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
PS Just learned that there is a new updated infographic from these same folkswith lots of new info on it:
http://www.achieveclinical.com/news/lupus-awareness-month-purple/

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..."

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?"

Eating Gluten Free on Vacation

-->

Guest post: Eating Gluten Free on Vacation

Whether remaining gluten-free is a personal choice or a healthy necessity, vacation has a way of screwing up the best thought-out diet. Traveling means eating at restaurants, snacking on the road and trying new things – managing a gluten-free lifestyle is more difficult when you must deal with the unexpected. The key to staying healthy is planning.

Before You Go

Hit the road with a full stomach whether going to the airport or driving to your location. Travel is exhausting. There are bags to move, lots of walking to do and the stress of trying to figure out where you are most of the time. Eating before you go eliminates the need to settle for whatever you can find at the last minute. Start the vacation right with a healthy meal. That is one less you have to worry about while on the move.

Find the Right Lodging

Look for lodging that offers you the opportunity to cook, even if it is just a small refrigerator and microwave. Online travel sites let you select amenities you want in a hotel. This is a practical approach to finding a place with a kitchen. If the establishment has on-property restaurants, look on the website for menus to see what foods are available before making a reservation.

Consider calling ahead of time to let the hotel know you have an issue with gluten. This gives them the chance to wow you by stocking the mini bar with appropriate snacks or having items in the continental breakfast that are gluten-free. Corporate hotels may be prepared to deal with guests who have Celiac disease or another health issue that restricts their diet.

Use that same approach with airlines if flying for many hours. Let them know when you book the ticket that you have diet considerations.

Shop Around for Healthy Restaurants in the Area

Pick the places you want to try ahead of time. If you know what restaurants are available in the area, you can avoid problems when you go out. One of the major factors that I have found that made a difference in my travels was when I began to read the reviews on the areas and restaurants of where I was staying before hand. Without this knowledge, it is practically a free for all when you get to where you are going and this is what often leads to unhealthy eating and nearly impossibly to meat the gluten-free needs. In my recent travels out west, the reviews from other travelers proved pivotal to finding one of the rare Las Vegas Hotels that had a vegetarian menu.  When you are making a reservation at these restaurants, let them know you need gluten-free options so they can be ready. Just like the hotel, most restaurants survive on tourism and want to make an impression by helping you out. Make a list of foods that contain gluten or special handling instructions you require and carry copies with you to hand out, as well.

Pack up an Emergency Kit

Pack an emergency travel kit, so you have food to eat if you are stuck. If the family is at a restaurant or in a theme park and you are left with few gluten-free options, the emergency kit can fill in what you can’t buy.The emergency kit would include items that are easily stored and can be used to make a quick meal if need be. This could include some gluten free bread and peanut butter, or perhaps even a few gluten free protein and energy bars. The purpose of these items is simply to hold you over until you can find a place to feed your body with the appropriate foods.

Staying gluten-free and staying at home does not necessarily go hand in hand. People are better educated about food allergies and illnesses like Celiac disease than they used to be. The world is becoming more health conscious place to live. This means going on the road is not just possible; it is practical, as long you know your limitations and plan ahead for the trip.   

Cole Millen is an avid traveler and foodie who never forgets that life's best memories are made through real life apprehension of legitimate "experiences."

----------

How do the rest of you deal with eating a special diet when traveling? Eating out? Ordering takeout? Eating at a friend's house? Do you bring your own food? Bring enough of your own gluten-free food to share with others? Share your thoughts and challenges in the comments section!

Carla

Carla Ulbrich

The Singing Patient: Author, Survivor, Humorous Songwriter and Entertainerwww.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?"

Losing someone you love- slowly

As part of a writing class I'm in, we were supposed to write out own eulogies, from the point of view of a loved one, and another from the point of view of a coworker/ boss/ client. It was interesting timing, because I've been thinking a lot about my Dad, and what his life meant (and means still).

Dad is still around but we are losing him, a little piece at a time, to Alzheimer's. I live 800 miles away so I only see him a few times a year. When I'm back in my hometown I go see him every day for the 3-4 days I'm there. I take him for a walk, because I know how he loves being outside and getting fresh air.

What can I say about my dad? One day I will probably have to say something at his funeral.
My Dad is a very smart man. He has a PhD in physics. I used to ask him for help with my math homework- actually I only did that once or twice, because he would get so excited about the topic he'd go on for hours and hours. I was trying to get my homework over with and he was savoring it like a fine French wine.

My Dad had 2 sailboats and won a lot of races in them. I learned to sail at the sailing club where he kept his boats. He built furniture. He tried out for the Boston Braves (before they moved to Atlanta). He could fix anything. He coached my Y basketball team. He played the trumpet. He worked on cars. He built computers. He was an accountant briefly and was in the Coast Guard long enough to get the GI bill to pay for college, where he met my mom (who also has a PhD). He used to ride his bike to campus. He made his students work hard. He had a lot of interests: stamp collecting, building picture frames, baseball. He loved music and listened to it with a deep appreciation, not like it was acoustic wallpaper. And he had a great sense of humor. Everybody loved my Dad. Even when I was in 8th grade, when nobody liked any adults, my friends would say "Your dad is so cool!"

Now he is in a nursing home with Alzheimer's. He wakes up several times in the night thinking it's morning. He'll take 3-4 showers a day. He will forget to eat. He really needs the structure of the nursing home, and he's pretty happy there for the most part. The nurses like him and he gets a fair number of visitors. Once in a while he doesn't understand why he can't have his car keys.

He told me his ears were bothering him so I asked the nurses to get someone to clean them out for him. Turns out he had stuck a hearing aid *battery* stuck in each ear. Woah. And yet, he can still do quantum physics. And he still knows who we all are. What's really nice is how appreciative he is to see us, and how loving and sweet he is now. He wasn't like that when we were kids. He wasn't mean, he just wasn't openly affectionate.

I write him letters every week (he no longer can figure out how to do e mail), and my sister tells me he *loves loves loves* them. I try to keep them light and include a comic strips from the paper. He never writes back, but having my sister tell me he enjoys them means I will keep writing them.  When my Grampa (Dad's Dad) was widowed, I wrote him a few letters but he never responded so I stopped writing. Now I know he probably read them.

My mom is selling the house, so I inherited his record collection, which I am excited about digging through. It's strange to inherit things from someone who is still alive. It makes the loss very real. And yet he may live a long time. So, while he is alive and knows who I am, we have a chance to have the relationship we didn't really have as I was growing up. And although I'm sad to lose him, right now I have more Dad than I ever did.

Sometimes when people are given a terminal diagnosis, they hold their funeral while they are still alive. There was an old TV show called "This is Your Life" where they would honor people and reunite them with old teachers or other meaningful people in their lives. I would love to throw my dad a party and have people come tell him all the nice things they never got around to saying. But parties overwhelm my dad. So I guess I'll just put it in a letter.

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?"