Monday, October 24, 2011

Enter to win a year's worth of Gluten Free Goodies!

Hello my Gluten-free friends!

Just stumbled upon this chance for you to win a year's worth of Gluten Free Yummies from French Meadows Bakery. The info is on Christine Miserandino's "But You Don't Look Sick" website:

Sounds yummy, and I do feel better since going gluten-free several years ago. Remember of course, even gluten free cookies are still... cookies, so make sure you also get in your fruits, veggies, and whole grains.
Here's to health eating and feeling great!

Carla Ulbrich
The Singing Patient, author of "How Can You NOT Laugh at a Time Like This?" - health coaching

Thursday, October 20, 2011

Great Resource for Lupus info and Support

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

Room full of Lupus Thrivers and their loved ones

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

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

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

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

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

The LFA Piedmont Chapter. 

with Christine John Fuller

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

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

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

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

with Elaine Neilson
Carla Ubrich, The Singing Patient - health coaching funny medical songs

Monday, October 3, 2011

Guest post: Lupus and MS

Multiple Sclerosis and Lupus: The Connections

Today we have a guest blogger, Chipper Nicodemus, writing in on the topic of the commonalities between Lupus and MS.

What is Lupus
Lupus is a chronic inflammatory autoimmune disorder that affects the skin, joints kidneys and other organs. An autoimmune disorder is a condition in the body where the immune system incorrectly and mistakenly attacks and destroys the good, healthy body tissues. Lupus is one of more than 80 autoimmune disorders. 
Causes and Risk Factors of Lupus
The exact cause of Lupus isn’t known, but some researchers believe that the disease occurs after an infection with an organism that looks like a mistakenly identified protein and wrongfully is then attacked. In a normal body the immune system’s white blood cells usually protect from the harmful substances, but in a person with Lupus the white blood cells are mistakenly attacked. This happens because the affected immune system cannot tell the difference between healthy and harmful cells. Women are nine times more likely to get lupus than men.
The Treatment of Lupus
The main goal of treatment of lupus is to reduce symptoms, and control the autoimmune process all while keeping the body’s ability to fight the disease. There is no cure for Lupus, but anti-malaria drugs are used to battle skin and arthritis symptoms. More severe or life threatening symptoms, such as heart or lung issues, require treatment with stronger medications in the form of various immune suppressants.
What is MS
Multiple sclerosis, like Lupus is an autoimmune disorder, affects over 300,000 Americans and is a chronic central nervous system that affects the brain and spinal cord. Each MS symptoms can last for days, weeks or sometimes even months and there are periods of reduced or even luckily no symptoms.  Some of the more common symptoms are loss of balance, muscle spasms and even problems walking, but even extend to sexual problems, incontinence and speech problems.
Treatment of MS
Similar to Lupus, there is no cure for multiple sclerosis, but there are therapies that can slow the disease down. The goals of the treatment of MS is to control the symptoms and help the patient keep a good quality of life. Different types of medications are used to slow the progression of MS and can be taken for longer periods of time. There are medications that reduce muscle spasms, reduce urinary problems and sometimes antidepressants are prescribed for mood or behavior symptoms.
How Lupus and MS Relate
There are several similarities between Lupus and MS, including many key symptoms and affects. Sometimes Lupus can mimic the symptoms of Multiple Sclerosis and only a doctor can correctly diagnose one or the other. The following list are some examples of how Lupus and MS relate.
Autoimmune disease
Onset in early adulthood
Women more likely affected (90% of lupus patients and approx. 85% of MS pateints are women)
Chronic disorders
Treatments ease symptoms rather than cure
No cure
Do you have MS or Lupus or know any family members or loved ones that do? Please feel free to share your experiences below in the comments.
This guest blog post was written by Chipper Nicodemus, an SEO Assistant at Healthline Networks has extended its health search technology services to include specialized health tools that address the patient pathway – from symptoms to treatments, to doctors, to medications.

Healthline Networks, Inc. • Connect to Better Health

Comment From Carla:
It is interesting to note that you can have both lupus and MS. There’s no rule saying you can only have one autoimmune disease, or even just one disease. I know someone who has lupus and cancer. I myself have 3 autoimmune diseases (lupus, Raynaud’s, Sjogren’s) and fibromyalgia.
What is interesting to note is the commonalities amongst autoimmune diseases and the strong trend towards their mostly affecting women, and mostly women between 20-40. For thoughts on the gender issue, see my previous post on that topic here:

Carla Ulbrich, The Singing Patient
_____________ - health coaching

"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