Lupus fatigue midst the hope that springs eternal

Hope midst lupus flare

Hope springs eternal, and so it must be for me with my lupus.  Over the past few weeks, I struggled daily with overwhelming fatigue and bone-tired exhaustion from a long, low-grade lupus flare.  Discoid lupus rashes have popped up on my scalp, fingers and expanded in size and aggravation where they already were stubbornly persisting.  Mouth and nose ulcers, and lupus rashes in some very unusual places, such as the opening of my ears have emerged anew.

My job has suffered, while many days  I was only able to work half-days and was struggling to fulfill work responsibilities.  It has been a challenge to feel hopeful in the midst of such weariness.

Hope is still there

However, hope is still there, deep down, flowing inside me through a place far below the surface of the flare, ever-present and encouraging.  Hope.

Hope that tomorrow will be better, that increased steroids and today’s Benlysta infusion will shut down my flare, and that I will do better in my work again soon.  I must persist in my hope that I will be able to better meet the needs of my family again, that I will feel like cleaning house, maybe even as soon as tomorrow.  I have abiding faith and hope that God will enable me to get my eyes off of myself again to look outward instead of focusing inward so much, as I unfortunately have been doing of late.

I am convinced that hope and faith do not look down, backward or inward, but rather upward, forward, and outward.

Hope looks upward, forward, outward

Hope depends upon faith.  Faith in someone or something bigger, stronger, wiser, more powerful than myself.  There is no question now that this someone on which to direct my faith is not me.  Hope comes from faith, and the ability to relinquish and invest my trust into that one I have faith in.  My ultimate source of all hope is  the Lord, for He alone is greater than my finite mind can comprehend — in his vast wisdom, love, mercy, power, strength and so much more.

I can trust Him, and I can trust that these things that He permits (not causes) to come into my life because of lupus, such as this month’s weariness, will not always be the way they are today.

Infusion and hope

So, I hope.  I sit here at the infusion center with Benlysta flowing into my veins, and hope.

My flare will ebb, my rashes will be relieved, my strength will return, my medications will work, and I will be better tomorrow than I am today.  I will choose to have faith, to trust, to have hope and look up, not down.  From deep within me where God himself has graciously touched my heart, I know joy welling up and arising through my weariness.

The joy of the Lord is my strength, and my joy will be greater than the flare and weariness of today.  Today I choose joy, not because of how I feel or because of fair weather, but because of the One in whom I trust for tomorrow.

Choose hope. Tomorrow the sun shines!

All day a fierce late winter storm blew through Arizona.  I traveled down the freeway to the hospital in a driving afternoon rain, with windshield wipers slapping back and forth in a sloppy rhythm.  The downpour drenched my clothes in the mere 30 steps from my car to the hospital front doors.  The nurse greeted me with a warm welcoming hug, but I gave a decidedly damp one in return.

Although it rains, and my joints hurt and I am tired, I still have hope and believe.  Tomorrow, the sun shines!

Today, in my lupus flare, weariness and pain, I choose to rejoice.  I choose hope.  I choose joy.

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 two Christmases ago with you this year.

Jesus Christ is my reason for Christmas!

Merry Christmas,
Lupus Adventurer

Copyright 12/24/2010

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!”

 

Thanks-giving and Lupus

Focus on Thanksgiving

This is the one week of the year when the entire nation focuses on thankfulness.  Giving something means someone is receiving the gift.  Thankfulness is a gift, that when given blesses and honors the recipient.  To be worthy of thanks being given to them, the recipient must have behaved in such a way to inspire the gratefulness of others to such a degree that they are motivated of their own will to offer the gift of thanks in response.

Although lupus certainly is not a person, it at times seems to take on the status of person-hood.  It is often personified in my speech, as if it were an actual being.   Thus, it nearly has personality, perceived to change daily in response to the things I do to it, to aggravate or placate it.  At times it is unpredictable, capricious and even annoying.  Supposing for the sake of argument, lupus was a person, it would not be worthy of thanksgiving based on its demonstrated behavior.  It is off my “thank you” list.

Thanking God the ultimate focus

However, after thanking Almighty God, who is the ultimate focus of my highest thanks-giving, for his unconditional abiding love, undeserved forgiveness and boundless power, there are several things and people surrounding lupus in my life that are worthy of heart-felt thanks.

Thankful for people

People I am thankful for:

My husband for his patience, kindness, comfort, candor, help, encouragement, love and amazingly high opinion of me

My immediate family and a few close friends who believe lupus is real, and have eyes to see and care about my invisible challenges and chronic illness

My church family and friends, for those who care and pray for me, and ask how I am doing when they know my life has become busy or stressful

My supervisors who unfailingly support me, encourage me, accommodate me and believe in me even on my bad CNS lupus flare days

My coworkers who support me and who have made a point to gain lupus awareness, and who take time to ask questions so they can understand

Thankful for doctors

My primary care doctor who was persistent enough to search for an answer when I was arthritic, crippled and pain ridden at thirty

My rheumatologist, who continues to cajole my proactive management of my lupus, pushes me to set goals for improvement of my health, confronts counterproductive behaviors, and prescribe the right balance of medications for optimal management of my lupus

My chiropractor, who uses gentle adjustment methods that neither aggravate my old cervical spine damage nor my lupus arthritis, who understands how auto-immunity plays a part of my total health, and shares faith in God and some lighthearted humor and chuckles with me

My pharmacist, who calls me by name, watches over my drug interactions, and processes hundreds of insurance claims for prescriptions each year

Things I am Thankful for:

Thankful for things

My Bible, whose words are a constant source of comfort, strength, encouragement, wisdom and whatever else I might need at the moment

My piano, and the joy of playing it each morning to overshadow the difficulties of the earliest hours of my day, and that helps me gauge my fitness for driving by helping me measure and improve the quality of my eye-hand-brain coördination.

My house and large outdoor covered patio that gives me ample indoor and outdoor roaming room outside the rays of the sun

Thankful for blog and readers

My bike and the fluid trainer I ride it in for indoor exercise, and for how much better and how much less pain I feel after each workout

My tile and wood floors that are so much easier to clean than it would be to vacuüm that much carpet!

The Lupus Foundation of America, and it’s role in supporting lupus research, awareness, patient advocacy and physician education.

My blog (and readers!) and how much I have enjoyed receiving the encouragement of others as well as having the opportunity to connect with other bloggers, and to inform, encourage and challenge others related to lupus issues.

Thanks-giving and Lupus!

Can I be thankful each day?

This ends up a long list!  Who would have thought there were that many things to be thankful for, with a focus on lupus?

Perhaps if I just think about one of these people and one of these things each day, while thanking God for them, it might influence my attitude positively.  It might just help me keep today’s thankful heart well into the new year and beyond the Holidays.  This might be a good goal, that at the end of next year, I might be able to be thankful for, as well.

Lupus and the irony of sleeplessness

Exhaustion and sleeplessness

Exhaustion and sleeplessness – two contradictory problems that stem from lupus when it flares.  The irony is that lupus brings on neuropathy pain and deep bone and tendon aches to my body in the midst of those nights when I am already exhausted and desperately need sleep the most.  Sometimes, on nights like last night, I take pain medication in the hopes of quieting the pain enough to sleep, and knowing the medication should also help knock me out.  Last night, I was resting physically, laying still in my bed, but the mental rest of sleep eluded me entirely.

jealous of those who slept

Morning neared as I heard the grandfather clock strike five o’clock.  I quietly listened to the song birds begin to stir in the predawn darkness, rustling in the lemon tree outside our bedroom window.  I was motionless and sleepless next to my sometimes snoring, slumbering husband.  To be honest, I felt intensely jealous of his ability to fall deep into restful sleep, while I stared at the dark ceiling awaiting the first rays of light.  Soon, there was chirping and some short bursts of morning bird song and cheerful chatter.  Even the birds made me envious!  I knew that they, like my husband, had slept all night and were just now waking a few moments ahead of first light.  Their tiny avian body clocks were in good working order, but alas, mine was not!

slipped my toes into waiting slippers

As smoky first light began to slowly illuminate the room, my body began to respond to acknowledge it was morning.  I sat up, pushed back the covers and slipped my toes into the waiting purple slippers on the hardwood floor.  Scuffling out to the kitchen, I accepted my weary plight.  Morning had now broken and I was completely and utterly exhausted.  Slightly brain-dead and concerned about the tendency of my CNS lupus to flare in the wake of sleep deprivation.

No time left for sleeping

There was no time left for sleeping and slumber, since my day was going to march forward whether I was rested for it.  Soon, we would be breakfasting with our son, daughter-in-law and their four little ones.  Today, I am determined to stifle and rise above my exhaustion, counting on the adrenaline of joy to fill my precious moments with our visiting grandchildren.

the joy of the Lord is my strength

Thanksgiving week is set out before us, and we are blessed with our out-of-town loved ones visiting.  Today, although I would love to be fully rested to enjoy them with full energy and bounce, I will make do with what energy reserves are left over from yesterday mixed with a bit of “faking it.”  The irony of wanting and needing sleep, and not getting a drop is not going to erode the blessings of the day and week ahead.

My thought for the day comes from one of my favorite Bible verses, Nehemiah 8:10, “the joy of the Lord is my strength,” and today God will have to be the sole source of my sustenance and power.  Sleep may have been lost to me, but this day it shall not take my joy with it!

Lupus and the Name Inside the Book

The name inside the music book

I opened my choir book to look inside the front cover of the Christmas music the choir director had just passed out.  This year, my church choir will be re-performing a cantata we last sang several years ago.  This year, the music was not reassigned to the same musicians and was given to different singers.  Peeking inside the front cover of mine brought a wistful tear to my eye, and a flood of memories about the last person who used it.

The book had the name “Gaynel” written in pencil in the upper right hand corner of the title page of the music.  Gaynel had lupus, too, and I have mentioned her here once before.  She was almost old enough to be my mom, or at least my aunt.  Gaynel was a charter member of our church, and was loved fondly by everyone who knew her.  She and her late husband were very close friends with my in-laws who all originally came from New York.  My husband and I have known and loved her and her extended family for over 25 years.

Gaynel’s story is unfortunate while also one of faith, hope and courage.

Lupus Nephritis

In the last years of her life, Gaynel was a widow and battling kidney failure due to lupus nephritis, while undergoing home peritoneal dialysis.  Everywhere she went, she carried a rolling oxygen tank with her.  When she finally became so ill that she left the transplant list, we all sorrowed with her.  It became clear to her doctors that she was too weak to make it through a second transplant surgery, after her lupus nephritis destroyed the transplanted kidney she had received several years earlier.

I remember Gaynel before she had kidney failure.  She was a dynamic, cheerful spiritual leader in our church.  She and her late husband directed a large children’s bible club ministry in our church that involved countless children over more than twenty years, including my son and daughter.  She was also the church treasurer, a role she continued until right before her death two years ago.  The one other ministry that she was extremely determined to continue until the end, was her love of singing in the church choir.  For several of her last few years, one of the choir members helped her to her seat at the end of the alto section of the choir, with oxygen tank in tow.

Preparing for Christmas music

So, this season as we prepare our Christmas Cantata, I have the bittersweet memory-invoking honor of holding the choir book that was last used by Gaynel.  She was a hero to me, and an inspiration to everyone who watched her last years of suffering.  She faced them with cheerfulness and unwavering joy of faith.  Although she was the victim of lupus, she was neither bitter nor blaming, and accepted her fatal situation with poise and grace.

She often acted as if her lupus didn’t even exist, and never was the one to bring it up in conversation.

Her life touched so many, including mine

Two years have now gone by since her passing, and she is still mentioned from the pulpit and on the lips of all who knew her as a stalwart example of faith through trial.  She set a benchmark and example that I fear I cannot begin to meet, except as the grace of God might help me become a little more like Him.

Gaynel was a Christian, both in faith and in practice – facing her lupus and death, she had unwavering faith and strength of heart.  She was very much “Christlike,” the real meaning of the word “Christian.”

Gaynel’s life touched so many, and now, in the quiet small way her book now is held in my hands, she is still touching mine.  May I sing to God’s glory with a heart of faith as she did.

______________________

To learn more about lupus nephritis, read “Kidney Disease,” an article on the Lupus Foundation of America‘s web site.

Lupus and reasons to go to work

Going to Work

Working is one of the critical challenges many lupus patients must face.  Work is seldom easy for anyone, with or without lupus, or people would not expect pay to entice them to report each morning to do their jobs.  Work — the term implies effort, expended energy, accomplished acts, labor and toil. None of these terms conjure pictures of pleasure and ease.

Yet we work on, because the simple truth is that money is an essential resource and work is one of the most honorable ways to get it.  (Discussing any dishonorable ways to get funds is well beyond the scope of this blog!)

Lupus is predictably unpredictable

Judging either work or disability as superior to the other, or more appropriate for a lupus patient, would be incredibly unkind and short-sighted.  However, some dueling pros and cons of work vs. disability do merit a little discussion.  For each lupus patient, the side of this debate they find themselves on may change from one season of their life to the next.

Lupus is predictably — unpredictable!

Work or Disabilty?

Some of us with lupus may never have to face the decision of needing to draw on disability benefits, but very many lupus patients do.  Patients with milder lupus may never experience symptoms that threaten their ability to hold down their job.  However, some of us find that activities of daily living nearly or completely become an insurmountable challenge.

Sometimes, life with lupus is just plain difficult, and this can threaten our livelihood.

Driving to Work

Some days I carry on a silent debate in the interior of my car while commuting.  Should I keep on working with lupus if it is very hard to do so?  As I work through my arguments against my imaginary debate opponent, there are a few competing points I make.  Routinely, for the fair and complete exposition of the issues, I switch sides with my opponent. As I weigh these issues, I invite God to join my debate, and to counsel my heart with His wisdom and to lead me to each change in path I should take.

The Case for Working

Many factors help make the case for continuing to work with a lupus disability, versus dropping out of the workforce due to chronic health difficulties.  No matter what it takes, some people like me feel compelled to try to keep their jobs as long as possible, even against sometimes almost insurmountable personal odds.

Here are some of my favorite arguments in support of working that compel me for the present to remain in the daily battle:

1. Living always takes money and I have more of it when I work (pretty basic, I know, but extremely obvious and true)
2. Life with doctor visits and prescriptions costs more money than life without them
3. Superior medical care is available with employer’s insurance coverage
4. Keeping busy, active and distracted from my personal health problems is better than sitting at home staring at the walls
5. Opportunities to help others and make a difference contribute meaning to my work
6. Socialization in the workplace promotes my psychological health and balance
7. Self esteem is derived from completing workplace projects and accomplishments
8. Fulfilling opportunities to mentor and train co-workers and work group team members give me satisfaction
9. Having a motivation to get up and push myself every day keeps me active
10. Intellectual stimulation and challenge keeps me vital and mentally sharp

The Case for Retirement

Here are a few of my opposing arguments, that, if they become true could cause me to switch sides in the debate:

1. If I reach a point that continuing to work makes my lupus flares get worse and worse
2. Working takes a lot out of me, and someday it may require more than I have to give
3. Mornings are really hard, no matter what!  This won’t get easier
4. The stress of my career and job responsibilities may become more than I can handle
5. If I get to a point where I am pushing too hard and getting sick after every major project
6. If persisting memory problems get bad enough to make managing workload and staff difficult
7. If I need more rest than I can get in the evenings and on weekends
8. When I reach the magic retirement age that my pension becomes enough to live on comfortably, and is not going to improve enough to merit working longer
9. (Shudder at this thought) If we should ever see the repeal or undermining of protections given to people with chronic serious health conditions under the ADA or FMLA
10. If I ever permanently lose the heart to fight the daily fight

Crossroad ahead

These are the some of the issues that are vetted out during my ongoing debate about working vs. disability.  It is during the most overwhelming times of lupus flare that I am forced to focus on the nearing crossroad ahead, to view the split in the path before me heading in two contrasting directions.  Several times in my career, I have approached the crisis of such a crossroad.

I keep working, and my debate continues.  In the quiet of my car I drive on toward work each day, and ponder the road that lies ahead. If in the interior of my vehicle, the speedometer, car radio, or steering wheel ever respond to my solo conversation, I will know with certainty that the long debate is finally over.

Until then, to quote the seven dwarfs of Disney cinema fame, I whistle and sing the happy song, “it is off to work I go.”

Lupus neuropathy in the night watches

neuropathy intrudes into sleep

The onset of lupus neuropathy is never welcome, and interrupts some important times of rest in lives of lupus patient it affects.  At a patient’s most weary moments, this short-circuiting nerve pain and irritation may flow in disconcerting waves through thighs, knees, calves and feet.  For me, neuropathy sometimes comes on suddenly in the night watch, in the wee hours of the morning between midnight and four in the morning, intruding into what would otherwise be a restful, much-needed night’s sleep.

Neuropathy that wakes me is usually too intense and pervasive to ignore, it must be confronted.  Sometimes, when it strikes before bed time, I am able to rush to bed and fall asleep ahead of its full onslaught.  Other times, after sleeping a while restfully, it intrudes into my sleep like a robber who suddenly wakes the house.

waking realization of pain

My first waking realization is the pain in my legs and feet, and the gnawing persistence with which it wakes me.  I don’t want to wake up, I want to keep sleeping!  But, once neuropathy begins during my sleep, there is no escaping it without interaction of some type.  Along with intense restless pain in my legs, an inner ache and distress grips my weary malaise-filled torso.  There is no position of comfort to be found, no direction to toss or turn that will relieve the distressing sensations surging through me in miserable waves.  Sometimes the discomfort extends to the back of my neck and gives me a dull headache.

Tylenol, Ultram, Tea?

Getting out of bed is my only bearable option.  Moving, walking and getting my wakened body into motion seems to temporarily drown out the sensation in my legs, like turning up the volume on a stereo to drown out a yapping dog’s piercing bark.  I walk through the darkened house trying to think clearly enough to come up with an idea for relief.  Tylenol? Maybe that will be enough.  Ultram? Do I have enough hours to sleep for it to wear off before I have to get up?  Hot tea with milk and honey? Maybe increasing my  L-tryptophans will put me to sleep naturally.  However, sometimes I try those things and go back to bed, only to lay in the dark for another hour still feeling miserable and waiting for relief that doesn’t arrive.

hymns in the quiet darkness

On the worst neuropathy night watches, sometimes I wander out to the living room in my bare feet and pajamas, and spend a half hour doing yoga exercises dark to the rhythm of my husband’s snoring from the other end of the house.  Sometimes, I am able to sit comfortably enough to read my bible or a book, but other times, it is necessary to redouble my efforts to distract myself and drown out the neuropathy “noise.”  On the very worst nights, I give up trying go back to sleep.  I sit down at my grand piano in the dark and turn on the piano lamp behind the piano’s lyre, open a hymnal and start playing.

There, in the gently lit corner of my slumbering house, I quietly play hymns into the early hours of the morning and turn my heart to heaven.  If I cannot stop the neuropathy, and I cannot sleep, I resolve not waste precious hours in bed awake and miserable.  Instead, if sleep becomes impossible, I would rather sit in the dark playing music to honor and commune with my Almighty, merciful and comforting God.  This way, misery is forced to yield to the joy of fellowship with God in my quiet refuge of peaceful musical worship.

verses on these thoughts

A few verses from the Bible touching these thoughts:

Lamentations 2:19  Arise, cry out in the night: in the beginning of the watches pour out thine heart like water before the face of the Lord.

Psalm 63:6 When I remember thee upon my bed, and meditate on thee in the night watches.

Psalm 104:33  I will sing unto the LORD as long as I live: I will sing praise to my God while I have my being.

Psalm 107:28,31  Then they cry unto the LORD in their trouble, and he bringeth them out of their distresses. Oh that men would praise the LORD for his goodness, and for his wonderful works to the children of men!

Lupus and forgetting the unforgettable

Friday telecommute

Last week, there were no doctor appointments or Benlysta infusions scheduled for Friday, the day each week I telecommute and schedule in most of my appointments with doctors, lab work and other meetings. One of my best friends asked me to come over for lunch, since she was off work for the day.  This was the second time we had tried to get together in a couple of weeks, since the week before I had been sick all Memorial Day weekend, and forgot all about our plans to meet on Tuesday.  She of course, anticipated I would not remember after being sick for three days.

forbearance of sister friend

So, my dear friend overlooked my forgetfulness, because she well-understands the effects lupus has when it goes after my central nervous system in a flare. She is always so gracious when our friendship and plans take a back seat to the changing state of my health. That is why she remains one of the few very special people who have risen to the status of sister in my personal circle of friends.

ok & looking 4wrd 2 it… see u then

So, when Friday morning came, I woke up with a groggy brain and a grateful heart that there were no places I had to go that day. There was no thought on my mind except that for once, I had no appointments on my schedule.  The lack of appointments had been the original logic behind the plan to meet my friend at her house during my telecommuting day lunch break. She only lives about five minutes from my house, so it was really a workable plan. On Thursday, she texted my cell phone to check if we were still on, asking if I was I feeling okay?  My reply, typed with two thumbs on my cell phone at a stop light, “ok & looking 4wrd 2 it… see u then.”

fixed myself a sandwich

Well, as Friday morning progressed, I pulled out my laptop, logged on to my work computer network via the Internet and nifty VPN connection. Lunchtime came, and I went out to the kitchen and fixed myself a sandwich, and went back to work. It never entered my mind, until late the next day that I was supposed to call my friend and go to her house for my lunch hour on Friday.

On Saturday, I had a vague sense I might have forgotten something I was going to do, but couldn’t remember what it was. Was I going to practice music with a friend after finishing my work? Was that the day my other friend was planning to meet me? Was my other friend in town this weekend and we were going to have a piano lesson?  None of these had made it on to my digital calendar, so I gave up trying to remember what I had missed.

Did you forget about lunch?

On Sunday morning at church, my friend approached me with a hug, as she said, ” did you forget about our lunch on Friday?” I was suddenly seized with the realization I had stood up a best friend, again, twice in two weeks! With profuse personal anguish and painful honesty, all I could offer in explanation was that I had simply completely forgotten about her on Friday. “Well, when.11:00 a.m. came and went,” she explained, “I eventually figured that out.”

This was a difficult, awkward moment! Not meaning to, I had disappointed my dear friend and hurt her feelings. Of course, she tried to understand, but still, the lack of being important enough to me for me to remember our plans, for a second time, had to have some sting to it.  Not many friendships could weather this type of challenge, but this one has seemed to endure many of these memory lapses.  I thank God for a handful of friends and family like this!

Arrrgh!

This, the unpredictable loss of important short-term memories, priorities and plans, is one of the most challenging adventures I must face due to lupus, and its frustrating impacts from attack on my central nervous system.  If I could only always remember not to forget, I would!  In the eloquent words of the Charles Shultz cartoon character, Snoopy the dog, “Arrrgh!.”

Lupus, limits and drawing the BIG red line

A key to managing lupus

In every lupus patient’s life, there are people around them who seem to be able to keep going and going without ever stopping, the energizer bunny folks!  We all know at least one of these people, and for most of us, when we compare our own lives to these active busy people, we sigh in weariness at thoughts of their schedules.  Lupus patients have limits, some of us much more than others, but perhaps the majority are polar opposites of our more active, constantly moving and doing acquaintances and friends.

People with lupus may have limits that affect their social life, and their behavior in response to those limits can affect family and social life and the outcome of health with lupus.  A key to managing lupus is to look at these limits squarely, head-on, and to come to terms with what we will do in response to the restrictions lupus places on our life.

Admitting you have limits

Limits with Lupus

The first place to start is by admitting to yourself that you have limits.  I don’t like having to admit I cannot do all the things that I want to do.  I really dislike having to say no to activities everyone else is doing but I am faced with the reality that I have different needs and limits.  I have a budget of energy and strength, and have to spend it wisely.  When the account gets overdrawn, and when I become overcome with bone-tired fatigue, a lupus flare is not far off.  It is important that I accept the fact that Lupus puts a very definite strain and burden on me mentally, physically and emotionally.

Where to draw the big red line?

The Big Red Line

A good next step is to prioritize the things I feel like I need to do.  This is important, so that I am prepared to identify a point in the descending list of responsibilities and activities where I will draw the BIG RED LINE (BRL)  Knowing what is most important helps respond to social pressure to go and do more than I should.  It gives me  a prepared psychological and verbal script to follow when the pressures come at me to exceed my limits.

In the past couple of weeks, I had to pull out the script several times, as there were some activities “everyone” in our social circle were attending, but they were well below my BRL.  Some things may be above the BRL one week, and below it the following, because life is messy and flexibility is required! The one predictable thing about lupus is that it is unpredictable.

Communicating limits

Limits and Social Life

One of the hard things is communicating to others about the BRL, especially when others expect you to do certain things.   Just yesterday, my husband and I ran into a couple we know at Costco, and before I knew it I was explaining that we were not going to the graduation party for our mutual friends’ daughter.  I ended up explaining my BRL and how my lupus forces me to cut out things I really want to do that are important.

Our friends were assuming that we were going, too.  But, not this week, we wouldn’t be there.  If not for respecting my lupus imposed limits, I would not have missed being with our friends that evening for anything!  But, after cleaning house, shopping and handling the rest of my essential family and household responsibilities, my budget of physical resources was exhausted.  I had hit my BRL without a penny to spare.

Peace with lupus-imposed limits

But, because of lupus, there are some social realities I have to face.  There will always be people who have unfair expectations of my choices about what to do and where to go, and they unfortunately expect their priorities to be mine.  They may never understand my logic and reasons for the times I do not show up.  They might not even deserve an explanation.  Yet, when I have certainty in my plan, and manage my activities strategically, I am prepared for the social pressure encounters with these people may bring.

I can have peace with my lupus-imposed limits, and freedom from false guilt about things below my movable Big Red Line.  With all my imperfections and the frailty of human life, it is good to remember that before our Creator formed us and breathed His breath of life into us, we were just dust.  We need to remember that we are but dust, and we need to keep from rushing ourselves back into that state.

I need to remember to choose with wisdom and forethought what activities will be above the big red line, but not blame anyone else for what falls below it!  I should not do more than God has designed my imperfect frame to accomplish.  In fact, less just might be more!