Monday, March 29, 2010

raw paleo diet cures lupus? discuss!

This guy says we should all be eating all raw, including raw meat (ew!)
I totally agree that diet has an incredible impact on health, and that we should avoid dairy and processed food.
I've even heard you should avoid the nightshade family of food (tomatoes, potatoes, peppers, eggplants), and i don't eat these foods much at all. They all give me heartburn anyway.
After I learned what margarine was made for- to fatten up turkeys- I gave that up as well. Anything buttery that won't melt? gross.
Eating loads of fresh veggies and fruit? I think everyone agrees with this, even our government, and they're not exactly cutting edge with nutrition.
I'm not so sure i'm ready to give up rice or nuts and seeds, but I will entertain the idea.

And this I know: I darn sure am not eating raw meat.
That just doesn't make sense to me, because I read elsewhere that 100% of lupus patients have low stomach acid. How are we supposed to digest it? And secondly, raw meat is filled with pathogens, and we have suppressed immunity; how are we supposed to fight off things like salmonella- and worms? ew, ew, EW!!!

All the same I am pleased to see someone doing some research on the impact of diet on lupus, because it is something we can control it's not drugs, and it is an affordable cure.
As for my feelings on raw meat?
Well, feel free to disagree.
In fact, discuss.

note: rebuttal article:

Well wishes to you all-

Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer - Carla's book "How Can You NOT Laugh at a Time Like This?"

Thursday, March 25, 2010

why i refuse to step on the scale

OK, seriously?
There's now a $160 scale that will tweet your weight. Meaning, you step on the scale and it posts your weight on for the whole world to see.

No way am I stepping on that scale, or any other scale. Because stepping on the scale and looking at the number, not to mention broadcasting that number, sets off a cycle of obsession and compulsion in me that I can't control. Being female, and American, I am, as required, obsessed with my weight and size. And, as required, I judge and value myself by how big or small I am and how good or bad I look.

The messed up thing is when you're dealing with a chronic illness, you often don't have control over your looks or your size. So now on top of judging yourself for your inability to work full-time, or to do basic things like keep your house clean, or enjoy simple things like going to parties or taking a nice long walk, I get the added bonus of judging myself for how I look and what I weigh when the illness and drugs have drained the color out of my face, made my hair fall out, given me a rash and zits, and made me puff up like a balloon with water retention.

So, no, I'm not getting on the scale. Because somehow, I can magically eat nothing and gain 5 pounds.

Everyone says, when they decide to lose weight (and let's talk about that terminology, shall we? How can "losing" something be good? Let's call it "decluttering." I'm going to declutter my thighs!... ) What was I saying? Oh yes, everyone says they're losing weight for their health. If you're really losing weight for your health, then you should be looking for permanent changes to your diet. What we often see, thanks in part to shows lie the biggest loser, celebrity fit club, bride boot camp, etc., is people making radical changes, eating food they don't like, feeling deprived and hungry for the entire time, doing workouts they despise and ultimately looking forward to the day they can go back to sitting in the la-z-boy eating whatever they like. That is not helping your health. It's not just being overweight that is tough on your body. Losing weight is tough on your system- all that fat getting jogged loose, running through your veins and kidneys- and gaining weight is also hard on your body. In fact, that's what kills most anorexics- their heart fails as they put the weight back *on*. Same with those who have been in concentration camps; they have to be eased back into eating full meals. So, we can't just jerk our bodies around, living irresponsibly most of the time then going on extreme diets here and there to "atone." We have to find something we can live with, period.

In high school, I counted calories. I didn't need to. I was a size 5. I marched witha tuba and did aerobics records- for fun. In college, I gained about 10 pounds, so I went on a slim-fast diet. 2 shakes and 1 meal a day. a couple years later, the same 10 pounds (I guess technically it was a new 10 pounds, built from a new set of calories, but on the scale it was the same number), I went on weight watchers. I was always hungry, but it worked. Once I developed lupus, all bets were off. I lost weight for no reason, without trying, and at first I didn't mind. I'd never been too thin before. Then again, I'd never had kidney failure before, and i'd never been too weak to get out of a chair on my own. Then I went on prednisone and gained 40 pounds in teh first month. Talk about demoralizing! Obviously we all know fat does not equal health. But clearly, thin does not necessarily equal health either. (Do I need to repeat that?) So what equals health? It's not a number, and that is why I am not using the scale.

Health equals vitality. Health equals joy, energy, being able to pursue your dreams, wholeness, wellness, peace, well-being.

According to the world health organization:
"Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity."
See, not even a single mention of weight.

Since developing the illness, the scale does not correctly reflect whether or not I've eaten properly. It doesn't factor in my water retention from kidney issues or drug side effects. it doesn't play by the rules. It doesn't tell the whole story. And it sets off my neuroses, and makes me want to starve myself and do intense exercise, both of which will only make me worse off than if i'd never stepped onto the scale. (Is it any coincidence that the US population has scales everywhere you look and probably more fat people than any other country? I don't think all those scales are helping!)

I do not measure my well-being by a scale.

Does this mean I just gave up and decided to be fat? Hell no! I've just decided this is not a tool that is helpful for me, because my weight fluctuates wildly during the week (well to me 3-5 pounds when you're 5 ' 2" is wildly), and it is more discouraging than helpful.

Instead, I have committed to lifestyle changes that I am working to make both permanent and pleasant. I trust myself enough now not to binge on foods that I shouldn't be eating. I eat what I should be eating to nourish myself- a vegan diet (no wheat, dairy, sugar, meat), and that number will take care of itself, as will all my other numbers. I get blood tests. I go to both the MD and the acupuncturist. If I'm getting worse, they will notice. But I'm not. I'm getting better, and everyone is noticing. I really am doing this for my health.

Since giving up the scale and going vegan, I've tightened my belt 2 notches. Weight loss- excuse me, de-cluttering- is just a bonus, because what i really want is to feel great, to be well, to have energy, and to enjoy healthy food, to find healthy food that I can eat and enjoy for the rest of my life. And there, I've made great strides.

So, no thanks, I'll pass on the fancy scale, and on reading people's weight tweets. Until they come up with a scale that measures my spiritual well-being, I'm way more interested in reading tweets about making tofu tasty.

Sunday, March 21, 2010

making friends with fruits and veggies

so, over the years the various health practitioners I've been to- acupuncturists, osteopaths, etc- have all encouraged me to eat better. And every book I've read recently on *really* getting better from autoimmune disease (not just taking drugs, suffering side effects, then taking even more drugs, then replacing your bones after the drugs eat them) insists that we eat a vegan diet if we want to feel better.

At various times in life since being diagnosed, I've eaten really really well, and then for some reason, probably because I'm surrounded by temptation, I fall off the wagon and go back to my evil ways. And probably not coincidentally, i eventually end up very ill again, with anemia, failing kidneys, lung trouble, migraines, fibromyalgia attacks, exhaustion, etc. You really have to ask yourself: is this diet soda really that tasty that it's worth kidney failure? and chronic pain? Of course, it would probably be easier to resist the diet soda if I started hurting the minute I drank it. but that's not how it works, is it?

Folks in the world of alternative medicine refer to how we eat as the " Standard American Diet" as in SAD. very sad indeed. And although I am grateful to our politicians for attempting to correct the injustices in our health care system, unless we also address the way we eat, we are still going to have a health crisis. I guess we have 2 crises: an insurance crisis and a health crisis.

But the fact is, junk food is delicious, and I love it.
And I was addicted to it. And if you ever want to see how hard it is for an addict to give up a habit, even though it is ruining their life, tune in to "intervention" on A&E, or celebrity rehab, or sober house, or addicted. it doesn't matter if it's heroin, crack, alcohol, or potato chips, and it doesn't matter if you have more money than God. If you're addicted to something, it's a tough row to hoe kicking the habit. It has taken me a lifetime to finally stop drinking diet soda, and I know I could easily end up right back to drinking it under the right (or rather wrong) circumstances. But for now, I want to feel well and vibrant more than I want a diet coke.

In rehab, there are things they can do to make you more comfortable while you're going through withdrawal. for alcoholics, they give them phenylbarbitol. For me, I had regular coca-cola, then stepped down to green tea with stevia, and the occasional seltzer, so i still get my fizz on.

I switched from potato chips to low sodium organic blue corn chips, and now only have them a couple times a week.
I switched from ice cream to rice dream, dairy free "ice cream." And eventually I didn't really crave that either, because it doesn't have that opiate effect that dairy does, that keeps you addicted (and inflamed).

I went from wheat to gluten-free bread. It's not a squishy and tasty, except when I make it in the bread machine from the Bob's red mill mix, in which case it's better than any loaf of store-bought bread you'll ever find.

When people who never really ate much junk food write books about how we should all eat nothing but fruits and veggies I often find it - ahem- hard to swallow. But trust me up until I got sick, I thought a bean burrito at taco bell or a tuna sandwich at subway were health foods.

If a junk food junkie like me can learn to eat better, there's hope for any junk food junkie.

I just had a delicious plate of real food that my old friend's mom introduced me to. it's easy and it's so dang good you won't believe your mouth:

7-8 strawberries, cut up
1/2 small container of blueberries
small container of soy or coconut milk yogurt
about a dozen ground-up or chopped almonds

(You'll need a coffee bean grinder for ground up almonds)
coat the fruit in yogurt, pour the almonds over the top. YUM!

Even my husband liked it, and he's like Mikey: "he wont' eat it- he hates everything!"

lupus survey from Lupus Alliance

New survey from the Lupus Alliance of America up for people with lupus, or parents of children with lupus:

It seems to be targeted towards figuring out how they can help us deal with work, life, etc.
38 questions, takes less than a half hour, worth doing.

Monday, March 15, 2010

supplements without fillers

The latest addition to my collection of daily "stuff " i'm taking is MSM.
I started taking MSM, which I bought in pill form at the drug store, a month or 2 ago after reading "curing your lupus naturally" (an e book). Then I read elswhere that it was really important ot get *pure* MSM, because MSM is a detoxifier; it absorbs toxins. So if the MSM you buy is not pure, it's going to be saturated with the fillers that are used with it.
So I went on the hunt for a place where i could get MSM that had nothing but MSM in it.

Its a powder, and can i say it tastes disgusting, like I might imagine liquified prednisone to taste, but at least MSM doesn't make me bloat, stay up all night and go into raging scream fits.

And here's my favorite thing about MSM: it kills yeast!! yay! (prednisone proliferates yeast).

I also went toa more pure form of DHEA. I was buying pill form of that, and heard it was far less effective, perhaps not effective at all. And I have since used the DHEA to squelch sudden pains like a jammed toe. Surprisngly effective.

Nutshell: worth the extra $ to get the best form of supplements and herbs.

Sunday, March 14, 2010

tips for folks with fibro

here's a fantastic article loaded with tips on alternative treatments (alternative to drugs) for fibromyalgia:

Natural news has a free e newsletter which I believe comes daily. Full of great tips on all sorts of things related to living and eating well.

Thursday, March 11, 2010

Keeping an Open Mind

I really hate living in a neighborhood with an HOA (Home Owners' Association). I look forward to the day when we can sell this stupid place and get out from under the $300/ month fees we pay, which are used for half-million dollar unnecessary paving projects and annoying landscapers who use leafblowers every tuesday from 7am to 4pm, and random jackhammer projects also starting at the crack of dawn. Then, when I have a valid concern, such as the fact that my gutters drain into my driveway instead of the garden, turning my driveway into a sheet of ice every time it snows/ melts/ refreezes (which was pretty much 3 solid months this year), and I bring it up, the answer, before I even finish stating the problem is "NO, we can't change it, can't afford it, can't change things from the original plans, don't even bother asking, not gonna happen."

Every time I go to the car it's a serious challenge not to fall and break my neck. And what would a project like re-routing gutters from the driveway to the garden on the front side of one unit cost? A helluva lot less than a half million dollar paving project, which, by the way, no one in the community wanted, except the people on the board and the lawyers who shouted us down in the meeting. I will never go to another homeowners' meeting again, because they are not interested in the voices of the homeowners. It was so one-sided, us against them, the people who actually own the homes being shouted down by the board who supposedly represents us, and the lawyer and management company who are paid for by our fees, that the entire group of homeowners, during this meeting were muttering about moving out. If we all could have sold our homes right there on the spot, there would have been a mass exodus. But we are all powerless, and they know it.

What has this got to do with anything? It's exactly like being a patient in the so-called health "care" system. We pay tons of money and instead of getting cared for, we are abused, ignored, not listened to, and when we have valid concerns, they are often not addressed. (I realize there are a few good doctors out there, but I'm talking about the general experience, the majority of what's going on out there). And just like the stupid HOA, there is nowhere else to go. It's not like you can choose to not be sick and poof, you're not, anymore than I can just unload my house (like everyone else, we can't sell until and unless it goes back up- WAY back up in value. we're trapped, just like anyone with a chronic illness).

I'm rambling, and that's because I'm really mad.
But bottom line what makes me mad about both health care and the stupid HOA, who can kiss my septic tank (i'm not letting them near my butt- I don't trust them!), is that these people are PROBLEM-FOCUSED! They refuse to even look for solutions. I have a problem, they say too bad, stuff it. But when it's their problem, every bit of everyone's resources goes towards dealing with it- without even thinking maybe there's a cheaper way to deal with this, so there's some resources left over when someone else has issues that need to be addressed. everything goes toa few, nothing to everyone else, despite the fact that everyone contributes. Both the HOA and health care.

Concrete example from health care: chelation therapy. Cheaper, by 10-fold, and far far safer than open-heart surgery. Chelation therapy removes plaque from arteries by a safe IV drip treatment given about 2 times a week, for about 20-40 treatments. cost, around $5000. No one dies from chelation therapy. No one. Heart surgery is $50,000 plus. The death rate for open-heart surgery are 2-5%. If the death rate for chelation therapy was that high, it would be shut down. Meanwhile, cardiologists get chelation therapy for themselves, but refuse to tell their patients about it.

The only way out of these corrupt, unjust systems is to not participate. And in order to do that, you have to take charge, be solution oriented, think beyond the obvious worn-out solutions, (not all diseases are caused by genetics are viruses, and drugs are surgeries are not the only solutions; not only that, they are not very good solutions in most cases- come on research people, use your brains! If the Easter egg wasn't behind the tree the last 10 times you looked, maybe it's time to look somewhere else! Of course, if drug companies are funding the research, the research is only going to be on drugs. Until the broccoli foundation starts funding some trials, we're not going to learn about the effects of diet on well-being. No real money to be made in broccoli, it seems).

Unlike some people who shall remain nameless (and faceless, and obnoxious and in control of the homeowners' association), in order to deal with my problems, whether they be my household or my health, my first reflex is not to throw a ton of money at the problem. In most cases, you can't buy solutions to your problems. You ask other people how they dealt with it, or a similar problem. You picture what a solution would look like. You educate yourself. You try things, even when people call you crazy. You keep trying things. You keep what works, and ditch what doesn't. You surround yourself with people who believe there is hope. You never give up, and you never accept "there is no answer" as an answer. That wasn't acceptable in 8th grade algebra, and it's not acceptable now.

One day I will escape the tyranny of the HOA, and I will never look back, lest I too turn into a pillar of bureaucratic BS. And one day, too, I will escape the tyranny of lupus, fibro, and all the other related syndromes that have attached themselves to what should be my well-being. I will be happy, I will be whole, I will be free. Mark my words. I am looking for and working towards solutions every day. I will not be oppressed!

keep looking

Thought for the day:
"Never must the physician say, the disease is incurable. By that admission he denies God,
our Creator; he doubts Nature with her profuseness of hidden powers and mysteries."

Quoted from the last page of the book "THE MEDICAL FOLLIES" printed
in 1925 and written by Morris Fishbein, M.D.
Editor of the Journal of the American Medical Association

Seriously- JAMA!

sun, tanning, lupus

Like all the rest of you with lupus, I had to give up sun-worship.
This makes me incredibly sad for several reasons.

I love being outside in warm weather. I love the beach. I love to swim. I love lying in the sun like a lizard and getting all hot, then diving into cold water. And now when I'm outside in the sun for any amount of time, I can't enjoy myself because I'm filled with anxiety about whether my enjoyment is going to cost me my kidneys. I miss the doses of natural vitamin D and the smile a sunny day puts on my face. I feel like a vampire.

Aside from eradicating lupus from my life, which I'm always working on, I don't have any solution to all this.

But I do have a tiny temporary occasional solution to the one other reason I grieve my sun-worshipping days (I also miss how great I look with a tan, sun-kissed hair). I met someone in an acting class I was taking who does spray-tanning in NY city, and she uses all natural ingredients.
So, I think I might, for a special occasion (friend's wedding in July) treat myself to a "tan" just once, so I can feel like myself.

Meanwhile, I have found that when my lupus is under control, I can spend small amounts of time in the sun (not long enough to get a burn- like 10-15 minutes) and have no ill effects. Obviously, we have to be very careful with this, but FYI, some of us do become less sun-sensitive when the disease goes into remission.

Carla Ulbrich

The Singing Patient: Author, Survivor, Humorous Songwriter and Entertainer - Carla's book "How Can You NOT Laugh at a Time Like This?"