Búsqueda de información lupus en español – Finding lupus information in Spanish

Lupus en las mujeres de color

Español – Yo soy una mujer blanca de mediana edad con lupus, y estoy muy preocupado por mis hermanas lupus de color que no tienen acceso a la información al respecto.  Yo no hablo español yo mismo, pero este se había traducido para usar en mi puesto para su beneficio.

English - I am a white middle aged woman with lupus, and am very concerned about my lupus sisters of color who do not have access to information about it. I do not speak Spanish myself, but this has been translated for use in my post for your benefit.

El lupus es más frecuente en las mujeres hispanas que en las mujeres blancas, como yo. Esto es injusto, pero el lupus es injusto, también. Todos necesitamos saber más sobre el lupus, para que podamos cuidar mejor cuidado de nosotros mismos.

Los pacientes de Lupus de color de 71%

Lupus occurs more frequently in Hispanic women than in white women, like me. This is unfair, but lupus is unfair, too. We all need to know more about lupus, so that we can take care better care of ourselves.

Si está buscando información sobre Lupus en español, aquí hay algunas sugerencias.

If you are looking for information about Lupus in Spanish, here are some suggestions.

Los Estados Unidos Centro de Control de Enfermedades (CDC) oficina tiene un sitio web con información sobre el lupus escritos en español. Esto se llama “¿Que es el lupus? Esenciales: hojas informativas de fácil lectura.”

The United States Center for Disease Control (CDC) office has a website with information about lupus written in Spanish. This is called “What is lupus? Facts: easy to read.”

¿Que es el lupus?

Haga clic en este enlace para ir a su sitio web: ¿Que es el lupus?

Click this link to go to their website: What is lupus?

Estos son algunos enlaces a otras informaciones sobre el lupus que se pueden encontrar en Internet, que también está escrito en el lenguaje español.

Here are some links to other information about lupus that can be found on the internet, that is also written in the Spanish language.

¿Tengo lupus?

Do I have lupus?

Información en español

Información en español

Information in Spanish

El Lupus en la niñez

Lupus in childhood

¿Qué es el síndrome de Sjögren? – What is Sjogren’s syndrome?

Algunas personas con lupus sistémico también tiene el síndrome de Sjogren, un problema de salud que causa resequedad en los ojos y la boca seca y puede conducir a infecciones de los ojos y otros problemas.

Some people with systemic lupus also have Sjogren’s syndrome, a health problem that causes dry eyes and dry mouth and can lead to eye infections and other problems.

¿Qué debo hacer con lupus?

¿Qué debo hacer con lupus? – What should I do about lupus?

Si usted piensa que podría tener lupus, le animo a que vea a su médico o clínica para hablar con ellos acerca de sus síntomas. Todos conocemos a alguien con lupus.

If you think you could have lupus, I encourage you to see your doctor or clinic to talk to them about your symptoms.  We all know someone with lupus.

¿Conoces a recursos en español lupus?

Si sabes de algún recurso idiomas adicionales en lengua castellana sobre el lupus, apreciaría escuchar de usted por correo electrónico a LupusAdventurer@cox.net.

If you know about any additional Spanish language resources about lupus, I would appreciate hearing from you by email to LupusAdventurer@cox.net.

Lupus rants, ridiculous recommendations, and real reasons to exercise

No miracle secret lupus cures!

I recently read a spirited rant from another lupus blogger about all the mindless things people say and suggest to lupus patients, such as suggesting that enough exercise will “cure” lupus. There is no secret cure for lupus! Yet, many well-meaning people persist in propagating myths about supposed miracle cures.  While some patients do go into full and lasting remission, they still have lupus, able to flare and become active again, without notice or clear cause.

Lupus still remains unpredictable and incurable.  Perhaps some day that will change, but for now, that is still the truth about lupus.

News Headlines

If a real lupus cure were suddenly discovered, it would be sensational news!

We would read about it on the front cover of Lupus Now, Arthritis Today, JAMA, Newsweek, U.S. News & World Report, CNN and Fox News, and the good news about it would go viral on the Internet.

The leading rheumatologists and research doctors would be interviewed on national television news and as guests on major television and radio talk shows.

The doctor who finds a cure…

The doctor who finds a cure for lupus will become a household name and might even win the Nobel Peace Prize in Medicine.

A real lupus cure would not stay a secret for long!

Reading the other blogger’s rant made me think about exercise, and some of the reasons I do it.  Although a moderate amount of careful exercise benefits lupus patients, it certainly is no cure! However, the right kind and amount can help a lupus patient be a healthier and stronger, and that is a great thing.  I feel better when I exercise, like anyone else with lupus or without it would.  Exercise is always an important part of a healthy lifestyle for any person, including lupus patients.

Exercise is of some profit

A lupus patient needs to be careful not to overdo exercise beyond the level safe for the current state of their medical condition.  Sore, painful joints and inflammation are red flags to take it easy, or to postpone exercise if  symptoms are flaring too much.  Then, when the lupus flare subsides, the exercise can resume or go back to normal levels.

It seems harder to accept a suggestion to exercise from someone who doesn’t have lupus or a similar auto-immune illness. It is easier to accept the recommendation if the advice come from another lupus patient who actually exercises.   Another patient can tell me how exercise it helps them.  Another lupus patient can understand why it is so hard for me to want to think about exercising if every joint hurts.  They also know why when the thought of moving seems like it will take herculean effort, how lupus joint pain and fatigue are counter-intuitive to the idea of movement and exercise.  It is so hard to imagine when it hurts to move, that getting up and moving more will make it hurt less.

Doctors give me reliable treatment advice

The suggestion to exercise is much harder to accept from someone else (other than my rheumatologist) who thinks they know exactly what will improve my lupus, or worse yet,  who thinks their suggestion to exercise, (take a supplement, wear some special metal jewelry, or some other thing) will actually cure my lupus.

I don’t necessarily want to hear these people’s ideas of what they think I just “need to do to get well.”  I want all my serious treatment advisers to have medical degrees!

However, there are some very important reasons why I exercise two to three times each week:

• My rheumatologist recommends it, and I respect his advice
• It will help me fight osteoporosis caused by steroids
• It strengthens my muscles and improves my circulation and tendon health
• It helps reduce my risk of heart problems that are higher in lupus patients
• It increases my oxygen exchange, strengthens my lungs and helps my asthma
• It is good for my digestion
• It strengthens my spine and reduces the frequency of chiropractor visits for three herniated cervical disks
• It also helps morning lupus brain fog clear up more quickly as increased circulation stirs up my body’s metabolism.
• It raises endorphin levels that naturally elevate my emotions/mood and reduces my perception of pain.
• It helps me fight weight gain from an increased appetite from steroids.

Exercise WILL improve how I feel!

I get my most of my exercise on an indoor cycle with a fluid trainer, and when I have access to an indoor pool, I have really enjoyed swimming.  I also do some gentle yoga exercises to improve my spine and joint health.

Even though there are plenty of people out there with some crazy ideas about how to magically cure lupus, there are some real things we can do to improve our lupus outcomes.

Exercise is something we can definitely do that may improve how we feel, at least a little.

Lupus and confessions of a coffee mug hugger

Screaming alarm…

The alarm on my tablet PC laying on the end table summoned me from the half dead depths of sleep. The flashing screen announced, “9:20 Dr. Appt.” My waking realization was that in exactly one hour I needed to be there! So, striking the graphic snooze button to silence the screaming electronic gadget, I set the tablet back down on the night stand. For just a moment, my groggy lupus-tinged brain begged me to lay back down and wait for the 30 minute warning.

I have been late too many times in my life because of sleeping in, or because my lupus was too active in the morning to allow me to safely leave my house earlier. Today was not going to be one of them. Forcing myself out if bed, I stumbled down the hall to assess the morning state of my kitchen. Alas, no waiting coffee on the burner this morning. My husband must have left in too much of a hurry to make it.

Coffee, quickly!

Coffee, quickly, was the first order of business! No time was left to brew a pot, so some microwave zapped water and instant coffee on the go would have to do. Morning medications with a dash of juice and a quick piece of toast and Nutella.  Next sprinting through a mini-shower, and stepping into jeans, t-shirt and flip-flops were all a continuous motion sequence of events ending with a key sliding into the ignition of my PT Cruiser.

In motion, still…

In motion, still, I traveled down the freeway on a ten-minute jaunt to the doctor’s office. Still groggy and barely legal as the CNS morning lupus symptoms clung to my still fuzzy brain.  I realized I was actually hugging my thermal coffee cup!  In between sips of the stimulating drink, my cup was not in the cup holder between sips, it was gripped by my right hand, as I hugged the warm cup against my heart.

teddy bear in years long, long before

So, this is the confession of a coffee mug hugging lupus patient, in that dawning realization I was actually clinging to my coffee cup as I once might have to my little teddy bear in years long, long before grand-motherhood, motherhood, college, grade school and kindergarten. I had caught myself embracing a warm thermal mug, enjoying a few moments of miniscule fleeting comfort. How could I help but quietly chuckle at myself in the silliness and simplicity of the pleasure.

Off to the McDonald’s

Barely on-time and slightly more awake, my destination was in front of me. I enjoyed the remainder of a great cup of coffee as it accompanied me through the waiting room, time with the doctor, and chat with staff before leaving. The last sip went down as I returned to my car and headed off to the McDonald’s across the street to get a refill, write down this snap shot of my thoughts, and chuckle one more time at my now humorous expression of endearment to a mere coffee cup.

Cup and refill in hand

Now, my brain has shaken off enough of the clinging brain fog to safely embark on the rest of my day’s journey. Cup and refill in hand, I will try to regain some shred of maturity, and refrain from any more mug hugging this morning, at least not in public.

Lupus and the concerned sister who paints

Carol Cavalaris

Carol Cavalaris is an artist that lives in a home nestled in the forests of Colorado, where she creates digital paintings of wildlife and nature.  She has developed diverse art skills, and began drawing and painting during her childhood in southern California.  I have never met her in person, but I loved her intensely colored paintings the first time I saw them.

Goddess of Miracles

After I contacted Carol for permission to feature her paintings of butterflies on this blog, I learned from her that her sister-in-law has had lupus for years and she has “watched her struggles, as well as victories.”  When I stumbled upon her art work, I was very impressed with the vivid beauty of her floral paintings, especially those enhanced by my favorite images of beautiful and sometimes subtle butterflies.  I just had to share a few of them with you.

Calla Lillies

Carol started with oil painting, and now enjoys the art of digital media, with a computer screen as her canvas. She combines photo and painting techniques to create unique mixed medium images. A number of her paintings focus on various animals, including some endangered species.  She explains that “creating, learning, and growing artistically have kept the joy alive and … passion to bring healing joy and beauty to others.”

Goddess of Sunrise

Carol and her husband once owned an ad agency producing print and television ads.  Her art work now includes sculpture, stained glass and graphic arts, and extends to interior design, copy-writing, music composition, novels and creative directing. Painting wildlife and nature, color and detail, are her passions.

Magnolia

Carol’s art work is on exhibit in several Colorado galleries and private collections all over the world, and is featured on T-shirt designs, puzzles, portable electronics skins, greeting cards and other items, as well as through her online gallery .

A watercolor for the guest room?

My own sister is also a painter.  When we were young I would sometimes sit and visit with her for hours while she sat at her easel.  I watched her paint and we chatted, and I now admire her patience toward her gabby little sister!  As my daughter and I were looking at Carol’s paintings that I selected to share here, she had a suggestion for her aunt. Perhaps we could ask her to paint a watercolor for my guest room. (To match the decor of purple, yellow, dragonflies and butterflies.)

Sisters who paint…

It might be a great idea, and if we can coax her to do that, we could share a print of the watercolor here.  But, perhaps one of Carol’s pieces might look great in the guest room, too!  We shall see…

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[Lupus Adventurer will not benefit financially from this post in any way or from visits to Ms. Cavalaris' site through readers following links on this blog. The artist graciously granted permission for me display her copyrighted images free of charge for the pleasure and enjoyment of this blog's readers, and because of my desire to share the human interest story about her lupus connection.   A link to the artist's gallery site is provided for anyone who may have further interest in her art work.]