One Patient's Positive Perspectives

Posts tagged ‘limits’

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!


Lupus, without any superpower or superhuman status

WEGO Health 30-Day Heath Writers' Challenge

If asked what superpower ability, like the comic book characters of Superman and Wonder Woman, I would wish to have, what would that be, and why would I want that special ability?  This is difficult!  Being such a realist, this potential flight of fancy really stretches me.  But, determined to meet the health writer’s 30 day challenge, here’s my response to the question.

As a girl I experienced incredible frustration when, while attending summer school between my third and fourth grade, I was asked to do something I had no clue how to do.  The assignment was to write a tall tale.  I wasn’t sure what a tall tale was, and I was stupefied and clueless where to begin.  The teacher and I did not have effective communication, and I don’t believe she ever listened to the fact that I had no definition for that particular form of short story fiction.  Now the incident amuses me, and serves as a great illustration of communication breakdown.  However, then it was quite distressing to me as I failed to comprehend how to do the task the teacher was expecting.

Scene from Benjamin Britten's Operetta "Paul Bunyan"

Now, you can ask me to write about something real, any observation or an experience, and my fingers fly rapidly like tap dancers on my computer keys.  But still, when asked to make up a story — the clicking halts abruptly and my fingers and brain freeze.  I subconsciously go right back to that moment in the school room, and rehearse the temporary mental shut-down. Ironically, I now know that the classic early American “tall tale” was about a burly over-sized and incredulously strong lumberjack John Bunyan and Babe, his big blue ox.  The pair was attributed with accomplished amazing feats in the minds of the storytellers and those who listened to them spin their tall tales of fancy.  Bunyan was one of our first mythical American superheros, much like Superman of the next century comic books.

I have asked myself about this superpower idea over and over, and still cannot really decide what type of superhuman power I most would wish to have.  I cannot imagine myself on the pages of a graphic novel accomplishing superhuman feats.  This is beyond my imagination.  As a lupus patient, my abilities sag far short of anything close to approaching superhuman strength.  Some days, just getting up getting through the brain fog far enough to be ready to go to work is enough challenge.  You see, I still will have difficulty writing about this unless I could come up with an idea that was really something I would want to be able to do.

So, perhaps I should start by ask myself a very different question:  If I were to be able to change unacceptable circumstances (disregarding for the moment whether I could do it) what would I change? Here are a few possibilities  in my pondering that I might consider:

  • Make everyone who is sick well
  • Enlighten the minds of those who unfairly judge chronically ill people
  • Encourage others to believe in and feel good about themselves
  • Help the faithless understand the forgiveness and love of God available to them
  • Cause my garden to grow bountifully, without weeds and producing lots of extra veggies and flowers to share
  • Banish all the self-destructive addictions that trouble and destroy the quality of life for those burdened by them

The first and last wishes fall clearly into the class of  “God things,” that can be only accomplished by Him.  These feats are vastly beyond even the abilities of the mythical Superman and Wonder-woman. These are done in God’s providence and kindness, touching one person at a time.  Many of us wish for these, but even in considering a hypothetical superpower, we would not expect our comic book heroes to be all powerful.

Beyond these two, the second, third and fourth wishes embrace goals that to one degree or another are already possible in human experience.  These four goals motivate  action and contribute to my sense of purpose and meaning.  To make a difference in these areas, a superpower ability is not what I need.  However, I do need to reach out beyond being passive and take some risks to go outside my comfort zone.  I pray for God’s help and borrowed ability to do that, and sometimes by God’s grace, human efforts make a difference in some people’s lives that touch mine.

The garden: hard work required!

As for my garden, that seems like it should be simple.  Hard work and tending are required, along with weeding, sun, healthy soil, good weather and water, since there are no shortcuts to a bountiful harvest of edible produce and beautiful blooms to brighten my personal world.  This seems like a shallow and self-serving wish, but to be honest, it is something I really must admit crosses my amateur gardener’s mind regularly!  I like gardening immensely, but admit that I am not very good at it.

Otherwise, I am content to be who God created me to be, and have decided I will pass on the idea of any phantom superpower wish.  I like being who God made me, just like I am, lupus and limits and all.  I will accept the boundaries God has graciously appointed unto me.

Lupus work-life balance in special life events and celebrations

Life's special events and celebrations

Life’s special events and celebrations present special challenges to lupus patients.  These special family times and events, such as weddings, birthdays, anniversaries and holidays can tax the limited resources of the most balanced person, let alone a person facing extra challenges from a chronic auto-immune disease, like lupus.  Intentionally acknowledging physical and emotional limits, and planning effectively to deal with limits, can help minimize the exhaustion and possible flares after special or  extraordinary life events.

Planning time to rest, lighten work schedules before trips and events, and allowing recovery time afterward can greatly improve the health outcome for lupus patients.  Before and after non-routine events, I intentionally schedule a partial work day to allow for preparation.

This week, we celebrated our 31st wedding anniversary.  My planning for date night out with my husband included taking some time off from work to permit extra special primping and beautifying for the fun dinner out.  So, I communicated with my boss and scheduled my Friday telecommute for a shorter 4-hour half-day.

Much-needed manicure and pedicure

This allowed me time to go out in the early afternoon and get a much-needed manicure and pedicure, which was a pleasant gift from my husband to help make the whole day more special.  I actually had time left to coordinate my outfit and special makeup and hair touches without feeling rushed.

In this way, my preparation activities became and important part of our whole day’s celebration, and proved to be quite rejuvenating and enjoyable.  Amazing foot and hand massages were enjoyed during my manicure and pedicure, and helped me feel very refreshed and relaxed.  There was plenty of time in the afternoon left for leisurely special hair fixing and makeup touches.  By evening, early day lupus physical and mental challenges had melted away over the hours, and our fun date night began filled with energy and my best physical and mental well-being.

We had such a wonderful evening together.  Our before dinner stroll through a nearby plaza included stepping into the jeweler’s shop for a (lovely) bracelet purchase.  We sauntered on, momentarily slowing our steps to drink in the balmy night air, the smell of roasting popcorn, and the scene of relaxed folks gathered on the park lawn enjoying an old movie musical under the stars.

Unhurried candlelight dinner together

We enjoyed an unhurried dinner at Seasons 52, positioned just within ear shot of a nearby skillful jazz musician at the piano bar, and her occasional quiet serenades.  A fitting backdrop for a pair of musicians to share a romantic anniversary meal.

In our dinner chatter, we contemplated 31 years of God’s blessings, thankful for beautiful fruit of joy and love maturing throughout our shared lives.

Lupus, and Undoing My Overdoing

Lupus, and Undoing the Overdoing

Many days are expended in chores, work and more.
After a long commute home, there’s a stop at the store.
We rush to our house, to a waiting hungry brood,
and zap up a meal to give our family some food.

After working all week, and then Saturday comes,
but more chores await once the weekend’s begun.
Laundry, and clean up, and dusting and such,
Before very long we have done way too much!

Pacing ourselves through busy weeks is tough,
and saying no, or wait, to important needs is rough.
In retrospect, its clear that we’ve continued overdoing,
and lupus has flared with no easy path to undoing!

So, unwelcome limits have imposed a new plan,
to slow down and rest over several days’ span.
Recovery of strength can be slow, a real pain,
’til we finally get back to our old strength again.

So carefully seek to find balance, dear friend,
saving some energy for fun at weeks’ end.
Lupus-imposed limits are respected by the wise,
heeded and followed by a patient who complies.

Lupus Adventurer
May 9, 2011

Lupus arthritis on a cloudy day…

On cloudy and overcast days my lupus arthritis wakes me

On cloudy and overcast days, my lupus wakes me up differently than on sunny days.  On these days, my first awakening awareness is pain in my limbs.  Symptoms of lupus arthritis, such as joint pain, stiffness, warmth, joint redness and swelling are experienced by most lupus patients.  Symptoms tend to be more intense in the morning, and usually improve a little more as each hour of the day passes.

I’m not really sure why, but my lupus arthritis always seems to be worse when it’s cloudy outside.

Increased morning joint pain is often one of the signs that my lupus is in flare.  Usually, lupus arthritis symptoms involve the same joints in both hands or feet equally, and start first in joints at the tips of all my fingertips and toes.  More intense flares of my lupus tend to result in bone and joint pain moving farther up in my limbs and deeper within my joints and extremities.

Deepest flares often involve deep pain and aching in the long limb bones between joints affected by lupus arthritis, especially inside the bones of my forearms and calves.  In the most severe lupus arthritis flares, I can even experience deep pain and aching within my upper arm and thigh bones.  These most pronounced lupus arthritis symptoms are almost always accompanied by muscle weakness, extreme fatigue, malaise, mouth/nasal ulcers, mental clouding and sometimes fever or cold sweats during my sleep.  These are the roughest, darkest days.

Progressively deeper and higher wrist, elbow or shoulder pain, or foot, ankle, knee or hip pain can tell me that my current lupus flare is likely to be deeper and potentially longer lasting.  As any given morning progresses, the speed and degree of alleviation of my lupus arthritis symptoms is sometimes a good indicator of the overall degree of a current lupus flare.

Quickly dissipating mild to moderate joint pain, stiffness and swelling are common daily symptoms of lupus.  If this type of arthritis clears quickly, it does not usually signal any flare of my lupus.  That is my “new normal” due to having lupus, and not alarming. It is the days that it doesn’t ease up that my arthritis is telling me that my lupus has moved into a more active mode.

The good news was it was lupus arthritis

When my rheumatologist first examined me, he included many lab and radiology tests.  When he was finally able to tell me what was “wrong” with me, he asked if I wanted the good or the bad news first.  I asked for the good news, and his reply was “its not rheumatoid arthritis.”  Okay, so the bad news was it was lupus!

My doctor explained that the reason not having rheumatoid arthritis was such good news, was because rheumatoid arthritis destroys bony joint tissue, while lupus arthritis attacks the connective tissue instead.  He showed me the x-rays of my stiff and swollen hands, and explained that the lack of bony damage along with my severe inflammation was a sure sign that it was lupus arthritis and not RA.

On the exterior, my reddened ballooning finger joints looked distorted and disfiguring.  But, on the inside, there was no deformity in my finger bones.  My hand inflammation was all located in the soft tissue of my joints and this was better news than an RA patient would get with hands that looked as bad as mine.  There was hope my hands would feel and function better again with the right treatment.

So, for many years after my initial lupus diagnosis, I took an anti-inflammatory drug to reduce the swelling, plaquenil to control my lupus, and steroids during periods of the most extreme joint inflammation.  This made a great difference in restoring a great deal of mobility, strength and activity to my daily life.

One-handed stapling hurt my finger joints

Once I understood that it was soft-tissue in my joints that was under attack, I began changing certain behaviors that had a tendency of stressing my joints.  At work, I realized my finger joints were being strained and swelling from picking up and using a stapler in one hand to fasten legal papers.

I requested an electronic stapler as a simple ADA accommodation and it made a great difference in preventing joint inflammation.  However, my electronic stapler started a trend, and other workers wanted them.  It was a small price to pay for improving this aspect of ergonomics throughout my entire legal office.

One of our homes came complete with a flight of stairs.  Many times my knee pain was so disabling that my husband had had to carry me up the stairs.  This might seem a little romantic, but we knew we needed to change the living situation for my health.

After awhile, my husband and I determined it would be better for me if we moved to a home where everything was on the ground floor.  This helped me not aggravate my fragile knee ligaments that had made climbing stairs impossible for weeks at a time.  I even stopped using stairs at work, and began using wheel chair ramps and elevators to protect my damaged knees.

Climbing stairs hurt my knee tendons

I still get caught off guard occasionally during a fire drill at work, and have to descend a couple of flights of stairs.  For days afterward, my knees suffer and walking is very difficult.  Thankfully, I miss most of the fire drills when they take place early enough in the morning to be over before I get to work.

I eventually learned more about my limits.  For instance, my lupus arthritis would not allow me to walk all day at a mall, or walk miles for exercise.  I also found I could not use a treadmill, without causing pain and swelling in my knees and foot joints.  So, I found some alternative, no-impact exercises that were easier on my arthritic joints:  yoga, cycling indoors on a fluid trainer (away from the sun,) and indoor swimming.

I changed my philosophy toward doing housework.  I no longer try to vacuum, sweep or mop my whole house in one day.  Instead I do things in smaller, incremental pieces.  I clean the floor in one room and wait to clean another room the next day.  I no longer try to do all my laundry in one day, but instead wash and dry one load, and then wait for a different day to do the next load.

Now, taking care of my joints is just part of taking care of the whole “me.”  They talk to me, and I listen.  Once, I shredded an inflamed calf tendon from over exertion.  Now, when my tendons and joints speak to me, I slow down and heed their warnings of the possible lupus flare ahead.  I baby my joints, yet I exercise them regularly to strengthen them, too!

Lupus arthritis gives me the most challenge on cloudy, overcast days like today.  But, slowing down to live within my physical limits, is the key to maintaining my maximum possible mobility.

BLOG September 2014 POSTLOG:

This post has surprised me with the ongoing interest it receives.  It continues to be one of the top ten favorites among the readership of Lupus Adventures, remaining weekly in the top ten posts among my readers ever since it was published over three years ago.  I would like to share this excellent educational information regarding the use of biologics to treat autoimmune disease.  I would suggest readers review a recent excellent article, Find the Best Medications for Rheumatoid Arthritis: overview, full report, and cost comparison of 18 drug options for rheumatoid arthritis, at about how biologics are used to treat Rheumatoid Arthritis, especially because of the close relationship between RA and Lupus, and the common drugs used to treat both conditions. See,

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