Good Days…Bad Days With Maureen Pratt

Good Days…Bad Days With Maureen Pratt

Chronic Illness: History Matters

posted by mpratt

Maureen Pratt Author PicDuring this week of celebrating our nation’s independence, we hear a lot about the importance of history.  Learning about the past is one of my favorite things; from an early age, I have enjoyed reading historical topics, learning about people who lived years ago, and even visiting historic sites. I like writing about history, too, and using research and analytical skills to take raw facts and figures and turn them into compelling articles and other work.

History is anything but boring, at least to me. But it goes beyond distant events and people unrelated to me. It also goes to family history, even health history.

Yes, knowing as much about our forebears health as possible can be crucial in our own healthcare. It can give our doctors clues as to what to investigate if we present with odd symptoms, and it can help navigate the choppy waters through the diagnosis process.

Knowing family health history is beneficial for understanding why we have some of the illnesses or physical “quirks” that we do, and why we don’t. It can be very encouraging to know there is no particular genetic propensity for a particular disease, for example. Or, it can be important to know that something “runs in the family.”

The science of genetics is evolving; your doctor is the best expert to help you understand what might be relevant for you and what might not pertain to your situation. But the more you are able to understand about your family’s health history, the better prepared you will be to enter into that conversation.

Familial health history can inspire us to live well and attain those old ages some of our relatives have amazingly surpassed.  It can give us a deeper picture of where we come from.

It’s one of those precious nuggets of information that, when passed down through generations, will continue to clarify and inform us – and those who will come after us.

Blessings for the day,

Maureen

Chronic illness: Nurturing Creativity

posted by mpratt

Streps for GDBDWhether it’s juggling the household budget so you can keep a roof over your head and maintain your medical needs, or it’s learning to live differently from “before illness,” and thrive, we who have chronic illness must often rely on our ability to be creative. To think “outside” the box. To adapt and change and still be true to our inner core and to what God wishes for us to be.

But creativity requires energy and persistence. Drive and determination. Trust and a childlike ability to play “what if” when pain and doubt seem all too commonplace.

Nurturing creativity becomes important, then. But, how?

Recently, I was amazed and delighted to discover that the unconventional things I’d done to get a particular plant to bloom in an unlikely place has worked. The plant, a stretocarpus, was one of those “can’t resist” purchases at a local African violet show. Someone told me it could be grown outdoors because of our climate, but someone else was skeptical. Yet another person said that they were difficult to get to bloom; they needed just the right soil and conditions. I read all I could about the plant, and decided to try growing it on my balcony in cactus soil. The picture here is proof that my “unconventional” way of growing the little beauty worked – and I’m really enjoying the results, borne of being just a little creative.

Here are some suggestions for nurturing your creative abilities so they enhance your life – stemming from (sorry for the pun) my experience growing the streptocarpus.

1) Do not believe “It cannot be done,” when it comes to living purposefully with chronic illness. If you get stuck on “cannot,” you’ll never get to “can.”  If I hadn’t dared try, I wouldn’t have a lovely plant blooming on my balcony.

2) Find a healthful way. Learn all you can about what you want to do with and in spite of illness. Talk to others who have gone before you. Find a way, a healthful way, to carry out your purpose. I learned what others had planted their streps in and found something that I thought might work under my conditions.

3) Be open to surprises. Setting up specific expectations only takes us so far in our life journey. But insisting that our spirits remain open to surprises enables us to reach beyond the concrete “steps and plans” we humanly set up for ourselves. I learned this as my little strep put out first one, then two, then three, and now four blossoms! Truly beyond my expectations.

4) Use positive prayer and affirmation. Ask God to encourage you, and be encouraging to yourself, too. Say, “I know I can find a way.” and “With God all things are possible.” Banish negative speak and criticism, unless it’s healthy, until your creativity has blossomed and you’re on your way – and then, soar!

Blessings for the day,

Maureen

Chronic Illness and Pain: Pet Friendly

posted by mpratt

FIsh tank 1This weekend marks the 18th anniversary of…drum roll please…My fish tank!

Although I really enjoy them, I’m allergic to dogs and cats (and horses and, well, just about anything else that moves about…), so fish are the obvious choice for a pet. And, although they do require work, and cleaning the tank is not exactly my most enjoyed activity, they do bring a sense of calm, especially on the really bad days.

Many of us lupies and others with illness and pain have pets, and feel the same about theirs as I do about mine. They help us look a the world a little differently and, often, in a humorous way. They bring some nature indoors when we cannot go out. They help us feel an attachment to God’s creation, and even help us get up in the morning when it can be oh, so painful to do so. I smile each time I see the fish, all lined up at the front of the tank, waving their fins and waiting eagerly for breakfast.

Of course, sometimes people take pets a bit too far. Diamond-studded collars and other extravagances just make me shake my head and pray.  And those who let their pets run amok, creating noise and mess in public, for example, truly need to rethink their priorities.  If care of pets takes precedence over care of a person, well, that’s a problem, too. But pets do have a place in our lives, an important place, even if they do take extra work and time. Yes, God created them, too!

Fish come and fish go. Those in my tank right now are, of course, not the ones from 18 years ago. But all along the way, I’ve had hours of stress relief and delight at my finny fauna. And, I pray, there are many more to come!

Scritch your furry friend on the head for me! And enjoy!

Blessings for the day,

 

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

 

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