Good Days…Bad Days With Maureen Pratt

Good Days…Bad Days With Maureen Pratt

Lupus: Getting Involved in Awareness Month

posted by mpratt

Maureen Pratt Author PicBefore this Lupus Awareness Month gets too far underway, I wanted to highlight a few activities that will be taking place to educate, encourage, and raise funds for research. I realize that budgets can get stretched and energy sapped easily by too much involvement in  volunteerism for any cause, but given the numbers (at least 1.5 million people have lupus in the United States) and need (we’ve only had one new drug to treat this chronic, very serious illness in the past 50+ years), for more of a public face on lupus, we lupies hope that, at least, more people will be aware of what lupus is and how it affects the lives of those who have it and those who care about lupies.

Among the activities this month, the Lupus Foundation of America (www.lupus.org) will sponsor several walks in cities both large and small in the United States (you can go to their website for more information). LFA also has a Washington, D.C., advocacy day coming up in June, as well as ongoing support groups and other events throughout the year.

The Alliance for Lupus Research (www.lupusresearch.org) will also sponsor “real” walks, as well as a “virtual walk” (a nice accommodation for those of us with extreme sun-sensitivity). Their website also has good information on the disease and the state of current research, so we lupies can be well-equipped to talk with people about these.

The Lupus Research Institute (www.lupusresearchinstitute.org) has information about their events, as well as the research funding they give. There’s a link on their website to clinical trials, too, so that lupies can potentially be involved in the development of new treatments.

Often, when I speak with  newly diagnosed people with lupus, I hear them express a need to get involved in the cause. Rather than “reinventing the wheel,” these motivated lupies and others can find very worthy, worthwhile activities with organizations that already have a track record of education, advocacy, and research support – and become part of the larger community of lupies and “caring others” who really want to make a difference.

Blessings for the day,

Maureen

Lupus Coping Skill: Number 1

posted by mpratt

Maureen Pratt Author PicWhen you are diagnosed with lupus, you have to absorb a lot of information in a brief period of time. Lupus is a very complex disease; even if your case is mild and you do not have to take any medication, there is still a lot to learn about things you can do to stay as healthy as possible. And, with lupus brain fog, if you have it, and other responsibilities of life, it is very easy to quickly feel overloaded and to forget important health-related things.

Early on, I tried to become and stay organized. Work with your doctor to understand exactly what your particular case of lupus means and what you have to do to help your health. Keep a list hand of your doctors’ phone numbers, as well as your pharmacist and loved ones who can help you. Keep copies of all of your lab tests and other records. Maintain a symptoms journal, so you can track how you are doing, how you react to medication, and how your doctors’ appointments go. Take lots of time to pray, reflect, and have quiet that can enable you to ease pressure on your spirit and thus help you keep foremost what is most important.

With lupus, you often feel as if you’ve lost control over your life. By staying organized on paper and in spirit, you can better equip yourself to feel that you have some control, and that control will help you cope.

Blessings for the day,

Maureen

 

Lupus: First Symptoms

posted by mpratt

Maureen Pratt Author PicThe first significant symptom that I had that indicated something was seriously wrong was that my hair began coming out of my scalp in thick, cylindrical clumps, leaving behind smooth, round bald patches from which no further hair would grow. The first time this happened, I was sitting at my desk, working, and idly twirling a lock of my long, blond hair. Suddenly, the whole lock pulled away from my scalp, and I sat staring at it, completely shocked.

Over the course of several months, the same thing happened over and over, until I could no longer cover up the very glaring bald spots with my remaining, increasingly sparse, hair. After the first episode, I saw my doctor, who told me to see a dermatologist and assured me “nothing bad was going on.” But neither he nor the dermatologist ran any bloodwork for a full year (they did tell me to “reduce stress,” however, which was impossible due in great part to seeing myself go bald for  no apparent reason!).  Once, the internal medicine doc even asked me, “Are you sure you’re not pulling your hair out yourself because you’re so stressed?”

After a full year of hair loss, I realized that other symptoms had been occurring, too, although at the time I didn’t identify them as symptoms (and didn’t know what lupus was at all). I was bone-numbingly tired, oversleeping alarms and barely able to get through many days. My hands were very painful, and I began dropping things without warning. Finally, I prayed for wisdom to know what to say, then asked my dermatologist to run some bloodwork, “just to humor me,” even though she was certain I was fine (after all, besides the hair loss, I looked healthy, didn’t I, with those rosy cheeks…which turned out to be a very red, inflamed lupus rash).

The bloodwork results led me to a rheumatologist who did the most comprehensive examination I’d ever had from a medical professional. She went back in my medical history, ordered more tests, and, when all was said and done, told me, “Lupus is trying to kill you. And if you don’t do something about it, now, it will.” I’d developed internal organ involvement, and some of the damage was already permanent.

I had no idea what lupus was, but I learned quickly!

Not everyone will experience the same set of symptoms that I did. Each lupus patient is an individual, and each has an individual set of symptoms. Also, not everyone with hair loss and the other things I experienced will be diagnosed with lupus. But it behooves anyone who experiences these or other significant symptoms to seek good, attentive medical advice. Be persistent, too; I have spoken with many lupus patients whose doctors at first dismissed them and their symptoms like mine did. And pray for guidance all along the way. As I have and continue to experience, God never abandons us, especially when our lives seem to be changing in ways we do not understand.

For more information about lupus symptoms, visit the Lupus Foundation of America’s website: www.lupus.org

Blessings for the day!

Maureen

Lupus: Why Is It Called “Lupus?”

posted by mpratt
Image courtesy of porbital/FreeDigitalPhotos.net

Image courtesy of porbital/FreeDigitalPhotos.net

One of the most confounding things for many people when they first hear the term lupus is, “Why is it called ‘lupus?’” The name doesn’t resonate with people today; it doesn’t seem to describe any kind of body part or disease process. Or, does it?

The word “lupus” is Latin for “wolf.” Back in the day, in the 19th century, an astute doctor noticed a very distinctive rash across a woman’s cheeks and nose. The woman had a very serious case of kidney disease, too. The doc put the two together, identified a disease process (inflammation) that was manifested in both the rash and the kidney disease, and called it “lupus,” because the rash looked much like the markings common on many wolves’ faces. Moving up into our century, the name “lupus” is still used as a catchword to encompass three major types of the disease:

cutaneous lupus – affecting the skin

systemic lupus erythematosus – affecting one or more  internal organs and, sometimes, skin as well

drug-induced lupus – Some medications can cause lupus, however when these medications are discontinued, the lupus usually goes away

There is also pediatric lupus (lupus found in children), and other sub-categories of the above.

During the past several years, as various lupus organizations have tried to raise awareness for the disease, efforts have been made to come up with a descriptive color or even a symbol for lupus. Sometimes, the color orange, associated with the sun, to which many lupus patients are very sensitive, and the color purple have both been used to connote lupus-related activities. The wolf is also used sometimes, as is the shape of a “loop.”

Personally, I find relating to the wolf a bit problemmatic; although it is a majestic animal, as a lupus patient, even one with a malar (red) facial rash, I don’t have anything in common with it (except, perhaps, for occasionally howling at new or stirred-up symptoms)! The “loop” idea also doesn’t really resonate with me, except, perhaps, for the days when lupus brain fog is really pronounced and I, too, feel “loopy.” The color orange is interesting, but personally, I prefer to wear yellow as it doesn’t clash with my reddish wigs. Purple? Doesn’t really relate, unless, as a lupus patient, you’re royally angry about an aspect of said disease.

So, we’ll continue to try to come up with descriptive images and words for this thing called lupus. As you hear more about the disease throughout this Lupus Awareness Month, you might come up with something, too. Let me know if you do!

Blessings for the day,

Maureen

 

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