One Patient's Positive Perspectives

Posts tagged ‘coffee’

Lupus, the inertia effect, and my valentine

thEGJELUGJAlthough true for everyone, every lupus patient personally understands this truth: a body at rest tends to stay at rest, and a body in motion tends to stay in motion.  The physical science behind the laws of inertia may not be exactly simple, but they are clearly understood by lupus patients.  A sedentary lifestyle is effortlessly easy to maintain, while changing from a body in at rest to one in motion can be an incredible challenge.  Looking back at the past two years of concerted effort keeping college studies moving with great inertia, it seems other areas of life hopelessly succumbed to a lack of motion!

bathroom scaleWith the accelerated rate of scholarly efforts came an equal and opposite effect on physical exercise and healthy home-cooked meals.  Weighing a full twenty pounds more than two years ago, the lack of inertia impacts several rooms in the house: the bathroom scale registers twenty pounds more, clothes in the closet are two sizes larger, and food in the kitchen lasts only half as long on the shelf.  Too much fast food in too much of a hurry did not help this high calorie, nearly exercise-less existence.  Alas, exercise and healthy meal planning take time.  More time than there was to spend while attending college.

Energy-conserving dinner prep for lupus patients!In efforts to reclaim a healthier lifestyle, a newly restored relationship with the kitchen has been growing again.  The smell of real food in the house, heavy on light, fresh, whole foods and light on the oil, sugar, salt and other forbidden non-fruits of the grocery store processed food isles.  We are also rediscovering the purpose of the dining room table, and the fine art of dinner conversation.  This certainly is a vast improvement to fast food distractingly munched under gaze of a watching computer screen’s light.

As we look at tomorrow’s Valentine’s Day, it was a pleasure to have the time this year to thoughtfully contemplate and purchase a card and small gift bag full of my sweetheart’s favorite surprises, without simultaneously feeling a frantic pressure from struggling with a choice between study and shopping.  Over these two years, he has been an amazing encourager and support, as he single-handedly held down the home front by shopping, cooking, cleaning, and (yes!) doing laundry. College would have been impossible without him!

valentines-day-love-heart-romantic-heart-butterflyA gift bag awaits the morning in the fridge, positioned right in front of the coffee creamer on the shelf.  When he gets the cream to pour into my cup of coffee, there it will be for him waiting to greet him with a, “Happy Valentine’s Day” for me, while I am still struggling in bed with the fog of morning lupus brain.  Every morning he wakes me with a cup of coffee in bed.  This man deserves some very special love and appreciation!


Post holiday care for a major lupus flare

A few indulgences, with moderation!

Happy birthday, sweetheart!

Awaking on my birthday the morning after Christmas, my husband was plying me to enter the morning with fresh brewed coffee.  What could be better at 7:00 a.m. than fresh gourmet java?  After greeting me with a sweet good morning kiss and “Happy Birthday, sweetheart,” he agreed to my groggy suggestion of where he could find the Christmas leftovers to take with him to work for his lunch.

Soon, he had headed out to work while I sipped half of the hot cup of coffee, and after setting down the partly finished cup, I rolled over and snuggled into my pillow to catch a little more sleep.  After all, I was entitled, it was my birthday!  One more hour would be just what the doctor ordered for my groggy grey matter.

Repeated steroid treatments

Going for the steroids

Five hours later, I stumbled out of bed toward the kitchen, gasping when I saw the clock face on my stove read 12:07.  I had slept until noon!  The only trouble with sleeping in was that I was supposed to have been to work by mid morning, earlier than it was by then.  I stood there for a moment, and was in a deep state of mental cloud with whopping all over lupus symptoms. I was I the middle of a major post-holiday flare of my CNS lupus.  A not so welcome birthday lupus adventure!


Downed meds with more coffee

I went straight for my morning meds and some extra prednisone, downing them with a cup of fresh brewed coffee from my new Keurig coffee maker.  While it might seem like I should have been fully rested after fourteen hours of sleep, I was everything but refreshed.  I felt completely exhausted!

Back to my data confused

a quick email to my boss

I sat down at my desk and wrote a quick email to my boss explaining the all too clear truth, and set out to quickly recover the rest of my birthday and work day.

Within just over an hour, I arrived at my office but was still stumbling mentally through my responsibilities.  I had brought goodies with me to share with the skeletal group who staffed our office in the days between Christmas and New Years, and they helped me indulge in my favorite triple berry birthday pie and a plate of Christmas sugar cookies.

Except for the three high points: my husband’s good morning kiss, co-worker birthday greetings and berry pie, it proved to be one of my toughest half work days in recent history due to the extreme activity of my lupus, attacking brain, joints, and just about every other part of me.  My evening however ended on a high note, as I arrived home to a message that the kids were bringing home dinner.  We shared a quiet birthday take-out dinner from a local pizzeria with my husband, daughter and son-in-law.

Celebrating Lupus Awareness Month, May 2012

Taking care of lupus flare

Each morning since, my lupus symptoms have been a little lessened, and each day I have dropped the prednisone dose by a couple of milligrams.  It will take a couple of weeks to get back to my normal five milligrams per day maintenance dose.  Although I have ambivalent love/hate for the steroids, there is no choice but to take them when my lupus flares that severely and suddenly.  The only real option is to burst with prednisone to take care of that kind post-holiday lupus flare.

Unfortunately, the extra sleep had not been enough to prevent it, but a timely burst of steroids can shut it down.  I am grateful my doctor prescribes extra prednisone for me to have on hand for quickly controlling flares just like this.

Temporary lupus cure? Saturday morning cinnamon rolls and coffee!

Saturday morning

Saturday morning

Waking up on a Saturday morning, it is always a relief for a working wife and mother with Lupus.  This is the one day no one is expecting her to be somewhere, fix her hair, put on shoes nor get out of pajamas until noon.  Housework can wait for the afternoon, laundry comes later and feeding the dog is the heaviest Saturday morning responsibility.

There is a different atmosphere in the air this morning.  Relaxed, pressure-less, peaceful and quiet.  She actually notices the sound of birds chirping as she traverses the hallway from her bedroom to the front of the house.  Walking into to the kitchen with her husband, he heads straight for the coffee pot and begins the morning java mechanics.  Setting that in motion, he leaves the kitchen to wait for the coffee to brew.

cinnamon rolls unbaked

Almost feels mischievous

She feels almost mischievous as she quietly turns on the oven and plans to surprise the household with cinnamon rolls.  She works swiftly in her preparations, hoping they will be ready soon after the coffee is ready.  Snapping open the cardboard tube with a crack on the edge of the counter, she twists the spiraled cardboard away from the spiced dough roll within.  Gently placing each one in a baking pan, the cinnamon rolls are quickly slid into the hot oven and the time ticks off the dozen minutes until completion.

coffee pouring into mug 2

Pouring cups of ready coffee

Pouring the cup of ready coffee for herself and her husband, she walks to their office and delivers a cup of steaming brew.  She is greeted with a grateful smile and “thank you” from the pajama clad husband sitting and working at his computer.  Placing her own cup down on her desk, she returns to the kitchen to complete her plan.

cinnamon rolls in pan

Icing hot cinnamon rolls

Pulling the ready rolls from the oven, she pulls out the icing packet and spreads it over the soft steaming cinnamon rolls –  it melts and trickles down over them.  Perfect!  Slipping a couple of the soft warm rolls to each plate, her daughter arrives at the kitchen counter just as the plates are filled, then walks away grinning with her welcome prize.   Picking up the other two plates, she returns to the office with her breakfast surprise in hand.

cinnamon rolls on plate

The aroma of cinnamon rolls

Walking softly up behind his chair with his plate, she stands beside him and waves the still steaming pastry under his nose.  As he draws in a deep drought of the sweet cinnamon aroma, he turns with sparkling eyes and a warming smile, responding out loud with “very nice, thank you!”

Sitting down to her own coffee, goodies and computer, she is quite pleased with the outcome of her small morning mischief.  She begins reading her lupus blog, contemplating what to write and quickly realizes something very important.

computer coffee mug

Simple act of kindness made thoughts of lupus temporarily vanish

For a few minutes, her plan and simple deed to surprise and show a small kindness for the others in her life, caused her own morning arthritis stiffness, pain and lupus brain fog seem to all but disappear.  Her simple act of kindness and serving helped lupus temporarily vanish from her thoughts.  For those precious moments, she seemed almost temporarily “cured” or at least, completely distracted.

Meanwhile, she and everyone else at her house was still smiling and savoring the fruit of her simple deed.  Delicious!

Lupus and confessions of a coffee mug hugger

Screaming alarm…

The alarm on my tablet PC laying on the end table summoned me from the half dead depths of sleep. The flashing screen announced, “9:20 Dr. Appt.” My waking realization was that in exactly one hour I needed to be there! So, striking the graphic snooze button to silence the screaming electronic gadget, I set the tablet back down on the night stand. For just a moment, my groggy lupus-tinged brain begged me to lay back down and wait for the 30 minute warning.

I have been late too many times in my life because of sleeping in, or because my lupus was too active in the morning to allow me to safely leave my house earlier. Today was not going to be one of them. Forcing myself out if bed, I stumbled down the hall to assess the morning state of my kitchen. Alas, no waiting coffee on the burner this morning. My husband must have left in too much of a hurry to make it.

Coffee, quickly!

Coffee, quickly, was the first order of business! No time was left to brew a pot, so some microwave zapped water and instant coffee on the go would have to do. Morning medications with a dash of juice and a quick piece of toast and Nutella.  Next sprinting through a mini-shower, and stepping into jeans, t-shirt and flip-flops were all a continuous motion sequence of events ending with a key sliding into the ignition of my PT Cruiser.

In motion, still…

In motion, still, I traveled down the freeway on a ten-minute jaunt to the doctor’s office. Still groggy and barely legal as the CNS morning lupus symptoms clung to my still fuzzy brain.  I realized I was actually hugging my thermal coffee cup!  In between sips of the stimulating drink, my cup was not in the cup holder between sips, it was gripped by my right hand, as I hugged the warm cup against my heart.

teddy bear in years long, long before

So, this is the confession of a coffee mug hugging lupus patient, in that dawning realization I was actually clinging to my coffee cup as I once might have to my little teddy bear in years long, long before grand-motherhood, motherhood, college, grade school and kindergarten. I had caught myself embracing a warm thermal mug, enjoying a few moments of miniscule fleeting comfort. How could I help but quietly chuckle at myself in the silliness and simplicity of the pleasure.

Off to the McDonald’s

Barely on-time and slightly more awake, my destination was in front of me. I enjoyed the remainder of a great cup of coffee as it accompanied me through the waiting room, time with the doctor, and chat with staff before leaving. The last sip went down as I returned to my car and headed off to the McDonald’s across the street to get a refill, write down this snap shot of my thoughts, and chuckle one more time at my now humorous expression of endearment to a mere coffee cup.

Cup and refill in hand

Now, my brain has shaken off enough of the clinging brain fog to safely embark on the rest of my day’s journey. Cup and refill in hand, I will try to regain some shred of maturity, and refrain from any more mug hugging this morning, at least not in public.

Finding a voice in the lupus conversation


April’s 30-day health writer challenge has added an interesting twist by suggesting a new concept to springboard each day’s blog post.  I was afraid I could not write a post every day for a whole month, and thought I would run out of ideas.  I almost didn’t agree to do it, because I feared I would fail.  However, here we are, half way through, and it seems it might work, after all!

I write most of my blog posts at the desk in my office, but some start on my Nook tablet. Sometimes, inspiration hits during my first cup of coffee in bed, or in the middle of breakfast at the kitchen counter, or even watching my dog jump around from my back porch swing; The tablet helps when my blog idea hits while roaming the house.  Many, many cups of coffee get cold while I write a post.  Sometimes, my cup of coffee gets zapped 2 or 3 times in the microwave before it and my blog post are both done.

Frosting on a cake...

An idea forms, after I think about things other people need or want to hear about lupus, or maybe about something in everyday life that is different because of lupus. Sometimes, the link to lupus is a slim tangent, and other times it is the whole point.  However, each blog post answers a simple question:  what can I write that people in the lupus community need or want to hear?

Each post is meant to be informative, correct, honest, positive and encouraging.   A few carefully chosen pictures help tell the rest of the story, and are usually added last, like the frosting on a finished cake.

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