Lupus Teleconference on Congitive Dysfunction and Lupus Brain Fog

Upcoming Lupus Teleconference

I would like to heartily recommend this FREE April 18, 2013 teleconference to my blog readers.  Although I will be on an airplane flying home to Arizona from the east coast on the day of the conference, I hope to be able to look it up on the Lupus Foundation web site to download the recorded version and transcript afterward.

Perhaps, I will even be flying through real clouds and fog, instead of the lupus brain fog that I experience so many mornings with my own lupus.

I urge you to register by following the link below if you would like to learn more about cognitive dysfunction and lupus brain fog, from an expert on the subject.

Sincerely,
Lupus Adventurer

Information about the seminar from the North Carolina chapter:

Lupus: Ask the Experts  is a series of live educational teleconferences and pre-recorded webcasts on a variety of topics designed to give you important information about living with lupus. Don’t miss this opportunity to learn from some of the world’s leading lupus experts from the comfort and privacy of your home. Participate in several or just the one that most interests you.Live teleconferences last one hour and are accessible via a toll-free number. Teleconferences will also be recorded and posted online. Pre-Registration is required.  Call-in/log-in information will be provided to all registrants one week before the event.

COGNITIVE DYSFUNCTION: THE LUPUS FOG

Thursday, April 18, 2013 from 7:00 PM to 8:00 PM (EDT)

Michael Parsons, PhD Cleveland Clinic

As many as half of all people with lupus describe feelings of confusion, fatigue, memory loss, and difficulty expressing their thoughts. This collection of symptoms is termed cognitive dysfunction. Learn more about “lupus fog”, its symptoms and treatment options.  Register by Thursday, April 11th.  Click Here to Register

https://www.facebook.com/LupusNC

This Ask The Experts series is offered as a free service of the Lupus Foundation of America, North Carolina Chapter.  All costs of services for patients and families are underwritten by the fundraising efforts of the North Carolina Chapter, including the Walk to End Lupus Now™. The Lupus Foundation of America, North Carolina Chapter is proud to be a source of information about lupus.  Our comments are based on professional advice, published experience and expert opinion, but do not represent individual therapeutic recommendation or prescription.  For specific information and advice, please consult your physician.

Lupus Fatigue and Finding a Fighting Spirit

A tidal wave of lupus fatigue.

As I stand barefoot on my cold, wet beach and watch the receding tidal wave of lupus fatigue ebb away from my shore, I see surrounding me the vast lifestyle devastation the overwhelming flood of tiredness left in its wake.  Mayhem is everywhere.  Laundry sits unfolded, dust accumulated, real and junk mail sit in an unsorted stack overflowing my desk, and my rugs and floors are looking pretty sorry indeed! All around is a general sense of disordered clutter and mishap.

While seeking a means to withstand the exhaustion and bone-tired feelings, all my work seemed half-abandoned at home and at the office.  I spent many days sleeping until noon, some days telecommuting, some days lounging in pajamas all day, a few days going in for half-days, but braved only a couple of full in-the-office work days.  The siege of fatigue waters have left an unkempt landscape about me as my physical weariness finally begins to recede.

Domestic and professional
disorder after a flare

Once again, I begin to pick up the scattered domestic and professional pieces of my normal life following a lupus flare.

Although this flare has been quite disabling and my lupus arthritis was very aggravated, I am thankful that neither my central nervous system lupus nor neuropathy flared.  Through the last couple of weeks, these often clear manifestations of my lupus have remained unusually quiet, and for this I am grateful.  At least, this was not an all out every system lupus attack, it was merely physical and not mental.  The only predictable thing about lupus is its unpredictability.

Hope and snow yesterday!

I had hope yesterday and even more this morning that my two-week flare of lupus fatigue is finally ending.

Yesterday brought a massive real weather storm to Arizona, and parts of the Phoenix valley saw snow, sleet and hail – a rare phenomenon in our desert city!  I stood on the second floor balcony at work with co-workers, as we held our hands out to catch and look at the soft white substance that melted on our hands and accumulated on ground below.  My son-in-law, a native Phoenician, regaled us last night with a report of his first experience driving in snow.

Although we had heavy rain and icy forms of precipitation all day long, I was feeling measurably better and was able to work a full day at the office.  My joints were still very sore, but my spirits and energy were on the rise.

Birds, singing in the rain!

This morning, as I hear the birds singing outside my window, I feel a little like joining them.  Perhaps a couple of the areas of disorder that are now beginning to bother me will get tackled this morning. Earlier this morning, I stood outside in the 48 degree morning chatting with husband while his rain-soaked car warmed its engine and dripped into the puddles on our driveway. The cool, moist morning air felt refreshing today instead of wearying.

With near exuberance I heard myself proclaim, “I feel almost like myself again.”

We will rejoice and be glad

Indeed, every storm has an ending, and today, I have once again found my fighting spirit!

I am just now reminded of the scriptural words I sang to a simple hymn I played yesterday morning at the piano.  “This is the day that the Lord has made, we will rejoice and be glad in it,” Psalm 118:24.

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, sick days and alphabet soup

White sandy beaches in my dreams

I consider myself very blessed as I approach what will likely be my last few years of a long career working in government law.  My public employer has a generous benefit leave program that rewards long time employees with more annual vacation than new hires. While it might sound appealing to use mine for month-long vacations in the Bahamas, swimming and sunbathing on white sandy beaches, I don’t.  Too much sun and ultraviolet exposure would surely send me into a whopping lupus flare!  Like most Lupus patients, I need to use my leave time for more than recreation.

The alphabet soup of sick leave

Alphabet soup of sick leave

My total annual leave time is a generous 49 days, including vacation days, personal days, and sick days, plus legal holidays.  Usually, about half my vacation days are spent as originally intended on recreation, but the rest has to bolster my sick leave account when it gets overdrawn.  A critical part of requesting an effective ?Americans with Disabilities Act (ADA) covered accommodation for Lupus or another similar chronic health problem is obtaining approval to use vacation leave instead of sick leave when the sick leave is exhausted.  Additionally, the ADA and the Family Medical Leave Act (FMLA) together give employees with disabilities or other serious health conditions many important protections from negative employment actions due to covered absences from the workplace.

I am thankful that my employer’s disability-friendly leave policy permits Fair Labor Standard Act (FLSA) exempt salaried employees to use leave in half-day increments, in comparison to FLSA covered employees who are paid hourly wages and use leave in hourly or lesser increments.  Most traditional workplace leave policies require salaried personal to use leave time in whole day increments.  This policy is helpful for employees with chronic health challenges, especially when they only need partial days off work to for doctor appointments or on days when their illness forces them to work a partial day.

What’s causing the need for extra sick leave?

I use up most of my sick leave in half-day increments due to the nature of my Lupus.  All auto-immune diseases tend to have more severe symptoms in the early hours of the day.  This is partly due to how auto-immunity works and the body’s metabolic activities during sleep.

Apoptosis Programmed Cell Death

Every person undergoes an ongoing process of old cells in their body dying and new cells being formed to replace them.  In a healthy person, their cells live out their normal life span.  For example, some cells in the blood live only a few hours, digestive system cells live a few days, skin cells live a few weeks, red blood cells live several months and brain cells live all the years of a person’s life.

In the case of Lupus, damage to a patient’s body cells is aggressive as it over-actively attacks connective tissue cells, destroying them at an above normal rate while the patient sleeps.  The aftermath of this faster than normal cellular death (apoptosis) clogs up the body’s tissues, systems and organs with cellular debris (the biological building blocks of the destroyed cells.)  It takes a body time to unclog the brain, organs, fluids and tissues.

The result in the meantime is inflammation and impaired function of involved body parts.  For me, that means joint swelling, pain and stiffness, mild to significant cognitive impairment and overall malaise, ache and discomfort.

Much of my sick time off work due to lupus is usually because of days when I wake up feeling somewhere in the range of  “just plain yucky”, “really rocky” to “completely indisposed.”  (One of my doctors with a great sense of humor likes to kid me when I use the word “yucky” that it is such a highly specialized “medical” word!)

Symptoms are most active in the morning

Lupus symptoms are almost always more active in the morning hours, but tend to quiet down more with each hour that passes. On especially bad mornings, I try to only take a half-day off sick in the morning, and try go to work for at least the afternoons when possible.

With my lupus symptoms, even in times of severest flare, often only the morning is unbearable, and by afternoon my symptoms let up.  On bad days when I finally feel tolerable by noon, I can recover at least part of my work day.   My bosses like the fact that I still show up most bad days, and can deal with the business that most needs attention, especially during periods when I am having increased lupus problems for days or weeks at a time.  Sometimes, I also am able to telecommute on afternoons when my morning lupus symptoms are more severe or take longer to let up.

Other uses of sick leave because of lupus

Other uses of sick leave

A healthy (no pun intended) part of my sick leave and vacation time is spent going to and from various medical appointments.  On many half sick days I visit a host of doctors, labs, radiology offices and the hospital cancer treatment center where I receive my monthly Benlysta infusions.

I spend many days each year in my family practice doctor’s office, as well as visiting my rheumatologist, chiropractor, dentist, gastroenterologist, dermatologist, podiatrist, and orthopedist. If my neuropathy keeps progressing, I may have to add a neurologist to the group.  Thankfully, I am NOT one of the 50% of lupus patients who have kidney involvement, so there is no nephrologist on my list!

I also use a few days off each year to rest up after major life events or after vacation or business travel, to try to prevent flares of my lupus.  I try to plan these rest days strategically to allow that extra “recovery day” to sleep in, take naps and get rest and repair time before returning to my regular work duties and schedule.  Also, I telecommute one day each week and have the opportunity to work from home once in a while on other days during times I am in flare or am housebound on “indisposed” days.  This has proven to help bolster my overall health and resistance and proactively help prevent fatigue and lupus problems.

Asserting rights under available job protection laws

Asserting ADA and FMLA protections

It is extremely important for any lupus patient in the U.S. with career threatening symptoms to assert their legal right to the protections available under the ADA and FMLA.  Proactive communication at work and with the doctor, and an interactive dialog may help the employee and employer agree on a reasonable accommodation for the employee’s disability under ADA.  With proper notice, the FMLA can protect against job loss due to extended or intermittent absence due to a serious health condition.

When I was first diagnosed with lupus in the early 1990s, not long after the passage of the ADA, one of my closest professional peers strongly admonished me to keep my diagnosis a secret at work.  She sternly warned me that she feared my job would be in jeopardy if my employer ever learned I had lupus.  I am glad to say I did not follow my dear friend’s advice.  I went ahead and told my bosses about my lupus diagnosis, and they have supported me with kindness and great understanding.  In turn, I have been a very loyal and productive employee.

I am glad to say that after 22 years in the same job I held when I was diagnosed with lupus, my employer has followed the spirit and the letter of the ADA and FMLA laws.  This is one of the things I regularly thank my employer and God for, realizing that not everyone’s lupus and career have this type of positive outcome.  I am grateful, but mindful of the many with lupus and other chronic illnesses who unfortunately, don’t have the same story to tell.

Lupus neuropathy on the way to breakfast

Breakfast Feast

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

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

Blame the dog?

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

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

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

Soothing sound of waves

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

Calming sound of rain

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

Rested enough to enjoy breakfast

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

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

Lupus 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 rants, ridiculous recommendations, and real reasons to exercise

No miracle secret lupus cures!

I recently read a spirited rant from another lupus blogger about all the mindless things people say and suggest to lupus patients, such as suggesting that enough exercise will “cure” lupus. There is no secret cure for lupus! Yet, many well-meaning people persist in propagating myths about supposed miracle cures.  While some patients do go into full and lasting remission, they still have lupus, able to flare and become active again, without notice or clear cause.

Lupus still remains unpredictable and incurable.  Perhaps some day that will change, but for now, that is still the truth about lupus.

News Headlines

If a real lupus cure were suddenly discovered, it would be sensational news!

We would read about it on the front cover of Lupus Now, Arthritis Today, JAMA, Newsweek, U.S. News & World Report, CNN and Fox News, and the good news about it would go viral on the Internet.

The leading rheumatologists and research doctors would be interviewed on national television news and as guests on major television and radio talk shows.

The doctor who finds a cure…

The doctor who finds a cure for lupus will become a household name and might even win the Nobel Peace Prize in Medicine.

A real lupus cure would not stay a secret for long!

Reading the other blogger’s rant made me think about exercise, and some of the reasons I do it.  Although a moderate amount of careful exercise benefits lupus patients, it certainly is no cure! However, the right kind and amount can help a lupus patient be a healthier and stronger, and that is a great thing.  I feel better when I exercise, like anyone else with lupus or without it would.  Exercise is always an important part of a healthy lifestyle for any person, including lupus patients.

Exercise is of some profit

A lupus patient needs to be careful not to overdo exercise beyond the level safe for the current state of their medical condition.  Sore, painful joints and inflammation are red flags to take it easy, or to postpone exercise if  symptoms are flaring too much.  Then, when the lupus flare subsides, the exercise can resume or go back to normal levels.

It seems harder to accept a suggestion to exercise from someone who doesn’t have lupus or a similar auto-immune illness. It is easier to accept the recommendation if the advice come from another lupus patient who actually exercises.   Another patient can tell me how exercise it helps them.  Another lupus patient can understand why it is so hard for me to want to think about exercising if every joint hurts.  They also know why when the thought of moving seems like it will take herculean effort, how lupus joint pain and fatigue are counter-intuitive to the idea of movement and exercise.  It is so hard to imagine when it hurts to move, that getting up and moving more will make it hurt less.

Doctors give me reliable treatment advice

The suggestion to exercise is much harder to accept from someone else (other than my rheumatologist) who thinks they know exactly what will improve my lupus, or worse yet,  who thinks their suggestion to exercise, (take a supplement, wear some special metal jewelry, or some other thing) will actually cure my lupus.

I don’t necessarily want to hear these people’s ideas of what they think I just “need to do to get well.”  I want all my serious treatment advisers to have medical degrees!

However, there are some very important reasons why I exercise two to three times each week:

• My rheumatologist recommends it, and I respect his advice
• It will help me fight osteoporosis caused by steroids
• It strengthens my muscles and improves my circulation and tendon health
• It helps reduce my risk of heart problems that are higher in lupus patients
• It increases my oxygen exchange, strengthens my lungs and helps my asthma
• It is good for my digestion
• It strengthens my spine and reduces the frequency of chiropractor visits for three herniated cervical disks
• It also helps morning lupus brain fog clear up more quickly as increased circulation stirs up my body’s metabolism.
• It raises endorphin levels that naturally elevate my emotions/mood and reduces my perception of pain.
• It helps me fight weight gain from an increased appetite from steroids.

Exercise WILL improve how I feel!

I get my most of my exercise on an indoor cycle with a fluid trainer, and when I have access to an indoor pool, I have really enjoyed swimming.  I also do some gentle yoga exercises to improve my spine and joint health.

Even though there are plenty of people out there with some crazy ideas about how to magically cure lupus, there are some real things we can do to improve our lupus outcomes.

Exercise is something we can definitely do that may improve how we feel, at least a little.

CNS Lupus and Getting the Dates Right

Finalizing budget reports

If it were not so professionally embarrassing, it might be a bit funny. This past weekend I was working on finalizing spending estimates for the June 30th end of the fiscal year. My government legal department budget is about six million dollars, so there are a some small details that are easily overlooked. I certainly don’t have time or energy to count paper clips and post-it-notes!  But, some things are important.

This morning, I submitted a report to my boss based on my review of eleven and a half months worth of expenditures, and my estimates for final year-end numbers.  There was just one small problem.

Wrong bottom line

When I filtered the financial data from our system on the weekend before analyzing it, I missed one small detail. I had mined the financial data from our system, but I missed something really important when I set the data filter.  My boss knew immediately there was something wrong when he reviewed my conclusions.  You can imagine my chagrin after receiving a cryptic reply email from the managing lawyer, “This does not make sense. See me.”

He was gone in a meeting when I arrived, so I went to my office to double-check my work.

Back to my data confused

Confused, I went back to my data see what could be wrong or if perhaps I had misinterpreted something, and then the “tiny” problem jumped right off the page at me!  The dates in the data reports I had reviewed had dates from July 2010 through June 2011, on all 160 pages of expenditures. The problem was right there in front of me all the time I had reviewed the 160 pages of data, over 10 or more times on every page of the report.  I had over 1,600 chances looking at the dates and expenditures to notice my mistake.  The proverbial forest and tree scenario.  I had reviewed and analyzed 6 million dollars worth of entries for the wrong year!

My results of all that work were totally meaningless.

Re-worked year-end reports

I sent off an email quickly to my boss, “I am so embarrassed and know why you were confused, my filter was for last year’s numbers instead of this years.  I will correct my error and rework your reports shortly.”  He was gracious when he poked his head in my office door as I poured over the (correct) numbers reworking my year-end conclusions.  It took me all day to produce meaningful results, and we were soon able to make the right management decisions and were ready for our discussions with the finance department yesterday.  Whew!

I won’t soon forget this obvious lesson: starting with the right information is always a good idea!

Never off by a whole year before!

When cognitive function is challenged or impaired, getting confused about the date is one of the first signs of trouble, but this time I think I was just too distracted to notice an important detail.  Because of flared CNS lupus, I have been confused before by what day, week and even what month it was.

I have never been off by a whole year before! While I am not sure I can really blame this mistake all on CNS involvement of my lupus, it probably was not a good idea to mix configuring my data filters and number crunching with Saturday morning brain fog.

Finally, I got the dates right!

Timing is everything, and I missed it on all counts this time.

So, here I sit telling you about this misstep as I ponder the time wasted and spent re-doing my budget analysis.

Finally, I got the dates right!.

Lupus, stars and an invisible medication leash

gourmet pizza…

Friday afternoon while telecommuting at home, the call came from my husband inviting me to go out for dinner.  So, I logged off the work network, shut down my computer early and got ready for date night.  He picked me up a few minutes later, and we went to one of our favorite Italian spots for dinner, where we shared a wonderful gourmet pizza.  After a while, we ventured outside on its quiet patio for dessert and coffee under the stars. The moon was a bright clear crescent, and the night air cast a relaxing mood over the evening.  Lingering over the last few sips, we decided the night was too young to end and decided to go for a drive.

coffee and dessert outside…

Heading northeast out-of-town, we soon reached the outskirts of the Phoenix metropolitan area.  The night was clear and the air temperature was cool and refreshing, so we opened the moon roof on our PT Cruiser and just kept driving.  I leaned my car seat back just far enough to get a wonderful view of the stars overhead through the open roof.

Perfect night for star-gazing

Before long, we were at the junction of the Beeline Highway, and turned north toward Payson, Arizona, heading out still farther away from town.  The mountain roads were familiar from the years my husband spent growing up in the Arizona mountains north of Phoenix, so we relaxed and enjoyed our impromptu road trip.

It was a perfect night for star and moon gazing.  The air was clean and pure as we escaped the smog of the metro area, and soon my head was clear and awake from the increased oxygen and crisp fragrance of the altitude.

Drinking in the night air

We drank in the night air in deep droughts, and filled the depths of our lungs to capacity with every breath.  The air, moon and stars were refreshing and relaxing and we enjoyed an unhurried relaxed conversation.  What a nice unplanned change of pace!

An hour and a half later, we arrived in Payson and contemplated looking for a room to stay overnight.  The signs advertising a farmer’s market on Saturday morning were enticing, and an overnight in the mountains sounded like such a fun unplanned thing.  I just love waking up to the exhilarating fragrance of crisp mountain air.

Medication leash drew us home

Then, reality set in.  In our spontaneity, we did not consider packing or bringing medications. My evening doses were probably not all that earth-shattering for me to miss once, mostly long-acting drugs.  But, my husband’s evening epileptic medications were quite another thing! If he were to skip night-time medications, that would mean risking a seizure in the night or next morning, and that I would be required to drive the mountain roads home the next day.  Without morning prednisone and other lupus prescriptions, and with my morning CNS lupus symptoms, the proposition sounded too dangerous.

Maybe next time…

So, partly because of my medication needs, and because of my husband’s, our invisible medication leashes forced us to turn the car around to finish the last half of our Friday night star-gazing trip. Perhaps in the future, I will plan better for the unplanned.  It might not be a bad idea to stash a couple of morning and evening medication doses for each of us in the glove box of my car.  Then, perhaps we might be better ready to follow our next whim of small adventure, and we might loosen the hold of our invisible medication leash.

Coping with Lupus: Fact #14 – Balanced Exercise and Rest Maintains Strength

Coping with Lupus: People with lupus are usually encouraged to engage in appropriate daily exercise to keep up muscle and bone strength.  Exercise is not intuitive for those with auto-immune health challenges like lupus, rheumatoid arthritis or fibromyalgia.  Waking up each morning with joint stiffness and pain, the first thought on my mind is definitely NOT exercise!

My natural inclination is a long hot tub bath or jacuzzi soak to wrap warm comfort around  aching joints, or perhaps sipping coffee in bed while waiting for analgesic and morning prednisone medications to “kick in.”

Are you kidding?

Exercise?  Are you kidding?

Yes, our doctors all tell us (and everyone without auto-immune disease, too) to exercise!  Why is the idea so repugnant to us?  Simply because we hurt!  The idea of moving and getting up to shake up painful joints is simply counter-intuitive.  We can’t imagine that when moving hurts, doing more of it will make us hurt less.  But, the truth is that moving gently and getting some mild exercise WILL help manage and relieve pain.  Trust me, believe your doctor, and if you are not getting any or enough gentle exercise, I urge you to consider starting.

With a membership in a health club, I could swim in an indoor pool — it was invigorating!  Some days, I work through some simple yoga exercises that help stimulate my deep breathing and encourage circulation in joints, tendons and cartilage using gentle controlled movement and balance — it is refreshing!  Other days, I get on my bike, with its rear wheel nestled in its indoor fluid trainer stand (a normal exercise bicycle works well, too) and spin for as few as ten or as many as 30 minutes – it is strength-building!

What about when I hurt?

What about the bad days?

On days I hurt the worst, I do just a few minutes of the simplest yoga moves or spin on the bike for no more than 10 minutes.  The goal is just to stir up a little circulation and get my joints in motion, and to stir up a little adrenaline to get me feeling like moving.  Almost always, the gentle movement results in a lowering of my perceived level of pain, and puts my body into a more energetic state.

With a little more adrenaline flowing, and a natural rise in body endorphin levels, my ability to handle the pain increases, and my perception of the pain decreases.  It’s just the biology of movement, nothing more.  This is the effect of exercise that is so counter-intuitive to the pain.  You don’t naturally think it will happen when you feel like stilling still, because every motion of your joints hurts.

Balance exercise and rest!

Balancing exercise and rest – remember moderation!

Take care to balance exercise with rest or when you hurt.  Our doctors rightly tell us not to overdo, or to move in ways that cause more pain.  The right amount of exercise, done with moderation and restraint, should help the pain decrease almost immediately when you start moving.  Increasing pain means it is time to stop the exercise.  Caution to take things slowly is always first when thinking about exercise.

It may take a while to build up to enough exercise to get an aerobic effect.  For me, the pain drastically reduces when I reach the aerobic point in my routine.  My breathing deepens, my strength suddenly increases and my pain reduces.  I first learned to find the aerobic point when I went through physical therapy for a damaged shoulder and rotator cuff.

Approaching and crossing aerobic point

Magic of crossing the aerobic point

The therapists used computerized equipment that measured the movements and changes in my strength levels during the routines.  They would point out the moment when the computer registered the rise in my strength, and I could associate it as a point when I experienced a drop in pain.  The bursts of strength would occur several times during the therapy routines, and each time I would feel a little stronger and move more easily.

I sense a response similar to the physical therapy with gentle sustained exercise.  My first sense of the change is usually about 12 to 17 minutes into my cycling.  After that, I feel like going a little faster, and immediately feel a little more energetic.  I usually try to cycle long enough to reach that first point, and push beyond it a little.

Just do it!

Building up, slowly

If I am having a string of days or weeks of quieter lupus, I can build up to about 30 minutes of exercise, never adding more than a minute each day.  Some days, if I am hurting a lot, I slowly cycle for only about 5 – 10 minutes, never pushing speed to a point where pain rises.  Even moving very slowly helps a little!  I cannot remember a time when I didn’t feel at least slightly better after exercise than I did before it.

Try it.  Really!