Good Days…Bad Days With Maureen Pratt

Good Days…Bad Days With Maureen Pratt

Lupus: Is Celebrating the Survivors Unrealistic?

posted by mpratt

Maureen Pratt Author PicI was once told by a person in a responsible position in a patient advocacy organization to “be positive, let them know that lupus isn’t all that bad. Don’t be negative.” The message this well-meaning person seemed to want was more akin to “celebrate the survivor,” a phenomenon borrowed from other disease advocacy realms. And the message irritated me.

Certainly, it is possible to “survive” certain serious, even life-threatening, illnesses, and I’m very happy for those who have done this. Whether it is cancer, diabetes, or another health challenge, being able to get beyond it and feel healthy again must be a tremendously joyful sensation, as well as encouraging for those who are still battling that particular illness. Certainly, our society celebrates the survivor, heaping praise and titles such as “Courageous” or “Inspiring” upon them. I join in the celebration when I can, knowing how hard the struggle must have been.

But when it comes to extolling the ease of life with lupus and not explaining how hard it can be,well,  I think this is misleading and probably upsetting to more than just me. First, there is no cure for lupus (except what Our Lord might choose to bring), people with lupus are more likely to “get through” flares (periods when the disease is active) than experience a cure, and the absence of flare does not mean there is the absence of lupus.

Second, lupus is very stealthy. Even at times when we might feel fairly good, “the wolf” can be working inside. Living with lupus requires constant vigilance, regular monitoring by our medical teams, and the understanding that we need to take good care throughout.

Third,  I happen to believe that lupus patients would rather learn much more realistic information that be fed only “positive” things. That way, they can be better equipped to meet the highs and lows of the lupie life – and be stronger for it.

In my talks and writing, I try to talk about the benefits that have come from my journey with lupus. Indeed, there have been many positive things that I’ve gleaned and many blessings are, no doubt, still to come. But I’ll be the first to say it’s not been an easy road, nor a finite one. Each day presents hard challenges, and I know that I am not alone in this.  I do try to focus on good things, uplifting things, loving and lovely things, including the blessings from lupus. But, just as the title of my blog suggests, some days are “good” and some days are “bad.” With good faith, clear eyes, and a determined heart, the “bad days” won’t seem as bad, and the “good days” will be even more blessed.

Peace,

Maureen

 

Finding Something Good

posted by mpratt
Image courtesy of graur codrin/FreeDigitalPhotos.net

Image courtesy of graur codrin/FreeDigitalPhotos.net

A cheerful glance brings joy to the heart;

Good news invigorates the bones.

Proverbs 16:30

Whether personal or of the world, there is no lack of bad news feeding our lives and hearts. Of late, I’m facing a couple of serious diagnoses, additional to those I’m already grappling with. In world news, we are all aching for the girls who have been kidnapped, the victims of severe weather, and other tragedies. But just as our lives are complex, so too should be the balance we purposefully bring to them. Yes, it can be difficult to see beyond the bad. But as people of Easter, people of faith, we are called to do just that.

This simple Scripture reading is front and center on my work desk these days, a testament to the importance of good news as an antidote and protection against the negative effects of all bad news darkening our lives. I especially like the second line: “Good news invigorates the bones.” Truly, we cannot do away with bad news, and sometimes we have to face it head on and ride through a sea of murk and gloom. But to do this with courage and strength, to not sink down hopelessly, we have to hold onto something good, something of light, something of God.

Is it a cheerful glance from a loved one that can bring you today’s good? Is it an uplifting news story of bravery? Have you lived a very inspiring time, and can the memory of that fuel your determination to seek and find another?

Can you see the good in the natural world, the sky, the flowers? Can you hear the good in the laughter of children, unaffected by the negativity that draws you down and, thus, proving that the world is not all awful?

Darkness can drag us down. Bad news or a bad day can make us want to cower and cringe. But if we make the effort and seek that one good thing each day, we can counteract the effect of darkness and thrive in light.

Find something good today. Cherish it. Thank God for it. Use it as your weapon against darkness – and be strong.

Blessings for the day,

Maureen

Lupus Awareness Day – Putting on the Purple

posted by mpratt
Image courtesy of foto76/FreeDigitalPhotos.net

Image courtesy of foto76/FreeDigitalPhotos.net

Lent is over. Advent is a long while away. But, today, I’m going to wear purposeful purple!

May is Lupus Awareness Month, and today is Lupus Awareness Day, and the color is purple.

Purple is a deep color, sometimes mysteriously so, and lupus is the quintessentially mysterious disease – there’s no cure, there are not many treatments and no one “lupus test,” and there’s no telling when or in which organ it might flare up.  Living with lupus is like living with something completely life disrupting just around the corner and, sometimes, front and center for a long time.

When I was first diagnosed, I was told that it usually takes 3 full years before the newly diagnosed patient has an awareness of what the disease will mean to his or her ongoing life. It’s no wonder, then, that it’s hard for those who don’t have lupus to fully understand the weight of the illness, and the burden upon physical and emotional strength it sometimes poses. For people with a “known” illness, we lupies are certainly unique. We don’t look sick. We can’t be easily “classified,” when it comes to treatments, symptoms, or even prognosis (each lupus patient is completely different).  We might seem like hermits, avoiding the sun, crowds, and sometimes the most mundane of activities due to fatigue.  And, if we are to be fully helpful to our medical team, we have to acquire knowledge surpassing “what is the common cold,” and stay on top of things we never dreamed we’d have to be familiar with.

Today, we put on purple, together and individually, to raise awareness that, at least, lupus “is,” and we are still living and fighting. If you have lupus, I’m right there with you and cheering you on. And if you don’t have lupus, I want to thank you for reading this, learning, and supporting those of us in the trenches. It’s so very important that we know we’re not alone, and with your encouragement and God’s grace, we’ll move ahead and onward to the next Lupus Awareness Day and beyond!
Blessing for the day,

Maureen

 

Fatigue and Friends

posted by mpratt

Maureen Pratt Author PicMay is Lupus Awareness Month. For those of us with lupus, it might seem beside-the-point; it’s almost impossible to have lupus and not be aware of it each day, not only in May!

I’m not going to go into “what is lupus?” nor am I going to list the statistics of the disease “population,” nor the toll that lupus takes on families, society, and the workplace. There’s plenty of information about that at lupus.org and other websites, as well as info available through our doctors.

But I would like to address one little subject that’s actually a very, very big deal: Fatigue and friends.

One of the symptoms very common to lupus patients is fatigue. It is not the “usual” fatigue that comes from a busy life or a particularly busy day. It is crushing, numbing, and strong. It can really weigh you down, even for the most “mundane” of tasks such as opening your mail. And it can come on suddenly, as if being hit by a tall, pounding wave of fatigue that drags you back out to sea with it.

With such fatigue, it’s no wonder it can be difficult to be a friend of someone who has lupus. I cannot tell you the number of times I’ve had to cancel an outing with friends at the last minute due to sudden fatigue. I also cannot tell you the number of times I’ve cut an outing short because my fatigue was just too profound.

Lupus fatigue does not “just go away,” necessarily, because you take a nap, sleep, or even have a few days at home before venturing out again. Over the past few years, for example, I’ve had a particularly trying time, and I’ve likened my need for rest much like “needing a long runway,” an expansive period of time during which I keep extra activities to a minimum.

With “old” friends, explaining the need for more rest and explaining the fact that lupus can be “very rude” at the most inopportune times, can bring better understanding between the lupie and the friends. With new friends, it might take a bit more explaining, especially that you’d truly/really/absolutely like to do X,Y,Z if only you weren’t so tired. As most of us don’t look sick, it might take new friends more time than the usual to “get” what lupus does and is. But that’s okay. The truly good friends will want to understand, and the result will be positive on all fronts.

Above all, when very fatigued, the lupus patient is well-served to acknowledge his or her state. We don’t do ourselves any favors by pushing and pushing – running ourselves into more problems than not.

Those long days at home, that chunk of time spent resting – these are not “wasted hours,” nor are they completely “down” time. During our “long runways,” we ease up on stress that can aggravate our lupus, and we allow ourselves time to mend, strengthen.

Good friends understand this, too. And when we have them in our lives, no matter our fatigue, we never cease to give thanks! :)

Blessings for the day,

Maureen

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