Lupus Adventurer reflects on the first Christmas

One Perfect Lamb

Down from the glory of eternity’s home,
a baby was born as a carpenter’s Son.
Willing so humbly to enter our world,
Creator and Master, the Savior did come.
History splitting, prophecy fulfilling, sin forgiving,
life transforming man,
Jesus Christ, both Son of God and son of Joseph and Mary,
a miraculous plan.

Three decades passed without one wrong or sin,
lived as the One Perfect Lamb.
He offered Himself, life and blood for man’s sin.
Buried three days, He arose up again!
Overcoming sin, death, sickness and the grave,
giving life unto all reborn men he would save.
Accepting His gift, true forgiveness is found,
New life, new joy, and truest Christmas blessings abound!

Thank you for letting me share my poem from several Christmases ago with you again, this year.

Jesus Christ is my reason for Christmas!

Merry Christmas,
Lupus Adventurer

Copyright 12/24/2010

Lupus, Christmas shopping and wishing for bags with wheels!

Photo Attribution: By Pedro from Album, The Wanderings of Jeremiah, “Pack Mule in the Sanctuary Trek”

Somewhere along the way through the second major bout of Christmas shopping, a bright idea popped up, inspired by my second shopping trip of the season without a pack mule (aka, willing family member) to go along and carry my bags.  Where did reason and sanity go?  What would cause a gal like me with lupus arthritis to walk the mall for four hours shopping alone?

Between Penny’s and Dillard’s, while still only carrying 2 heavy bags, my memory cleared about why Kohl’s is my favorite place to shop for “stuff.”  They have shopping carts!  As my number of bags increased from store to store, so did their weight!  Pretty soon I was wishing I could just pile them on a skate board and pull the contraption behind me with a rope.  Where were simple, primitive wheels when I needed them?

We are still carrying our water, today!

I mused as I trudged along through the mall quietly humming Christmas carols to myself.  There is nothing civilized about being a beast of burden bearing all my heavy packages.  It seems I remember learning in my childhood history class that being civilized meant people didn’t have to lug heavy stuff by hand from place to place like human pack mules

I paused to stop and think about it for a moment, while I set down my bags to rest and reposition!

Civilization – that means no carrying water and no carrying heavy items for miles to just to get them home.  Yet, how is it that we buy our water in bottles and have to lift and carry it home in gallons or cases of small bottles?  I thought we were supposed to have clean, safe water running through the pipes in our homes.  How is it that we drive to a place to shop where we have to carry everything for a mile or two, to and fro in the mall, before we can finally put it all in our car and take it home.

Maybe carrying on my head would be an improvement!

For a few minutes, I even pondered whether it would be easier to carry all the bags if I put them in a large basket and balanced them on my head. I remembered seeing pictures of indigenous people from far away lands doing that.  By the time I was done shopping, I had a purse on one arm with two large bags, and three large bags in the other hand.  Fingers, wrists, elbows, shoulders all complained at the weight of their burden.

But, my musings made me smirk.  Were any of the other shoppers around me pondering the uncivilized aspects of Christmas shopping?  Probably not!

At one point near the end of my shopping trip, I briefly considered dragging the hefty bags on the ground, but decided that they might wear through and damage the gifts inside and chuckled at myself.  I thought the better of it, but must admit, the thought was temporarily tempting!

Here I sit musing… it is almost Christmas!

So, done with my evening’s shopping, here I sit tonight at home, musing over my Bing search engine results for “shopping bag with wheels.”  I have learned that the same item I was wishing for can be purchased for anywhere from about $10 up to as much as one I saw for $500!  A modestly priced rolling shopping bag would seem to be a wise investment for someone like me with lupus!

Here are some examples of rolling shopping bags (and links to where I found them) that I am considering before my next major shopping trip:

• Bag #1 – Looks big enough for today’s shopping trip
• Bag #2 & Bag #3 – I saw this in purple and lots of other cool patterns, but it cost more than the others
• Bag #4 – I liked the expandable feature and the price
• Bag #5 – On E-Bay for a moderate price, and even comes with Butterflies!

Bag #1 @ $20.00

Bag #2 @ $25.00 to $35.00

Bag #3 @ $25.00 to $35.00

Bag #4 @ $10.00

Bag # 5 – On E-Bay @ $23.00

Now, there are only a couple of shopping days left before Christmas, and I am getting excited about the prospect of time to spend with family to visit and reflect together on the true meaning of Christmas.

A couple more stocking stuffers to buy, gifts to wrap, the house to clean and goodies to prepare… I can hardly wait, Christmas is in the air!

Lupus and Getting into the Spirit of a Christmas Shopping Safari

Today was hair day!

Today was hair day, and there was a two-part plan!  First, it was time once again for the every eight week ritual of shampooing, hair dye, scissors, a blow out and great conversation during the session of hairdo taming and transformation.  Despite lupus and the handfuls of hair in the drain after every shower, there is a lot of thick hair left for the stylist to work with, arguably a lot more even than most people without lupus.

So, because of all that over abundant hair, there is a lot to dye, cut and dry. Time in the salon usually is measured by half-days and not just a couple of hours, but always at least three hours.  It takes a patient hairdresser like Rosa to handle the work diligently, especially after our recent shift to thicker oil-based hair dye.  It takes longer and requires smaller sections of hair for coloring the roots properly.

Manicure recovery time!

Today, since it was Christmas week, the hair appointment stretched on into a visit the nail tech Stephanie. Pulling out a personal bottle of shimmering red polish from my purse, and requesting a basic manicure and polish change to replace chipping remnants of last week’s manicure, salon time extended yet another hour.

This was nice!  Aching knuckles were soothed by a soak in warm water, followed by a gentle hand massage (by far, the best part of any manicure.)

Emerging from the salon into the adjacent department store, it was now time for part two!  Justifying browsing through the dress section with the need to allow polish to dry and cure before driving home, then set out on foot in the opposite direction from the parking lot.  A safari adventure had just begun, venturing out into the wilderness of a  mall at Christmas!

More than two arms could hold

There were restless natives everywhere, searching through dense racks of hanging garments  Soon, the idea to finish Christmas shopping pulled me on through uncharted expanses of the wilds of sale ridden shops and kiosks.  The natives scurried to and fro every direction around my path, carrying burdens and parcels to unknown destinations and homes.

Finally reaching the oasis of Macy’s department store, soon all the sought after fruits of diligent foraging were added to my sacks.

Eventually, the weight nearly exceeded the load two arms could hold, and with one sack in each hand, they were slung over each shoulder and carried the remaining part of the journey much more comfortably in double back-pack style.  Lupus arthritis began to pull and weigh down each step, and soon feet were dragging along in a weary, exhausted cadence.

Oh no!  The painful realization hit that my car was parked at the complete other end of the mall!  A series of slow deliberate steps led all the way back to the salon and then the car.  It seemed like it took forever.

Safari was over, the desired trophies all stowed in the trunk, and a weary wanderer seated safely in her little car, headed home to a waiting husband and easy chair.

Post holiday care for a major lupus flare

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.

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!

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.

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.

Benlysta infusion and forgetting something

stopped at the valet

Today was my last Benlysta infusion of the year, and I was the last infusion of the day at the hospital’s cancer infusion center.  As I arrived, I stopped at the valet parking station and headed right in.  In the waiting room the discovery of my Nook tablet battery on empty made me wonder what I would do for the next couple of hours.  Soon, I was distracted into a Christmas mood by noticing wreaths, a Christmas tree and other colorful holiday decorations bringing cheer to the infusion center suite.  The nurses welcomed me with offers of goodies and an invitation to sample the contents of a generous spread of treats.  The nursing staff and a couple of patients had all contributed to a bevy of sweets.

sampled a brownie

As I sampled a soft, gooey brownie filled with walnuts and chocolate chunks, I started craving some coffee, and made a note to myself for next year to bring something to share at my December infusion.  While the staff prepared my IV infusion set up, I dropped my purse and jacket at the infusion chair closest to the coffee station and brewed a single serving of some surprising great coffee, complete with my favorite hazelnut creamer.

vein on top of my hand

Although I have easy to find veins, the nurse had trouble run getting past a valve in the vein on the top of my hand, just as we both remembered she had the same problem in the same spot once before.  She explained that some patients are what she called “valvy” explaining some people have more valves than normal.  The unusually uncomfortable feeling of pressure in the vein had me communicating my discomfort with conviction, as the nurse commented the IV had just blown out.  Pulling the it out, she and I both agreed she would have to toss it and try another IV in a new vein.

got the infusion going

Soon, she got the IV successfully in place and started the Benlysta flowing.  I settled in to read a novel I had borrowed from the book cart on the way in, not sure it was going to be one I would want to read through to its end, but its early pages sufficed to keep me amused, sans my uncharged techie toys. The short one-hour infusion time passed quickly.  Most infusion days, I arrive at around 3:00 p.m. and am usually walking out by 5:30 p.m. or so. Today was no different, except for stopping briefly to exchange Christmas wishes with the nurses and saying goodbye until “next year.”

cash for a tip

The infusion center validates valet parking for patients at the hospital, but I realized as I left the building that I did not have any cash for a tip.  I left my keys with the valet, and let him know I would be right back.  I headed for the main hospital building to find a teller machine.  Just inside, I found one, pulled out some cash and went to break a twenty at the gift shop.  I found a cute battery-powered necklace made of miniature Christmas lights, thinking it would be fun to wear to work next week, and calculated the cost just was enough to break a twenty with plenty of change left for the tip.

Once back in my car, I headed out toward the street, suddenly realizing I had forgotten the file folder I brought with me, expecting a call from my financial adviser.  I remembered I had left it on top of the teller machine!  In a panic, turned my car around at the light and rushed back to the valet station.  Handing my keys back to the valet, I hurriedly explained I had left some very important papers and had to go get them.  I literally ran back through the hospital entrance, glad I was wearing sneakers, and uttered an audible thank you prayer as I spotted my pink file folder atop the teller machine.

Catastrophic in the wrong hands

Inside the file was a receipt, super bill and lab orders from my rheumatologist and my medication list, but more importantly, it also contained my father’s bank statements and the durable power of attorney for handling his business affairs.  This week, I have worked with the bank to restructure some of his maturing investments.  The file contained all dad’s bank account numbers, statements, account balances, addresses, etc.  This information, together with the details in the power of attorney documents, could be catastrophic in the wrong hands, potentially providing everything someone would need to commit bank account takeover fraud.

Slowing down abruptly to stop the pace of my pounding heart, I retrieved the file with a deep sigh, took a couple more intentionally deep breaths, and whispered another short  prayer of thanks.  Instinctively, I clutched the file tightly to my chest as I slowly walked back outside.  Thanking the valet once again, I was back in the driver’s seat and finally truly headed home.

lupus and short-term memory deficit

As I pulled away, I noticed my heart was still pounding and grumbled to myself.  I was extremely frustrated that lupus and my short-term memory problems from CNS lupus caused me to forget something so important!  I was also angry at myself for being careless with the file.  At the same time, I was extremely thankful I remembered it in time to prevent financial disaster.

My favorite expression from the famous Charles Schultz cartoon character, Snoopy the dog, was on my lips as I drove toward the freeway, voicing a deep guttural “aarrgh!”

 

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!