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Good Days…Bad Days With Maureen Pratt

Good Days…Bad Days With Maureen Pratt

Lupus and the Sun and Other Light

posted by mpratt
Image courtesy of Keattikorn/FreeDigitalPhotos.net

Image courtesy of Keattikorn/FreeDigitalPhotos.net

It happened again! I went to a restaurant and the server asked me how I kept my complexion so clear.

“You have great skin,” she said. “What’s the secret?”

Ah! I love that question. Not out of some kind of vanity, but because I can use it as an occasion to educate and, perhaps, make a small difference in someone else’s life.

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The ‘secret’ is a blessed byproduct from living with a very difficult, potentially life-threatening illness: lupus.  The secret, simply put, is that I try as best I can to avoid the sun. And, now that I’m taking a medication that is making me much more sensitive than ever to UV rays, I’m trying to moderate the time I spend exposed to fluorescent lights, too.

For many lupus patients, the sun’s rays pose a threat to health because of an interaction between UV exposure and cellular changes that can occur with that exposre. The damage can result in flares and/or internal organ involvement. And it can also result in rashes, especially on the face.

In my youth, before I was diagnosed with lupus, I was never particularly fond of lying out in the sun, and I didn’t go out of my way to tan. But I didn’t think of sun exposure as something health-threatening except with regard to skin cancer. Now, however, as a lupie, I strive to be vigilant about the sun, often turning down invitations and sitting out of activities that will put me at risk for exposure. In situations where I have to go outside during the day, I go out “armed” with sun-protective clothing, heavy-duty SPF sunscreen, and one of my many broad-brimmed hats.  I’m still figuring out how to minimize exposure to fluorescent lights; with the new environmental rules, these sources of artificial illumination are everywhere – even doctors’ offices – and so are nearly impossible to avoid. But, I’m able to do a few things, such as limit the span of time running errands to stores where bare fluorescents glow. Life with lupus is a constant learning process!!

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For many lupies, the damage from sun exposure might not show up for awhile after the initial event. Likewise, skin damage caused by lots of sun exposure might not show up for years. Now nearing my 18th year since diagnosis, I am still challenged with lupus, but I do enjoy those random questions about “the secret.”

And I enjoy, too, being able to smile and share one of the blessings that comes with taking charge of at least one aspect of life with the confounding illness called lupus.

Blessings,

Maureen

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Chronic Pain and Illness: Priorities, Priorities

posted by mpratt

Maureen Pratt Author PicIf you find it difficult to prioritize responsibilities and activities while juggling the effects of life with chronic pain and illness, you’re not alone. I do, too, and sometimes I feel akin to a circus act – wondering if I’ll drop anything of importance while managing so many moving parts, especially when it comes to keeping my medical team up-to-date.

Lists help us prioritize, as does consulting with our doctors and loved ones about their perspective on what we need to do when. But I’ve found that taking a realistic look at time is, for me, the key.

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I once had to rehab from a neck injury. The physical therapist was terrific, but each visit, she gave me more and more exercises. I finally counted up the time spent on each required exercise and it came to more than two hours – and I was supposed to do the reps each day! When I showed her the tally of time and explained that I was getting more tired rather than rejuvenated, she understood completely and modified the exercise routines accordingly.

If, like me, your health condition brings on significant fatigue, it’s especially to be conscious of time commitments. If I have a particularly gruelling day of medical appointments or tests, I know that I’ll have to be still for a good while afterward – sometimes several days – to recover adequately. It can be frustrating, I know; we’ve all  had enjoyable opportunities pop up unexpectedly in the midst of a very exausting period. But instead of letting frustration take hold, I try to pray through it, believing that good friends will understand and God will bring joyous occasions no matter where I am or what I have to do.

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The past several weeks, for me, have been one infection after another, culminating with a very bad bug that kept me in for two full weeks. My energy reserves are still low, and more than ever before, I am finding I have to set priorities and dig in to keep them, guarding my need for long stretches of rest and quiet. But in that rest and quiet, even then, I know there is comfort, peace, and, yes, joy.

No matter where we are, or how softly we have to walk through our days, God walks with us!

Peace,

Maureen

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A Praying Spirit: Mundane Prayer

posted by mpratt
Photo courtesy of Gualberto107/FreeDigitalPhotos.net

Photo courtesy of Gualberto107/FreeDigitalPhotos.net

Laundry, dishes, fixing a meal, brushing our teeth – these are “usual” parts of our day that we probably don’t give much thought to. Mundane things – and often, they are activities that we try to hurry through so that we can move on to something more memorable or enjoyable. But, wait…

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If God has given us our lives and the ability to do many things in and with them, including the “mundane” actions we often take for granted, then what better time and place for prayer than to engage in converation wtih God while we do these very same things? After all, God is with us at all times in all places, even in the laundry room, kitchen, car, or basement!

Add prayer to a “mundane” activity today – acknowledge God’s presence there and then, and make mundane memorable.

Blessings!

Maureen

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Chronic Illness: Keeping Current

posted by mpratt

Seems like each day, one or more of my apps or computer programs has to be updated. And, sometimes, a single app or program updates more than once. Of course, most times, it’s important to keep these tools updated, but it can become frustrating, especially if you’re getting ready to close down all the electronic devices, but cannot because of, yes, more updates!

Having so much updating going on around me has made me think of how well I keep current on other matters, especially when it comes to my chronic illnesses. New developments, new knowledge, new approaches to old problems – sometimes there’s nothing “cutting edge,” but sometimes there is – it never hurts to ask my doctors for the latest, especially if I’m having problems with the status quo. And it also is helpful before my next appointments to talk with friends dealing with similar health challenges. Sometimes they have tips and tricks that they’ve learned, and I can add these to my list of questions for my docs (I always recommend asking treating physicians first before trying anything new). Sometimes, too, there are new books or articles and studies that can be interesting and, possibly, lead to a new approach (but, again, I always run these things by my docs first).

We’re in the midst of spring and spring cleaning. If you feel a bit stale when it comes to your approach to life with your illness, next time you visit with your doctor, ask if there’s anything new. Sometimes, just the question can lead to a bit of fresh air!

Joys,

Maureen

 

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