Good Days…Bad Days With Maureen Pratt

Good Days…Bad Days With Maureen Pratt

Boston Then and Now: When Life Changes in an Instant

posted by mpratt

Everyone who ran, everyone who watched, indeed everyone who has heard of what happened in Boston on Monday will never forget. And those who were injured – emotionally or physically – will carry images, emotions, and perhaps physical reminders of that day throughout the rest of their lives.

How do you cope when life changes in an instant? When you awaken from surgery to discover one or more limbs are gone, or you cannot sleep because the horrific scene you witnessed keeps playing and playing in your mind? What does your world become, now that you are so altered?

Where is God in the rubble?

Medical care, of course, is crucial to people suffering from the two blasts along the end of the Marathon route. And, not just emergency care, but ongoing care, to ensure the best possible outcome. For some, there will be difficult days of physical rehab ahead. For others, there will be great mourning. For still others, there will be hard time devoted to emotional unpacking, examining, and understanding. For all, including those of us who watched as the scene unfolded on television, there will be a need for deep prayer and reflection, and for seeking goodness from God, which is a powerful balm against pain and loss.

The time immediately after the blasts was filled with heroism and mercy; even those who were not first responders ran into the smoke and tried to render aid. In the aftermath, there continues to be a need for heroism and mercy – the heroism that comes from the determination to rise above and gain strength, and the mercy that comes from a desire to continue to help lift up. These grow courageously in the fertile soil of faith, and it is in them, in our souls, that God is and moves.

Indeed, when life changes in an instant, the one constant that never changes is God. We may mourn, waver, weep, and hurt. But through it all, Our Lord never ceases to be ready with His comfort. As we turn from television screens filled with those unforgetable scenes from Boston, and turn inward, we can know that life may change, but the spirit remains. God is not in the rubble, but rather He stays, firm and loving, in our hearts.

Blessings for the day,

Maureen

Chronic Illness: One Size (Often) Does Not Fit All

posted by mpratt

Have you ever had someone tell you you “must” do something for your illness, but your doctor has advised against it? Or, had someone say, “I know someone with [your illness], and he/she is really healthy.” [implying, "what's wrong with you?"] Or had one person say, “I don’t have any problem taking [medication],” when another tells you, “I couldn’t take that because of the side effects.”

If so, then you know what some have great difficulty understanding: With chronic illness, one size often does not fit all.

This would be just a statement if it weren’t that it also poses challenges to each of us. Socially, medically, spiritually, because each of us will have different symptoms, degrees of those symptoms, and all sorts of other considerations, it can be difficult to help others understand what we’re going through. To some, for example, “I’m tired” is answered with “take a nap and you’ll feel better.” But as a lupie, I can say that, when I’m in a flare, though I might nap for hours, it is rarely restorative. “Staying out of the sun” has different meaning to different people, too. For some, sitting in a park in the shade is what this means. But for the highly ultraviolet-light-sensitive lupus patient, even that can stir up a flare.

With complex illnesses, having quality, working relationships with our medical team is so very important to managing the individuality of our symptoms. And, having good care with doctors and others who truly “know their stuff” is essential, too. Switching one generic med for another, treating with one antibiotic over another, and other things that might seem routine to some formulaeic-driven healthcare workers can be problematic for some patients whose chronic illnesses need more finely tuned attention than a “one size fits all” approach will give.

It can be tiring to have to explain so many things on so many occasions. How well I know! Sometimes, when I have to explain more specifically why I cannot do something, or how my symptoms and illnesses are intertwined, I worry a bit that I’m sounding “picky” or “wimping out.” More than once, someone has said, “I’ve never heard that,” or, “oh, really?” when I’ve tried to explain a specific aspect of life with lupus and the other conditions I have, and pick up on the doubt behind those statements. And sometimes, especially in social situations, I struggle to join in the conversation if it turns to the latest hair care trend (I’ve lost all my hair due to my illnesses), planning a group activity outdoors, etc.

But despite the challenges of being uniquely you and me, the individuality of life with chronic illness is yet one more manifestation of the uniqueness that exists in God’s eyes. Truly, He knows each of us by name, even before we were born, and His love falls upon each of us as precious, individual lives created in His image.

No, for us, one size often does not fit all. And that makes living all the more un-specifically special!

Blessings for the day,

Maureen

Chronic Illness: Taking Charge

posted by mpratt

The first book about chronic illness that I wrote, with rheumatologist David Hallegua, MD, was called “Taking Charge of Lupus: How to Manage the Disease and Make the Most of Your Life.” This was not the book’s original title; I’d titled it, “Lupus in Daily Life.” But, my very wise editor had a better idea, and I’m glad she made the change.

Indeed, although lupus can be confounding and often-times unpredictable, there are things over which the patient has control, and these things may also apply to people living with other chronic, serious illnesses.

One of the first things I learned is that an attitude of victimhood undermines our ability to find positive, strong solutions to problems posed by illness.  Not to say that sometimes each of us cries, has a “poor me” moment, and wishes life were otherwise. But if that is all we do, all we see in our lives, then finding a way to a more positive life is going to be extremely difficult. How, then, to minimize victim-think and victim-speak?

Knowledge can take us far in understanding our illness and what we can do about it. The first and primary source of this knowledge is, of course, our medical team. We can take charge of the questions we ask during our appointments, the specifics about our labs and exams. We can learn much about the things that might trigger flares and how to avoid them, and the positive steps we can take to maximize the health that remains. We can know the names of the meds we take and what they do (and what side effects to look for).  We can organize our paperwork and our lives so that we can find what we need when we need it.  We can work on our communication skills so that we can be better advocates for ourselves in a medical setting, as well as socially.

Taking charge of our time is another way to minimize a victim attitude. Pour goodness, inspiration, giving, and quality relationships into the precious minutes and hours of a day. Simplify that time, too, and find healthful ways to avoid stressors that you know will aggravate your condition.

We can take charge of what we eat, and help fuel our bodies in a good way. This also extends to the things we fill our minds, hearts, and eyes with – so, the more positive our influences, the more positive we will feel.

We can understand that we cannot control the attitudes and emotions of others (this realization is extremely freeing). So, if someone close absolutely refuses to understand or be compassionate, we can take charge of setting boundaries so that that person does not harm us at a time when we might be most vulnerable.

We cannot control God, however we can take charge of our spiritual lives, the times we spend in prayer and listening to God, and the kind of time we give to deepening our faith. We can invite strength during the times when we feel lowest, and move forward more firmly from one day to the next.

Blessings for the day,

Maureen

Chronic Illness: When the Future Is Unclear

posted by mpratt

When you’ve lived through the sharp flares and relative calms of chronic illness, you begin to understand that nothing is guaranteed. As I’ve experienced recently, sometimes the medications we take to keep some symptoms under control suddenly stop working or cause serious side effects. Sometimes we do everything “right,” and try to take as good care as possible, but the illness has a mind of its own and flares anyway.

The best laid plans….

And yet, in the media and, perhaps, our own circle of friends, there are calls to plan. Plan for vacations, plan for events, plan for retirement, plan for the future.

How do you plan for the future, when the future is unclear?

There are no easy answers to this perpetual question. On the one end of the spectrum, we could plan our lives to the day, to the minute, firmly resolved to do XYZ no matter how we feel. On the other end, we could live as if we’re in an unmoored, rudderless boat that just drifts from one day to the next.

For me, there’s a relatively reasonable middle ground. Like many people, I have dreams, goals, and hopes. I don’t want to give them up because my illness might flare, might restrict me, might become more serious than it already is. But I also have to be realistic, and take into account where I am now inorder to have a future that’s rich with goodness and not simply illness.  I have to first take care of health, and then address the hoped-for future in light of my abilities and lupus status. And, I put everything into the prism and perspective of faith – God does know the future, after all, and He has a will for each of us.

When we think about the future in terms of illness, life can seem mighty scary. But when we think about a future that God is present in, supporting us and wanting what is best for us (even if this means still living with a terrible disease), the future seems brighter. Taking all those “this could happen, that could happen” moments and lifting them up to the Father, then taking cherished dreams and regarding them creatively, one step at a time (the subject of my next blog), can give us the support and relief we need to be more confident as we move forward, even if the future is unclear.

Blessings for the Day,

Maureen

 

Previous Posts

Chronic Pain: Lost and Found
Somewhere, amid the pain and the frustration we feel over lost health and today's health trials, there are bright, uplifting memories we've lost track of, times when life was easier or days when we heard and enjoyed laughter, did good things and had good times. There are people and places that broug

posted 1:10:19am Aug. 30, 2014 | read full post »

Chronic Illness: Embracing smooth sailing!
Like the calm before the storm, or the comfort before the next flare, the period of relatively "smooth sailing" can be a bit nerve-wracking. We know that "chronic" means ongoing, and have had flares rise up unexpectedly in the past. So, a period of quiet, when the illness is not so active, might mak

posted 8:03:03pm Aug. 28, 2014 | read full post »

TLC Tuesday: What if you missed Tuesday?
If you have a chronic illness or live with serious pain, you know that sometimes, you "miss" a day or two in the week. It's too hard to get out of bed. You are going through medical tests, and the outside world seems to disappear into the technicality of prep and procedure. You're brain-fogged, and

posted 1:56:46am Aug. 26, 2014 | read full post »

TLC Tuesday: Slow down!
It's TLC Tuesday, again. But it's also probably the heart of "Back to..." season. Back to school, back to work, back to lots and lots of activities. Yes, activities, and, probably, a lot more stress, a lot more "Hurry up!" But we know that our illnesses and pain often react negatively to "Hurry u

posted 1:31:48am Aug. 26, 2014 | read full post »

Chronic Illness: If You Were Not You
One of the techniques I try to use whenever I'm in a quandry over something regarding my health is to ask, "What if I were not me? What if I were my mother? My sister? My friend? What would I say? Do? Pray over?" This helps me take the sometimes-frustrated or "at sea" me out of the conversation a

posted 1:47:51am Aug. 23, 2014 | read full post »


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