Temporary lupus cure? Saturday morning cinnamon rolls and coffee!

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.

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.

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.

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.

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.

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 neuropathy on the way to breakfast

Breakfast Feast

We had a wonderful time this morning hosting breakfast for the family clan, and celebrated three birthdays over a brunch feast.  Getting ready for company last night after working all week was a bit of a challenge.  Against better judgment, I ended up staying up after midnight putting the finishing touches on my house.  I really like to make sure guests in my home feel comfortable, and for me that means making sure things are orderly and clean.

Where’s the balance?  I’m really not sure, but I keep trying to find it.  I must admit, last night was not balance!  At midnight I got the fruit tray ready, washing the grapes, strawberries and pineapple chunks,  and set the rinsed bananas out for the morning, leaving just enough room on my fruit platter to pile up some halved bananas.  By the time I was sure everything was “done, it was a couple of hours after midnight. “

Blame the dog?

After I finally found myself in bed in the dark, I realized I had stayed up late enough that peripheral neuropathy leg pain rapidly kicked into full gear.  Although I tried to fall asleep, it just wasn’t happening!

After laying awake the dark, I became annoyed as our little dog at the end of the bed kept sitting on my painful legs, shifting around and making continual noises.  Most nights we let him lay quietly on his blanket on the end of the bed. while we watch some TV and occasionally nibble on popcorn.  He usually attempts to be a good little dog, but is often beside himself with exuberance until we break down and toss him a piece of popcorn.  If he is quiet and we fall asleep, once in a while he gets the prize of sleeping on our bed all night.

However, after his prolonged and irritating antics during my slumber-less night, it wasn’t long before I ushered him swiftly to his kennel and crawled back in bed to try again.  Maybe I could blame the problem on the dog!

Soothing sound of waves

I picked up my Nook Tablet from the bedside table and found its “white noise” application. After sampling several noises of birds, wind and waves, I settled on surf rhythmically crashing into some unknown shore.  It was soothing, and if not for the neuropathy pain, I would have probably slipped away into pleasant slumber, dreaming of  driftwood on the make-believe surf.  In the long darkness, the white noise timer shut down an hour later, but still  I was sleepless and enduring painful surges of persistent neuropathy pain.

Calming sound of rain

Wary that taking strong medication for my pain would make waking up in time for 8:00 a.m. company difficult, I finally got out of bed a second time looking for an alternate solution.  A microwaved quick latte made with decaf tea, warm milk and honey actually helped increase my wish to sleep, but the neuropathy still was relentless.  As a last resort, I went out to my leather chair and reclined with my Nook in my lap playing white noise sounds, this time of a calming rain shower.  I finished my soothing latte and decided to sit out the night in my chair, since it was the most comfortable and close to sleep I had been in two hours.

Rested enough to enjoy breakfast

At last, sleep overtook me and brought three hours of precious sleep.  My husband found me asleep in the living room at 5:30 a.m. and woke me gently.  He encouraged me to finish  slumbering back in the comfort of bed.  Now I was finally sleepy enough to catch a few more serious winks on my pillow.  Morning came much too early for my tired lupus-challenged brain, but at least, I had enough sleep to thoroughly enjoy our early morning family gathering.

As for tonight, no midnight housework or cooking.  Instead, for me it is “early to bed” after such an “early to rise” morning!

Lupus Adventure’s Reflections: Being a Grandma is a Wonderful Thing

Being a grandma is a wonderful thing, much better than success or fame. Children reward in such genuine ways, just by saying “grandma” as your name!

Traveling miles upon miles in one day, just to collect several tiny embraces, is worth every hour and effort expended, the minute I gaze on their faces.

A week of vacation with several grand kids is far better than resorts or cruises. I’d rather read books on the couch with some tikes, and collect several “climb-on-me” bruises!

Coloring books and crayons in array, would cover the kitchen table for hours, as grandma and kids colored inside-the-lines of countless puppies, kittens and flowers.

Mealtime began with tiny hands holding around that same table all set with food, as a sweet little voice offered thanks to their Creator, (and reminded us that everyone should!)

Tiny fingers picking up bites off of small plastic plates is quite beautiful, as they daintily grasp each tidbit with skill and grin with glee as they taste each new morsel!

Grandchildren give grandma’s a very rare gift, and remind us of joy in what’s simple. Politics, troubles, crime, bosses and budgets don’t keep little children from being joyful!

Instead, they focus on which toy they will carry, or which color of crayon to use, Or, they delight in pink polka-dots on their dress, or the bright cheerful color of their shoes.

Lupus Adventurer
Copyright August 2012

Lupus and the concerned sister who paints

Carol Cavalaris

Carol Cavalaris is an artist that lives in a home nestled in the forests of Colorado, where she creates digital paintings of wildlife and nature.  She has developed diverse art skills, and began drawing and painting during her childhood in southern California.  I have never met her in person, but I loved her intensely colored paintings the first time I saw them.

Goddess of Miracles

After I contacted Carol for permission to feature her paintings of butterflies on this blog, I learned from her that her sister-in-law has had lupus for years and she has “watched her struggles, as well as victories.”  When I stumbled upon her art work, I was very impressed with the vivid beauty of her floral paintings, especially those enhanced by my favorite images of beautiful and sometimes subtle butterflies.  I just had to share a few of them with you.

Calla Lillies

Carol started with oil painting, and now enjoys the art of digital media, with a computer screen as her canvas. She combines photo and painting techniques to create unique mixed medium images. A number of her paintings focus on various animals, including some endangered species.  She explains that “creating, learning, and growing artistically have kept the joy alive and … passion to bring healing joy and beauty to others.”

Goddess of Sunrise

Carol and her husband once owned an ad agency producing print and television ads.  Her art work now includes sculpture, stained glass and graphic arts, and extends to interior design, copy-writing, music composition, novels and creative directing. Painting wildlife and nature, color and detail, are her passions.

Magnolia

Carol’s art work is on exhibit in several Colorado galleries and private collections all over the world, and is featured on T-shirt designs, puzzles, portable electronics skins, greeting cards and other items, as well as through her online gallery .

A watercolor for the guest room?

My own sister is also a painter.  When we were young I would sometimes sit and visit with her for hours while she sat at her easel.  I watched her paint and we chatted, and I now admire her patience toward her gabby little sister!  As my daughter and I were looking at Carol’s paintings that I selected to share here, she had a suggestion for her aunt. Perhaps we could ask her to paint a watercolor for my guest room. (To match the decor of purple, yellow, dragonflies and butterflies.)

Sisters who paint…

It might be a great idea, and if we can coax her to do that, we could share a print of the watercolor here.  But, perhaps one of Carol’s pieces might look great in the guest room, too!  We shall see…

~ ~ ~ ~ ~

[Lupus Adventurer will not benefit financially from this post in any way or from visits to Ms. Cavalaris' site through readers following links on this blog. The artist graciously granted permission for me display her copyrighted images free of charge for the pleasure and enjoyment of this blog's readers, and because of my desire to share the human interest story about her lupus connection.   A link to the artist's gallery site is provided for anyone who may have further interest in her art work.]

Coping with Lupus: Fact #13 – Lupus causes fatique, even on Mother’s Day!

Coping with Lupus: As many as 80 percent of people with lupus experience fatigue. For some, fatigue can be debilitating, even to the point of forcing them to stop working. All week long as I have been preparing and planning for a Mother’s Day gathering at my home, I have battled extreme fatigue.  As the week progressed, I realized that this was my first sign of a lupus flare, and have been challenged to accomplish the things I needed to do to prepare for hosting today’s festivities.  Today, I started a 20 day taper of prednisone to treat the flare of my symptoms.

My mom, a long, long time ago…

As my husband and I stood yesterday looking at Mother’s Day cards for his mother, I was suddenly overcome by some unexpected tears while holding a card that would have been just perfect for my mother.  My heart flooded with emotion and love for her, with the feeling of great loss that still sneaks up on me, even fourteen years after her death.  Today, and in all our focus this month on lupus awareness, we cannot skip over Mother’s Day without acknowledging lupus patients who are mothers.

The cards all had butterflies…

Later on, as I was dusting the pictures in my house in preparation for today’s family gathering, and I was caught again by tears.  I was dusting the framed print of a poem I had written for my mother 20 years ago, in May of 1992.  Next to it is my cross stitch picture of a grandmother and granddaughter sitting together working on a quilt, with baskets of yarn and kittens at their feet.  I gave the framed embroidery and poem to my mother for Mother’s Day 20 years ago, and after her passing, my father gave them back to me.

The poem and picture tell a little about my grandmother, who had rheumatoid arthritis, diabetes and blindness.  I must have inherited a little of my auto-immune profile from her!  My mother helped me know the real heart of my grandmother, even though my time with grandma was extremely short.  Here is my poem, written in the spring of 1992 as I worked on the cross stitch picture for her gift.

Patchwork Portrait

My mother’s a patchwork stitched over the years,
Connecting my grandma to me.
A tangent of love joining both of our lives
Who for distance and years could not see.

Mom quilted her likeness one piece at a time,
Sewn so gently and lovingly in.
Her portrait is formed in the depths of my mind,
Precious handwork, her image within.

This daughter remembers a few cherished thoughts
Of the one who was grandma to me,
Warm deep blue eyes, softer tender heart,
Tales of hobos to dinner and tea.

I try to pass on this fine quilter’s art,
To my girl as mom did to me,
Sewing choice swatches of grandma to child,
So a wee bit of grandma she’ll be.

She knows certain things that her grandmother loves,
Learned through stories I’ve pointedly told.
She cherishes knowing her grandmother’s ways,
How like grandma she is to behold!

I’m hoping that someday in God’s grand design,
A mother and grandma she’ll be,
And want to pass on some old quilter’s designs
To the little ones perched on her knee.

By Lupus Adventurer
Copyright May 1992

Patchwork Portrait

Lupus and the first rolling shopping adventure

Christmas in April?

Christmas shopping is a funny topic in April, but as I was thinking about firsts with lupus, I realized that my first rolling shopping mall trip was one of my most memorable lupus firsts.  Many years ago, when Christmas was approaching, I had to face the fact that shopping and the mall had been my absolute last priority, as I struggled through an intense long-lasting arthritis flare of my lupus.  Walking was extremely difficult because of swollen and painful feet, knees and ankles, along with overwhelming bone-tired fatigue.  Because my husband had never done the Christmas shopping alone without me, he devised a plan to accommodate my severely narrowed physical abilities and endurance.

Arriving at the mall, we approached the customer service kiosk as my husband informed me he wasn’t going to let me wear myself out shopping.  Dismissing my protests, he spoke with the mall staff and checked out a wheel chair.  Pointing to the seat, he said, “let’s go for a ride.”  It felt uncomfortable at first sitting and depending on him to push me around.  I struggled with the strangeness of my new mall perspective.  Sitting at a lower eye level than standing, it was reminiscent of walking beside my mother with my hand in hers, and not being allowed to walk around at will.

View from the wheelchair

There was an uncomfortable feeling of frustrating helplessness.  I had to tell my husband each time I wanted him to take me closer to something, and when he was looking at something, he would push me just past it, with my back to what he was looking at.  It took awhile before we communicated well about how the wheel chair was changing my shopping experience.  I didn’t like that we were not walking hand-in-hand as before, but rather he was behind me and often didn’t hear what I said.  I was along for the ride, and I certainly didn’t feel like I was in charge!  I didn’t really like it.

However, shopping from a rolling perspective was also a great relief because of the extreme fatigue and pain my lupus caused, in or out of the wheelchair.  As we gathered many purchases, I soon had a full lap and was competing with the gifts for space in my wheel chair.  By the end of the trip, I was exhausted, and greatly appreciating the wisdom and leadership my husband had demonstrated when he insisted on carrying out his plan to keep my strength.  I realized in retrospect that I would have been absolutely unable to endure the shopping trip that we had enjoyed that day together, spanning many hours and every corner of the mall.  I had to acknowledge how much my lupus was disabling me.

Others helped me get around

This was not the last of my rolling shopping excursions.  After that, most of my other shopping trips in malls, departments stores and grocery stores were from a wheel chair for a while.  For the next three years or so, my lupus continued its exhausting, crippling flare, despite the cancer and transplant chemotherapy drugs I was taking to control it.  My lupus even progressed to where one Christmas I didn’t go to the mall at all, and all my shopping took place from my home office desk chair.  That year all our gifts were ordered over the Internet and delivered to our house.

It was a full four years before I eventually ventured briefly into a shopping mall again on foot, and almost a full ten years before I was able to stroll through a mall from one end to the other on foot.  Even now, I have to carefully consider my footwear and stamina when planning to go to a shopping mall.  Often, I strategically plan to visit one shop, parking near by it to cut my walking distances.  After treatments several years ago with infusions of the biologic drug Rituxan, my lupus never returned to its earlier severity.  Although it has been many years since I had to do my Christmas shopping from the seat of a wheelchair, I will still never forget the adventure of my first rolling shopping trip!

Benlysta infusion #10 while pondering the good, the bad and the ugly of lupus

The good…

Lupus brings on many challenges and many victories.  Today I am sitting in the cancer infusion center at the hospital getting my tenth Benlysta infusion, and am pondering the good, the bad and the ugly of lupus.

First, the good – Five good things and small victories that keep me going.

1. An outstanding support and encouragement team:  my husband, family, employer, church and friends
2. Overall improvement using new biologic drugs:  first, two isolated Rituxan infusions; and now, monthly Benlysta infusions
3. A great medical team:  a great family doctor who first suspected lupus, the top rheumatologist my family doctor sent me to over 20 years ago, a great insurance program, awesome infusion team, flexible dentist, a careful conservative chiropractor, and the Great Physician.
4. Finding out that exercise can reduce my pain, lift my emotions, give me more stamina to fight the lupus fatigue, and help me lose some of the weight that prednisone makes it easy to gain.
5. The resources available today on the internet that inform, encourage and challenge me:  Lupus Foundation of America, internet medical resources, other lupus bloggers, blog followers and the online lupus community. Check out my blog roll on the Great Lupus Blogs page for more.

the bad…

Next, the bad – Five of my toughest challenges from lupus.

1. Central nervous system lupus involvement:  Brain fog, mental confusion, short-term memory loss, forgetting names, confusion about date and time, and impaired conceptual and analytical thinking
2. Fatigue: the bone-tired weariness that everyone else does not see nor understand the reason for
3. Arthritis:  Deep pain and inflammation in all my body’s joints, pain in my tendons, deep bone ache in my arms and legs, and occasional lupus migraines
4. Peripheral neuropathy: pain and nerve irritation in my legs, cranial nerves and spine
5. Sjogren’s syndrome:  dry mouth, increased dental challenges, and recurring painful mouth and nasal ulcers

the unacceptable!

Last, the ugly – Five totally unacceptable things that require me to be humble, to ask for forgiveness and/or take other, sometimes remedial actions.

1. Completely forgetting to go to a really important social or work event, weddings, birthday parties, business meetings, doctor appointments – there is no way to recover the lost opportunity, so honesty and an apology is usually the best and only response.
2. Inadequate sleep and the brain-dead morning that follows – sometimes it makes me have to write off the next day and go to bed to keep from going immediately into a flare, and sometimes just requires taking longer the next morning to wait on CNS symptoms to clear before driving to work.
3. Times when I have a bad attitude toward my lupus or others around me – this is tough, because the best way to deal with a bad attitude requires humility and fixing the unacceptable condition of my attitude and heart. Sometimes, this simply cannot be corrected without the grace and forgiveness of God, and His kind work to allow me to borrow from Him an attitude I cannot author by my own imperfect self.
4. Overactive social schedule, and not knowing when to say “no” – This is difficult when I have to retract a promise or commitment because I have misjudged my abilities. The hit on my credibility and reliability is something that I have to sustain to correct things after over committing myself.
5. The times I am unable to meet the needs of my family because lupus wins a battle – This requires honest, direct communication with those closest to me, balanced by realizing that love sometimes must be selfless, and the realization that I am not the only one with needs. All good and healthy relationships need give and take to be balanced. It is important to acknowledge that there are unmet needs, and it may not be fixable.

Lupus and the top ten essentials of life

Top ten essentials

There are many essential things every person and lupus patient needs for health and a balanced life. These critical things fall into two major categories: the things that cost money to get, and the most essential things that are priceless that cannot be bought.  For a healthy person not facing the challenges of lupus or any other chronic illness, their list might be a slightly different, but my hunch is that many people would have a list very similar to mine.

My list is simple, divided into the two categories and listed in descending order of their overall value, importance and necessity:

Priceless

THINGS THAT DEFINE ME AND MY LIFE… PRICELESS!

• My husband: love of my life, companion and best friend
• Spiritual life: God, the Bible, my church and fellowship with other christian friends
• Family: children, children-in-law, grandchildren, in-laws, siblings, father
• Music: Our piano, singing, at least one hymnal and other music books

Paycheck

THINGS THAT MAKE ME GO TO WORK

• Nutrition: water and healthy food
• Comfortable secure home: yard, garden and large patio with lots of shade, basic plumbing
• Comfortable wardrobe: clothes, shoes, and a good sun hat
• Physical needs: sleep, hygiene, dental care, medical care, medications
• Transportation: car, gas, maintenance, insurance, tires or public transportation
• Communication/Education: cell phone, Internet access, texting ability, radio, books

What is on your list?

Coming up with a list of top ten essentials is a challenging exercise that is part of the 30-day health writer’s challenge.  This made me ponder a little more than normal what really matters the most in my life.  I found it very interesting that I didn’t even include my legal career or job in the top ten list anywhere, unless you infer the need to make money to get the things in life that are not “priceless.”

What is number one on your list?

Lupus and the joys of grandmotherhood

During my trip my lupus was mostly quiet, and only a couple of mornings had significant symptoms.  It was a blessing to get plenty of rest, and even take naps in the afternoon when my grandchildren and their mommy were sleeping.  I came home feeling refreshed and rejuvenated.  Just what the doctor ordered!

A few images of my grandchildren, including the newest member of our family…

Lupus and the grandmother adventures

Lupus Adventurer boards an airplane...

This morning, Lupus Adventurer boards an airplane and flies out to visit her son, daughter-in-law and 3.99 grandchildren for a week.

Any day, her daughter-in-law is expecting the birth of the tiniest new baby girl in our family. Lupus Adventurer will be hugging her grandchildren at every chance while visiting with family in an internet-free home.

She is looking forward to attending church with her son’s family, where he is an associate pastor of a baptist church. It will be enjoyable to hear him lead congregational singing and direct the church choir, as well as enjoying the opportunity to hear her 6-year old grandson practice for his piano lessons.

Offline until Valentine's Day

A post or two might happen to sneak out from the local Starbucks or Barnes and Noble if her Nook tablet happens to get into a writing mood over a cup of cafe mocha or latte.  She will be returning home on Valentine’s evening

Offline until then…