Does Diagnosis Even Matter If the Treatment Is the Same?

Hello,
I was test for auto immune and told "probably lupus." I had a skin biopsy which stated "could be lupus." My rheumy does not think it matterswhat the diagnosis is because the treatment is same whether it's lupus or MCTD.

I have or had over the past 30 year all or almost all of the criteria on the lupus list. My problem is that they have not happened altogether at once.

Also, about the kidney: a few times my urine was coke color, but it was never collected at the time. Never know when it will happen.

Is my doctor right that it does not matter what the label of the disease, or should I be told?
Thank you.

Hi-

Thanks for writing in.

I believe it's important to keep a symptom diary so doctors can have the most data to work with.
That is my first suggestion. Start keeping track of your daily symptoms. Also go back and reconstruct as much as you can, when you think this started, what your first symptoms were, and all symptoms with dates as well as you can remember.

It took me 2 years to get diagnosed with lupus, because I kept going in with different symptoms each time, and was so exhausted I couldn't remember all the other symptoms I'd had recently. No one suggested I keep a symptom log. I think it's important to have as much data as possible when you've got autoimmune stuff going on.


If you have odd-colored urine, maybe go into an urgent care center (they are fast and do walk-in appointments and sometimes have a lab on site). Ask for a urine test, telling them your concern about the odd-colored urine. It could be blood.

I think having a specific, definite diagnosis is helpful because
1) it makes it so much easier to go find books and support groups and read up on all your options.

2) Yes the treatment is basically the same for most autoimmune diseases. In mainstream medicine: immune suppressants. In alternative medicine: build up your health through nutrition, rest, and sometimes alternative therapies like acupuncture or reiki, etc. But there are some things that are specifically bad for certain diseases, so I think specific diagnosis is important.

You might like this article by Dr. Mark Hyman on autoimmune diseases: "how to stop attacking yourself" http://drhyman.com/blog/2010/07/30/how-to-stop-attacking-yourself-9-steps-to-heal-autoimmune-disease/

Your doctor has to put some kind of diagnosis code on his forms, so he could at least let you in on what he's writing on the forms. I would ask "What diagnosis are you writing down? Why did you choose that one?"

The odd colored urine is important to report.
Lupus can definitely go after your kidneys. You should be able to find out your kidney function without a biopsy. Pee in a cup, collect in a jug for 24 hours, get blood tests. I've had 2 kidney biopsies- they were a royal pain, they are not entirely safe (you have major blood vessels in your kidneys and could end up bleeding internally or getting infected) and we learned nothing from the ordeal. So I say, collect pee and blood to see if your kidneys are OK.

I know from the people who write to me that doctors for some reason are more hesitant to give out a lupus diagnosis. In fact I wrote a blog post about this- it's my most popular blog post, if that gives you any idea what a problem it is to get diagnosed with lupus these days. http://lupusandhumor.blogspot.com/2011/09/sjogrens-vs-lupus-smackdown.html

I would just ask him to tell me what he's writing on your lab forms as the diagnosis code. You have a right to know.

Hope this is helpful. Wishing you all the best


Carla Ulbrich

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

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"
http://www.thesingingpatient.com
http://www.facebook.com/TheSingingPatient
http://www.twitter.com/singingpatient
http://www.youtube.com/user/carlaulbrich
http://www.linkedin.com/in/carlaulbrich

Come Back When You're Sicker

A few months ago, I was sitting outside in the sun. Upon coming inside my
hands started burning as though I had stuck them in the snow- it was around 60 degrees that day. Soon after I developed a rash on my hand. Then intense pressure in my fingernails which lead to them turning purple and then brown. My hands started aching and feeling weak. They progressively got worse. Now I have days that all I can do is cry bc of he pain and weakness in my hands and arms.

My blood work came back positive for ANA and SS-B but negative for SS-A. I have been waiting to get in with a rheumatologist for almost two months. After a very difficult day last week with my hands and arms, my primary care physician put in a referral to get an EMG and meet with a neurologist in a week.

I am really losing hope and feel like I am losing my mind. 12 yrs ago I was diagnosed with anticardiolipin antibody syndrome but once I got pregnant with my second child I was told it was a misdiagnosis. Does any of this sound familiar or can you point me in the right direction? I just want answer to what is wrong with me.


Hi there-
Thanks for writing in.

I'm so sorry about the long wait for the specialist. I have been there, and it's really frustrating. Sometimes I think they make us wait so our symptoms can get worse, which makes us easier to diagnose. Doctors have said to patients with "mild" symptoms "Come back when you're sicker." If it's bad enough, it'll be so obvious even a caveman can diagnose it.

It sounds like you at least have Raynaud's (the discolored and painful fingernails when exposed to cold),  possibly lupus SLE (the other tests and symptoms do sound autoimmune). Plus you have a history of autoimmune activity. Perhaps the anticardiolipin antibody syndrome was real- not a misdiagnosis- and it went into remission with the pregnancy. 

I'm only guessing. I can't really diagnose anyone over the internet (especially since I'm not a doctor or even a nurse, just a fellow patient, and a holistic health coach).

My real "expertise" is that I have had lupus SLE, Raynaud's, Fibromyalgia, and Sjogrens, for 20 years. So those are the illnesses I am most familiar with. They are all autoimmune, and it's very common for someone with an autoimmune disease to find out they have another autoimmune disease. Or 2. Or 3. They are generally all treated the same way, with immune suppressants, which will get the symptoms under control.

Raynaud's is not a big issue for me, in that I just don't let my hands get cold, then I don't have any symptoms. If they do get cold and they hurt, I run them under warm water for a bit. But I'm not sure my Raynaud's is a severe case. My bigger problem has been the lupus. Everyone is different.

Over the years I've found some natural medicine that has helped me to be drug-free and in remission. But I have used and will use medications if things get out of control.

If things get bad enough for you (hopelessness/ unbearable pain), just go to the ER, or to an Urgent Care facility, and try to get some answers and some relief. I was diagnosed with lupus at an Urgent care center after spending the night in the ER because I was in so much pain. Maybe you can at least get some kind of medication that will stop the pain.

Not knowing what's wrong is a tough place to be.
As is being in pain. So if you need some help or relief before your appointment finally rolls around, go ahead and do that for yourself rather than just suffering while you wait.

I wish you speedy and compassionate care-
Carla

Carla Ulbrich

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

http://www.thesingingpatient.com
http://www.facebook.com/TheSingingPatient
http://www.twitter.com/singingpatient
http://www.youtube.com/user/carlaulbrich
http://www.linkedin.com/in/carlaulbrich
http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

Treatments for Lupus: Prednisone

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

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

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

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

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

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

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

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

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

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

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

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

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

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



From the CD



Carla
Carla Ulbrich

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

Is Lupus 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

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?"

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?"

What To Do While Waiting to Get Diagnosed

Dear Carla-

I have been back and forth to my Dr for over two years. I asked for a blood test to check my thyroid. She ordered a full work up after wondering why I was taking all the meds (5 at that time). Every thing was normal except thyroid.

This past fall was the first time I heard the word fibromyalgia. In January I was referred to a rheumatologist, who ordered updated blood work. Now it shows a 36 sed rate on a scale of 0-15 for men and 0-20 for woman being normal. And a positive ANA. The nurse would not explain what this means.  My appt with the rheumatologist is not for another month.

I have not worked in 2 1/2 years. I used to be a flat roofer, extremely active. Nowadays, just going to the store or walking around the block will knock me out for a day. I'm 47 and I just want to know what is going on with my body and to know that i am not crazy.

Hello -
And thanks for writing.
You're definitely not crazy. Something is wrong and you know it.
And the tests confirm it.

An elevated sed rate means you have inflammation.
A positive ANA means you have autoimmune activity. In other words, your immune system is attacking your healthy tissues. It's possible you may have lupus. I do.

The wait time to see a rheumatologist for the first time is always unacceptably long, and I am sorry about that. I don't think health professionals have any idea what psychological burden it is to be in limbo, tired and hurting and having no idea what is going on and why.

What you can do right now is start keeping a symptom journal. Nothing fancy. Just every day, jot down:
- any symptoms (fever, joint pain, rashes, fatigue, etc.).
- your energy level on a scale of 1-10
- pain level, 1-10
- weight and temperature

Then, when you go to the doctor, you'll have a lot of helpful data to give him/ her.

While you're at it, write out your medical history. Jot down
- all the stuff that went on over the last couple years with your health
- any illnesses in your family (blood relatives: mother, father, siblings, grandparents)
- any surgeries or pregnancies you've had
-  a list of all the drugs, prescription and nonprescription, that you are taking now, and how many milligrams of each, how many times per day.

Try to have all that ready before your appointment. Type it up, print it out, and bring it in. Even if they don't read it, you can have it to refer to in case your mind goes blank when they ask you questions. If you're lucky, they will read through it and put it in their chart.

Collecting this info is something you can do now while you're in limbo waiting for your appointment. It beats sitting around doing nothing, and it will very likely help you get the right diagnosis faster. In my book, getting the right diagnosis is so important- then you can figure out what to do next. Once you have your diagnosis, you can either go down the route of medications, or pursue alternative medicine and/ or nutritional changes. But getting diagnosed will keep you from doing something that might make things worse. Knowledge is power.

You can get your health back. I got mine back. It's all possible.
Just do what's in front of you. Pray if you're a praying person- ask to be given excellent help and the correct diagnosis and the next right step. And collect the data. And do something fun to distract yourself from your worries. That's what is in front of you right now.


Wishing 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?"

Benefits of Laughter

You all probably know I'm a huge fan of humor and laughter. Thought I'd share this infographic with you, courtesy of www.greatcleanjokes.com

By the way, if you're really into learning more about the benefits of laughter and hang around some of the people who are working in the field of laughter study, check out this great organization: www.aath.org or this one www.thehumorproject.org . Each organization has annual gatherings of wonderful folks from all walks of life, and I've attended and greatly enjoyed each.

Carla Ulbrich

The Singing Patient: Author, Survivor, 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?"

Prednisone vs. the killer rash Part 2

In the great battle of Prednisone vs. the killer systemic rash, the prednisone has WON! My rash has pretty much disappeared. As has my prednisone. I took the last one yesterday (it was a 6-day pack where you take 6 pills on day 1, then 5 on day 2, then 4 on day 3, etc.).

These last couple days I was getting headaches from prednisone withdrawal. I knew that was what it was because I've been through prednisone withdrawal several times now. Three times I've been on prednisone for 9-12 months to control lupus, which was attacking my kidneys, lungs, heart, you name it. And every time we cut the dose, I'd feel like crap for 3 days. If we cut it a lot, like from 40 to 30 mg in one swoop, I'd feel like I had the flu for a few days- achy, exhausted, sleeping 14 hours a day. So, it's good to just remember "Oh yes, it's just prednisone withdrawal. It's not me getting sick again, or getting something else. This will pass." And yeah I took an Advil yesterday for the headache. I'm not a martyr.

Yesterday I took my last prednisone pill of the 6-day pack and today I did something I *never* do- I took a nap. For an hour. I really didn't want to get up, with my sweet little furry friend curled up by my chest (the dog, not my husband), but we had a valentine's dinner to go to (with the hubby, not the dog), and anyway if you nap too long, you can't sleep at night. Boy those little furry friends can relax you right to sleep.
Here's our dog making sure my hubby gets a nap:

Before the withdrawal, I got to enjoy a couple days of prednisone mania. Some people use the mad amount of energy prednisone can give you to clean the house. I used mine to write 2 ridiculous songs, start 3-4 other songs, and finish and record one other song I've been working on. This is the fun part of prednisone.

The not-fun parts of prednisone, of course, are the withdrawal, and, if you stay on it long-term: hair loss, weight gain, mood swings, osteoporosis, cataracts, diabetes, insomnia (already have that, pass on having even more thanks!), and that lovely moon-shaped face. I can't believe I'm about to do this, but here are before and after pictures of me on and off prednisone.  I actually weigh *less* in the prednisone picture (the middle picture) than in either of the others. I'm about 95 pounds in the prednisone picture, but the drug puffs my face up so much I look like I weigh 500 pounds. I considered putting pictures like this in my book, but my publisher (probably wisely) decided against it.

Carla before prednisone:

during prednisone (obviously, no makeup):

after being off prednisone for a while (also no makeup):

After having my looks altered this drastically once, you can only imagine how desperate I'd have to be to ever go on prednisone again. But I did. Two more times. I resisted every time because of these effects. It always came down to the realization that I would die if I did not take this drug. So, I owe it my life. But I always do everything I can to not be on it long-term, and that's why I'm on a gluten-free dairy-free, no egg, no nutrasweet diet. Those are my food allergies and if I avoid them, my disease stays quiet. And I don't need prednisone. Unless of course something happens like this past week and I have a severe allergic reaction to something else. But that's short-term prednisone, and I can deal with that.

I've said this before, but I feel it bears repeating: if you are on prednisone, do NOT EVER suddenly stop taking it. Prednisone replaces a hormone that controls your vital organs and there is a lag time between when you stop taking it and when your body starts making it again. This is why you MUST taper off the drug slowly, or you will go into crisis and end up very sick or dead. Or worse, on even higher doses of prednisone.

Well wishes to you-
Carla

Carla Ulbrich

The Singing Patient: Author, Survivor, 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?"

Exercise, Pacing yourself, and Richard Simmons

I committed myself last summer to getting serious about regular exercise, and getting stronger. I had to be patient with myself, and let myself take breaks, work incrementally, and listen to my body. And I love how I feel after a great workout.

Unfortunately, when I've been in the middle of a lupus flare, fast-paced, sweaty aerobic workouts were not an option. I missed them a lot. They were a great stress reliever, fun, and of course good for me.

Pushing too hard too fast can lead to worse than sore muscles or injury; it could set off a lupus flare for me, or leave me in fibromyalgia pain for several days.

One other consideration: I also had to pick a workout I like.
I love music. I love to dance.  So one of my "when I'm better" fantasies was to be able to again do the aerobics record (yes, record! an LP!) that I used to do when I was 15. I loved that record. I forget the title of it, but it was Joanie Greggains and it had all kind of great music on it: Hall and Oates, BeeGees, Village People. Not on my top 10 favorite albums of all time, but great music for working out. And way better than that boring drum-synthesizer non-music track on most music videos these days.

Of course, after I had a stroke in 2002, I couldn't even get up and down one stair, never mind do aerobics. So back then I started really small. I got in the pool and kicked around. Then when I could get up and down the one stair to the outdoors by myself, I went for short walks. To the stop sign and back. A few yards further each day, with my cane, never far from the house, just in case I fell. I worked on it a little every day. Eventually I could climb stairs and get around normally, without a cane.

Fast forward about 2 years. I found a copy of that Joanie record on ebay and Joe transferred it to CD for me. But there was no way I could do the workout. I mean I was literally crawling up the stairs on all fours at that time. How was I ever going to be doing jumping jacks, leg lifts, and running in place? I tried it anyway, in a moment of pure wishful thinking/ delusion, but I just could not get through it and I ended up with a big migraine.

So I started out just walking. Brisk a walk as I could do, which for me was one 20 minute mile. I know that's not fast, but that's what I could do. Me and my ipod, with David Lee Roth singing "Just a Gigolo," looping around the neighborhood. After I eliminated dairy from my diet, I had more energy and I threw in short little passages of jogging. Bolstered by my newfound energy, I decided to try the Denise Austin "Fat Burning Blast" 25-minute workout that I used to do (on VHS). Aimed too high again. Needed percocet that night. Back to the walk/ jogs.

Then I remembered Richard Simmons. His videos don't have a lot of jumping around, and that jumping was what always aggravates my system. So I got his Disco video (great tunes!). And at first, I just did one song. Because it takes me time to learn all the moves, and I had no stamina. Then two songs. And after a couple months I could get through the entire workout.

After sweating with Richard all summer, I went back and did the Denise Austin video and now I could handle it just fine! So, I added in a Dancing with the Stars video to the mix. Wow, that was hard. I had to stop the video and catch my breath a few times. But no pain. It took a while, but now I can get through the first 2 dances (that's 30 minutes of swing and jive) without much trouble. So... it was time for the ultimate test: Joanie Greggains! I put on the CD, and Yes! I did it! And I felt fine. It was challenging, but I did not need percocet or any other remedy afterwards.

People whose lupus is not under control have to be even more gentle and more careful. It's important to move. It's important to be wise. It's also important to hope and to try.

And it was patience, persistence, listening to my body, and Richard Simmons and his totally doable workouts with fun songs that made it doable for me. Dare to dream big, but start small and check in with yourself.

Yours in 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

Happy Things Jar

It's only January 5, so we're not too far into the year, and really it's never too late to start something good. So I thought I'd share a nice idea that's been going around the internet this past week: a "good things" (or "happy things") jar.

Take any clean empty jar with a lid- mason jar, spaghetti sauce jar.
Each day, write on a slip of a paper and put in the jar any of these kinds of things:
- something that made you smile today
- something that made you laugh out loud today
- an accomplishment
- a compliment someone gave you
- anything else good you want to put in there (ideas? comment below!)

It's kind of the reverse of resolutions. It's appreciation.
The remarkable thing about appreication and gratitude, is that the more gratitude you show, the more you have to be grateful for.  The Law of Attraction would say it's partly your growing awareness, and it's also the kind of energy you attract when you are grateful. You begin to attract more good things as you are in a the kind of similar state of being. Like attracts like.

Regardless of whether you believe in the law of attraction, or whether you think it's a bunch of hooey, what a treat it will be to open the jar on December 31 and relive each joy in your "good things" jar.

I just started my jar, and I plan to put in both big and small things, like finding out yesterday that my book has been translated and published in Thailand... and getting a warm fuzzy e mail from my cousin. I haven't decorated my jar yet, and I may not even get around to doing so. But I do plan to put at least one new and good thing in it every day.

Who else is up for starting a good things jar?

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

Come Back When You're Sicker

Question:
I've had dry eyes for 12 years, constant phlegm in my throat for 3 1/2 years, dry mouth for 6 months.  7 doctors over 3 years can't figure out the phlegm problem. When the dry mouth came along 6 months ago, the internet led me to Sjogrens.  My primary doctor said, "Maybe. But if it is, there is nothing we can do but manage the symptoms."

At my annual eye appt., I told my eye dr. about the phlegm and dry mouth (he of course already knew about the dry eyes) and he said we need blood tests: "sounds like Sjogrens but we need to find out if it's primary or secondary."  Had the blood tests last week.  Can't get into a Rheumatoligist until the end of January.  In looking at the blood tests I still have no idea what I have.

ANA screen is positive and speckled (1:40). Rheumatoid Factor: 11 - says less than 14 is good.  Sjogren's Antibody (SS-A): negative.  Sjogren's Antibody (SS-B): negative. SED RATE: 2.  It sounds like Sjogrens but the blood test says no.  I read that of 11 Lupus symptoms and you need at least 4 to probably have lupus.  I only have the positive ANA. None of the other symptoms.  My middle right hand finger has been hurting at the bottom joint for a week and a half but I don't know if I injured it or if it's arthritis coming on.  That is the only thing close to maybe having 2 Lupus symptoms instead of just the ANA. I am baffled.  Any ideas?


Hello!
Thanks for writing.
It sounds like your symptoms are not severe enough yet that they have developed into an easily-diagnosed disease.

That's bad news in that it's hard for you to get an answer but good news in that you still have pretty good health and quality of life, it sounds. Doctors often tell someone like you "come back when you're sicker" so it's easier to diagnose. How about instead, if you don't get sicker and just get all better?

It definitely sounds like to me that something is "off" and you are getting warning signs from your body that you are on the wrong track, either with stress, or your eating habits, environmental allergy, or something else in your life that needs to change. It's causing your body distress and the symptoms are its way of asking you to get back in balance.

First I would look for food allergies, or other allergies, because of the phlegm.
The first thought that came into my mind when I read your message was "Is she eating dairy regularly?" Dairy can cause a lot of phlegm. Other food allergens are gluten, soy, eggs, nuts, corn, yeast.

Have a look at this article from Dr. Mark Hyman and see if it resonates with you.
http://drhyman.com/blog/2012/02/22/how-hidden-food-sensitivities-make-you-fat/



Another progressive, nutrition oriented MD is Dr. Joel Fuhrman (www.drfuhrman.com). He has had numerous success stories with healing "incurable" "chronic" diseases like Psoriasis and Lupus (and probably Sjogrens too- many people with lupus also have Sjogrens diagnosis, including me). I have reversed my bad blood tests and vastly improved my health by eating gluten-free and dairy-free and getting rid of nutrasweet (asparatame, diet coke) and eating a lot more plant food.

You don't have to slide downhill. You don't have to end up witha  disease that you can just "manage." You don't have to live with phlegm in your throat for the rest of your life. You can nip this in the bud and not have it turn into Sjogren's, or any other autoimmune disease.

well wishes-

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

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

Sharing Your Experience, Strength and Hope with Others

I'm a contributor to the website Allexperts.com on the topic of lupus.
I frequently get questions from people asking me to diagnose them- they send me all their lab numbers and want me to tell them whether I think they have lupus.

I guess they figure allexperts.com is manned with MDs or lab techs who are answering these questions in their free (ha!) time, but no, it's usually just folks like me, a fellow patient with a few more years' experience.

And even if I were an MD, I don't think I would diagnose someone over the internet without actually seeing them in person.

Still, I am really glad people reach out for help and write to the website, because it's so important not to just sit at home alone wondering if you're going to be OK while you're waiting for 3 months to see the specialist, in patient purgatory.

Most recently I was asked whether lupus was genetic and whether there were any new breakthrough tests. Here is my response (with name removed):

Hi-
Thank you for writing.
I'm so sorry for all that your family has endured.

There still isn't really definitive proof that lupus is genetic, but there definitely seems to be a connection to pregnancy and things flaring up.

Regarding tests- I do not know of any breakthrough tests.
But I can tell you if you ever do get definitively diagnosed with lupus, the medical solution will be to suppress your immune system. That will give you relief from symptoms, but as you can imagine, going through life with a suppressed immune system has its own set of problems that come with it.

I don't know about you, but when I developed lupus and my body was turning against itself I wanted to know why, for heaven's sake! All these tests and drugs and diagnoses- but no one could tell me WHY?

20 years later (I was diagnosed in 1993 after 2 years of going to doctors getting one different diagnosis after another until they finally looked for lupus), I have come to believe that my illness was caused by chronic stress and a diet lacking any real nutrition. I drank a lot of diet soda and rarely ate a fruit or vegetable, worked at a job I hated, 6 days a week, and had no time for fun or for doing what I wanted to do with my life. Not a recipe for well-being!

In 2002, I had 2 mini-strokes and was on 9 drugs plus chemo and transfusions to get the lupus problems under control. I am now symptom-free and drug-free. I live a life I love and I eat a lot more real food (I'm not perfect- I do eat chocolate!).

I was tested for delayed food allergies (most regular MDs will not take that seriously), and after I eliminated gluten, dairy, and nutrasweet, all my lupus tests went negative- as in no sign of disease.

So... I'm just one person, but I'm one very healthy person who used to be very sick. In fact I'm healthier than most of friends who don't have lupus! I do aerobics 3-5 times a week (Sweatin' to the Oldies never gets old!)- this is something I only dreamed about when I was hobbling around using a cane, unable to leave the house for a month because I couldn't get up and down the one stair to the outdoors. We can get better.

I wish you well, my friend, and send you love light and hope
Carla



Having read and answered dozens of these questions now, I think most people who write in are looking for hope and reassurance, and to know that someone cares.  If you have some of that to offer in any area and are willing to give an hour or so a week of your time, hop on over to allexperts.com and sign up to be an expert. Or join a local support group, or an online chat group, if you have an illness, and be there to help people who have just been diagnosed. You might be surprised what you have to offer a fellow human being who needs a little support.

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________

www.thesingingpatient.com- performance  info and dates
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 Carla's book! http://tinyurl.com/348hroc

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

Gratitude

The other day I went to a lupus support group to speak and sing and share, as they say in 12-step, my experience, strength, and hope.

There was one person in the meeting who was in a really tough place, and had got to the point where she was paranoid that wherever she went, people were going to lock her up just for being too sad. Of course she's sad- she has lupus, it's bad right now, and she is getting no support at home. And being in the Bronx, going to a clinic, they really might have locked her in a psych ward. Unfortunately, there is financial incentive for them to do so. But as we listened to her, it also became clear that she was working herself into a frenzy.

I've been there. When everywhere you turn, people are just sending you to voicemail, or telling you they have their own problems, or shoving you off onto someone else, it's very easy to have no hope and to get stuck. But this is the time when it's most important to find hope- when there seems to be none.

If you are fortunate enough to have friends (or even pets) who will love you unconditionally until you are past the crisis, you are blessed. Not all of us do. And even if you do, it's very important that you rely not just on them for your hope and your smiles and your motivation, but to find it from within.

Even the best of friends can't be there 24/7 and they can't crawl inside your head and battle those thoughts and feelings for you. That part of the battle, you must do on your own. And if you do not get up and fight, eventually you will drain the resources of those around you, and you will still be stuck.

I remember when I was very ill 10 years ago, I was listening to a friend tell me about this awful thing that happened 7 years before. She was so upset. I held her hand and listened. And then a few weeks later, she told me the story all over again, and I listened again. Now remember, here I am on 9 drugs, just had a stroke, can't get up and down one stair, so I'm trapped in the house, and I'm up most of the night because of neuropathy (nerve pain); I'm on medicaid, so I'm spending most of every day in a waiting room, waiting 2-4 hours for my appointment.

I had problems. We all have problems. But she was upset, so I listened. Until the 3rd time. By then I had watched her tell this story over and over to anyone who would listen. I realized she wasn't looking to solve them; she was just staying stuck, and anyone who listened was investing their energy and compassion, but making no difference, because she was stuck and would not do anything for herself.

That third time she started to launch into the same story, I said, "Listen. Do you think I like being on 9 drugs, with diuretics that make me poop in my pants, getting chemotherapy, having a hand that doesn't work, not being allowed to drive, unable to get up and down one stair, up all night in pain, and spending all damn day every day in the waiting room being ignored?" It stopped her in her tracks. It was totally out of character for me- I'm not confrontational. But I was tired of watching her sink into self-pity, drain me of energy, and then have her start up all over again at the drop of a hat. She said, "Oh. I guess other people do have problems."

I don't usually run around quoting the bible, but remember St. Paul? He suffered from something physical- we're not quite sure what- it was referred to as a "thorn in his side." But he learned to be content no matter what his circumstances.  How? By choosing his thoughts. Yes, you can choose your thoughts. Meaning, you can choose which ones you focus on.

Philippians 4:8

New International Version (NIV)

 ⁸ Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

When I was told I would need new kidneys in 5 years, I cried for an hour. Then I got mad and said, "This is unacceptable. I will not accept this." And I started fighting again. At that point, I'd had lupus for 10 years, and I had tried dealing with it both ways: lying around hopeless, being a victim of the disease and my awful circumstances; and getting up and fighting. Getting up and fighting got much better results. So this time, instead of spending 6 months being sad and hopeless, I only needed an hour. I remembered what I was able to accomplish in reclaiming my health the first time, and I made an inner decision that I would again reclaim every single thing I had lost- and more, just for good measure. I'm no St. Paul, but I had figured out that every day if I focused on my progress instead of what I still couldn't do, I was motivated and hopeful.

In the movie "A Beautiful Mind," (based on a true story), professor John Nash descends into schizophrenia. There was a line in the dialogue near the end, that I found very interesting.  He was eventually able to reclaim a great deal of his sanity, and it had a lot to do with choosing his thoughts. I don't have the script, but to paraphrase, "Yes, I still hear the voices. I just don't pay them much attention."

I'm not asking people to pretend their problems don't exist. I'm simply asking to also acknowledge that there are good things at the same time, and to try to give more attention to those things. When I wrote about the importance of gratitude in my book ("How Can You NOT Laugh at a Time Like This? http://tinyurl.com/348hroc), I did not mention the above story about my friend with her "stuckness" because ... well, I didn't want to hurt feelings. (Hopefully, she doesn't read this blog.)

There is always something to be grateful for. And gratitude is one of the best ways to pull yourself out of a funk. When you feel the least grateful- that's when gratitude will help the most. For 21 days, commit to writing down 3 things that you are grateful for, when you get up, and right before you go to bed, It takes very little time, but you will notice a shift in your focus.

Yes, if you are looking for things to be upset about, you will find them. But the flipside is, if you are looking for things to be grateful for, you will find those too. It's all about retraining your mind to look for the latter. And the more you exercise gratitude, the easier it becomes. It becomes a healthy habit.
Choose life. Choose hope. Choose gratitude.

Well wishes-
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

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

Food Allergies Part One

A long time ago, I read a chapter in a big gray booked simply titled "Alternative Medicine."
It's a fantastic book; it has info on all kinds of ailments and their suggested methods of alternative (non-pharmaceutical) treatments listed for each.



Of course, I turned right to the chapter (well, page) on lupus. One thing that jumped out at me was the claim that 100% of lupus patients have food allergies. ONE HUNDRED PERCENT? That makes the odds of my having food allergies, well, 100%.

So how was I going to find out what my food allergies were?
I did some poking around, in slow motion. reading and phone calls- this was 1994, so there was no internet to speak of. And I lived in South Carolina- not the bastion of progressive thought. What takes you 10 minutes to find information on nowadays took me weeks and persistence in 1994, if I could find anything at all.

I ended up getting an ELISA blood test from an MD who did complementary medicine. That's what we were calling it in 1994. You could also call it integrative, alternative, holistic, or functional medicine. Or, if you're really closed-minded, or enjoy being and staying sick, or have all your money invested in pharmaceuticals, you call it quackery.

There are a lot of opinions out there about food allergies, and they all contradict each other. (Why should any information that could be so helpful be straightforward and simple?). Over this series of posts (I don't know how many there will be yet!), I'll explore food allergy symptoms, most common food allergies, conflicting opinions on food allergies, and methods of testing for food allergies. The perhaps  I'll reveal my own food allergies in case you want to bake me something toxic in an effort to bring about my early demise.

Stay tuned, healthy people- and all of you who are on the journey to reclaiming your health.

Carla

*** If you or someone you know would like to live healthier, happier, freer life, e mail me for a free one-hour consultation: 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