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Good Days…Bad Days With Maureen Pratt

Good Days…Bad Days With Maureen Pratt

What Season Are You In?

posted by mpratt

pic for website 2012After nearly 15 years with lupus, I’ve come to realize that the journey with the disease moves along much like the seasons of the year. Spring, full of energy and promise and new things, is much like the early days of getting the diagnosis. After a long time, you finally know what is wrong (and are validated that, yes, there is something wrong, even though many people told you it was “all in your head”). Spiritually, you’re full of praise and thanks – God’s finally answered your prayer and you know what’s wrong!

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Next comes summer, when the heat is turned up and the days are longer, muggier, and you really begin to feel what life with lupus is about and how drastically it will change your “regular” self and routine. You pray for guidance. Perhaps you pray for better doctors. You pray that the labyrinth of  insurance and other paperwork will get sorted out. You pray your loved ones will understand and stand by you.

With the realization that lupus is chronic, from “summer,” you move into autumn. The days are chillier and you feel it in your joints and bones. The sunlight, which you enjoyed before your diagnosis, is much less present, and you feel less cheery. But, you cannot sit idle. After allowing yourself to rest during the “spring” and “summer” phase, you begin to seek more medical opinions, advice from other lupies, information from books and the Web. You are restless and not so very happy that this chronic illness is, well, chronic. You might pray more that God will heal you, take away the disease, or at least lift much of its burden from your shoulders.

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“Winter” is, for me, much like being in the depths of a flare. The pain is worse, the disease activity is ramped up, and the meds are, perhaps, increased. But relief seems a long ways away. If it will ever come. God, at a time like this, might seem far away. It might become more difficult for you to emotionally desire to give thanks or praise Him. You might be too tired to pray at all.

But, then, the flare subsides. Your emotions thaw. You begin to have a little more energy. You can see the early-spring green emerging from the hard-packed, cold ground.

The beauty of thinking in terms of seasons is that we can understand a bit more about the swings we go through as we live years with a chronic illness. Although it might seem difficult to believe at times, there is a cycle to it, and there are ups and downs. And, especially, the more we understand that the lows we feel will not be forever, the more we can rest in the faith that God stays with us throughout and is always ready to comfort us, even in the coldest winter.

Blessings for the day,

Maureen

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Chronic Illness: Sometimes It’s the Little Things…

posted by mpratt
Image courtesy of dexchao/FreeDigitalPhotos.net

Image courtesy of dexchao/FreeDigitalPhotos.net

Paper cuts, ear wax build up, a common cold, a brief bump against a table that bruises a leg.

For many people, these things are inconveniences that pass quickly. Oh, but we who have chronic illness most probably know differently. The “little things” can quickly become like that sneaky waterfall, where calm waters lead to a violent, uncontrollable cascade of problems.

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Many of us who have lupus, for example, have to take drugs that suppress our immune systems. Speaking for myself, I have not “just” had a cold for years – no, I get sniffles that go into, at the very least, bronchitis, and usually the whole illness takes a month or more to recover from.

I’ve know lupies and others who have chronic illness get a “little” paper cut or other “owie,” and they end up with MRSA or some other nasty infection that takes months and course after course of strong antibiotics to get over.

Prednisone has saved many lives, but the side effects can be tough to deal with, such as the deep and ugly bruising that can come from even a slight bump.

Perhaps, though, it’s not so much the existence of “little things,” but rather the hesitancy of bringing them up to doctors or loved ones. Surely, you might think, it’s not worth worrying about a scratch or a sniffle? But, it could be important to address it; as I mentioned, those little things can snowball at times, so best err on the side of caution.

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The other part about the “little things” that is tough to live with is that we are living with so much else already. It’s hard to explain sometimes that excessive ear wax can be the tipping point to bone-numbing fatigue, but if you’re dealing with harsh joint pain, multiple meds, and fevers that spike, that one, little inconvenient trip to the doctor to flush out wax build up so you can hear can truly be the proverbial straw.

If you are reading this and you feel silly when “little things” derail your day, please don’t. These stressors have an impact, and when you have serious health issues besides, they really can amount to more than a mole hill.

Go easy on yourself. Don’t be afraid to bring up “little things” issues with your doctors – they’ve probably heard it all before, and are ready to help you with them, as well as larger health issues. And as for your loved ones, don’t be afraid to talk with them, too. People who truly love you will understand. And, when the “little things” are properly corralled and taken care of, you’ll feel the stronger – and healthier – for it.

Blessings for the day,

Maureen

 

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The Value of Being Put on Hold

posted by mpratt

pic for website 2012If we took all of the minutes and hours that we’ve spent on hold, waiting to talk to someone on the telephone, waiting for test results, waiting for appointments in the doctor’s office…and we received even $.25 per minute, imagine how rich we’d be!  Add in the amount of time we’re undoubtedly going to use up correcting electronic records or website information (passwords, etc.), and, well, our resources would be even richer.

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Alas, we don’t get paid to wait. But the time we spend proverbially twiddling our thumbs can be rich, nonetheless, or, at least we might find it to be if we approach it with something other than utter dislike.

While I wait, I pray. I organize my thoughts and notes. I read. I work crossword puzzles. I try to learn more patience, understanding that some waits are inevitable. And I truly try to take to heart the notion that, although when we’re on hold, we think that the moment of connection and finally getting information or speaking with someone is the big point, the goal, the minutes and hours of waiting are present for us, too, and valid, valuable parts of our lives.

Years ago, a friend, now deceased, gave me a book called, “When God Has Put You on Hold.” I’d never considered those moments of waiting for God’s answer or response to be similar to other forms of being on hold, but in a way, they are. And, the more we continue on, act and live, and work hard to be reflective of Him, the more valuable those moments will be, too.

Blessings for the day,

Maureen

 

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Ahead of the Holidays

posted by mpratt

pic for website 2012Are you ready, yet?

No, not for this weekend. Not for the rest of this month.

Are you ready for the holidays?

As I type this, my fatigue level is 100 on a scale of 1-10. And just as my eyes have beheld the latest of my many prescription refill forms, so, too, have they beheld the first hint of holidays – Halloween candy is making an appearance, barely a few weeks after vendors’ “Christmas in July” sales.

Oh, my!

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At this moment, I cannot imagine mustering the energy for all the activity that winds and races through Oct-Nov-Dec. But, I can start thinking of how I’m going to approach that magical, wonderful, exhausting season.

I begin with things health. End-of-year appointments, tests, records checking (is all the emergency contact information/MedicaAlert info correct?)

Next, I do a “mock run” of the things I’ll need to do during holiday season – and I cut it back, item by item. As we all know, those holiday days tend to become packed with things known and things unknown (at least right now), so I want to leave ample breathing – and resting – room.

Then, comes updating and getting ahead of any holiday messages/cards/gifts that will be used or needed. I used to hand-address my cards. No more. Printed labels are wonderful things, and with a click of a button, I can change colors or fonts to reflect the season.

Now is also an excellent time to think about travel plans, and make arrangements or reach out to people you might not be able to visit or see this year.

Finally, ahead of the holidays, I pray and read up on what makes this coming time of year so special, so profound.

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