Dancing My Butt Off

People have been asking me about my weight loss "secret." No, I am not taking phen phen. I'm taking tap dance lessons. I don't know how good I am yet at the shuffle ball change but I've certainly had a shuffle butt change. My husband appreciates the change, but I'm not sure how my next door neighbors are enjoying the tap dancing...

When I watch shows like this Biggest Loser (actually I don't watch that...) or Celebrity Fit Club (is that still on?)... anyway, on those weight loss TV reality shows, the contestants are often doing long hikes or pushing around huge tires, or literally dragging around a ball and chain like an old school prisoner. They lose weight very fast and it makes for great TV. But like most "reality" TV, it's not realistic.

Does anyone really think once the show is over that these folks are going to buy a huge tire and push it around the yard, or get a ball and chain and run around the public park with it? I always thought the time would be better spent helping them find an exercise that suits them and that they enjoy and will stick with. There are so many ways to get in shape, and none of it has to be drudgery. Why not let them try all kinds of sports and activities, like tennis, running, hiking, yoga, line dancing, aerobic dancing, basketball- or even just ask them what they liked to do physically when they were kids?

When I had a stroke, kidney failure and congestive heart failure in 2002, my feet and legs were swollen, filled with water. I couldn't wear shoes. I couldn't even wear jeans, because by the end of the day my ankles would swell up so big that the one time I wore jeans I had to literally cut them off of my because my ankles were so big.

My legs were weak and useless. So I swam. My arms were strong and I always loved swimming. A first I just got in and hung on to the wall and kicked. And I walked very short distances. I mean like to the stop sign and back, like 1/10 mile at first. But all along, while I made these tiny steps of progress, my dream and my promise to myself was that when I got better, I would learn to tap dance. I have always loved aerobic dance and I had several years of ballet and one year of tap when I was a kid.

Tap dance was on my bucket list. It took a while, but I'm finally doing it. I had to get fit first, so I started with Richard Simmons videos. In fact, I started with doing just one song on a Richard Simmons video. (Here's my blog post from 2 years ago when I met Richard Simmons and attended his aerobics class http://lupusandhumor.blogspot.com/2011_03_30_archive.html ).

Eventually, the Richard video was too easy and I found a line dance video that was harder. Finally I was fit enough to go get some tap lessons. I'm not really a natural. It has taken me 2 months to learn to do a pirouette without falling over. But when I get decent at it, I'll post you a video right here of me tap dancing.

So I don't really watch the scale. Once every week or 2 I step on it to make sure I haven't been overeating or under-dancing. But I've dropped 2 sizes without really trying and I'm stronger and I'm learning a skill- a fun skill.

What does fun exercise look like for you? Dance? Polo? Gymnastics? Hiking? Biking? Ping Pong?

Carla
P.S. Here's a song from a time I lost TOO much weight. But not from exercising. From being sick, then taking diuretics (for my kidneys) while on a strict diet.  

 

Carla Ulbrich

The Singing Patient:
www.youtube.com/user/carlaulbrich
 

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:




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.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 is Lupus?

Found this great infographic to share with you. May is lupus awareness month, and I have been planning to write a series of posts addressing the most commonly asked questions about lupus "What is lupus?" "What are the symptoms of lupus?" "Is lupus genetic?" "Is lupus contagious?" etc... Well, this infographic answers quite a few of the most common questions. But not all of them, so I still have something to write about. Meanwhile, here's a quick guide to lupus for those whose only knowledge of lupus is that "it's never lupus."

Lupus Infographic infographic by manro. 

They need to work Toni Braxton into the "celebrities" section, because she has been very open about her lupus, and that is risky for someone who is still actively pursuing a career in entertainment.

What else would you want to be included on this infographic? 

Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
http://www.youtube.com/user/carlaulbrich - funny medical songs

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

Defending the lupus diagnosis

Hi Carla,

I was diagnosed with Lupus 21 years ago. I understood from that rheumatologist that I had tested positive for ANA.  Now I have moved and am seeing a new rheumy.  She ran tests and my ANA was negative, so she now says I don't have lupus.  I had many positive ANA test results over the years. (Unfortunately I tried to get old records and was told they are not available.) Now the doc says I have Sjogren's. I had the lip biopsy done years ago it was negative, although I do have a dry mouth and teary eyes. I don't dispute that I could have Sjogren's but not in place of Lupus! Isn't just possible I am not flaring or do you have a positive ANA at all times?  The new rheumy won't budge on this, even though 2 previous rheumies treated me for lupus!
Any thoughts on this?

Hi -

Thanks for writing in. This sounds very frustrating, and you are not alone. I've been hearing from so many people over the last few years who have practically every symptom of lupus but can't get any doctor to utter the word "lupus." I'm starting to develop a conspiracy theory over this. It frustrates me on behalf of everyone who is told they don't have lupus when just 5 years ago they would have been told they definitely do.

Yes you could absolutely have both Sjogren's *and* lupus. It is very common for people with an autoimmune disease to be diagnosed with 2 or 3 or even more autoimmune diseases. I've been diagnosed with lupus (SLE), Raynaud's, Sjogren's (all 3 are autoimmune) and fibromyalgia. In my case, they call the Sjogren's "seecondary Sjogren's" which either means it was caused by the lupus or is overshadowed by the lupus (IOW the lupus is the bigger problem in my case).

No one has ever denied my having lupus, but I have definitely had to defend it every time I move and get a new set of doctors. Luckily (ha!) for me, when my lupus flares up, I get every symptom in the book and my ANA goes off the charts and my kidneys start to fail. So the same people who first came in and said to me "WHO TOLD YOU YOU HAVE LUPUS?" like I was lying to them- why would I want to lie about having lupus? - those same people then march in after the tests come back and announce to me "You have lupus," as if they discovered it themselves and are some kind of medical genius. So annoying. So, I kinda get it, how frustrating it is.

Now as to the ANA test. That has NEVER been THE "lupus test." You can have negative ANA and have lupus. You can have positive ANA and NOT have lupus. You'll see on this page from the Lupus Foundation of America (great organization by the way, focused on support and education of lupus patients) that "lab tests alone cannot give a definite "yes" or "no" answer." http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2240&zoneid=524

Similarly, the Alliance for Lupus Research (another great organization, focused on lupus research) says that "no single test can be used to diagnose lupus" (http://www.lupusresearch.org/lupus/what-is.html ).

So anyone who is telling you that you MUST have positive ANA to be diagnosed is misinformed or is looking for a reason to deny you the lupus diagnosis. (This is where I start feeling like a conspiracy theorist- why would they want to deny a patient the correct diagnosis? I mean how do you get correct treatment and education if you don't know what you have? Why?

I wrote a blog post on this topic 2 years ago, comparing the 2 diseases (Sjogren's and Lupus) and sharing my conspiracy theories. I just re-read it and it says everything I would say to you if we were sitting across the table chatting (or ranting).  http://lupusandhumor.blogspot.com/2011_09_01_archive.html

It's my most popular blog post, and that makes me sad.

Meanwhile, Know that a lot of the treatment (immune suppressants) overlap so the treatment may not be all that different.

And also know that the alternative medicine that helps with one autoimmune disease will probably also help the other. (Check out this article from Dr Mark Hyman http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-you_b_657395.html ).

So, in a way, it doesn't matter a lot which disease you have if the treatment remains the same. In another way it does matter, because having a diagnosis taken away from you kind of feels like all your suffering, in their minds, never happened.

Still, this situation of doctors refusing to diagnose people with a disease they obviously have upsets me very much. I can't see any morally justifiable reason for doing that.

I hope you get the answers and help you need from a doctor who listens to and respects you.

All my 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?"

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..."

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?"