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

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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 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. www.thesingingpatient.com

Benefits of Laughter

As many of you know, I'm an afficianado of laughter. I love to both partake of a good laugh and help others do the same at every possible opportunity. I love to laugh. I always have. It's one of my "vices." I also love chocolate. And I love staying up until 5am. And I love gambling. But thankfully, laughter has none of the consequences of my other vices. I've never blown $70 at a laughter table in Atlantic City, laughter doesn't give me zits or make me gain weight, and having a good laugh doesn't leave me sleep-deprived. Au contraire, my friends.

Laughter is rife with wonderful health benefits. It is a "vice" that actually makes my life better. In fact I only call it a "vice" in jest, as it is actually a virtue. But if I call laughter a virtue, we won't want to do it... :)

What's really therapeutic is when I can laugh at my troubles. It really puts them in their place. It gives me back my power. Many of you have read my book or heard my Sick Humor CD and you know that is what a lot of my writing is about- taking back the power by finding the funny in the pain. For example:




But often, I need some time to pass before I can joke about something that is causing me anxiety or frustration. In those times, I laugh at something else. For example, when my husband was under a tremendous amount of stress this past spring, and there was nothing left for me to say that would help, I would sometimes ask if I could turn on some standup comedy while we were in the car. I chose comedians who were light, and not sarcastic or negative (we both love Mitch Hedberg, for one). Over time, as things improved, we were able to joke about his actual situation too.

But you don't have to have comedy to laugh. Laughter clubs all over the world use laughter exercises. They just laugh at nothing! Thanks to insurancequotes.com for this great infographic on laughter benefits. It relates the benefits to stress reduction. But laughter can also be helpful in prevention, not just cure. True health is about maintaining a state of wholeness, joy, and radiant being. What makes you laugh? When was the last time you laughed so hard you thought you'd wet your pants? Where do you get your funny? Wishing you a laugh-filled day-

Carla
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?"

 

guest post: diet that prevents cancer

Today we have a guest post from Jillian McKee on cancer prevention through diet.

Now I know that most of us with lupus do not have cancer, although it is possible to end up with both. And in fact, most of us with an autoimmune disease have more than one autoimmune diagnosis and we all (all of us in the modern world) have risk of cancer.

 

When I was first diagnosed in 1993, there was no internet (not for the public anyway) and little to nothing in terms of books and options, even in the world of complementary medicine, for lupus. Everything I did find that seemed promising seemed to contain the specific warning "contraindicated for systemic lupus" (AUGH!). 

 

I found I often just wound up reading books aimed at cancer patients and then adapting that info to fit my situation. After all, healthy food is healthy food, and a healthy mindset is a healthy mindset, right? Well, mostly yes. There are some things that work for almost everyone, like get enough rest, eat real food (not junk), drink water, and have happy thoughts.

So, even though this is a "cancer" post, some of this info may be of help to you. As with all blog posts, take what you need and leave the rest. And here we go:

A Healthy Diet Can Help Prevent Cancer

According to the National Cancer Institute, 35 percent of cancer-related illnesses are linked to malnutrition. When the body is not receiving proper nutrients, the immune system cannot fight free radicals and other carcinogens. When the body is under stress or ingests harmful substances, the risk of cancer increases. Cancer patients should improve their nutrition to prevent cancer and reduce the risk its spreading throughout the body.

If smoking and a sedentary lifestyle are also accompanying a poor diet, cancer risk can be as high as 85 percent. Cancer patients must constantly monitor what they eat. Diet not only affects physical health, but also affects our energy levels, self-esteem, and mood. Cancer patients must make positive choices to refrain from exacerbating their condition. Treatments for mesothelioma and others cancers can cause side effects, which can be alleviated through a healthy diet.

What Is Recommended?
In general, patients should select foods that are high in fiber, vitamin C, omega-3s and lycopene. Each plays a role in fighting free radicals known for causing cancer.

Green leafy vegetables, for instance, are high in fiber. Fiber reduces “colon transit time” and reduces the time that any carcinogens are in contact with the colon wall. With carcinogens leaving the body, friendly bacteria can easily replace harmful bacteria in the body. Americans should eat between 25 to 35 grams of fiber per day, but most only eat 10 grams. Though leafy green vegetables are a common source of fiber, fruits, beans, nuts, seeds, pastas, whole grain cereals and breads are also recommended. Fiber should be included in a healthy diet.

Fish high in oils are rich in omega-3 fatty acids. Salmon, tuna, halibut, herring and mackerel are all great choices that should be consumed three times each week. Polyunsaturated fatty acids such as DHA and EPA play a role in cancer prevention. Berries, brussel sprouts, and mushrooms are also good sources of these acids.

Antioxidants, anti-carcinogens, and bioflavonoids each are beneficial in preventing cancer. Foods rich in phytonutrients include dark green leafy vegetables, berries, legumes, citrus fruits and whole grains.

Soy protein is recommended for those at risk of breast and prostate cancer. Soy also contains phytonutrients that fight hormone-sensitive cancers. Genistein, daidzein, Bowman Birk inhibitor, and lecithin all play a role in the cancer fighting process.

Cancer patients should select foods based on the 80:20 rule. Eighty percent of food items selected should be from the plant kingdom and 20 percent from the animal kingdom. Patients who adhere to this rule are generally healthier.

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Bringing a wealth of personal and professional experience to the organization, Jillian McKee has worked as the Complementary Medicine Advocate at the Mesothelioma Cancer Alliance since June of 2009. Jillian spends most her time on outreach efforts and spreading information about the integration of complementary and alternative medicine when used in conjunction with traditional cancer treatment.

Read more: http://www.mesothelioma.com/blog/authors/jillian/bio.htm#ixzz216cMrxrt

guest post: helpful tips on living with lupus

Today we have a guest post from author and lupus veteran (26 years and counting!) Mida Giragosian. I'm always interested in the insights of people who have lived with lupus (or any disease) for a long time. 26 years with a chronic illness will most certainly teach you something.

Here is her post:

Hi, my name is Mida Giragosian.

I was diagnosed with Lupus at the age of 21, and now I’m 47. Yes, I had a lot of life-changing problems in between those years, but now I look, feel, and sound better. We can all help each other get through hard times. I lived by these tips:

·      Live by FAITH, one day at a time

·      Write down things that make you happy. The list can motivate you every time you look at it

·      Always dress up as if you’re going to a party. If you look good, you feel good
More tips can be found in my book, but it is most important to wake up every day and to remind yourself: I WILL OVERCOME. Remember that everyday is a blessing, and that your disease does not define YOU!

For more information you can visit: www.youwillovercomethebook.com
Find us on Facebook: https://www.facebook.com/YourWillOvercome

What are your thoughts on these tips? And if you were to boil down your own lupus/ wellness wisdom to a few sentences, what advice you would give to other people dealing with lupus? What helpful tips would you offer them?

Leave your comments below!

'Til next post-

 Carla

Carla Ulbrich

The Singing Patient - humorous speaker, songwriter, and author

www.thesingingpatient.com