Good Days…Bad Days With Maureen Pratt

Good Days…Bad Days With Maureen Pratt

Chronic illness: Wading into unknown territory

posted by mpratt

Maureen Pratt Author PicIt’s never just a “common cold,” is it?

Well, for some people, it is. But for many of us lupies and people with other orphan or rare illnesses, the “always sometime new” often turns out to be something so very new that there’s little research, let alone any treatment for it. My latest diagnosis, which will mean that I’m going to begin a long course of a very powerful immunosuppressive drug, is an example of this. There is only one lab in the country that runs the particular test that ferreted out my latest problem, and very, very few docs know anything at all about the condition. There isn’t a “sure” treatment, nor is there a definitive way to know what to expect.

Yup, it’s like wading into unknown territory.

So, how do you prepare for something like this?

Truth is, you really cannot prepare. But I’ve found it helpful to develop an approach that at least gives me some clarity of the situation and how to deal with it.

1) I ask each of my docs involved in the situation to explain what they know, have seen, and expect from the diagnosis and treatment.

2) I research – using reputable websites! – as much as I can about everything from the lab tests involved (and how they’re “read”) to any published literature, including studies

3) I ask my docs how many other patients they have who have what I have. It doesn’t violate patient privacy for a doc to tell me, “I have a few patients (or 5 or 6) who are currently under treatment). This helps me get perspective on numbers. I also ask about what tools (tests, labs, etc.) they’ll use to determine how my treatment course is progressing (or now).

4) I get my doctors to talk to each other and share ideas and knowledge, so we’re all on the same page. Good docs will understand that they’re learning too, and the better they learn, the better and more effective they’ll be.

5) I lift up the situation, including the complete unknown qualities about it, to the Lord. Yes, I recite the 23rd Psalm. But more than that, I especially pray for wisdom for me and my treatment team, that we’ll be guided in the right direction for my benefit and that of other patients living with the same thing.

Hearing, “We don’t know much about this condition” or “There isn’t any definitive research about this,” can be frightening, especially as we live in a society where science is expected to hold all the answers. But with God, we need not be afraid.

Steady and strong – this is our God, and this is our life with God.

Blessings for the day,

Maureen

 

Sabotaging Your Health?

posted by mpratt

Maureen Pratt Author PicYou’re upset over a new diagnosis, and you reach for the package of cookies. You know you shouldn’t eat them; your blood sugar’s been like a roller coaster lately. But it’s as if you’re on auto-pilot. Upset + availability of cookies = inevitable.

Or, you’re so lonely that you’ll jump at any invitation to go out, even if it means being among unsavory people who engage in unhealthful, or possibly even dangerous activities.

Or, you are going through a particularly bad patch with your chronic illness. It’s flaring, you feel awful, and so you let your regular, more healthful routine, slide. Perhaps you let your home and good grooming habits slide, too. Pretty soon, you look like you feel, inside and out. And you begin to feel even worse because you do.

There are myriad ways that we can sabatoge our health. Yes, even if we say, “I want to do what’s best for me,” we might not act like it. And, before we know it, we might be in even worse shape than before, spiraling quickly farther and farther down.

One of the first things to do to stop from self-sabotage is to understand your tendancy to do it. Know that you use food to self-medicate sadness. Know that your loneliness might lead to less-than-good-for-you people. Turn a very stark, very objective mirror on yourself and soak in that truth, the one that’s hard to see, but necessary to understand.

Invite someone you know and trust to help you break unhealthful cycles. This is sort of like having a sponsor in a 12-step program. Reaching for the cookies? Reach out, instead, for your friend who will talk you down from them. Lonely and desperate? Spend the evening writing a long email or a letter to someone you love who’s far away. Or, pick up the telephone.

If you’re life has become a shambles, don’t even think of righting everything all at once. Prioritize. Plan. And take the clean-up one step at a time.

Obviously, we need to work closely with our medical team throughout our illness. This also means letting them know when you’ve gone (a bit?) overboard on the cholesterol or drifted away from your doctor-prescribed exercise plan. Good doctors can be wonderful cheerleaders, and help you shake off unhealthful habits.

The important thing in all of this is not to get down on yourself for self-sabotage. Habits can be changed. Our Lord is  forgiving. And we should be forgiving of our foibles, too, so that we “go and sabotage no more!”

Blessings for the day,

Maureen

Under the eyes of a watchful, loving God

posted by mpratt

So often I hear one or more people living with illness or pain say, “Why did God let this happen?” As many of you probably already know, I tend to take an “illness is neither bad nor good, it just is,” approach to the question of “Why?” or even, “Why me?” I don’t believe God is punishing us with illness or flogging us with pain.

There is, however, another image that comes to mind when someone says, “Why?” and it goes back to one of the earliest activities that many of us did when we were children: Bicycle riding.

Remember the excitement of seeing that first bicycle? Remember the little flicker of fear when we first put pedal to the metal and rode along under the watchful gaze and steady hand of our mother, father, or other caring soul who wanted to teach us to ride? Remember the elation at first “riding solo?” What freedom!

And then, remember that first fall? The scraped knee, the bruised ego, maybe even the broken arm? And the same, loving parent who’d taught us to ride, picked us up, tended to our hurts, and encouraged us, even cheered us on, to ride again?

As we live on this earth in human form, we will have our share of falls and hurts. Illness is one of these, as is pain, and there are others. But God is not absent as we ride and fall, feel the elation of freedom and the hard thud to the ground. Rather, he is teaching us to ride, again, and ever present to pick us up and tend to our hurts. He is, after all, our heavenly Father.

As I “ride” through this life, I try to remember that God is watchful, loving, and ever-ready to pick me up if I fall. And what a great feeling of comfort and peace that is!

Blessings for the day,

MaureenMaureen Pratt Author Pic

Chronic illness and gardening: Learning to Grow

posted by mpratt

Decelles FlamingoI’ve heard it said that, “as we grow, we learn.” Well, I’m finding out things a bit differently: “As I learn, I grow.”

Lupus requires that I don’t spend a great deal of time outdoors, especially during the sunniest times of the day, so I have become quite fond of “gardening” indoors, raising African violets. As I’ve delved more into the particulars of these lovely plants, I’ve discovered many things that apply to my life with chronic illness and pain, too. Among them:

1) Plants will grow if given the right combination of light, water, and, occasionally, food. But to become truly lovely, from time to time, they will need to be shaped and pruned.

How like life that is!  What comes from our darkest moments, our most-pruned times, is often the greatest of blessings!

2) As plants age, they lose their baby leaves and smaller blossoms and, under the right conditions and with the right care, they mature into breathtaking beauty.

Once we accept our aging, and learn to “grow” into it, we just might look and act our very, very best!

3) The process of growing takes time, but is well worth it.

I constantly need to be reminded, “Patience, patient!” and tending to my African violets is perfect just for that!

4) The variety of African violets is astounding – yet each is love-ly in its own right.

Just like each of us, we are all so very different, but very much the same in our worthiness for God’s love.

5)  Flowers in bloom beg to be shared!

I’m always eager to share pictures or gift plants to people; sharing these treasures is part of the fun of growing. It is the same with the joy I feel in my faith – Light, God’s love, and all good things from Him are simply too wonderful not to share.

Blessings for the day,

Maureen

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