Thursday, October 11, 2012

Sharing Your Experience, Strength and Hope with Others

I'm a contributor to the website 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 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):

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

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 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

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"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

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Thursday, October 4, 2012

Guest post: Eye health
Today we've got a guest post from Emily Joseph on eye health.

This is a topic of interest to me because I, like many people with autoimmune diseases, have Sjogren's symptoms (Sjogren's causes very dry eyes and mouth) and lately my nearsightedness seems to be worse, and, oddly, I can't read my iphone screen unless I take my glasses off. These are minor inconveniences, but I am concerned about any loss of vision, because loss of vision means loss of independence.  Please chime in, in the comments section, with your thoughts and experiences.

Lifestyle and Diet Tips to Keep Your Eyes Healthy

We go out of our way to try to keep our waistlines trim, our skin looking good, and our hair shiny and smooth, but not very many people think about one of the most important parts of their body - their eyes!

Other than those people who grow up with eye problems that require glasses or contacts, the vast majority of us barely think about our eyes even though we use them every day as our primary way to interact with the world. We know that eye problems can develop over time, but no one ever mentions that it might be possible to prevent or slow down some of the ways that our eyes can start to break down on us as we get older by eating better and living smarter.

It's true! Things like cataracts and macular degeneration can be slowed, and some diseases - like diabetic retinopathy - are directly related to poor eating habits. So if you want to keep yourself clear eyed and ready to face the world for as long as possible, try following these tips.

Give those peepers the nutrients they need. That means plenty of leafy greens, fruits - especially citrus fruits, oily fish like tuna and salmon, and protein that doesn't just come from meat (e.g. nuts, beans, eggs, and so on). Why these foods? Because they're high in the things your eyes crave: zinc, lutein, zeathaxin, vitamins E and C, and omega-3 fatty acids.

Wear sunglasses. We all know that UV rays from the sun are dangerous. Heck, many of us lather up our bodies in ridiculous amounts of sunscreen even if we're just walking down the block. So if you're going to be that careful with your skin, why wouldn't you do so with your eyes? Good sunglasses can block both UVA and UVB rays, and should even be worn by people who have UV contact lenses because the glasses will protect your sensitive eyelids as well.

Just say no to nicotine. As if smokers didn't have enough problems, here's another one: smoking has been linked to things like damage to your optic nerves, cataracts, and macular degeneration. On the flip side, having healthier eyes is yet another benefit that you'll get by finally managing to quit and stay tobacco-free.

Stay fit. Eating a healthier diet should help with this, but it's important to exercise as well. Why? Because fatty tissue itself might actually be harming your eyes if you have too much of it because it can soak up nutrients that would otherwise go to protecting your eyes.

Keep your blood pressure down. The American Academy of Ophthalmology says that macular degeneration is more likely to occur in people with high blood pressure. There's no definitive reason why, but many experts believe that blood vessels can be damaged when there is too much pressure in the body, which would make it harder to get blood to flow to your eyes. Less blood means that free-radical debris will stay in your eyes longer and it will be more difficult for them to get the nutrients they need.

Use protective glasses. Obviously you can't see if you poke your eyes out or allow some kind of damaging material to fly into them, so always make sure that you use protective glasses when working in any kind of environment where your eyes could be put in danger.

About the Author: Emily Joseph has been covering eye care topics including laser eye surgery for over a decade. When she isn’t writing, you can find her spending time at home or training for her upcoming triathlon.
About the blog host: Carla Ulbrich is The Singing Patient, a medical musical comedian who performs for patients, caregivers, healthcare workers, and even "earth people." She is frequently heard on Dr. Demento and Sirius XM's Laugh USA.