The Definition of Health, and my quest to settle for nothing less

I think of health as a spectrum.On one end, you're dead. On the other, you're flourishing.

Anyone who's everhad a houseplant or a garden knows the difference between a dead plant and a live one, and also the difference between a plant that is doing OK and one that is flourishing.

The World Health Organization defines "health" as:
"a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity."

Let that soak in.
Not merely the absence of disease.
Complete well-being.

When we are diagnosed with a chronic illness, we are told to "accept" our illness and to settle for something far less than the WHO's definition of health. We are told by our doctors that such a dream is now unattainable for us. I have refused to believe this from Day 1. I do not and will not accept it.

I have tried all kinds of alternative medicine over my 21 years since being diagnosed. A lot of it has helped me tremendously, and I've been able to taper off all the lupus and blood pressure drugs, each of the 3 times I've had a flare. And my flares are not minor. They involve kidney failure, congestive heart failure, pleurisy, anemia, and even a stroke. Not mention hair loss, weight loss, fever, exhaustion, neuropathy and chronic pain. (OK I just mentioned those).

Our mainstream doctors are trained to treat us with only 2 tools: prescriptions and surgery. Yes, prescriptions such as prednisone are the reason I am still alive and able to sit here and type about anything at all. 50 years ago, lupus was a death sentence. So I definitely appreciate the existence of life-saving drugs, and I take them when I'm in trouble. I am NOT anti-drug.

However, long-term prescription use is *always* going to have consequences. And sometimes those consequences are very serious. And anyway, drugs can't get you to "flourishing." They can get you to the "not dead" zone, or even the "OK" zone, which is the best we're told top hope for. But being diagnosed in my early 20s, I wanted more than just getting by with "OK" for the next 40-60 years.
(Especially since "OK" seemed to mean, from the folks I saw at support groups back then, being 50-100 pounds overweight from the steroids, and thin to no hair. And in some cases, frequent surgeries to replace bones eaten by the steroids. How was this OK?).

Thus, my search for better answers all this time. I wish I could type up every single thing I've tried in one concise blog post, but we're talking 21 years of experiments on myself. And what works for one person doesn't always work for another.

However, there are 2 basic, sustainable habits I would recommend every lupus patient try:

- Qi Gong (also spelled chi gung). This is a deep-breathing, slow-moving Chinese art much like Tai Chi. Make sure you find a practitioner/ DVD that teaches healing chi gung, not warrior chi gung.

- diet modification (eliminating gluten, dairy, eggs, diet soda, sugar). This can be done on your own, or with a health coach, or setting up a pair or more of you to do it together. Or you can do what I did, and get a system that makes it very easy. Here is the system I've been using for the last 63 days. It's both really nutritious *and* it detoxes your system. It has completely eliminated my need for narcotics and I have slimmed down by 6 pounds with no exercise. I'm really pleased with this.

http://www.isagenix.com/en-US/Isamovie#cat=weightLoss&vid=9jeIL82Of9I

Cheers and good health!

Carla
The Singing Patient
carla@thesingingpatient.com

http://www.thesingingpatient.com

Candy-free Halloween?! Yes!

This year, I decided to give out trinkets instead of candy.
I did not want to be the house that gave out raisins, or apples, or kale.
Or, as happened in my neighborhood when I was a kid, a penny. yay.

I was relieved to see my plan actually went over really well.
http://youtu.be/nvMulj54JDk

Happy Halloween! Carla

http://www.thesingingpatient.com

Day 33: What's Great About Fasting!?

Day 33 on nutrition plan!
I decided to make today (and tomorrow) cleanse days.
On this plan, that means pretty much no food, but lots of water and also 4 ounces, 4 times a day of a cleansing drink containing detoxifying herbs.
The directions say "enjoy 4 ounces," but I don't really care for the taste that much, so I'm take the "enjoy" part as optional, and just drink it. Like all directions, I take them as suggestions (yes, I'm a middle child).

I am still feeling good- no shoulder problems again today.
Drove into NYC to do a fun rehearsal of a musical that a friend is hoping to put on.
Earlier, I got up to teach guitar lessons, then found a message that my student had to cancel. So I went back to bed.  :)

Otherwise a low key day- oh, and this little ditty for y'all about fasting:

Day 19

Day 19: The last of the 4 cleanse days for this month!
And sometimes you just have to have a sleepathon.
And by the way, for those keeping score, I didn't fart today!
(Joe, does that count as not mentioning farts on my blog?)

Carla
http://www.thesingingpatient.com

Day 13: Minor Breakthrough?

I felt good today! I mean, actually good.
I woke up rested.
I got a lot done.
I was in a good mood.
I went for a brisk walk!
Who is this person?!
Let's hope there are more days like this to come!

Meanwhile, someone somewhere could find a reason to write a blues song about this, so here it is (after a bit of rambling of course, and my showing you my giant tub of unfinished song ideas):

Carla
http://www.thesingingpatient.com
http://www.facebook.com/carla

day 12: sleepathon!

Day 12 turned out to be "recover from day 11 day."

Whenever I see people running 5ks or marathons for lupus I think wow- the only way most lupus patients could participate would be if they changed it to a sleepathon. I'd have been a serious contender today.

Of course I do believe it's possible to get well enough to run a marathon (if I wanted to), but I am not there yet- that's for sure!  But I'm working on it. And some days working on getting healthy means doing less.

I had a strange episode when I was 17 where for 3 days I kept falling asleep. On the couch, even behind the wheel. I was getting a normal night's rest, but I just kept falling asleep. After 3 days, it passed, and it never happened again. I will never know what that was about, but that is how I felt today.

My sophomore year of college, I was constantly falling asleep as well. On the couch in one of the classrooms (I think I slept through someone's entire music theory class on that couch), in the hallway with my books under my head. Sometime during my 2nd semester, my piano teacher asked me "We've been wondering- are you on drugs?" What?! We?!? The whole faculty is sitting around gossiping about me? I was, I'm sure, visibly shocked and offended, and assured him that was not the case. So then he suggested I get some multivitamins.

I had my wisdom teeth extracted right before that fall semester I don't think I've ever recovered from it. I've never been quite the same since. So once I'm feeling stronger, I'm going to look into possibly getting those pockets looked into and maybe filled in (where my wisdom used be). But no oral surgery right now. Right now, building health.

carla

http://www.thesingingpatient.com
http://www.facebook.com/carla

Day 11: detox

Day 11 vlog- a cleanse day.
I am still pain free, as far as my (no longer) chronic shoulder pain.
I did have some of that passing joint stiffness that seems to go with detox.

I find on days with no food, I have to distract myself in order to take my mind off my hunger.
Today I assembled the stand and pedals, etc. and put our new electric piano together! I'm so excited to have a piano in the house, I think I played for 2-3 hours. Maybe that's why my hand are stiff...

Carla
http://www.thesingingpatient.com

Day 10: Tapering Off Drugs Carefully

Day 10! Still on the plan. Still pain-free!
And now, every so carefully, weaning off one of my prescriptions.



Carla

http://www.thesingingpatient.com

Day 9

At times over these last 22 years of dealing with lupus, I've had to choose between my health and my vanity. Even facing death, I've been like " but my hair.. i don't want to lose my hair! And I don't want to gain 50 pounds from the drugs!"

It sounds petty and ridiculous to someone who hasn't been there. But believe me when those are your 2 options- look like hell or die- some of us have to actually ponder the choices before agreeing to looking like poo. Let's see- Death or death warmed over? is that really the best you got?

So that's why all these 22 years I've been looking for those 3rd options in alternative medicine and lifestyle change. And I've had successes. I just tend to forget, after I get off the drugs and get well and get on with my life, to maintain some sort of sustainable regimen (it's regimen, not regime! A regime is a political power- but I digress).

Anyhow I hope this plan continues to keep me pain-free (as it has for 9 straight days!) and is something I can stick with long term. I also deeply hope that it lowers my unacceptably high inflammation and brings my kidneys back to normal.

And here's today's ridiculous song.

Carla
http://www.thesingingpatient.com

Days 8: ADD kinda day, but stayed on the plan

Day 8:

I woke up feeling NOT tired for the first time in a very long time!
Still not in pain, as well!

Had a really long lunch with a new linkedin acquaintance, then sort of scattered my energy in somewhat useless directions. Just very ADD. It's rare to have energy so I'm sad I squandered it.
I didn't even manage to do a vlog, though I had a parody in mind:
A beatles song:
"it's day 8
 and I ate
 just what I'm s'posed to so let's talk of something else besides the things I'm eating..."

If you know the beatles well, you can tell me what the title of the original song is. I can't seem to dredge it from memory.

Memory... I remember when I had a useful memory. Actually, no I don't.
I recently read that congition is impaired when you have lupus (or any active autoimmune disease). My reaction was "uh, DUH, everything's impaired. The body has to use whatever resources is has to keep vital organs running while simultaneously attacking them. It's hard work. Just ask our government about Iraq. Destroy, rebuild, repeat.

One of my favorite things about this plan is that is is kind of a no-brainer. It doesn't matter if I have a crap memory, or ADD, or both. I posted the daily plan on the fridge, and now I just go see what the next snack/ meal/ supplement is and have it.

2 of my 3 meals per day for the first 30 days are shakes. Meaning I just pour some vegan protein powder in my magic bullet blender with water and ice, and that's my meal. No big decision making, no real prep time, and almost no dishes (1 plastic cup- I clean the base right after I finish blending).

I've never been much of a cook, and not even a fan of food. Unless it's junk (chips, candy, soda- none of which are actually food. I call them "anti-foods" because they take more from your body than they give it. So I don't mind not cooking. The 3rd meal could be cooked but for now I'm just making a big salad and putting snoked salmon or something like that on top.

I have to say though, once you wean your taste buds off the overstimulation of too much salt/ sugar/ additives/ artificial sweeteners, simple foods and healthy foods taste better. I'm starting to really enjoy the berry-flavored shakes (made of actual berry powders).

See you next post!

Carla
http://www.thesingingpatient.com

Are you allergic to your favorite food?

There is a lot of info out there about diet and nutrition, and a lot of it is contradictory.

I'm writing this post to share what has worked for me. There's not ONE answer for everybody, because every person's body and disease pattern is different.
But I do have a starting point that I think will help anyone with any autoimmune disease, or anyone who just feels tired and foggy all the time.

In 1994, I read that 100% of lupus patients have food allergies. Allergies create antibodies. Lupus is marked by antibodies. So i believe if we eliminate allergens, we can calm down our immune system and the lupus.

It has worked for me.  I am on ZERO lupus meds. As long as I stick to my diet and get enough sleep, I am fine. I can do aerobics, tap dance, etc. And I was nearly dead from kidney failure, congestive heart failure, and a stroke.

I had myself tested for food allergies using a blood test that checks for *delayed* reactions (not pinprick tests that find immediate reactions). Allergic reactions can occur as much as 3-4 *days* after eating something you're allergic to.

In my book, I recounted the story I read of a British woman whose Rheumatoid Arthritis was caused entirely by her cheese addiction. And cured by her eliminating all dairy from her diet.

This is what keeps me healthy:
I avoid gluten, dairy, eggs, shellfish, and nutrasweet.
I eat fruits and/ or vegetables daily.
I exercise vigorously 3-4 times a week.
I drink water between meals.
I limit sugar.

I've been to numerous alternative health practitioners over the years and even without blood tests, almost all of them suggest eliminating gluten, dairy, or both.

I suggest making only 1-2 changes at a time, because changing your diet too radically too quickly can make it hard to stick to. I have quit diet soda 3 times. This last time, I have been off soda for 5-6 years, and when I've accidentally ingested a Life Saver or something with nutrasweet in it, I almost immediately get diarrhea. All the knowledge about how bad nutrasweet/ aspartame is was not enough of a deterrent, but explosive diarrhea- yeah, that works.

The best way to know if you are allergic to a food is if you
a) crave it a lot
b) frequently eat it for breakfast
c) can't imagine life without it

Anything that meets one of those criteria- that is a food that has to go, because you are in an allergy/ addiction cycle.

Dr. Mark Hyman suggests eliminating a food like this for 7 days, then, on the 8th day, eating a normal amount of this food and seeing whether you react to it within the next 2-3 days (headaches, digestive problems, joint pains, any physical problems). If so, you may have just connected the dots between eating and suffering from .

Them, you can *choose* to keep eating that food and feeling crappy, or you can decide you'd rather feel better. But at least now you know what causes your headaches/ stomach problems, etc.

It's hard to keep track in your mind what symptoms are getting better and worse. We tend to not remember everything. I suggest if you are making changes in your diet or lifestyle or medications, that you track your symptoms every day using an app like Symple (iphone only). If you don't have a smart phone, sign up for my free symptom tracker (a Word document that you can customize) here:

http://thesingingpatient.com/free_offer/

And yes I can get a gluten free pizza with no cheese (and add some "cheese" made from nuts when it arrives). I'm pretty OK now with avoiding all the problem foods.  I'm not perfect. I drink caffeine (usually just one glass of tea a day), I eat too much sugar, I enjoy some chocolate. But I'm doing enough to stay well. It's not about perfection for me; it's about doing something that works, and that I can stick with. Haven't taken lupus drugs in 7 years, and I was severely ill. So I'd say my diet is working for me.

Think about it. Give it a try. if you want some support, drop me an email. I moonlight as a health coach and can help you out.

Carla

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer

EMAIL: carla AT thesingingpatient.com (remove spaces and "AT" and insert @ sign)
http://www.thesingingpatient.com
http://www.facebook.com/TheSingingPatient
http://www.twitter.com/singingpatient

Free Online Gluten eSummit

Gluten and its role in autoimmune disorders is a frequent topic of discussion amongst alternative medicine practitioners. And, for me, eliminating gluten (and dairy and several other foods I'm sensitive to) from my diet has changed my life.

At one point I was on 9 drugs, plus chemotherapy, transfusions, and Procrit shots to treat congestive heart failure, kidney failure, neuropathy and anemia, all caused by lupus. Now, my diet choices have allowed me to stay healthy with ZERO immune suppressants for the last 6 years.

So, when I saw the information about a free e-summit, I knew that I had to share it here.

http://theglutensummit.com/

Dr. Tom O’Bryan of theDr.com has gathered 29 of the world’s experts and opinion leaders on the topics of gluten-related disorders, nutrition and healthy living for a series of online interviews taking place for FREE from November 11-17, 2013. (Don't worry- it's not all day, every day! One video per day will be posted).

During the summit, you will:

• Learn about the latest research on gluten-related disorders
• Gain knowledge of proper diagnosis/treatment methods
• Ask, “Could this health issue be due to gluten?”

The Gluten Summit is targeted towards both doctors AND patients (really, anybody), so that we all have a better understanding of the issues.

The goal of The Gluten Summit is to shift the discussion and recognition of gluten-related disorders forward by five years. Meaning, lets get the "gluten" conversation between patients and doctors that will be happening five years from now to happen now.

For a lot of patients, discovering and eliminating any food sensitivity, including gluten, can mean more control over their health, fewer ( or zero!) drugs, and feeling better. That is what it has meant for me!

Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer

http://www.thesingingpatient.com
http://www.facebook.com/TheSingingPatient
http://www.twitter.com/singingpatient

Treatments for Lupus: Prednisone

When I was diagnosed with lupus by a mainstream doctor, and then sent to a specialist (rheumatologist), I was given two choices: take prednisone or get cussed out. I didn't know about the cussing out option until I went for my second appointment and hadn't taken the prednisone. The thing is, I had read about all the side effects of prednisone and to me it sounded worse than lupus.

But here's what I eventually learned (the hard way): if you have systemic lupus erythematosus (a.k.a. SLE, lupus, lupus SLE, systemic lupus, or lupus erythematosus, or even the misspelling "lupis")....where was I? Oh yes, if you have lupus, it's not going to just go away by itself if you just wait it out, like a bad cold or bronchitis. I tried that. I got very very sick, down to 80 pounds. Lost most of my hair, kidneys failing, too weak to get out of a chair, constant pain. I would have died if I hadn't finally decided to get on some medication.

The first thing I did after being diagnosed was go to the library (this was 1993, pre-internet) and look up "lupus" in the encyclopedia. It said that people who were diagnosed with lupus usually died within 5 years of being diagnosed. This was very old information, because it was obviously written before they found out they could control lupus with drugs. I did not know it was old information at the time.

The next year I met a woman who was one of the first people to be given prednisone for lupus. They didn't know what dose to give her, so they started with 250mg. That is not a typo. Seriously. Can you imagine? I go bonkers on 40 mg. She found herself at a dinner party one night and before she realized what she was doing, she pulled the salad serving bowl in front of her and started eating out of it with her hands.

I did eventually go on prednisone. The pattern has been this: I take prednisone for about 9-10 months. And then I've been able to wean off it. Then 4-8 years later, the lupus goes bonkers again and I go back on the prednisone. Repeat.

Now when websites and doctors talk about lupus, they say it goes in cycles of "flares," rather than saying you'll be dead in 5 years. I attribute this change to the use of medications to quiet the disease. And I attribute the cycle of flares to the coming off the drugs and going back on them. Which is why some doctors try to keep patients on a "maintenance" dose of prednisone (or some other drug), in order to prevent future flares.

I rely on prednisone and it works for me but I hate the side effects and it's dangerous to be on it long-term. So I have searched high and low, near and far for other more natural options to build up my health and quiet the disease.

I've done acupuncture, chi gung, bodytalk (energy medicine), chelation therapy, chiropractic, lymphatic massage, regular massage, physical therapy, movement therapy, talk therapy, life coaches, psychiatry, got all my metal dental fillings removed and replaced, became self-employed and pursued my dreams (yes happiness affects your health), cut toxic people from my life, and changed my diet.

Out of everything I tried, the diet change (cutting out gluten, dairy, nutrasweet and MSG) and chi gung actually made all my lab tests straighten out, and I got the first negative ANA test I've ever had since 1993. And they basically cost nothing.

My last lupus flare was in 2006. I went on 5-6 drugs (including prednisone). I was able to wean off most of them within a year, except for the blood pressure drug, which I finally weaned off of just this past month. I feel like I'm in pretty good control of my heath now, because for me the diet makes such a huge difference. I have several big motivators to stay on that diet: not wanting to suffer from lupus, not wanting to suffer from prednisone, and not wanting to limited in what I can do physically.

I don't really care if a doctor cusses me out. That's not a motivator for me. In fact, it makes me that much less likely to "comply."

But now, because I have experienced the consequences of taking and not taking any medication while lupus is chewing up my organs, I am rather open to the idea of pharmaceutical intervention. If I ever have another lupus flare, yes, I will take prednisone (and ask people not to take my picture while I have a moon face). It's cheap, it works for me, and it has saved my life 3 times.

Prednisone was the first effective treatment for systemic lupus. Before that there was no hope. Just start planning your funeral. So, although it makes me batty, and it tastes like Ajax (I've accidentlaly bitten a pill more than once), I'm grateful for this drug. There are other medications out there for lupus now, as well as effective non-drug treatments, and I will talk about them in another post.

Meanwhile, here's a song I wrote about my love/hate relationship with prednisone.



From the CD



Carla
Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
www.facebook.com/TheSingingPatient
www.youtube.com/user/carlaulbrich - more videos

Is Lupus Genetic?

Dear Carla,
My mother passed away from Lupus and connective tissue disease. I was wondering if Lupus was hereditary. Thanks


Hello!

Thanks for writing in.
I'm so sorry you lost your Mom to lupus.
Not everyone realizes how serious lupus can be.

A lot of research has been and is still being done to attempt to identify a lupus gene.
According to blogger Iris (below in comments section), "The John Curtin Medical Research Institute at ANU has found the gene behind lupus.  They named it "roquin" after the patron saint of plague victims. Normal roquin leads to a healthy immune system, mutated roquin is the cause of autoimmune diseases, including lupus. http://www.sometimesitislupus.com/2013/05/towards-cure.html "

(Thank you Iris for the info!).

However, genes alone do not create lupus. According to the National Institute for Health, "In studies of identical twins—who are born with the exact same genes—when one twin has lupus, the other twin has a 24-percent chance of developing it. This and other research suggests that genetics plays an important role, but it also shows that genes alone do not determine who gets lupus..."

And according to the Lupus Foundation of America, only 10% of people with lupus will have a close relative who has lupus or may develop lupus. That's not a strong case for lupus being genetic.

The next question is: why are these genes mutated? Does it happen at conception or are they damaged during our lifetime? Looks like from the identical twin study we are not born a ticking lupus time bomb- something else has to come into the equation.

Some forward-thinking doctors (such as Mercola, Oz, Hyman) believe that genetics "load the gun" but it's lifestyle that "pulls the trigger." In other words, there may be more potential in a certain family to develop a particular disease, but that disease will only occur if enough challenges are presented to the body (for example, stress, poor diet, pollution, radiation, trauma, accidents, poor sleep, lack of community or good relationships, lack of joy, lack of meaning and purpose in life).

Only 1% of diseases are purely genetic. Meaning if your parents had the disease, you will definitely get it. Only 1%. That's good news, because that means most of the diseases you hear about, including lupus, can be turned around somewhat, or even completely, by lifestyle changes.

I was diagnosed with lupus in 1993. I had severe lupus, with kidney failure, congestive heart failure, anemia, stroke, and all the weakness exhaustion and hair loss that go along with it all. I was helped back to strength by medication but then, unlike many lupus patients, I was able to get off the medication and totally reclaim my health. I did so by making drastic changes in both my line of work and my diet (I am gluten free and dairy free and no artificial sweeteners or MSG, and I eat a lot of vegetables).

In short, if your mother had lupus, even severe fatal lupus, it is not inevitable that you will too. But you will need to make conscious healthy choices to avoid illness. Genetic tendencies run in families, but so do lifestyles and so do food allergies. I'd suggest you check out a few books on lupus, some of which may be available at your local library.

The Lupus Recovery Diet, Jill Harrington
Super Immunity Solution, Joel Fuhrman (not lupus book, but a wellness/ nutrition book)
How Can You NOT Laugh at a Time Like This (my book)
Integrative Nutrition, Joshua Rosenthal (you can download this book for free at www.singingpatientwellness.com It's not a lupus book; it's just about nutrition)

Any of these will give you some ideas on how you can use your kitchen and other choices to keep and even improve your current health.

I wish you all the best!
Carla

Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

Guest blogger: Eat to Beat Inflammation and Pain

Today we have a guest blogger, Katie Brind’Amour, on the topic of anti-inflammatory foods.

Eat to Beat Inflammation and Pain

Let’s be honest – swollen joints and aching muscles just plain suck. Modern medicine has a host of helpful treatments for these ailments, but so does Mother Nature. Try chowing down on some of the foods below to reduce inflammation and ease joint and muscle pain, particularly if you suffer from lupus.

Fab Foods to the Rescue

Eat your vegetables and whole grains. Vegetables and whole grains (like brown rice, whole wheat, quinoa, and other grains) can offer a host of antioxidants and nutrients that can help your body fight fatigue and inflammation. In addition, the Vitamin E that naturally occurs in some veggies (like tomatoes, spinach, carrots, and sweet potatoes) may help reduce pain, protect your eyes, and heal weak or damaged skin.

Add some (healthy) fat to your meals. Omega-3 fatty acids are widely touted for their ability to cure just about everyone of everything. What you should care about, though, is that omega-3 fatty acids – like the ones found in fish, olive oil, nuts, and avocados – help reduce morning stiffness, joint pain, and functional limitations in individuals with inflammation caused by an autoimmune disorder.

Snack on nuts and seeds. Nuts and seeds are a powerhouse combination of healthy fats, essential nutrients, and powerful antioxidants that will help fight tissue damage, boost energy, and even reduce swelling or pain. Incorporate a small handful of walnuts, pumpkin seeds, or your favorite nut butter into your daily routine for the most benefit.

Don’t forget your dairy. The calcium in milk, cheese, yogurts, and green leafy vegetables (yes, I know they aren’t dairy) can help promote bone health and prevent osteoporosis, which is good news if you suffer from joint pain, bone deterioration, or skeletal weakness. {note: many people with lupus, including me, fare better on a gluten-free, dairy-free diet- Carla}

Bring some citrus into your diet. Early research in animals shows that citrus peels and extracts may significantly reduce swelling and pain (perhaps even better than morphine, which is saying something!). Even if this doesn’t have equally significant effects in humans, it can’t hurt to get some extra vitamin C and antioxidants in the diet.

Watch sodium intake. If you suffer from inflammation or swollen joints because of retained water, sodium may be your enemy. Try cutting back on processed foods like lunch meats, frozen dinners, and canned soups while simultaneously drinking more water – the combination should ease pain and swelling if sodium was aggravating your symptoms.

Make Anti-Inflammatory Foods Part of Your Routine

Try keeping a list of these foods near your refrigerator or in your wallet to remind you about the easy ways to incorporate natural pain management and anti-inflammatory treatment into your diet. After all, everybody eats (I hope), and simply making some trades or tweaks ought to start relieving some pain and inflammation in a few days to weeks.

If you are even more eager to put your new dietary savvy to the test, try keeping a food diary to track what you eat and the type and severity of symptoms you experience. Then discuss the journal with a physician or dietitian to brainstorm on other potential changes you can make to help get the most out of your food (and potentially avoid some unpleasant symptoms).

If you have chronic pain or inflammation, you owe it to yourself to try a few natural treatments for symptoms of lupus or other auto-immune disorders. You may find that personalizing your diet is the key to making your disease more manageable day to day, improving both your short- and long-term health and functional abilities in the meantime. Eat up!

Katie Brind’Amour is a Certified Health Education Specialist and freelance health and wellness writer. She enjoys blogging about friendship and life in the not-so-fast lane while chipping away at her PhD in Health Services Management.

Thanks, Katie, for the great post! I always love to hear about natural ways to decrease inflammation and improve health, especially low-cost practical ways, like adding in new foods. There are lots of great suggestions here. I would only advise caution to people with lupus in regards to dairy. In my personal experience, my inflammation would not let up until I eliminated dairy. For me, and many people with autoimmune disorders, it is an aggravating food. Otherwise, I have to agree with the overall approach to using food to reduce inflammation, because using drugs to control it, over the long-term, can lead to other problems, some of them quite serious. Food journaling is a great tool, and I especially like your tip of keeping a list of good anti-inflammatory foods handy, on the fridge and in the wallet. A helpful hint for implementing these tasty healthy ideas. Thanks again!

Carla

Carla Ulbrich, The Singing Patient

http://tinyurl.com/348hroc - Carla's book

www.singingpatientwellness.com - health coaching- visit this site to get a free e book on nutrition! 

www.thesingingpatient.com tour dates, videos, CDs, books

www.youtube.com/user/carlaulbrich- funny medical songs

Eating Out on a Strict Diet

Someone asked me today how I deal with eating out, with my strict diet. (I'm gluten-free, vegetarian, and also trying to avoid dairy.)

I don't have gluten or dairy (or meat) at home- I've found plenty of acceptable - even tasty- ways to substitute for both gluten and dairy at home. Almond milk in my smoothies, veganrella cheese on the occasion I want a little cheese, coconut milk ice cream on the occasions I just want a dab of ice cream... And gluten-free bagels, pizza crusts, and sandwich bread. Of course all fruits, nuts, seeds, and vegetables are dairy- and gluten-free (unless you coat them with cheese and bread crumbs- but you can even get GF bread crumbs and dairy-free cheese if you're so inclined).

It's not as hard as it once was to eat tasty food at home that is gluten-free and dairy-free. However, it's not as easy to eat gluten-free and dairy-free at a typical restaurant. I find myself going through the menu using the process of elimination: meat, wheat, wheat, meat, dairy dairy meat meat wheat ... Then getting a salad, or something off the "side orders" section, where all the vegetables are. I never eat gluten, but I have strayed on the dairy when eating out. And I pay for it. It's frustrating having such limited choices at restaurants.

However, I'm not willing to give up eating out altogether. I've found a few restaurants I really like and I frequent them because they have tasty gluten-free dairy-free options. Here's a bit about where I like to eat:

Frequently, I go to Moe's, a Mexican build-your-own-meal kinda place. This is a national chain.
http://www.moes.com/

You go down the assembly line and build your burrito, or taco, or quesadilla, or, in my case, since I am gluten-free as well as trying to be dairy-free, I get the rice bowl. The ingredients at Moe's are quality: organic tofu, grass-fed beef, fresh-made guacamole. So I get a tofu bowl with beans, guacamole and grilled onions, no cheese or sour cream, and it's quite tasty. I even indulge and have a few corn chips (corn is gluten-free). The salsa bar *rocks*! My favorite salsa is El Guapo. Yum!

When I was in South Carolina over Christmas, I at at Moe's 3 days in a row. I was tickled pink when they opened a Moe's just a mile and a half from our house in Somerset, New Jersey in January (it's in the Cedar Grove shopping center). It was like an answered prayer. Finally, somewhere nearby that has tasty non-gluten choices,  and is relatively cheap, fast and healthy. Plus they've always got good music playing.

I should point out that Moe's, like most restaurants, is not *perfectly* gluten free; the same utensils are used to scoop the beans and rice onto a burrito or quesadilla. So if you are Celiac or severely gluten intolerant, be mindful of that. The only chain restaurant I've visited that is extremely careful about cross-contamination is Uno's Pizzeria. Separate toppings, utensils, are cooking area for gluten-free, and the manager brings out the GF entrees him/herself.

Another chain that has a tasty gluten-free menu is PF Chang's (Chinese).

The other types of restaurants I really enjoy are Indian (plenty of gluten-free dishes, but many have cheese and cream) and Japanese (hardly ever has wheat or dairy unless you get hibachi- that has butter. Also you gotta BYO soy sauce, because most soy sauce has wheat in it. I use Bragg's Amino Acids).

So why am I gluten-free and (trying to also be) dairy-free? Any of you who have read my book already know the answer: the one time my lupus tests went negative (meaning, no sign of lupus) was when I stayed on a gluten-free, dairy-free (and no artificial sweeteners) diet. I was also doing chi gung daily and exercising regularly, but when I went back to eating dairy and maintained all the other things, my tests went positive again. So... you would think that would be enough incentive to stop eating it entirely, forever.

But I'm human, and I get lazy, or tired, or tempted. I don't eat dairy all day long, or even every day, or even very much, but it doesn't seem to take much to wreak havoc with me. I decided to have a treat on Valentine's Day, and I had a big dish of premium chocolate chip ice cream at a restaurant. (Yes, it was tasty.) And I felt fine... until the next day (this is the old delayed food allergy thing). Then for 2 days, I could not completely open my left hand.

To anyone who thinks I'm being high maintenance or picky by having such a diet, I say this: if I were being picky, I would not eliminate tasty foods. As far as being high maintenance? Yes, I am. But I do my own maintenance. I bring my own food to parties. I don't ask for special favors at restaurants.

Yes, I'd love to eat whatever, whenever. Wouldn't we all? But what would I like more than being able to eat whatever, whenever? Feeling great, looking great, and having enough energy to do whatever, whenever.

Maybe that means eating out less. Maybe it means learning to cook. Maybe it means learning to like different foods. Maybe it means funny looks or weird remarks from people who don't understand. I am delighted to endure any and all of that if it means I can use my hands without trouble and avoid more prednisone, more kidney failure, another stroke, and more hospitals.

Diet is powerful. I've found some things that help me stay healthy. It's well worth the trade-off.

A couple more resources for those who are or who are thinking of trying being gluten and/or dairy free:
Restaurant lookup:
http://allergyeats.com/

Gluten-free magazine:
http://www.livingwithout.com/

Thinking of going gluten-free or dairy free?
Try it for a few weeks.
Track your symptoms, especially fatigue, irritability, brain fog, digestive and bathroom issues.
Then decide for yourself.

Not everyone has gluten or dairy intolerance, but for those of us who do, we can finally be in control of our well-being with one or 2 diet changes.

Here's to your health-
Carla

*** If you or someone you know would like to live healthier, happier, freer life, e mail me for a free one-hour consultation - I am a holistic health coach! Talk to someone who has been there and is living well now. You've got nothing to lose, and everything to gain! Start living your best life. ***

Carla Ulbrich, The Singing Patient and Health Coach

http://tinyurl.com/348hroc - Carla's book

www.singingpatientwellness.com - health coaching- visit this site to get a free e book on nutrition! 

www.thesingingpatient.com tour dates, videos, CDs, books

www.youtube.com/user/carlaulbrich- funny medical songs

The Many virtues of Junk Food

Junk food:

• tasty
• addictive
• cheap
• convenient
• lasts forever on a shelf

Healthy food:

• blah-tasting
• have to force myself to eat it
• costs more
• requires effort to prepare
• have to go out of my way to find healthy food, in stores and restaurants and at parties (usually have to bring my own healthy food to a party)
• goes bad in a matter of days in the fridge (or on the counter)
• worst of all, requires me to eat my own cooking. And anyone who's ever eaten my cooking (few have done so and lived to tell the tale) knows what cruel and unusual punishment this is.

I think I've made my case. Junk food is the better choice.

Oh wait. I forgot about this part:

Junk food causes:

• migraines
• candida overgrowth
• diabetes
• ADHD
• obesity
• high blood pressure
• inflammation
• etc.

health food:

• sticks in your teeth. Spinach, broccoli, beans, they all stick in your teeth. Ew!

Seems pretty clear, doesn't it? Junk food wins, hands down.

On a completely unrelated note, here's the word of the day:

fa·ce·tious [fuh-see-shuhs]

/fəˈsiʃəs/ Show Spell

adjective

1. not meant to be taken seriously or literally: a facetious remark.

2. amusing; humorous.

3. lacking serious intent; concerned with something nonessential, amusing, or frivolous: a facetious person.

Carla Ulbrich, The Singing Patient and Health Coach

www.thesingingpatient.com tour dates, videos, CDs, books

www.singingpatientwellness.com - health coaching- visit this site to get a free e book on nutrition! 

www.youtube.com/user/carlaulbrich- funny medical songs

http://tinyurl.com/348hroc - Carla's book

Lupus and Diet

Today I spoke/ sang for a support group at the SLE Foundation in NY City. What a great group of people.
Lots of great energy and ideas bouncing around, and I was heartened and inspired by the open-mindedness, strength, willingness and ease of communication. Right near Penn Station, too- really easy to get to!

I've mentioned this before, but I'll mention it again. Support groups for lupus have come a long, long way in 20 years. When I first became ill with lupus, support groups had 2 allowed topics: prednisone and lawyers. Any talk of alternative medicine or emotional stuff was shut down. So happy to say that is no longer the case. I watched today as a patient brought up her concerns about cellcept and placquenil to the rest of us, and we were all able to inform her of our experiences, helping to ease some of her anxiety and sort things out so she could make a decision. Beautiful.

From their wall (if this were a bumper sticker, it would be like "baby on board!"):

Typically when I talk, I tell my story and how humor, creativity, alternative medicine and diet helped me get my health back. When speaking to this group today, the focus was really about how I got to be in a drug-free remission, with all my hair and enough energy to do what I want to do in life. And we talked a LOT about diet. People interjected with comments and questions, which was great- I love an interactive dialogue, versus a monologue (90% of my gigs are a "performance" and all the audience does is clap and occasionally sing along when invited to do so). I learn things too. (For example, I did not know that 1/3 of lupus patients have RA and 1/3 of RA patients have lupus. Explains why the "purple jewelry" charm bracelet I have has both an RA blue ribbon and a purple lupus ribbon).

I was surprised how very interested- not just receptive, but really interested- these patients were in hearing about diet. And that is what we talked about most.

There are 2 diets I've seen out there which both claim to heal/ help/ even cure lupus patients:
Paleo Diet ("caveman" diet that is meat and veggies- and lots of raw food)
Lowfat Raw Vegan (no meat! but all raw food, both fruits and veggies).

Seems confusing- all meat, no meat- what's better?
Perhaps a better question is: what do these 2 effective anti-lupus diets have in common? And from what I can tell, it's a lack of dairy and a lack of grains, particularly gluten. This diet is known as the GFCF diet (gluten free, casein free- a.k.a. dairy free) and has been used effectively with numerous autoimmune diseases and autism.

My hope and dream in going to speak to lupus (and MS and myositis and RA) patients is to one day hear back from some of them that they tried a GFCF  diet, and it helped to reduce or eliminate symptoms, and helped them to reduce or eliminate their need for immune suppressants. And for those who have trouble learnign this diet on their own, I offer reduced rates for patients as a health coach, where I also support and educate people so they can relearn to eat in this somewhat counter-cultural way. It isn't easy at first, but it gets easier after you adjust. And even when it's at its hardest, it's easier than being on prednisone. I have my life back. My desire is to give this gift to others suffering from lupus.

If you or someone you know would like to have a free one-hour health consultation with me, whether it's about gluten-free or not- anyone who wants to achieve their health goals, big or small- please e mail me at healthcoach@bestpossibleme.com .

On another post I'll talk again (I have before) about the other 2 bugaboos I eliminated:
MSG and nutrasweet. Happy trails 'til next posting~

Carla Ubrich, The Singing Patient

www.thesingingpatient.com

www.bestpossibleme.com - health coaching

www.youtube.com/user/carlaulbrich- funny medical songs

get the book! http://tinyurl.com/348hroc

raw paleo diet cures lupus? discuss!

http://www.myhealthblog.org/2010/03/26/lupus-treatment-success-rate-100-via-paleo-diet-in-france/

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:
http://www.scientificamerican.com/article.cfm?id=evolving-bigger-brains-th

Well wishes to you all-
Carla

Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer
www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

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.