One Patient's Positive Perspectives

Posts tagged ‘Connective tissue’

Lupus Adventures, good news, a bonus and the rest of the story

puddle on wood floor

Slip, sliding away…

No one wants to fall, but by far the hard part of the fall is not the falling itself, it’s what comes afterward.  A few months ago, I slipped on a wet spot on my wood living room floor.  Gyrating off-balance around my hip, I felt so much strain in my hip-joint going down, that long before I hit the floor in a jumbled heap, I expected my hip would be broken.

The good news after the spill was that my expectation while falling was wrong.  The x-rays and doctor exam confirmed there were no broken bones.  There was no sign of fractures.  I was grateful, but very sore with a bad strain from waist to knee wrapping around and through my left hip and thigh.

hip bone image

The bonus? Good bones!

The bonus?  The x-rays, and later MRIs revealed that my bone density was great, with no sign of osteoporosis.  Even after a couple of decades of low dose steroids for my lupus, my bones looked absolutely great.

The rest of the story, however took a little longer to figure out.

dryer sheet on floor

Evil dryer sheet!

About a week after the fall, I went sliding “banana peel” style on a dryer sheet doing laundry.  My sore leg stretched forward into an awkward, excruciating “splits,” leaving me writhing on the floor and seeing proverbial “stars.”  To the same degree that the first fall hurt, the second was pure torture as I grimaced in the abuse of pain on pain.

A few weeks went by and I was feeling a lot better, and started to think about resuming a little gentle yoga , and even started suiting up to begin cycling again.  Five minutes seemed like a gentle start with the bike in first gear.  By the end of a few minutes of cycling, it was obvious my hip was still not ready for exercise.

bathroom scale

Gaining 1/2 pound weekly!

My disappointment grew as I gained about a pound every couple of weeks, but waited it out a few more weeks before trying the cycle again.  The next attempt was no better, and perhaps even worse than the first.  Cycling hurt too much to repeat the next day.  Weeks were turning into months, and my body was getting softer and wider by the day.

A few weeks ago, I had the dreaded “I’m not exercising” conversation with my rheumatologist.  He was anything but thrilled about my sedentary change, and wanted to know why.  After explaining about the fall that happened right after my last visit, he quickly had me up on the examining table to complete a clinical exam of my hurting hip.

Clinical hip exam

Clinical hip exam

As he asked me questions and moved my legs around, he explained to a young resident shadowing him that when most people complaint about hip pain, it is not really the hip itself that is hurting.  He spoke to him about how most people describing hip pain actually were experiencing discomfort in soft tissue, tendons, muscles, etc.

By the time he completed the hip checkup, he marveled out-loud to both of us about my “true hip pain.”  He seemed surprised.  He explained I needed an MRI to show if there were hidden fractures or soft tissue damage that could not be visible in the x-rays.  If not broken or fractured, he was considering physical therapy to get my hip back in shape.

Immediately, I set out to get the MRI and a new bone density check completed.

Next chapter... orthopedic surgeon

Next chapter… orthopedic surgeon

In the middle of a meeting at work today, my cell phone rang and it was my doctor, himself.

He never calls me out of the blue, usually it is his assistant. So, making quick apologies to my colleague, I excused myself to take the call.  After a little polite conversation my doctor explained that my hip bones looked very good.  There were no fractures.

Next, was the rest of the story, and not the chapter ending either of us were anticipating when we turned the MRI page. My doctor explained the reason for my pain is torn cartilage and cartilage loss in my hip.

More chapters ahead

The next chapter will start with a visit to an orthopedic surgeon for assessment, and possible therapy and/or arthroscopic hip surgery.

Jotting down the names of a couple of doctors my rheumatologist recommended, I spent a few minutes after work chasing them down and confirming both were on my insurance plan.

Tomorrow, my doctor’s first choice referral will get my call.

I have a feeling there will be a couple of more interesting chapters in this lupus adventure – it should be a “hip” story.

Lupus Adventures – 2 kids, 2 years and 12 days

Mile Marker 2 with bfMajor milestones of life and stressful life events sometimes come in pairs: in and out, beginning and ending, firing and hiring,  full and empty.  Lupus milestones come in pairs, too:  flare and remission, energy and fatigue, awake and asleep, comfort and pain.

Just over two years ago a major life event and lupus milestone both started.   With life and lupus the contrasts help make up the landscape of our lives.  So, too, the events beginning two years ago affected my health and my family greatly.

Two years and two months ago, I began receiving Benlysta infusions and started a major period of quiescence of my lupus.

My health has steadily improved, although some aspects of lupus continue tenaciously.  The previously extremely disruptive CNS lupus symptoms are very quiet.  Yet, my neuropathy and related nighttime nerve pain are slowly and steadily increasing, despite the help I have received from gabepentin and tramadol medications.

Then, shortly after the beginning of Benlysta treatments, a major life event occurred.

layoff pink slipOur daughter and son-in-law moved in with us.  His employment by a major national corporation was over after 14 years, and in the wake of the recession, his position was dissolved nationwide. He received a long notice before the layoff, and despite a generous severance package, the not quite newlyweds quickly learned that one income was insufficient.

Thankfully, our daughter was able to keep her job as a public school music teacher through threats of possible layoffs and local government budget cuts.  But, it was almost a year before her husband found a new job in his field at half of his earlier salary.  The new job was still a great find in his career in the new post-recession economy.  It took them the second year to re-position themselves financially for moving back out on their own.

Empty Nest Photo by Kenneth Allen from

Empty Nest
Photo by Kenneth Allen

So, last week, after two years and twelve days, the kids moved out and have their own place.  Along the way there was a little more stress, and a little more getting to know our son-in-law better.  A few good times and conversations to remember and cherish that might not otherwise have happened.

So, our family saw a new ending, and a new beginning.

An empty nest — again, and the beginning of dinners for two — again.

Lupus, Cipro and Tendon TLC

cipro tablets

Cipro 500 mg Tablets

During my recent hospitalization for a severe urinary infection, the intravenous antibiotic that was administered for two days was Cipro (ciprofloxacin), followed by ten more days of tablets.  While writing the prescription for me to take home, the doctor sat down to talk with me in the hospital room.  She cautioned me strongly about my increased risks as a lupus patient for suffering spontaneous tendon ruptures while continuing this necessary medication.

We discussed my past tendon ruptures, other past tendon injuries, and currently inflamed tendons.  She recommended I refrain for a while from any undue repetitive tendon exertion.  She explained that my ongoing steroid medications also increased my risk for tendon injury during and after taking this antibiotic.


Typical Site of Achilles Tendon Inflammation Before Tearing

Her cautions about my increased risks for tendon injury after taking Cipro included these factors:

  • Tendon rupture can happen within days or even months after taking the antibiotic
  • Steroids increase the risk
  • Exercise increases the risk
  • Autoimmune disease increases the risk
  • Achilles tendon is the most often ruptured after Cipro

However, this antibiotic was the best for beating the infection, so it was worth the risk.  Since, I have noticed some increased bilateral pain in my thumb tendons and Achilles tendons, along with mild inflammation.

In response, my footwear has been limited to low-heeled “sensible shoes.”   Walking distances and exercise routines have been restricted.  Exercise now is just some gentle stretching and circulation stimulating exercise.  Piano playing has been infrequent, playing softly for a few minutes.  My mornings are much more sedentary and quiet than before my hospital stay a couple of weeks ago.

The antibiotics are now gone, and I am waiting a while longer before slowly resuming my earlier activities. When tendon stiffness, inflammation and aching quiet down, I will cautiously and gently increase exertion.

Photo by LA's Daughter-in-Law © 2013

Researching more about
doctor’s explanation

Every lupus patient should understand the risks of Cipro before taking this or similar antibiotics.  I was interested in learning more, and pursued research about it.  I found several reliable articles in reputable medical journals that strongly supported the hospital doctor’s explanation.

The following is my “plain English translation” of some great conclusions from an article about ciprofloxacin and similar antibiotic drugs from the The Journal of the American Board of Family Medicine:

The physically damaging effects of fluoroquinolone type antibiotics (levofloxacin and similar quinolone antibiotics such as Ciprofloxacin) on tendons have been known since the 1980s. Since then, the over all number of tendon ruptures has also increased.  The most common tendon rupture from after taking these drugs involves the Achilles tendon.  Patients are generally more likely to have tendon damage now than before these antibiotics were available.

If patients notice sudden increased joint tenderness and swelling, they should let their doctor know if they took one of these antibiotics in the previous six or more months.  If they are still taking these antibiotics and develop tendon pain or problems, they may need immediate medical help, including immobilizing the joint and stopping the antibiotic.

Patients with chronic illness, long-term steroid use, renal or liver problems or autoimmune conditions such as RA or Lupus have a higher risk of tendon injury after taking these antibiotics.   Prompt medical attention, accurate diagnosis and treatment will result in a better chance of complete tendon healing.

Patients who have tendon injury from these antibiotics should also be very careful about using these antibiotics again.

[Adapted from: Levofloxacin-Induced Tendon Rupture: A Case Report and Review of the Literature, Liana Gold, ARNP, MSN and Helena Igra, MD, The Journal of the American Board of Family Medicine @

Lupus, learning and keeping pace from a legal perspective

Waldorf Astoria Arizona Biltmore, AZ - Frank Lloyd Wright Ballroom Classroom Seating

State bar conference volunteer

Along with a team of other volunteers, last week included three days helping the Arizona State Bar at our state’s annual convention for mandatory lawyer continuing education.  This was an interesting change from the normal management routines of my government law office.  About half of the time we were helping attorneys check in for their classes, and rest was divided between coordinating session details for the faculty and ironing out snags and miscellaneous attendee needs.

Change of Pace

Change of pace

It was refreshing to serve other members of the legal community while having a break from my own normal work routines.  I enjoyed the opportunity for a new adventure.

For a “people person,” there is nothing like interacting with others and having the opportunity to help make their experience pleasant and stress free.  Although briefly meeting and interacting with hundreds of new people was emotionally fatiguing, it was also rewarding and challenging.  Each new attendee presented with their own agenda and sometimes unique set of questions and concerns.  Helping everyone was a very satisfying experience.

Legally Taking a Different Pace

handicapped man in wheelchair

A different pace

I could not help but notice the handful of attorneys who were attending with visible disabilities, some in wheelchairs and others with canes and other noticeable mobility challenges.  My heart was captured by the special dilemmas unique to their seminar experience.  Often, even in this age of diversity and ADA awareness, details, like the convenience of handicapped parking and walkway distances and slope, seem to receive inadequate attention.

Convention centers and hotels can be larger than most people realize!  When planning my travel, I am usually unsuccessful finding online hotel maps with handicapped parking locations shown in relationship to entrances and meeting rooms.  Usually, I end up studying the seminar conference diagrams to find my classes, and then find the closest handicapped parking spots using Google’s satellite maps.

Taking Too Many Paces

As an attendee at many professional education conferences, I find it difficult to walk back and forth between events.   Lupus arthritis, and lupus inflammation in tendons and other joint soft-tissues can make even mild extended exertion a nearly insurmountable problem.  Often, the vendor shows are massive at national conferences, so I even study the maps of vendor booths to make strategic decisions the ones worth finding.

Remembering Boston and It’s Shuffling Pace

Photo by Lupus Adventurer © 2013

Not one more step!

One morning several years ago at conference in Boston, I stopped within a couple of steps of shredding the swollen Achilles tendon in my left heel.

On the second day of the conference, while hobbling on increasingly stiff, sore feet and ankles, I had reached the midway point between my hotel and my first morning session. Putting weight down on my foot to take the next step, I felt the sensation of swollen tendon fibers in my heel starting to rip loose from each other.  I backed the weight off my painful foot and stopped right there, in the middle of the convention center breezeway.  I didn’t dare flex my foot one more time.

I knew could not take another step without ripping my left Achilles tendon.  Just a year before, I had ripped the Plantaris tendon in my right calf during the mild exertion of a laser tag team-building event. There was simply no mistaking what I felt.  So, slowly scooting over to a nearby planter filled with Philodendron, I sat down and evaluated the extent of my brewing tendon injury.

I watched as other convention-goers passed me on their way to class, greeting some that I knew as they went by.


On the way to class

After resting a while, the intense pain eased just enough to put a little weight on my foot, and I got up and slowly shuffled the rest of the way toward the conference meeting room, never lifting my heel off the floor to prevent pulling the tendon.  Stopping off at the first aid station for an ice pack, I slipped into the back row of class late — picking a spot with two empty chairs.  After elevating and icing my heel through the morning class, I was eventually able to walk very slowly and carefully to the remaining sessions that day.

The ice bag was to become my constant companion through the rest of the conference.

That night, I sat on the bed in my hotel room,  icing and elevating my heel and eating take-out P.F. Chang’s lettuce wraps for dinner.  Increasing my steroid dose to emergency flare levels, I had narrowly averted a crippling tendon injury.  The next morning I awoke adequately recovered to gingerly resume slow, careful, deliberate walking throughout the rest of the conference, icing periodically as needed.  I allowed twice as much time to get between sessions as otherwise would have been needed.

Heeding the Threat of Completely Loosing Pace almost five years have passed since the Boston conference, I have never forgotten the sensation of swollen tendons on the verge of shredding.  A woman with Lupus that I know in Maine shredded both Achilles tendons by walking on them when they were inflamed.  She has been wheelchair-bound ever since.

This past week, I arrived at the local conference for the volunteer orientation session, hoping to find a close parking spot.  I was I was grateful for the valet who directed me to the handicapped parking closest to the conference center.  I noticed the longer distance many attendees had to “hoof it” from the distant parking lots cars to get to their classes, and was very thankful.

Lupus and the chat between me and my latte

craving a mocha latte

At mid-afternoon I was craving a mocha latte, and set out on my break for the coffee shop on the first floor at work.  In between my office and my intended destination, I ran into a gal from another department who also has lupus. It wasn’t too long and I almost felt like I was having an out-of-body experience.  Who would believe all the stuff that we were talking about, unless they were in the know about lupus?

To the unprepared person, the nonchalant way we discussed the day-to-day issues of lupus as we caught up on the recent condition of each others’ lupus adventures could be a little daunting.  It dawned on me that to the casual listener or passerby, our reality with lupus might seem utterly unbelievable and unreal!

utter fatigue from l upus

First, there was discussion of fatigue and how utterly exhausting my friend was feeling.  Then the encouraging thought that all of us lupus patients feel that way quite often, and it should not be alarming.  Then, a discussion of shared digestive issues  (I know, T.M.I.) that are so utterly disruptive to social life, and yet we have resigned ourselves to accept and live with the imposition of this lupus-caused discomfort and indisposition without warning.

impact of exercise on lupus

Next, we were chatting about exercise and the positive impact it as upon joint pain, circulation, tendon health, emotions, etc.  Followed by a detailed discussion of the narrow exercise options and restrictions we face: no sun, no impact, and the need for slowly working up the duration and rigorousness.  We discussed types of equipment that seem to work, and those that don’t.

medications for lupus

Soon our conversation turned to current medications and treatment plans. The long list of drugs we each rattled off was enough to turn any passing head in concern and amazement.  Scores of medications, this supplement and that, and what the benefits have been from taking them.  We spoke about the results of various anti-inflammatory drugs we have used, and how we reacted to them. Of course, we didn’t leave out the chemo drugs!

doctors are people, too

At one point we compared notes on our rheumatologists and evaluated their bedside and office visit manner, and swapped stories about methods and strategies for achieving the most successful results from our visits with our doctors.  It was comforting to agree that they, too, are just people, and that applying some kindness and people skills in our dealing with them, coupled with frankness was always a good tactic.

talking about lupus with others

Eventually, my fried introduced me to a co-worker that walked up and joined into our conversation.  At first, I was not certain how much she might or might not know about the discussion she had happened upon.  I found myself feeling almost sorry for her, and somewhat obliged to move toward more generic conversation.  Speaking with her about the support of our employer for ADA accommodations for lupus was a good quick transition away from lupus patient chatter to more benign and inclusive workplace gab.

the foreign language of lupus

The arrival of the third person had suddenly made me realize from an almost out-of-body perspective how obscure and perhaps frightening the “foreign language” of lupus patient chat might sound to the uninformed outsider.  We take so much for granted that we have learned to accept about our lupus.  Lupus is not for the faint of heart, that is for sure!

I chuckled to myself about the litany of things I have become used to discussing in my lupus adventures and headed off to find the mocha I had set out for 15 minutes earlier.  Quite a chat between me and my latte!

CNS Lupus and a little sneaky confusion


Central nervous system lupus in a word?  Disconcerting!  When life gets busy and demands get stressful, CNS lupus can sneak up on a patient and catch her off guard with its bag full of antics and embarrassing tricks.    Over the last few weeks, my life became a little out of whack as my husband and I maneuvered around his knee injury, inability to drive and eventual knee surgery to remove a large blood clot.  Life and schedules became very non-routine and my CNS lupus quietly whispered to get my attention and said, “howdy.”

After more than a year of Benlysta infusions, my CNS lupus has been quieted and subdued more than at any time I can remember in the past several years.  It has been a relief to have my memory and problem-solving parts of my brain working generally well, and I can count on it more often to remember things that were a struggle before.  Well, lately has been an exception.  Being stressed, doing lots of extra driving, working weird hours, concern about my husband’s injury and surgery, and forgetting my medications a few times all contributed to some symptoms that caught me off guard.

Left turn lane to nowhere

One time on the way back to the house, I started into a left turn lane on a busy street that didn’t head anywhere I needed to go.  My kids that were with me asked, “mom, WHAT are you doing?  WHERE are you going?”  There was no saving face because the turning lane went nowhere.  It was all too obvious I was confused.

Several activities were going on at our church because of a 30th anniversary celebration, and my friend and I were preparing to sing a couple of duets for a church service and a formal dinner.  After meeting one evening to practice several pieces in our growing repertoire, we decided which song to sing what night, and scheduled our next practice a few days out.  The next morning, and for several more that followed, I could not remember which songs or even which music books we had decided on.,r:72,s:100,i:220&tx=66&ty=-145&biw=1600&bih=646

practicing ALL our duets in the car

To thoroughly cover my bases, I popped the ALL the background music CDs for several music books into my car, and for a few days sang along with ALL of our duets as I commuted.  It took me several days of singing and hoping in vain that my memory would clear before I called my dear friend and confessed my massive memory lapse.  My friend, so like a sister, loves and understands the hard issues of my lupus, and in her matter of fact directness, refreshed my memory.  This time, I wrote down dates and times next to the names of the songs in the table of contents of the correct music book.

Forgot the card… twice!

Twice recently, I went out to pick up some amazing sub sandwiches from our favorite local lunch spot, Jersey MIke’s Deli.  My husband all but cherishes his Mike’s “frequent buyer” rewards card, and admonished me to remember to use the card when I bought our subs.  Not once, but twice, I forgot to pull out the reward card.  No more than ten minutes passed between taking everyone’s sub order and standing in front of the deli counter, but both times the thought was wiped clean away until later.  When he asked me about it, I was frustrated at forgetting.  Short-term memory issues from CNS Lupus?  Of course!

Confusing days, names & passwords

The most disturbing issue of all was several instances when I was confused and couldn’t figure out what day it was.  Then, later that day, it bothered me greatly when couldn’t remember my friends’ names or my pharmacy log in name and password.  I even had some moments of difficulty articulating clearly while trying to speak.

Things were subtly getting worse a little at a time, when I was suddenly shaken into action in the middle of happy pleasant busy day by a tidal wave of unexplained deep physical sadness.  This overwhelming emotion was so strong it was like an intruder bursting into the room, and I suddenly felt it physically.  It was an unmistakable sign that my CNS lupus had kicked up into more activity.

This physical “depression” I experience sometimes when my CNS lupus becomes active is a great deal like a sensation of woe that floods over and through me.  It seems totally physical, and is completely detached from my thoughts and feelings.   It is a misfit with where I am at in life and in the middle of an otherwise normal day.  My upbeat brain doesn’t match my suddenly “grieving” body.  It feels like my body is intensely sorrowful, while my inner self is perfectly happy and at ease, even cheerful or joy filled.  Over the years I have learned to recognize this urgent organic cry from my brain and body for help.,r:5,s:20,i:220&tx=132&ty=82&biw=1600&bih=646

diagnosing CNS lupus with treatment

I respond by taking a modest burst of steroids and taper off within a couple of days.  If the physical depression returns, I set a priority appointment with my rheumatologist, who usually ups the steroids by injection or a high long taper off prednisone.  Steroids are the big gun that immediately changes everything.  My rheumatologist says it is possible to diagnose CNS lupus by treating it, because of how quickly it responds to prednisone.

Lupus and getting back into exercise

One in a string of mornings

This morning was one in a string of mornings when I have renewed my exercise routine in earnest.  It is so easy to forget how refreshing exercise can be when I wake up feeling stiff, aching and sore.  It is just simply counter intuitive to exercise when I hurt!  Once again, my poor memory recalls how much better I feel after just a few minutes of workout.

At the moment, I am slightly sweaty and headed for the shower.  But, I feel better than when I got up!  My breathing is deeper, my pain levels and stiffness are less, joint inflammation is down, and my endorphins are on the rise, pulling up my mood after them.

Increasing exercise to 30 minutes daily

Just a few weeks ago, my rheumatologist asked me how much exercise I was getting, and in honesty I had to admit it was not enough.  I have slipped lately and skipped exercise go too many mornings, and cut my workout time short on most of the days when I do exercise.  Letting myself get caught up in the hurry of last-minute morning preparations, lately my time planning and prioritizing to leave time for this important health priority has been poor.

As we spoke in more detail, my doctor concluded that the 15 to 20 minutes I have spent on my stationary bike a couple of times each week, with only 5 to 10 minutes of gentle yoga some of the other days, was insufficient.  He challenged (or perhaps ordered) me to slowly increase exercise to 30 minutes every day

My response as an obedient soldier in the battle against my lupus? “Yes, Sir!”

My exercise goal due date!

So, the plan is to build my daily exercise time back up by a couple of minutes more each week over three months, and kick up my exercise program a notch or two.  So, that is what I have been up to each morning.

Okay, I have missed a few days since my last appointment, but I am definitely increasing my compliance and doing exercise most days now.  I am up to about 22 minutes and hope reach 25 minutes soon — by the end of October.

In due time the weight will come off, too

My next milestone will be 30 minutes daily by the time of my next doctor visit at the end of November. Working back up slowly is joint and tendon friendly, and helps prevent injury or flare of my lupus arthritis from over exertion.

I haven’t lost much weight yet, my secondary goal, but I have faith that in due time that will come, too (or would that be “go?”)

They say its takes 21 days to make a new habit, and I now am well on my way back to habitual exercise.

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.

Diagnosis and Treatment of Lupus: Fact #9 – Pain and Anti-inflammatory Drugs

Diagnosis and Treatment of Lupus: More than 90 percent of people with lupus will experience joint and/or muscle pain that can be disabling. Lupus causes inflammation in the synovial tissues inside joints of fingers, wrists, feet, ankles and knees. As a result of this inflammation, non-erosive arthritis can develop that causes pain, stiffness and swollen joints.  Decades before my lupus was diagnosed, arthritis was one of the first symptoms of my lupus that appeared as early as my kindergarten years, and recurred all through high school, college and early adult life.

Medications for lupus pain and inflammation

Medications, both over-the-counter and prescription drugs, are used to used to control the pain and inflammation associated with lupus.  Medications for inflammation include non-narcotic analgesics/anti-inflammatory medications such as aspirin, ibuprofen, naprosyn, sulindac, and non-steroidal anti-inflammatory drugs (NSAIDs). Pain medications range from simple aspirin or acetaminophen to strong narcotics used for the most severe lupus pain.  Persistent or severe inflammation at times requires the use of steroid medications to reduce swelling in involved joint tissues.

The Lupus Foundation of America provides the following information on NSAID medications used to treat painful inflammation.

“Pain and inflammation are common in people with systemic lupus erythematosus (SLE). Sometimes these symptoms indicate serious organ involvement which may require powerful anti-inflammatory and immunosuppressive drugs, such as steroids (cortisone, prednisone).

At other times the inflammation is not as severe or does not affect major organs, and a less potent drug is indicated. In these cases, other milder anti-inflammatory and analgesic drugs can be used, especially a group of drugs called the non-steroidal anti-inflammatory drugs (NSAIDs).

While NSAIDs are not approved specifically for SLE by the Food and Drug Administration, they are approved for use in many musculoskeletal pain conditions such as arthritis and tendinitis, which also afflict people with lupus.”

See, the Lupus Foundation of America web site for more information on NSAID medications.

Treatment of lupus arthritis led to a diagnosis

Other approaches to dealing with pain may include various therapies such as applying heat, gentle exercise to stimulate pain-releiving nature endorphins, prayer, meditation, bio-feedback and other non-chemical alternative approaches to pain management.  The most effective methods for reducing and coping with my lupus pain include exercise, heat, acetaminophen and sometimes tramadol for the times I experience the most intense discomfort.

One of the reasons I first sought medical treatment for my lupus arthritis pain was because I was unable to take most over-the-counter NSAIDs, and on my own could find no relief for my pain and joint swelling.  I had intense pain all night, lost a great amount of sleep, and sometimes could not walk without experiencing overwhelming pain and stiffness.  Seeking help for my severe and unrelenting arthritis symptoms eventually led my doctors to find a reason for my symptoms, and this led to my lupus diagnosis.

Lupus and the motiviation to write about it

Why write about lupus?

What is the motivation to write and blog about lupus?  People struggling with lupus, in their own life or that of a loved one or friend, need to know they are not alone.  Writing about my own experiences comes from my yearning to help others get through their health struggles victoriously.  My hope is that I will urge them to find healthy perspectives, and perhaps help guide them away from self-defeating and self-destructive behaviors.  At times my goal is even to urge and cajole other to strive for finding their greatest quality of life, and to help them discover the power of thankfulness.  It is a sad thing when we see ourselves as victims.  We have a choice about how we view the circumstances of life.

Facing an incurable, nagging, uncontrollable and unpredictable auto-immune disease like lupus can be a daunting obstacle to contend with. I am encouraged greatly by precious family and friends who pray for me, help me, encourage me and love me! Everyone should have this blessing of a powerful support network in their lives. Sadly, this is not the case for so many lupus patients.

A need to tell the personal side of lupus

Those who face their disease painfully alone can now reach out for encouragement and perspective through the vast resource of the internet. There are many medical sites dealing with excellent lupus information, and these are important resources for all of us with lupus. However, there is still a great need for telling the personal side of lupus.  I try to tell my lupus story as honestly and accurately as possible, hoping it will help others.

The Lupus Book, by Daniel Wallace, M.D.

When I was first diagnosed with lupus twenty years ago, the Internet we know and use did not exist. (Yes, younger readers may be amazed that there was once a time the Internet did not exist, and average people did not own their own computers.) There was no active chapter of the Lupus Foundation of America in my city or state, so I set out quite alone trying to come to grips with learning about my disease and how to manage it.   My search led me to the County Library, where I spent many hours searching through online medical research services  I purchased Dr. Daniel Wallace’s patient-focused “The Lupus Book” and read it from cover to cover a few times.

I write to offer a shorter path to steer new patients to the information I struggled to find, and to help encourage lupus patients and their families in the challenges and lupus adventures they face.

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