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Good Days…Bad Days With Maureen Pratt

Good Days…Bad Days With Maureen Pratt

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.

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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).

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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

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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:

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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.”

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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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Lupus Awareness Month: For Starters

posted by mpratt

Maureen Pratt Author PicMay is Lupus Awareness Month, and during this time, I’ll be blogging frequently about aspects of the disease, living with it, and coping with it. I realize my personal experience is unique; each person with lupus has his or her own particular set of symptoms, manifestations, and treatment protocols, as well as attitudes and coping mechanisms. So, I’m by not means the definitive “voice of lupus.” But, I have lived with the disease since my diagnosis nearly 16 years ago, and probably had it in various stages for most of my life. So, I at least have some experience with it and with the many issues that accompany life with lupus. Moreover, I’ve always been a person of faith, and have brought that aspect of my being fully into my journey with lupus and all the other chronic illnesses I have. As you can imagine, I have strong opinions on this part of the lupus puzzle, too!

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But, in this post, I want to start at the beginning: Why “Lupus Awareness Month?”  Or, rather, why one more disease-centered awareness campaign for an illness that isn’t very common and doesn’t appear to be that serious because other disease get much more press.

I just took a deep breath. Lupus Awareness Month is important for many reasons, and not just because I suffer from it and know other people who do, too. Although the media might not cover lupus all that much (I have my opinions on why this is, and I’ll write about those later on), lupus is NOT rare, and it is certainly a serious illness. Estimates are that between 1-3 million people in the United States and more than 5 million worldwide have lupus, and as physicians become more aware of the disease and how to diagnose it, that number will undoubtedly grow.

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Despite the numbers (more people have lupus than have many other disease, including multiple sclerosis, for example), there is no cure for lupus and we’ve only had one new drug to treat the disease in the past 50 years.  Research has only ramped up in the past few years, possibly (my opinion) because most of the people with lupus are women diagnosed in their childbearing years. Throughout the history of medical research until fairly recently, investigation into diseases primarily affecting women has been frightfully behind that of diseases that affect men.

Living with lupus is a tremendous challenge for many of us “lupies,” and I’ll try to give an idea of what it’s like during this month in my blog. I’ve also prepared a Gallery, “12 Answers to Questions about Lupus,” which is available on Beliefnet, and can give you a good overview.

Blessings for the day,

Maureen

 

 

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Chronic Illness: Determined Adaptation

posted by mpratt

Maureen Pratt Author PicNever say “give up!”

That’s one of my mottos for life with lupus.

The flare that was stirred up after I had to go off one of my lupus meds has also made me extremely sun- and fluorescent light sensitive, which made it difficult for me to spend much time writing over the past couple of weeks. And, what was a befuddling problem has now shed light (please pardon the pun) on yet another way in which many us with lupus, or perhaps any chronic illness, must learn to make lemonade from lemons (with real sugar, please, not artificial sweetener!).

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For many “lupies,” the UV rays, particularly UVB, can stir up lupus flares. For years, I was told to limit my exposure to sunlight (I’m particularly sensitive), and if i did go outdoors during the sunny part of the day, I had to wear long sleeved shirts, long pants, broad-brimmed hats, sun block, and protective glasses. This most recent flare also keyed me into a problem that I hadn’t really thought of before. A few months ago, I’d purchased a new computer. As my flare worsened over the past few weeks, I noticed particular problems if I sat in front of the computer for any length of time. The culprit, for me, turned out to be that the monitor was an LCD (fluorescent) model which, of course, for me meant more exposure to the very thing that could stir up a flare even more. Live and learn!

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I have since purchased an LED monitor and am much more comfortable with it. Not so much the flare, which continues along its way. But, at least, one thing that was in my control has been handled!

Sometimes, “one more thing” can be the proverbial straw breaking the camel’s back. But by digging deep and holding onto determination, other times we can find ways to adapt, to take a bit more control, and to help ourselves along.

“Determined adaptation.” I like the sound of that. And, I like how it looks on my new, better monitor, too!

Blessings for the day.

Maureen

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