Good Days…Bad Days With Maureen Pratt

Inside each of us, there is a light. But somedays, it seems as if that light has burnt out.

When that happens in our homes or offices, we buy another and replace the old with the new. It’s not quite the same thing when we ourselves feel dulled, but the concept is the same: Even when we’re weighed down with heavy responsibilities of health and other things, our capacity to shine has not disappeared. Perhaps it just needs a change.

What kind of change?

The things that help me feel revived after a long flare or other ordeal ( including “life intervening”) are many – so much depends on the circumstance. Prayer, music, silliness, and stillness help. So, too, do long walks, friends, learning something new, and enjoying – just sitting and watching and enjoying – nature. And, too, sometimes there’s nothing like a good, long, stretch of sleeping and “just being” to revive. Think how long bears hibernate before emerging and enjoying the warmer spring and summer days!

Most of all, a willingness to rebound and a thirst for moving ahead are important to finding that spark. No hardware store will carry these, but as we all know, God bestows them in abundance – and they’re free for the asking!

Blessings for the day,

Maureen

Throughout healthcare facilities large and small, offices are moving toward (or have already made it to) electronic records. This can be useful when it comes to coordinating care or having ready access to test results or emergency contact information.

But, wait! It’s not all perfect, and it’s not all going to be glitch-free.

Electronic record systems go “down,” and cannot be accessed. Data might be input incorrectly. Files have and probably still will get “lost.” And medical test reports and other forms that have to be manually input “into the system” can sit in a pile on an over-worked data entry administrator’s desk for days, with the result that someone who needs that information will not be able to “find it” until it’s been scanned in.

This past week, I’ve been grappling with several problems regarding medical records. And, although they were ironed out (well, mostly), the time I spent wading through these problems was frustrating and lengthy.

For example, in one case, my telephone number on a relative’s emergency contact form was input incorrectly by the admitting hospital. Two months ago. And, despite my repeated tries to have it corrected, it still has not been. So, hospital staff who use their own records to find my telephone number and who try to call it, cannot “find” me, leading to lots of confusion and delay.

I’ve also experienced “lost” records; lab reports that seem to vanish into the ether when transferred from one doctor’s office to another.

Once, I arrived at a major hospital’s eye department for my appointment, only to be told that I was a “no show” for my appointment, which was supposed to have taken place five days earlier. When I pointed out that that was impossible because five days earlier was a Saturday and the eye dept. was closed on that day, it took several frantic minutes of searching before the administration clerk was able to agree that, yes, the “system” had mis-scheduled me and that, yes, indeed, I was arriving on the correct day and time.

For those who are also “regulars” in the healthcare world, patients with new or ongoing health problems, these and other like stories are not new. I’m afraid they’ll still keep occurring. So, what do we do?

I keep a master copy of every lab, every medical exam report, and every test result that I’ve ever had. I hand carry copies to new doctor appointments, unless I double-check that records have been forwarded and received.  I make sure that, if I call to make an appointment, reschedule an appointment, or ask a question that I get and write down the name of the person I speak with. In the case of being someone’s emergency contact, I also make sure that I have a copy of my authorization or some way of proving that I am, indeed, authorized to get information, etc. And, when there is a very complex snafu, I go beyond the front-office staff and contact the hospital or medical office/facility management and point out the problems and make, I hope, constructive suggestions.

Electronic records can give a false sense of security, that our health data will always be retrievable and correct. But we still have to do our part to safeguard this highly personal and important information. Also, we cannot overlook the human lesson in all of this data-driven drive – there is a person behind every key-stroke, and a person at the other end of the telephone (okay, eventually in the case of push-button menu-laden telephone calls!). By keeping this in mind, and connecting in an individual and human manner, we can help the situation immensely.

Blessings for the day!

Maureen

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

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