Lupus Adventurer in Conference and Classroom

A month of education!

It is hard to believe that it has been a few weeks since I have had a minute to sit down to write!  It seems that April was filled with nothing but classrooms, conferences and training sessions.  I have been an attendee, performer, and instructor all in a short one-month time keeping very, very busy.  My educational adventures are not quite complete, but this has truly been a month full of learning.

LA (left) sings duet with friend

Early in April I had the pleasure of attending a statewide women’s Bible conference hosted annually by my church.  I shared the privilege of singing a duet at one of the sessions with one of my best friends.  The music went well, and the weekend was one of spiritual recharge, excellent bible teaching, good music and warm fellowship.  I saw many old friends, and made a few new ones before getting ready to leave Arizona for the east coast.

Flying out to Maryland

Next, I flew out to Maryland for a week-long professional legal management conference, and during off hours enjoyed some fresh salmon dinners and sailboat watching on the shores of the Potomac.  In my hotel room I worked on a PowerPoint presentation I would be using the following week back in Arizona.

Returning to work the following Monday, I jumped right into my role as teacher.  Enlisted by the Human Resources and Safety Offices to teach a two-week series of classes, as part of my government employer’s Safety Training Week, my education-filled month continues!

Teaching Ergonomics Class

Every morning this past week (and all of next) is taken up teaching classes to my fellow employees about Ergonomics and Back/Lifting Safety.  I have enjoyed getting to know co-workers better, and found interaction with the class members very enjoyable.  With the help of my assistant, it has proven to be a bit more fun than work, and I am grateful to share some information that can help prevent co-workers’ injury!  I am looking forward to the remaining classes next week.

As part of our safety training week, I also attended a class on CPR, and learned the new “no breathing” method of cardiac chest compression.  I was pleasantly surprised to learn that, even with my joint and lupus arthritis challenges, I was able to do this type of CPR.  I had always been afraid I would not hold up long enough to do anyone any good in an emergency.  I learned that using my body weight to make the compressions, and not my not-so-strong muscles, I could potentially save someone’s life without wearing myself out before paramedics could arrive.  Click here, to read more about this easy to learn CPR method.

Dr. Amy H. Kao, Director of Biomedical Informatics at Lupus Center of Excellence at WPAHS

This simple live-saving CPR would be a good thing for lupus patients, their friends and family (perhaps anyone) to learn.  To find out more about lupus and the heart, check out this 2009 Lupus Foundation of America educational web chat with one of the nation’s leading lupus and cardiology researchers, Dr. Amy H. Kao, M.D., Cardiovascular Health and Lupus.

Dr. Kao explains that, “young women with lupus have as high as 50-fold increased risk of having a heart attack compared to healthy women of similar age.”

Perhaps, after considering all my educational activities, the new CPR method was the most important.

Let’s hope I never have to find out!

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.

Clue Game? by lupus, in the kitchen, with the candlestick

Lupus, the cruel mystery!
Photo Credit:
http://en.wikipedia.org/wiki/Clue_%28film%29

This winter the Lupus Foundation of America released their new slogan and lupus awareness campaign, promoting the idea of lupus being a cruel mystery.  Well, it can indeed be a mystery, both personally and medically.

So, here I sit with my own little midnight mystery game of Clue.  As in the well-known board game, my mystery would be solved by assembling the correct three clues.  Here are tonight’s three clues:

Clue # 1 – It was Lupus

Clue 1 – by Lupus

Having gone to bed with the dog at our feet, all snuggled in for the proverbial long winter’s nap, I’d thought I had successfully closed my eyes until morning.  Then, after dozing off in reasonable comfort, I expected to be drifting in dreams until dawn.  Then, mysteriously, slumber was interrupted and I was wide awake.  My legs hurt in the pain of the darkness, and my bones were unsettled by gnawing aches.  Why was my beauty rest cut short?  Why was I being so cruelly deprived of blissful slumber?  Who was responsible for this crime?  The first clue and answer, it was done “by lupus.”

Clue # 2 – In the Kitchen

Clue 2 – in the kitchen

So, where do I find myself trying to find an answer?  First I walk down the hall away from my bedroom.  I walk over to a countertop where my weekly morning and evening medication strips are setting out.  Picking up the blue one labeled “PM,” I confirmed I had indeed taken my bedtime medications.  The compartment for that evening’s doses was empty. This confirmed my first clue was correct.  I was awake because of lupus and not due to my own forgetfulness.

I walked across the room to the cabinet containing a basket holding all my medication bottles.  I opened the bottle of acetaminophen and tucked two into the pocket of my robe.  After making a warm cup of decaf coffee, I sat down to take the pills out of my pocket and take them with a sip.  So, to what room had I wandered in search of an answer to my middle of the night discomfort?  The second clue and answer was that I was now “in the kitchen.”

Clue # 3 – with the Candlestick

Clue 3 – with the candlestick

The room was completely dark except for the gentle glow emitting all over the surface in front of me.  I sat there, waiting on the relief the analgesic medication would bring as I set out to describe this short chapter in my ongoing lupus mystery. The words flowed, one line after the other, as the keys beneath my fingers gently clicked with a quiet uneven tapping sound.  My pain lessened with the swift passing of a mere quarter-hour.  In the faint light cast before me, the tops of my hands were softly illuminated as they typed in the darkened room.

What was the source of the feeble rays shining around my lightened circle?  My small computer, emitting its back-light from the screen before me had brightened the night in the small area where I sat.  It cast no more light than a single flame, and it had become a modern-day counterpart to the mobile light source carried from room to room in the classic Clue game.  The third clue and answer was that I sat there awakened by lupus, in the kitchen,  ”with the candlestick.”

(Okay, I know this is a bit of a stretch, but just I could not figure out a good way to work any of the other Clue weapons into my analogy.)

Mystery, solved!

Mystery solved!

So, a small chapter of my lupus mystery was solved for the time being. Although I had lost a good part of an hour’s sleep, I was ready to reclaim the remainder of the night’s promise of rest.  My solution was complete as the medication took effect.  I was grateful that I did not have to reach for stronger medications, and that the acetaminophen was enough this time.

In the brief minutes it took to find my three clues and draft my somewhat silly narration, my pain had lifted and I went back to bed, again.

Closing the “candlestick”?

I chuckled to myself, as I headed back down the hall, still pondering the “Clue” game I had just played, as a humorous distraction from my sleep-interrupting lupus pain.  So, we have deduced that it was indeed Lupus, in the kitchen, with the candlestick.  My simple contrivance of a “who-done-it” mystery was solved to my own pathetically amused satisfaction.

Closing my computer, my narrative ends and my resumed sleep now can again begin.

Good night!

Lupus, tendons and the happy sometimes pedestrian

Shopping in shoes that hurt

There is nothing more difficult to bear than walking in shoes that make your feet hurt.  When lupus focuses on the tendons in my feet and ankles, my ankles swell and it seems no pair of shoes is comfortable.  Usually, I have worn my high quality sneakers to go shopping.  Lately, I have worn them to work with slacks to baby my swollen tendons.  However, on Saturday, my sneakers were soaked in a deep puddle during the morning’s drenching rain storm.

Sneakers soaked in a deep puddle!
Photo credit:
http://theshoegame.com/articles
/nike-air-flightposite-photography.html

Even in Arizona, we have very cold weather in January and February, and with several days in a row of non-stop rain, it was too cold to wear wet sneakers on a shopping trip.  I slipped my prescription orthotics into a pair of reasonably comfy flats, and set out shopping on Saturday.  What a mistake!

Let me back track a little and explain.

I had put off shopping for a family member’s birthday as long as possible because of the inflammation in my joints for the past couple of weeks.  Now, my time was gone to buy some other gifts I also needed, so Saturday was my last available chance to shop for them.

Gift Shopping on Sore Feet

Before I was finished shopping at the first store, my feet were hurting and the back top edge of my shoes was riding too low on my heel because of the orthotics.  The shoe back was pressing into the back of my aching Achilles tendons, and very soon I could hardly take another step.  My feet were not going to last the afternoon without some serious intervention!

As soon as possible, I finished up quickly at the first store and then hobbled to my car to drive to the nearest Kohl’s department store.  I had only one mission in mind to do first – I would buy some new, comfortable shoes before destroying my tendons in what I was wearing.  I was determined that giving up on the shopping trip was just not an option! I thought, maybe I could also find something that looked better than sneakers to wear to work on lupus flare days.

Let me give a little more background.

Lupus Patient who shredded
her Achilles tendons

I know a lupus patient who shredded her inflamed and swollen Achilles tendons when she was in lupus flare several years ago.  Now, she is wheelchair bound without hope of repair for her ruined tendons.  Then, a few years ago I shredded one of my own Plantaris tendons where it branched off the Achilles tendon in my right calf.  At the time, I had been in a lupus flare and was performing some mildly athletic activity.  Unfortunately, I forgot to consider the risk of tendon injury during flare.  Then a couple of years ago, I came within a few steps of shredding the tendons in my heel while walking back and forth between the hotel and events at a legal conference in Boston.

Therefore, now, I am very, very careful when my tendons are swollen or sore.

Achilles tendon injury
Photo Credit:
http://www.scripps.org/articles/
3372-achilles-tendinitis

By the way, shredding an Achilles or Plantaris tendon is suddenly and excruciatingly painful.  While my torn Plantaris tendon hurt a great deal and grounded me for a couple of days, I understand that an Achilles tendon is much, much worse.  When the Achilles rips, it has been said to feel like a gun shot in the calf.  Plantaris tendons are optional, but Achilles tendons are essential when it comes to walking.  Since I like being able to walk, I really like the idea of keeping my remaining leg tendons as healthy and whole as possible.

Ultra-light, comfy and supportive

So, my Saturday shopping goal was achieved before the afternoon was over.  First, I found the new pair of shoes that helped me finish the rest of my procurement mission.  I found a pair of Sketchers Go Walk slip on shoes that are now my new favorites.  They were a little more pricey than I would have liked, but are light as a feather, and are amazingly comfortable and supportive.

I have even worn them to work for the past two days.  I think they have contributed to the improvement and healing of my sore foot and ankle tendons, because tonight, my feet and legs are much less painful.

Walking today with little pain

Today, I walked between buildings across the campus of my workplace without hurting my feet and ankles, and was even able to keep up with my associate as we crossed the plaza. For the past three days, my feet have been better than they were at the beginning of my Saturday afternoon shopping expedition, or for that matter, at any time in the past two to three weeks.  What a relief!

Tonight, I sit here as a much more comfortable and happy sometimes pedestrian.

[Note:  The product endorsement contained in this post is unsolicited and completely uncompensated.]

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!

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 arthritis and a string of things

Arthritis and difficult activities

Some of us lupus patients and those with similar types of inflammatory arthritis find that activities of daily living are sometimes nearly an insurmountable challenge.  Sometimes, with inflammatory arthritis, just doing normal everyday activities of life becomes much more difficult than we would like!  Lupus, psoriatic, rheumatoid, gout or other auto-immune or inflammatory arthritis can affect hands, wrists, elbows, shoulders, hips, knees and feet.  The inflammation and pain can impair normal functions, and can be very frustrating at times.

Thankful for what I can do again.

As I was driving to work this week, I pondered a list of some everyday things that lupus arthritis has affected in my personal life. Somewhat recently, I after ten years off of the NSAID Sulindac due to remission of joint inflammation, I started taking it again.  I was greatly relieved that, when added to my other lupus medications (Benlysta, plaquenil, prednisone) the resumed prescription NSAID relieved most of my arthritis symptoms.  The severity of increasingly painful and disabling arthritis in my hands was greatly reduced.

I have the use of my hands back!  I was thankful as I thought about these simple daily activities that I can do again or at least do better.  Just a couple of months ago these activities were at times excruciating and nearly impossible:

Mornings

holding a hair dryer
clipping fingernails
buttoning clothes
putting on pantyhose
buckling shoes
fastening a necklace or bracelet clasp
opening pill bottles
sealing a zippered sandwich bag
pulling the foil seal off a coffee creamer bottle
opening my favorite thermal Starbucks mug

Out and About and at Work

opening a car door
opening binder rings
using a stapler
opening a new bottle of soda
opening a plastic packet of Taco Bell sauce
carrying a shopping bag
walking through a shopping mall
climbing a flight of stairs
putting a case of soda into a shopping cart
pulling credit cards out of a wallet
opening plastic merchandise packages

Evenings

turning the key in a stiff lock
cutting uncooked meat with a knife
turning on appliance switches
opening a soda can or bottle
turning the knob on my can opener
holding a heavy skillet
stirring stiff cookie dough
pushing down the faucet sprayer button
taking off boots
scrubbing dishes

Weekends or Anytime (some of these I still can’t do)

turning socks right-side out
doing the laundry
changing bed sheets
moping a floor
pulling weeds and grass in the garden
walking up stairs
washing my car
playing my violin

Vacations (these are still on the “no” list)

Walking through amusement parks in the daytime
Roller coasters
Canoeing (part of my past)
Hiking

My choice how to respond

When each of these actions is difficult and painful to do through out my day,  I have a choice how I will respond to the frustration and difficulty of the moment.

Can I make the pain go away in that moment?  No.

Can I by wishing it so, make my joints strong and healthy again?  No way.

Can I make my lupus go into remission, or better yet go away?  Certainly not!

However, I can adjust and do things in new ways, slow down, pace myself, and at times humble myself to ask others to help me with what I cannot do myself.

Sliver of light of God’s wisdom

I resolve to not let this minor string of daily inconveniences steal my joy!  Perhaps, if I can just borrow a sliver of the light of God’s wisdom, I can then see reasons to thank Him for these present difficulties.  Out of the little struggles of day-to-day life such as these, our character is formed.

Perhaps, a new list of things that I can still do, despite my lupus, could be prime mental fodder for my next commute.

Lupus fatigue and catching a cat… nap

 

Bone-tired lupus fatigue

Deep bone-tired fatigue is one of the ongoing challenges of Lupus, and coping with it sometimes requires a couple of simple, old-fashioned approaches. First, one the best things to combat fatigue is adequate sleep, and a second tactic is to catch a cat nap in the middle of the day. While this sounds simple and logical, moving these two approaches from goal to reality is sometimes more of a challenge than I expected!

Chasing Mr. Sandman

Chasing Mr. Sandman

Lack of adequate sleep is a major obstacle for many lupus patients, and I am no exception. Sometimes the pain from a throbbing lupus headache, intensely sore joints and ligaments, or deep bone ache in arms and legs can prevent my success falling asleep, or can suddenly wake me in the middle of the night.

My sleep is most commonly interrupted by either peripheral neuropathy or deep increasing limb pain, accompanied by growing malaise that breaks through all the levels of sleep to wake me. This type of untimely alarm often cuts my sleep in half and contributes over several days to accumulated sleep deprivation, a major cause of my fatigue.

I have a few readily available sleep strategies to deploy against lupus pain:

1. Prayer on my pillow, asking God to help me rest and sleep, and focusing on worship to take my mind off myself and my pain, seeking peace that only God can give. Sometimes I can successfully slip back into sleep while praying.

2. Taking over-the-counter analgesics such as Tylenol to cut the pain enough to permit sleep, sometimes effective but often not enough to do the job.

3. Increasing natural levels of L-tryptophan by combining warm milk and honey with decaf tea as a middle of the night latte.

4. Exercising with midnight yoga or stationary cycle to increase circulation and alter my metabolism. Exercise can help interrupt pain and raise endorphin levels to naturally reduce the perception of pain. Although exercise may make it hard to get back to sleep, it can help interrupt or greatly reduce my pain.

5. Taking a hot bath or shower to relax and lower the pain perception sometimes helps.  Warm water can be a soothing comfort, and is especially effective at lifting overwhelming malaise while partially relieving pain. Sometimes, I can even fall asleep in a bath. If I set a timer I can keep from waking up a couple of hours later in a cold tub of water. Often, a warm bath gives enough pain relief to allow me to relax and slip back between the sheets for a little more sleep.

Sleep techniques for lupus pain

6. Taking stronger pain medications or narcotics will usually overpower the pain and allow sleep.  Strong pain killers are a bad idea when there is inadequate time for the medications to wear off before I have to leave in the morning. Driving with drug induced (or any known cause of) mental impairment could be a dangerous crime!

I have not yet asked my doctor for sleep aid medications, but may soon. Nonetheless, usually, one of the approaches above helps address my great need for sleep.

Catching the Cat… Nap

Catching the Cat Nap

When fatigue is overwhelming, and lasts for days or weeks at a stretch, another simple approach to get more sleep is to catch a cat nap in to middle of the day. Cat naps can make a huge deposit into my sleep account and cut the size of my overall sleep deficit. The sleep experts explain that it takes much less time to correct a sleep deficit than it does to acquire sleep deprivation. A few days of adequate rest in a row can completely erase a long-standing sleep deficit.

Usually, the only days I can steal time for a cat naps are Saturdays and Sundays, or days I stay home sick or telecommute. It is often hard to chisel out the time to cat nap. On days when I am home spending precious time with family, taking time out to sleep in the middle of the day can seem like an intrusion into quality time with loved ones. I am grateful that my husband is often the one who first observes and identifies my extreme fatigue, and encourages me to get strategic cat naps. He constantly encourages me to get enough sleep.

Getting enough sleep can greatly contribute to my overall health with lupus. A tired body is less effective modulating immune responses, and is more susceptible to the effects of lupus. Sufficient rest can provide greater strength to face the adventures and daily challenges of lupus.

I think I’ll go catch some Z’s!

 

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!