine rat poison would taste like). Prednisone sucks, but it works, and it's cheap, and you'll live to tell the tale.

Fibro What? The other F word

During and between the 3 lupus flares I’ve had, one constant has been my companion- fibromyalgia. After the big scares have all passed- my kidneys are no longer failing, I’ve recovered from the stroke, the neuropathy has subsided, I can eat, the fever is gone, etc.- the pain is still there. But I find that the fibro pain doesn’t seem to register with my doctors, because it’s not measurable on a blood test or an X-ray. So over these 16 years of dealing with both lupus and fibro, I’ve been pretty much on my own in dealing with the fibro. I’m sure I’m not alone in my feeling alone.

I have tried so many things to remedy the fatigue, the tightness and pain in my upper back magnify when I lie down and keep me awake at night, the tenderness in my arms, and general irritability.

I tried chiropractic, acupunture, diet change, chi gong, stretching, ignoring and denying, popping lots of advil, massage, capsacum patches, icy hot, heating pad, gentle exercise, not-so-gentle exercise, miscellaneous detoxification methods, stress reduction, meditation, journalling, and staying educated. For me, I’d say the least effective of these techniques has been ignoring and denying, though for some reason I hung onto that one the longest. The most effective? Acupuncture, chi gong, detox (taking greens, using foot detox pads, milk thistle, filtered water, eating lots of fruits and veggies), stress management (such as writing a list of things I’m grateful for on a regular basis, setting realistic goals, and disengaging from people who aggravate me; I also take rescue remedy, a flower essence)), getting enough rest, diet change (getting rid of junk food and diet soda), and having fun. Laughing and smiling releases endorphins, which are our body’s natural pain killers.

Which brings me to one of my favorite therapies- songwriting. In 2002, during the worst of my health problems, I started writing ridiculous songs about my situation. It all started when I was doing the 24-hour urine collection test, where you have to pee in a jug for 24 hours then bring your big jug of pee in to the doctor the next morning. At the time, I was trying to work my way up to being able to play the guitar again (I had had a stroke), and was playing the ukelele. The first song in the uke book was the old folk song “little brown jug.” Back and forth between the frequent bathroom trips (I was on diuretics) and the ukelele, well of course my first parody was called “Little brown jug, about peeing in a jug.”

After this little breakthrough, I spent hours writing every day and brought my song idea notebook to every doctor appointment. Whenever I was left sitting in the waiting room for 2 hours or longer, I’d just sit there and work on my songs. Now instead of it being an indignity, it was an opportunity. And now, not only was I able to laugh about my situation, using humor helped me gain perspective and take back some control. If someone was especially rude to me, but I was in no position to fight back because they were the only doctor in town who took my medical insurance, then I’d wait ‘til I got home and write a song about them (and not usually a very nice one- but in my songwriting and journaling life, I can say anything I want).
[hear the songs: http://www.thesingingpatient.com]

While we can’t control our situation, or the actions of others, or even our bodily functions at times, the one thing we have control over is our response to any given situation. And in the end, that’s the most empowering thing of all. It is our choice whether this “thing” we’ve been given is a horrible burden, or even a gift that helps us to slow down and appreciate things around us that we never noticed when we were moving faster.

Fear Factor: Vitamin D

How interesting, and yet not surprising that we have a vitamin D deficiency in a culture where people spend their entire day indoors or in a car, train, mall, classroom, or bus. Vitamin D comes from: vitamins, vitamin-fortified milk (milk as a "health food" is another topic entirely) or other vitamin-fortified foods and, the only natural source of vitamin D: it is made by the body when the sunlight hits the skin.

A study found that 40% of children are vitamin-D deficient, which can cause thinning bones, rickets, seizures, a weakened immune system. http://www.reuters.com/article/latestCrisis/idUSN02317202 . They also found that drinking a lot of soda and being overweight were also factors that caused demineralization, or leaching of vitamin D and other important nutrients.

I think we as a culture are paranoid about the sun to the point of hurting ourselves by not getting enough of it (with the exception of those who lie in the sun for hours to the point of skin damage). According to this guy http://www.jonbarron.org/blog_published/2008/06/vitamin_d_deficiency_a_silent.html , the incidence of vitamin D deficiency increases in the winter, when there is less sun exposure. And people with darker skin need 3-6 times more the amount of sun exposure than those with lighter skin.

It's a great irony that lupus might be triggered by vitamin D deficiency, because lupus patients are specifically told to *always* avoid the sun. Some of them carry parasols or adjust their schedule so they only run errands after sunset. Those folks definitely need to get some vitamin D.

I am told that calcium doesn't absorb without vitamin D. It seems that folks with lupus really need to take a combination Calcium-vitamin D supplement (doctors usually recommend OsCal, which you can get over the counter), not just to make up for the lack of sun exposure, but also to protect against the bone-thinning caused by drug treatments such a steroids like Prednisone.