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

Day 17 vlog: Farts and dealing with doctors

Carla

Is Lupus Contagious?

May is Lupus Awareness Month.
I'm writing a series of posts this month in an effort to answer some of the most commonly asked questions about lupus:

"Is lupus genetic?" (already posted: http://lupusandhumor.blogspot.com/2013/05/is-lupus-genetic.html )
"What is Lupus?" (http://lupusandhumor.blogspot.com/2013/05/what-is-lupus-what-are-lupus-symptoms.html )
"How is Lupus Diagnosed?"
"What are the signs of lupus?"
"Is there a lupus blood test?"
"What causes lupus?"
"Is there a lupus diet?"
"Is there a lupus cure now, or on the horizon?"
"What are the available lupus treatments?"
"Why did this happen to me?"
"Who gets lupus?"
"Are there any celebrities with lupus?"

and today's topic:
"Is Lupus Contagious?"

(If you have a topic or question you'd like me to write about this month regarding lupus that isn't on this list, please put it in the comment section and I'll do my best to write something helpful and informative).

I could make today's post very short:
Is lupus contagious? No.

If you don't believe me, then ask Dr. Yazdany:
http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnclinical.aspx?articleid=4520

By answering "Is lupus contagious?" in depth, I'd be getting into the "what causes lupus?" topic.
According to the book The Autoimmune Epidemic (not a light read but a well-researched one), lupus, and autoimmune disease in general, has increased 300% in the last few decades. But only in industrialized nations. Not in the "poorer" countries that don't have our lifestyles. Yes, autoimmune disease is becoming a bigger and bigger problem. But it is not contagious.

Doctors are coming to believe it's a combination of genetic tendency and enviromental factors that create autoimmune diseases.

"Is it contagious?" is my least favorite question to be asked, because I feel like a leper when people ask me that. Here are the top 10 things I found most annoying to be asked, especially when I was first diagnosed:




From the book



See you on the next post. And please post in the comments section any questions (or annoying things people say) that I forgot to mention. Or anything else you'd like to add.

Well wishes!
Carla

Carla Ulbrich

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

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?"

"What Would You Do?"

A reader writes in and asks what I would do in her circumstance.

Hello Carla-

I am 34 year old mother of 3. I've been hypothyroid since I was 18.  I came down with an unknown virus in December that gave me severe leg muscle aches, 102 fever, and chills, followed by an itchy rash. I was given a steroid.  

I still had symptoms coughing up mucus. A "minute-clinic" doctor put me on an antibiotic. I started feeling better but at some point noticed my fingers felt like I had hurt them playing a sport.  I have  stiff feet in the morning and when I wake my feet, knees, and hands are rebelling. I saw my doctor Feb. 2 and she wasn't concerned but ran an arthritis panel, nothing came back abnormal except ANA. 

She said she saw no reason to send me to a rheumatologist if ibuprofen is working because she didn't see anything going on.  In other words, no other symptoms of any autoimmune diseases.  My family and I are now trying to cut out gluten.  I did develop psoriasis after the birth of my second child. 

We are working on my thyroid levels, and waiting to see on the ANA.What would you do?

Hello!
Thanks for writing. I will attempt to be as helpful as I can.
I am not a doctor but I have 20 years' experience living with 4 autoimmune conditions and I have tried everything under the sun- mainstream and alternative, and some of it has helped tremendously.

Looking at the bigger picture, I do see autoimmune, as psoriasis is an autoimmune disease. And some forms of hypothyroid are also autoimmune. (Do you have Hashimoto's?) It is not uncommon, once you have one autoimmune disease for others to appear at some point.

You ask what I would do.
I would do anything for my health, and I have. I've got acupuncture, chelation therapy, had my fillings replaced, chiropractic, massage, lymphatic massage, energy medicine, psychotherapy, prescriptions, physical therapy- the list is long.. But in the end, the long-term things that helped the most (and cost nothing, except for the blood test) were doing chi gung and changing my diet: I cut out gluten and dairy (and nutrasweet, eggs and bananas) after having food allergy tests done. These were not pin-prick tests, which check for immediate reactions, but a blood panel that checks for delayed reactions. If I accidentally eat dairy (party/ restaurant) I know because my tendons flare up. If I accidentally get some gluten, I know because my joints swell and hurt. And if i want a migraine, give me MSG or nutrasweet. Just one life saver with nutrasweet, that'll do it.

I don't know where you live, but try calling/ e mailing Dr. Mark Hyman's office and see if you can get an appointment or a referral to a functional medicine doctor. That kind of doctor will look for and remove underlying causes of symptoms, rather than just relieving symptoms with drugs. Sometimes it's allergies, sometimes vitamin deficiencies. If you can't find a functional medicine doctor, try an osteopath. Ask around for a recommendation. Also try ACAM, http://www.acamnet.org/

Call a yoga studio or health food store if you have to and look for some leads on effective knowledgeable healers. Decide if you want someone to get to the bottom of this. Once you get clear on that, then don't let up knocking on doors and asking questions until you're satisfied with the answers you get.

That is what I would- and did- do, and I got my health back.


I believe we were not meant to suffer. We simply live in an unhealthy environment and we have to learn to protect ourselves and be healthy despite some of the things around us that are working against that.

Well wishes-
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?"

Resources for people with lupus

Nobody can truly understand what you're going through the way another person with lupus does. Support groups, the good ones anyway, can be a great place to share without judgment, and to hear what's working for others. You don't have to figure this out all on your own.

This is courtesy of the Lupus Foundation of America, www.lupus.org.

to your health-
Carla
Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer
_____________

www.thesingingpatient.com- performance  info and dates
www.youtube.com/user/carlaulbrich - funny songs
www.twitter.com/singingpatient
www.linkedin.com/in/carlaulbrich

"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

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

The ANA Test and SLE lupus

The ANA test. It is the antinuclear antibody test. Though it is used to help diagnose someone with lupus, it is not a definitive "lupus test." Read below of an e mail I received from someone who is trying to get a definite lupus diagnosis (a very frustrating place to be), and has put a lot of stock in getting a positive ANA test result (positive ANA test result would go in the "might have lupus" column, but negative ANA result does not rule lupus out). I have added in explanations for all the abbreviations, since I know now everyone who reads this knows the medical lingo.

 
Dear Carla,

I have been being treated for SLE {lupus}/MTCD {Multiple connective tissue disorder } for about 4 yrs. I've had DVT {deep vein thrombosis}, PAH {Pulmonary arterial hypertension}, spilling protein, Anemia, low white blood cells, low RBC {red blood count}, low hemocrit {iron deficiency}, low vitamin D, high CRP {C-reactive protein, indicates inflammation}, c3/c4 complements {protein linked with immune activity} mildly elevated, high sed rates {indicates inflammation} in the hundreds {that is extremely high}, etc. - all the symptoms you can imagine, but always a negative ANA. 

The entire time I've been on many medications from prednisone, methotrexate, to now placquenil for the last 2-3 years about. My Dr. has ordered another ANA panel. I just want a definite answer. I don't believe any one can cause a ANA positive test but I do believe my medicine probably controls it and my flares. So I want a true diagnosis. Should I stop my medicine before taking this test again? wait till I'm in a bad flare? Is having the test done on one of my bad days enough, or should I sit in the sun as crazy as it sounded? No, I don't want to be sick either! God knows I've suffered enough! But I just want a real answer. It seems to me that I'm tittering and the Dr. is not sure what I have. If doing something will make me ill but give serenity in knowing the truth I need to know, I'm going out of my mind! Thank you for listening and hopefully you can give me some insight.
- name withheld

Hi (name withheld)-
I know how frustrating it is to not have a definite diagnosis.
It took me 2 years of visiting bunches of doctors before I was finally diagnosed with lupus.
I did have positive ANA at the time. But here's the thing about that ANA test. It is not a perfect, specific yes/ no "lupus test."

You can have a positive ANA and *not* have lupus. You can have a negative ANA and yes, have lupus. The fact that there is not one test for lupus is one of the reasons it is so hard to diagnose. Lupus is diagnosed with a combination of tests and symptoms (past and present). One big red flag is inflammation and you certainly seem to have that. You may find this article helpful: http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2240&zoneid=524

I had severe lupus and have been able to turn it around with diet and lifestyle changes. In fact, my ANA tests are now negative.

I would like to strongly encourage you to NOT try to make yourself sicker so you can get a definite answer. I understand why you want that answer once and for all, but I'm not sure you can get sick enough to get the answers you want.

Whenever I'm being told to go get a test, I always want to know what will change once the results come back? (Some tests are just unnecessary and expensive). What if you go sit in the sun, stop your medications, send yourself into organ failure and your ANA test still comes out negative? And what if it comes out positive? Well best case scenario is now you are very very sick and they still may hesitate to call it lupus. For some reason, they just don't like to hand out that diagnosis. But if they did call it lupus the only thing that would change is your having a label for it. The medications would be exactly the same.

I understand it's frustrating. I truly do. You are not alone. It routinely takes people (mostly women, mostly being told they are crazy or hypochondriacs while they are suffering) 2-5 years to get diagnosed with something like lupus. I was so frustrated by my chasing a diagnosis for 2 years that I just broke down and desperately prayed to God for a correct diagnosis. I was diagnosed the next day.

My suggestions to you (besides trying a desperate plea to God) is to just assume you have lupus, or something autoimmune and serious, or MCTD which is in my opinion lupus by another name. They are treating you for lupus, judging by the drugs they are giving you.

Instead of trying to get sick enough to finally get that answer you deserve, consider turning it around and thinking about how to get healthy again, reclaiming your health and leaving all this medical mess behind you. That may sounds crazy, but it's possible. If you'd like to read a bit about more about what I do to stay healthy, here is my blog http://lupusandhumor.blogspot.com/

All my best-
Carla

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer
_____________

www.thesingingpatient.com- performance  info and dates
www.youtube.com/user/carlaulbrich - funny songs 
www.linkedin.com/in/carlaulbrich 
www.twitter.com/singingpatient 
http://tinyurl.com/348hroc- Carla's book

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

Food Allergy Part 2: Food Allergies vs. Food Intolerances

What's the difference between food allergy and food intolerance?

I'm not an expert, but as near as I can tell from reading and researching this topic, here's the difference:

An allergy to a food involves an immune system response. That means when you eat a food you are allergic to, your immune system creates antibodies against that food. If you're unfortunate, some of those antibodies generated may also attack YOU- in other words, an autoimmune response.

According to wikipedia (and several other sources agree), "Food intolerance is negative reaction, often delayed, to a food, beverage, food additive, or compound found in foods that produces symptoms in one or more body organs and systems, but it is not a true food allergy. A true food allergy requires the presence of Immunoglobin E (IgE) antibodies against the food, and a food intolerance does not."

Now here's where the confusion and disagreement begins. Wikipedia, and most other sources, are saying that:

1) an allergic reaction involves an immune response
2) an allergic reaction is defined only by the presence of IgE antibodies.

But what about other antibodies? Specifically, what about IgG antibodies? I'm not a scientist or a doctor, but if you're generating antibodies, isn't that an immune response?

In 1994, I was tested (a blood test) for food allergies by an MD. We did an ELISA test, which measures IgG antibodies created when exposed to a panel of foods.  IgG antibodies, I was told, are the ones that manifest in delayed reactions. So this doctor was testing me for food allergies that create symptoms up to 3 days after eating the food.

IgE just tests for food allergies that show up within about 12 hours of eating the food. I hate to point out the obvious (OK,  I lied- I love to point out the obvious), but if I react to a food within 12 hours of eating it, I don't need a blood test to tell me that. I eat shrimp, I get hives a few hours later. I only need to eat shrimp 2-3 times before I connect the dots. What I need help with is the stuff that shows up long after I've forgotten I ever ate it. And that was the purpose of the ELISA test.

As for the difference between a food allergy and a food intolerance, let's try this again:

 -a food allergy happens within 12 hours of eating a food, and involves an IgE antibody response by the immune system
- a food intolerance is more loosely defined, but I believe it's any delayed negative reaction to a food, and the IgG antibody (also an immune response) has been lumped in with other possibly non-allergic reactions to food.


Some people think the ELISA test is experimental, or a sham, or {insert derogatory term of your choice here}, but it was a tremendous help to me. The blood test revealed strong allergies to wheat, milk, eggs, and cheese. I stopped eating those foods and my lupus tests completely cleared up.

I got tired of working so hard at my diet (have you tried eating at a restaurant and finding something with no wheat or dairy?). I slowly fell off the wagon, and eventually forgot all about the tests and the diet and... oh, look I got sick again. Very sick. Stroke, kidney failure, congestive heart failure sick. "Is she going to make it?" sick.

I've been gluten free this time for about 5 years (Just FYI, I also eliminated aspartame at that time).

After rediscovering my blood test results, I am back to also being egg-free and dairy-free (and still aspartame-free), and my inflammation and autoimmune blood tests are improving again.

So go ahead, various credible sources on the internet and in books, and mock the ELISA test. I will take my "sham" results, implement the diet changes, and enjoy my improved health.

And to you, my friends, there are other ways to discover your food allergies, in addition to the (I believe useful) ELISA test. I will share those ideas and more in future posts. Stay tuned to this bat-channel for more episodes of Fun with(out) Food Allergies!

Carla

*** If you or someone you know would like to live healthier, happier, more balanced life, e mail me for a free one-hour consultation: carla@thesingingpatient.com . 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 Spoon Theory

One of the many frustrating things about having lupus, or any chronic illness, is trying to communicate to others what you're going through. When the disease is active, we often look better than we feel (thank heavens! it's one thing to look like crap, but who wants to also look like crap?), and some days we actually feel better than others. But the fact is, if you're struggling with an active chronic illness, life is different after diagnosis, and it can be hard to clearly explain your situation to "earth people."

If any of you have not seen or read or heard The Spoon Theory, you're in for a treat. This is blogger/ sepaker/ patient advocate Christine Miserandino's account of finally being able to explain to her best friend what it was like to manage very limited energy. The spoon theory is widely popular among those with chronic illness, because it seems to finally put into words what all of us at some point have struggled to communicate. Here it is being read by Christine herself:




I couldn't agree more with this: it can be a gift to have something in your life that forces your to live more deliberately. Thanks to Christine for this great explanation- a leap forward in communicating from both sides with empathy, compassion, and greater understanding.


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

Leaky gut

One of the things that bothered me the most about being diagnosed with lupus (and there were many) was the total lack of answers to the question "why?" Why was my body attacking itself?

Mainstream medicine usually blames genetics, although there really hasn't been much in the way of proof that this disease is genetic. In fact, few diseases are purely genetic in origin. Besides, that whole "it's genetic" thing never rang true to me. I knew in my gut there was more to the picture. And speaking of gut, today's topic is. just that: leaky gut.

20 years after my diagnosis, the mindset is finally starting to shift because no one has been able to definitively prove a genetic cause. Now doctors are saying that autoimmune diseases are "multi-causal" (caused by several or many precipitating factors). Oh, good. Now we know why I got sick... lots of reasons. Glad we cleared that up.

No wonder I went elsewhere to find better answers. As I've spoken to and worked with alternative medicine practitioners over the last 20 years, one theory that has come up repeatedly is Leaky Gut Syndrome. Holes in the gut, or a permeable gut, allow partially undigested food to leak out into your bloodstream, causing the the body to form antibodies in an... oh, look AUTOIMMUNE response. I'm listening.

What causes the gut to start leaking?

1) Use of antibiotics. Our gut is made up of healthy (and unhealthy) bacteria. When we take an antibiotic, it kills everything- the good and bad guys. The good bacteria are what help us digest our food. But now they are gone. So food is leaking out undigested. On top of the absence of good guys, we also now have an overgrowth of bad guys- candida (yeast), which is small amounts is normal. When allowed to overgrow because there are no good bacteria to maintain balance, candida causes a host of problems, including many symptoms that sound a lot like lupus. 

2) stress

3) nicotine

4)other drugs: chemo, NSAIDs (advil, etc.), birth control, antacids, steroids (yes- if you didn't come into lupus with a leaky gut, you'll have one by the time they are done treating you!)

5) alcohol, excess sugar, soda, caffeine, processed foods

6) Various parasites, bacteria, mold and mycotoxins

7) nutritional deficiencies

8) food allergies

9) diseases such as Crohn's where the immune system is attacking the gut.

10) Overconsumption of grains. If you look at cows that eat grains instead of grass, they live much shorter, much more unhealthy miserable lives (see the movie "King Corn"). If you want to get a cow fat really fast, instead of letting her graze for grass, lock her in a stall and feed her corn. Sound pretty much like a day in the life of most Americans- sitting at a desk hunched over a computer, eating something probably made from corn or wheat. Those cows not only have a higher percentage of body fat, but are also very unhealthy and live much shorter lives than their ancestors. (Again, sound familiar?). Look, I love a big fat yeast roll as much as the next guy- I truly do. cake, cookies, donuts, pasta, pizza, yes. Love them all. But even gluten free, they are still grains, and eating too many grains and not enough plants is going to literally tear you up inside. And I mean "literally" not in the way most people use that word, like "really," but I mean literally as in "the literal sense of the word"- actual tears in your intestines. Hard to believe a soft, chewy pretzel could tear anything, but it can and does.

What do you think- Does it ring true to you? 

 This whole "leaky gut" theory sounded like a lot of hokum the first time I heard it, but the more I read and the more I do things to repair my gut, the more I believe it... in my gut...

*** 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

 

Gum, part 2: chew on this!

I posted recently about giving up chewing gum a while back because I couldn't find any that didn't have nutrasweet. And nutrasweet, for me, is poison, causing migraines and other nervous system issues. Having it in the form of gum is like having a slow IV drip of poison all day long (because I tend to chew a piece of gum for a couple hours, then swap it for a new piece and chomp on that for a while).

Mind you, even without the nutrasweet, I don't advocate chewing gum all day long, because it can cause TMJ (jaw problems), but I do like to have some gum on plane trips, and I do like to have a piece of gum when I want something sweet, but don't want to send my blood sugar all over the place with a big dessert. And I'm not really one to give up easily.

Rather than give up gum for all of time, I did some research. Once upon a time (when we were kids), no gum had nutrasweet. And since there are warnings on all foods with nutrasweet, I figured there must be some alternatives out there for those phenylketonurics for whom consuming nutrasweet could mean having a seizure. If the food industry has alternatives for those eating sugar-free, gluten-free, dairy-free and meat-free, I figured there must be something for nutrasweet-free out there, even if it's just a company who never changed from using sugar.

Here's what I found:

Spry gum, made with xylitol. I like the cinnamon, but of course that's my favorite gum flavor regardless of the sweetener.




SteviaDent. made with stevia. Haven't tried this yet.



Glee Gum, either with sugar (and no artificial ingredients!) or xylitol.








So, I have gum again. Chew responsibly don't get TMJ just because you can!

Happy New Year and happy chewing~

Carla Ulbrich, The Singing Patient

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

www.bestpossibleme.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

Gum

My gum-chewing days are essentially over. And while that will probably save me from getting TMJ, I do miss having something to chomp on in place of dessert, or while I'm concentrating on writing, literally chewing on an idea. And especially on an airplane, popping my ears.

But I chew gum no more, because I can't find gum that does not contain nutrasweet.

What's wrong with nutrasweet. Let me get the list. Literally.

According to http://www.ethicalinvesting.com/monsanto/aspartame.shtml ,
some of the symptoms of aspartame poisoning include:

Headaches/Migraines, Dizziness, Seizures, Nausea, Numbness, Muscle spasms, Weight gain, Rashes, Depression, Fatigue, Irritability, Tachycardia, Insomnia, Vision Problems, Hearing Loss, Heart palpitations, Breathing difficulties, Anxiety attacks, Slurred Speech, Loss of taste, Tinnitus, Vertigo, Memory loss, Joint Pain. 

 Furthermore, it is implicated in worsening or even triggering these conditions:

Brain tumors, Arthritis, Multiple sclerosis, Epilepsy, Chronic faigue syndrome, Parkinson's Disease, Alzheimer's Disease, Mental retardation, Lymphoma, Birth defects, Fibromyalgia, Diabetes, Thyroid Disorders.

Every single one of these contains nutrasweet. Well, OK, not the batteries.

Nutrasweet, which I used to parttake of daily (mostly in the form of Diet Coke, but also gum), is an excitotoxin, and anyone with autoimmune issues should avoid all excitotoxins. In fact, everyone should avoid them, but those of us with a diagnosis of something serious will be especially better off if we keep them out of our diet.

On the day we finally see a "wanted" poster in the post office for aspartame, underneath its photo will be these known aliases: Nutrasweet, Amino Sweet, Equal, Spoonful, and Sweet One. Like a wanted murderer, perhaps they are changing the name again to avoid the bad press that nutrasweet is getting. This "food" should never have been allowed into the food supply, but if you've got deep pockets and know the right people, I do believe you can get the FDA to approve cyanide as safe for infant formula.

Don't just take my word for it. Read some of the many articles on wellsphere.com about aspartame poisoning:
http://www.wellsphere.com/wellpage/aspartame-banned

Or read this webpage:
http://sweetpoison.com/

Or this one:
http://www.naturalnews.com/034320_aspartame_sweetener_side_effects.html

Don't count on the government to protect you from unsafe foods. Take on that responsibility yourself. And if you're looking for hidden nutrasweet in food, just know this- if the label says "attention phenylketonurics: contains phenylalanine" then it contains nutrasweet. And for me, that means it's not going in my mouth.

Nutrasweet for me means migraines and/ or diarrhea. Yeah, I just typed that publicly. I get diarrhea. TMI! Well, I don't, now. Because I don't poison myself anymore with soda and gum containing nutrasweet. I accidentally ate some nutrasweet recently when I bought some *regular* lifesavers (*not* sugarfree). I ate 3, then- 100-yard dash to the bathroom! WTH? The only unusual thing I had eaten that day was lifesavers. So, I went and read the package, and even though they were *not* sugar-free, they contained nutrasweet.

Why would they do that? Because nutrasweet is 16 times sweeter than sugar, and cheaper to manufacture. So, they can use less sugar and increase their profits.

Apparently, nutrasweet (aspartame) is also an effective preservative, which I assume is why they use it in that stuff they give people before a colonoscopy, and in prescriptions like cellcept. (Which may be why I couldn't tolerate high doses of cellcept. Boy was I mad when I read the pamphlet and saw nutrasweet in the ingredient list- I gave up Diet Coke, my favorite drink, and I also gave up chewing gum, because of the nutrasweet, and now my prescriptions were sneaking it into my system - and I didn't even get the enjoyment of a gut-rotting fizzy treat?).

 So, if you are avoiding nutrasweet, assume nothing and read all labels. Simply look for the warning (always in bold letters) "attention phenylketonurics: contains phenylalanine." If you're looking for a gum without nutrasweet, I'll save you some time: there isn't any. It ALL has nutrasweet in it, unless you go find some natural gum at the health food store (like "Glee" gum).

Looks innocent, right? Big Red! I chewed that as a kid, nothing but sugar and whatever gum is made of (rubber?).

Not health food by any stretch, but also not something that was going to cause migraines and diarrhea. (Oh, that's that word again. How many times can I put that disgusting thought into one article? Hopefully as many as it takes to  make nutrasweet seem like the non-food that it is).
And now, chew on this (actually, don't chew on this):

Always read the label!

Read the labels and if you're having health problems, consider eliminating this "food" from your diet.

Well wishes, my friends.

Carla Ubrich, The Singing Patient and Health Coach

www.thesingingpatient.com

www.bestpossibleme.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

Great Resource for Lupus info and Support

On October 8, I attended and performed/ spoke as The Singing Patient for the Lupus Summit in Charlotte, NC.

Room full of Lupus Thrivers and their loved ones

I had the pleasure of meeting a bunch of other fabulous lupus patients, and I was doubly impressed. First of all with the patients, and second, with this incredible chapter of the LFA.

The patients. Lupus patients are real survivors. The indignities we tolerate are too many to mention. The chronic pain, the years of being told we're imagining our problems, the disfiguring side effects of the drugs, people telling us we are sick because we have sin in our lives, or they ask weird questions like "isn't that AIDS?".. or they suggest that maybe we'll get better if we get pregnant (never mind that I wasn't married when someone suggested that, and I certainly had no energy to raise a child, AND it turns out pregnancy can actually trigger lupus or make exiting lupus worse- UGH!).

This is a chronic disease, so we're looking at a lifetime of more of these indignities.  It's one thing to survive a plane crash, or any other event that happens in an instant and then is over. That is remarkable and worthy of celebration. But it is another thing entirely to survive day after day and year after year of struggle with illness.

That kind of struggle changes you profoundly. And hopefully for the better. And this, if you survive it all, can make you into a very interesting, strong person, often with a twisted wicked sense of humor. And that is what I love about my fellow lupus patients. The strength, the resolve, and the humor. We are true survivors.

These are the kind of people I met at the Lupus Summit. Women who have been abandoned by loved ones, who have survived multiple miscarriages, stroke, organ failure, and more, and who have often gone on to make their lives better because of these difficult events.

The LFA Piedmont Chapter. 

with Christine John Fuller

When I first went to a support group in 1994, I was depressed by it. It was full of people who were in pain, unhappy, and had no hope. And the moderators shut down any talk of alternative medicine, or even working through emotions. All we could talk about was prednisone and disability lawyers. Thankfully, I decided to look elsewhere, because I did not want to end up in a wheelchair getting all my bones replaced after settling for prednisone as my only course of action. And I found a lot of things that helped me to get back off the prednisone and stay well.

And now, all this time later, I'm happy to say that support groups have changed a lot in 17 years. I'm particularly impressed with the open dialogue, the talk of self-care and dietary changes, and the responsibility I see patients taking for their lives. We can get our dignity back, and reclaim much of our health.

The Lupus Summit is ridiculously cheap- only $15 to attend!! and happens annually in Charlotte, NC. And if you're too far away to attend, you can watch videos of many of their presentations online for *free*. They are archived here (my talk will be archived here eventually, too):
http://vimeo.com/28278431

Kudos to Christine and Elaine for running a stellar chapter of the Lupus Foundation of America. You are making a difference, and I hope other chapters will follow your fantastic example.

with Elaine Neilson

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

Candida. Part One of many, I'm sure

Today's topic is Candida. Not the female name. Not the Abba song. The fungus, the yeast, also known as thrush (in the mouth), a.k.a. yeast infection (in the hooha). But if you have Candida infections in the hooha or the mouth, you've probably got a systemic problem- you're swimming in yeast.
And here's the thing about systemic yeast overgrowth- the symptoms overlap a LOT with autoimmune disease.

• Frequent stomach pains and digestion problems
• Skin problems (skin infections, eczema, psoriasis, acne)
• Foggy brain / Trouble concentrating
• Constant tiredness and exhaustion
• Anxiety
• Mood swings
• Obsessive compulsive disorder (OCD)
• Anger outbursts
• Irritability
• Headaches
• Intense cravings for sugars, sweets, and breads
• Itchy skin

Knowing how hard it is to nail down a diagnosis of most autoimmune diseases, especially lupus, wouldn't it be good to find out whether we had a yeast overgrowth? Perhaps even just a yeast overgrowth, and not an autoimmune disease. Or maybe an autoimmune disease that was caused by or made worse by a candida overgrowth... Definitely worth looking into.

What causes candida overgrowth? One really big precipitating factor is use of antibiotics. The rapid rise in Candida overgrowth in the US immediately followed the beginning of widespread use of antibiotics. There are good, friendly bacteria in our intestines that break down our food and the fiber in it. They also keep the candida in check. But antibiotics are like atom bombs- they kill everything, not just the one bacteria the doctor prescribed it for. The good bacteria become "collateral damage" and now we leave the door wide open for the candida to move in and take over, wreaking havoc.

Unfortunately, another thing that causes candida overgrowth is use of steroids such as prednisone, the very drug we are using to treat the symptoms that were possibly caused by candida overgrowth.

Twice I have gone on a candida diet - anti-candida, not pro candida, though most of my life I've been on a pro-candida diet and didn't know it. Lots of sugar and carbs. Both times were after a 9-month course of prednisone. Once I used the diet plus herbs, and once I used the diet plus nystatin (a prescription which is hard on the liver, but effective).

I got to thinking "It's time again," as I have not done a candida diet/ treatment program since my 3rd round of long-term prednisone, and I'm pretty sure I have a Candida problem again. I was waffling on pursuing the idea again when I received a letter from someone who heard me on the radio back in January in Florida and had totally cleared up her lupus by doing the candida elimination. She sent me the info for the National Candida Center, and I'm working with them now. Thank you, universe, for that confirmation, and friend, for taking the time to write me.

I'm doing some tests over the weekend to be certain, and I'll tell you all about those in the next post.

Are you curious as to whether you might have a candida overgrowth?

Do these self-tests here:
http://www.nationalcandidacenter.com/candida-self-exams/

To your good health and mine!
Carla

Carla Ulbrich, The Singing Patient
_____________
www.thesingingpatient.com
www.bestpossibleme.com - health coaching
www.youtube.com/user/carlaulbrich - funny songs

"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

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

Causes of Autoimmune Diseases

Last time, we discussed possible reasons why more women than men develop autoimmune diseases. In the case of lupus, it's 9 women for every 1 man who is diagnosed with lupus.

Slate.com offered some possible theories for the causes of autoimmune disease, based on the gender imbalance: genetics, pregnancy/ birth leaving another person's cells in your body, and estrogen. Here's the problem with these theories: the new conventional wisdom is that genetics do not really cause disease. As Dr. Oz would put it, "Genetics load the gun; lifestyle pulls the trigger." Wish I had a better, less violent metaphor, but it does get the point across. Genetic tendencies are not our inevitable fate. Just because I'm in a bar, it doesn't mean I'm going to get drunk. (Slightly less violent metaphor?)

Now before I sound like I"m blaming the victim, let me state 2 things. One, I've been living with lupus for 20 years, so I'm talking about me, too. Two, many of us are doing things we *think* are good for us, usually because we've been told that it is, but it turns out to be a problem in the long run. I'm trying to empower us to get better, so please take this not as fingerpointing at the sick person, but fingerpointing at what is possibly making the person sick. I honestly believe that none of us wanted or chose to have lupus.

In my opinion, everyone with an autoimmune disease should be tested for the following:
1) Vitamin deficiencies, especially Vit. D
2) heavy metal poisoning, including mercury
3) Celiac disease and Gluten intolerance
4) other food allergies
5) Candida overgrowth

Any one of these, and certainly a combination of these, is going to cause problems. And if left untreated, the problems will cause problems. Multiplying like rabbits. And not the good cute rabbits who lay chocolate Cadbury eggs on your lawn on Easter. Mean rabbits.

And here's the thing I was talking about before- when we do stuff we think is good for us, like stay out of the sun because we have lupus, we worsen our vitamin D deficiency. We *must* supplement with high quality vitamin D if we are avoiding the sun, or live north of Maryland, esp. between October and May. Symptoms of vitamin D deficiency include depression, chronic fatigue, weight loss, diabetes, heart disease, stroke, osteoporosis. http://www.vitaminddeficiencysymptomsguide.com/

There are so many examples of us doing something that's not even fun, thinking we're making ourselves healthier when in fact we're making ourselves worse. You would think if you're going to pay the price for bad decisions, you could at least enjoy yourself along the way. We get a cavity, so we go to the dentist, and he gives us a filling. that's made of MERCURY, a known toxin, extremely poisonous. It can cause rashes, muscle weakness, kidney function, memory impairment, neurological problems, insomnia (is this sounding like lupus to anyone?). BTW, there are non-mercury fillings available.But you need to ask your dentist if (s)he is mercury-free. If your filling is silver in color, it definitely has mercury in it,  as much as 55%. http://en.wikipedia.org/wiki/Mercury_poisoning

We think we're being healthy eating whole wheat bread. Sounds like a nice hearty, healthy food. But not if you have Celiac disease or gluten intolerance. Celiac causes malnutrition. If you have Celiac and continue to eat foods that contain gluten, it will kill off all the villi in your small intestine and make you unable to absorb nutrients from your food. You can then stuff yourself and still be starving from malnutrition. Now there's a magic trick I don't want to volunteer to be a part of. Milk products- another food we were told was healthy- is also a problem for people with Celiac. http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease-symptoms . People gluten intolerance suffer the same symptoms as those with Celiac, but the blood tests come out different. http://gluten-intolerance-symptoms.com/

get tested for other food allergies. 100% of lupus patients have food allergies. 100%?! And food allergies come in 2 sizes: immediate (you know these- you eat shrimp, you have hives a few hours later; you eat peanuts, you can't breathe; me, I eat pineapple and my tongue immediately itches then hurts for 3 days- those kinds of food allergies are obvious); but then there's the delayed reactions- you could eat something then get joint pain that doesn't show up for as long as 4 days later. Who's going to figure that out? Well, a blood test, that's who. Or, alternately, the elimination diet. http://en.wikipedia.org/wiki/Elimination_diet . People blame autoimmune diseases and symptoms on genetics, sin, bad karma, or some symbolic psychological issue manifesting itself... Yeah, OK, and maybe I'm just allergic to cheese. On top of whatever I started with, I developed so many new allergies after taking prednisone, I practically needed to live in a bubble. A latex free bubble that is.

Here's another one, and all too common. We get the flu or bronchitis and we go to the doctor- the responsible thing to do- and he gives us antibiotics. Which, if you have a cold or bronchitis, doesn't really help, because those are viruses, not bacteria. But we take it anyway to "avoid getting a secondary infection," but really because that's the only trick the doc has up their sleeve. When the only tool you have is a hammer, everything looks like a nail. Well, when you take antibiotics, they kill off all the good bacteria in your digestive system. Yeah, our digestive system is filled with all kinds of cooties, and we need those cooties. Those good cooties are what we need to multiply like (good) rabbits. Once the good cooties are killed off, the bad cooties, especially candida can take over and wreak havoc. And not just the "inconvenience" of having a smelly yeast infection or thrush, which are gross, but I'm talking systemic problems: brain fog, digestive problems joint problems, exhaustion, irritability, headaches, rashes, sugar cravings, and worst of all- zits! oh Lord not zits! http://www.candidasymptoms.net/#candida_symptoms . Know what else causes candida overgrowth? Steroids. Prednisone. Oh the irony.

OK, that's a lot to chew on, even though it's gluten free. And you could just go on a candida diet or gluten free diet without getting tested, but trust me. Both of those diets are so challenging, especially at first, that you'll want to know for sure that you need to be on them. It will help you stay motivated. You can get tested for heavy metals, candida antibodies, celiac and gluten intolerance antibodies, and vitamin deficiencies and most of these tests are just blood tests. The celiac one can involve an endoscopy and that's  a bigger deal, but if you have celiac and find out, it would be a life-changing piece of information.


Until next missive-
Carla

Carla Ulbrich, The Singing Patient
_____________
www.thesingingpatient.com
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich

"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

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

Sjogrens vs Lupus: Smackdown

OK this is going to be a long rant. I'm mad.

I am a regular contributor on Allexperts.com, where people can write in about, well, anything, and ask an expert their question. I signed up as an expert in lupus. From the angle of living with it for 20 years and trying everything under the sun to deal with it. And some of it working quite well. But that's another post and not part of this rant.



What saddens me is the question I get the most often. It's not "I have lupus- now what?" or "Is there anything I change in my lifestyle to help reduce my need for medication? or "How do I keep my spirits up?" or "Hey Carla why are you so awesome?".... No, the question I get the most often (in various iterations) is... (have you guessed yet?)- "Why doesn't my doctor want to diagnose me with lupus?"



Now at the risk of sounding like a "back in my day" story... Back in my day, if you had a positive ANA test and 4 of the 11 classic lupus symptoms (see list here http://tinyurl.com/3lwpa78 ), you got diagnosed with lupus. Of course this was after 2-5 years of schlepping around to various doctors being misdiagnosed before anyone even thought to look for lupus. But once they started looking for it, now all you had to do to qualify to join the fabulous club of lupies was have 4 symptoms and a positive ANA.


Not anymore. I guess the lupus club has too many members now, much like how academia has too many PhDs. Now they have to figure out a way to weed out candidates and discourage them (raise the minimum SAT score, take fewer candidates, jack up tuition, act like an ass so they don't want to stick around...). All in hopes that they either give up and go away (gee, also reminds me of applying for disability) or it takes them so long to finish their degree that you're already retired when they graduate.

Maybe the CDC has put a cap on how many new lupus cases are allowed a year, lest we have an epidemic reported (never mind that we have an actual epidemic- just don't let it show up on paper!). Maybe doctors have been watching too many episodes of House "it's never lupus" MD and have started to believe it really isn't ever lupus. All I know is if you want a lupus diagnosis in 2011, you're in for an uphill battle. Oh yeah, on top of your uphill health battle. Because being sick is apparently not enough to have to deal with. Now you have to diagnose yourself then build a case and convince them to give you the diagnosis you went and figured out for yourself. And then pay them for the privilege.

I suppose one reason I was ultimately diagnosed with lupus, and very definitively, and despite the fact that I am also positive for Sjogren's, was that I had 10 of the 11 classic lupus symptoms, plus all 4 "bonus" symptoms. (here's the list again: http://tinyurl.com/3lwpa78 )

I wish that story weren't so common. It's terrible how people suffer because they aren't listened to carefully enough.

20 years ago, when I got sick, not enough doctors would think to even look for lupus. Now it seems like they've all heard of it, but all they've heard is "it's never lupus- call it something else." I would love to get to the bottom of this trend. Why are they so resistant to giving a lupus diagnosis? Someone please tell me. I'm sure the answer will enrage me (even further), but I want to know.

It still happens even after getting diagnosed- they want to un-diagnose you! I've been living with this for 20 years and still every time I see a new doctor, they don't believe that I have lupus- even when I bring them my 10 pounds' worth of old medical records. They run all the tests all over again. Seriously, they look at me accusing and and say "Who told you you had lupus?" I'm like, "You want the list alphabetically or chronologically?"

Why would I lie about such an annoying and socially disrespected disease? If I picked a disease I'd pick something that's not a punchline. But they have to run their tests and then march back in the next day and announce to me that I have lupus. Wow, how *ever* did you figure that out, you mad genius?

The current favorite substitute for a lupus diagnosis that I hear over and over from patients writing to me on Allexperts.com is Sjogrens. (and sometimes "Mixed Connective Tissue Disease").

Being diagnosed with Sjogren's does NOT mean you don't have lupus. You can absolutely have both. I have Sjogren's and Lupus- and also Raynaud's. All 3 are autoimmune. It's very common to have more than one autoimmune disorder. Some say I have "secondary Sjogren's" - meaning the lupus is the primary disease. I would agree with that, but whatever.

Let's break it down and cross-reference the symptoms lists. There is some overlap. Short break from rant while we insert lists.

Sjogren's syndrome symptoms include:

• dry eyes
• dry mouth
• joint pain or inflammation (arthritis)
• Raynaud's phenomenon
• lung inflammation
• lymph node enlargement
• kidney, nerve, and muscle disease

(from http://www.medicinenet.com/sjogrens_syndrome/page2.htm#3whatare)

lupus symptoms which overlap with Sjogren's symptoms:

•  Raynaud’s phenomenon
•  joint pain/ inflammation
•  lung inflammation of the lining around the lungs (pleuritis)
•  Kidney disorder – persistent protein or cellular casts in the urine
•  Neurological (nerve) disorder – seizures or psychosis

   

lupus symptoms which do NOT overlap with Sjogrens:

• Fever (over 100° F)
• Extreme fatigue
• Hair loss
• Inflammation of heart lining
• Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
• Discoid rash – a rash that appears as red, raised, disk-shaped patches
• Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
• Oral ulcers – sores appearing in the mouth
• Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count),   lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
• Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
• Abnormal antinuclear antibody (ANA)

If you have any of these in this second list, definitely be sure to mention them to your pill pusher. I mean doctor.

A few things to consider asking for:

• kidney function tests.  Sjogren's or lupus can affect kidneys.
• a second opinion. On that visit, I suggest you bring a list of all your symptoms so you don't forget to mention anything. I would put a star next to any symptom on your list that cannot be explained by Sjogren's. If that doctor also insists you only have Sjogren's and not lupus, ask him to please explain what he thinks is causing your non-Sjogren's symptoms- especially if you have rashes, hair loss, anemia, fever (and of course your positive ANA test).
• consider bringing a trusted friend to your appointment with you. Doctors are used to that.

End of rant, and a few reasonable parting words:

Lastly, try not to be confrontational with the doctor. If you push, they usually push back. Try using language like "I'm concerned" "Can you help me figure out" and "do you think...?" We want a spirit of cooperation (not submission, cooperation) and so try to use that kind of cooperative language, even though you must be frustrated. Take a deep breath, and

And if you are a praying person, that doesn't hurt either.

My best wishes to those who are struggling for a proper diagnosis-

And one last thing...  %$#*&*#*!!

Carla

Carla Ulbrich, The Singing Patient
_____________
www.thesingingpatient.com
www.bestpossibleme.com - health coaching
www.youtube.com/user/carlaulbrich - funny songs
"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

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