One Patient's Positive Perspectives

Posts tagged ‘diagnosis’

Lupus in a Victimless Life – Despite the Diagnosis

Series: Lupus in a Victimless Life

Having Lupus does not mean being a victim! Because Lupus is only one thing in an otherwise amazing life, it does not need to define us.  In the government law office where I work, we have a professional victim advocate who helps crime victims asset their rights through criminal court case against the person who hurt them.  One thing common to most victims is that they view themselves as victims, and often perceive themselves as powerless against the victimizer.

By looking at several aspects of lupus, this series will attempt to offer some ideas that may help with the effort to move away from a victim mentality, and toward a more positive perspective.  There is no question we cannot choose to have Lupus, but in some ways, we might even find some reasons to see some positives associated with Lupus!

First, consider the idea that becoming a victim is at least, in part, a matter of mindset and even a choice.

Despite the Lupus Diagnosis – an Overly Defensive Immune System

There is no cure for Lupus.  The treatment for Lupus has greatly improved over the past couple of decades, and especially since the new biologic medications such as Benlysta (Belimumab).

However at ease we become with the fact of our Lupus diagnosis, it remains an unwelcome companion traveling along with us in our life adventure.  Does that mean I should view myself as a victim?  No way!  There is a better way to view Lupus.

One afternoon, while sharing the podium and waiting to speak at a Lupus Foundation of America patient symposium, one of the world’s leading medical experts on lupus explained something very profound.   Her explanation provided a radically new perspective on Lupus.  A few minutes later, she explained the same concept to the room full of people.

She spoke about the most recent medical research that had produced a new understanding.   Lupus does not actually attack a Lupus patient, it actually overprotects them!

She went on to explain that immune systems can adapt and attack new and changing pathogens.  This is a testament to the fact that some people will always have auto immunity.  This capacity of the body to create antibodies against itself comes from the same aspect of our autoimmune system that can fight off new variants of viruses and bacteria.

Without the human body’s ability to develop new immune defenses, the human race would become extinct.  We owe our continued existence as a species to the fact that our immune systems, with their imperfections, can respond to either defend us against new threats, or unfortunately, become confused and try to overly defend us against our own cells mistakenly identified as threats.

This over-defensive response results in a wide array of auto-immune conditions, including Lupus.  She explained that this new information helped researchers understand why a certain segment of the population will certainly develop auto-immune responses.

After hearing this explanation, my view on the “why” of lupus radically changed.  Lupus is not really attacking me, Lupus is really my flawed immune system working overtime defending me against an imagined threat.  It is demonstrating what friend of mine describes as “being exceedingly helpful” to a fault.

It seems that every lupus patient is actually a living testament to the kindness and protective grace of God.  Because imperfect humans have dynamic changing immune systems, the human race is kept alive.   If not for this ability, each newly mutated germ could wipe out millions of people.   But, due to the same immune processes that cause Lupus, the human race continues to fight new germs and virus mutations as they arise, and therefore survives.

So, instead of seeing myself as a victim of Lupus, I see myself as overprotected by a misdirected, well-meaning immune system.  With Lupus and its known negatives, we still have defense against the microscopic threats that would otherwise kill us off.  So, accepting the downside of Lupus goes along with accepting the upside of a flawed, overactive, but still amazingly effective immune system.

By remembering that 99.9% of my body works properly, it is possible to choose to rejoice about everything else that still works, while acknowledging and accepting the imperfections of having Lupus.


Lupus and the adventure of finally finishing something

Senior year of high school

Finishing Something!

Finishing something

There is no feeling quite like setting out on an adventure to finish something that has been waiting a very long time to be completed. So it was this week. After a long thirty-four year interruption, there was finally enough health, time and money to return to college to finish a nearly-complete bachelors degree.  Thirty-four years was time enough to equal more than half of a life, filled with countless challenges and blessings.  Yet, this was the one undone endeavor that still carried a sting of lament.  After investing four years at two colleges, the final semester of college was never completed.

Over the intervening years, a lot of stuff happened!  Enough years had passed to,

  • Love a husband more than a third of a century
  • Work long enough in a career to earn a pension and start to think about retirement
  • Conquer great financial hardship and recover, and go on to own two homes
  • Face the threat of imminent death three times
  • Raise two children and watch them graduate from high school and college
  • Watch children marry and enjoy four grandchildren
  • Lose one parent suddenly and lose the other slowly to dementia

Why the long wait?

Paying medical bills

Paying medical bills

Why did it take so long to get to this point? In a couple of words, life and lupus got in the way!

Several times a target date was set and never worked out.  First, after taking a semester off college to get married, a baby [note, the pill does not always work!] was soon on the way and a prayerful decision reached that my husband needed to finish college first since we had started a family who needed nurturing.  We assumed my degree would quickly follow, as soon as toddlers went off to school.  But, when severe asthma shattered those plans my husband’s medical bills equaled enough to pay off a house (without ever having a house to show for it.)  Somehow we paid all the bills, but it took seven years, and thankfully, without declaring bankruptcy.  It was a small price to pay, and we were grateful, because the doctors saved his life!

Sober concerns about my husband’s long-term survival made him urge me to find a job that could support us right away as well prepare me financially for the very real possibility of losing him.  So, this meant going to work without finishing the degree.  Even then, Lupus was lurking around in the shadows, but still had not introduced itself properly.

As kids went to school, their dad was home, through kindergarten and several years along.  This meant my job was the sole support for the four of us for a while.  It was a great blessing to see God’s wonderful provision meeting our financial needs through my new career as a paralegal trainee, over the next three decades promoting through the law office ranks to government law office management.  Eventually breakthroughs in asthma medications stabilized his health, but by then our children were a little older and my career was well-established.

Trading places!

Photo Lupus Adventurer's Daughter-In-Law

Photo by Lupus Adventurer’s Daughter-In-Law

Then, we traded places.  lupus came out of hiding while he regained health and became the strong one.  As children turned into teenagers, lupus was in full flare with arthritis, fatigue, rashes, mouth ulcers and deep gnawing bone pain.  Many nights spent in a chair rocking back and forth was sometimes the only tolerable way to pass through those early morning watches.

Then, while grieving my mother’s death, opportunistic lupus rampaged through my body, targeting my central nervous system and muddying memory, coordination, speech and analytical thinking.  That was the year lupus moved in like an unwelcome intruder, threatening my career and nearly completely disabling me.  When abdominal artery ruptured, nearly taking my life, while our kids struggled with a mom who got confused, forgot things and was struggling to stay afloat.  When there wasn’t enough of mom to go around, there was also complete peace that husband and children were the priority that came first.  College was never even a consideration because of time and money.

Finding an open door

Two important questions

It did not make sense to put personal goals first unless it made sense to heart, budget and what mattered the most in the depths of my heart.  While wishing I could finish college, other commitments and priorities mattered far more. Character and patience required waiting until a right combination of physical health and strength, priorities and schedule, and financial resources and wisdom would (ever) add up an open door.  A final decision also required defensible answers to two important questions, especially this late in the game:

  • Would there be enough return on the investment to make spending the money a wise financial investment?
  • Would the degree contribute enough to reaching future goals to merit spending the necessary time and energy?

Regardless how long it took to get here, there are no complaints about the wait. It was always clear when God used events to deliver a very personal message that not all moms should be “stay home” moms, and not all moms are supposed to get their college degrees before their kids do!  Sometimes, God calls a few of us down a different, sometimes difficult path to help us understand His love and care through the struggles.  Now, it makes sense to spend the time and money on getting the degree completed. It will boost earning power and open up a wider arrange of choices for a meaningful semi-retirement second career.

Back on campus!

So, this week it was thrilling (and a little nerve rattling) to become a college student once again.  On-campus classes are held one night each week for the next eighteen months as part of the degree completion program. Someday husband, daughter and son — who all finished their college degrees (daughter has two) — will assemble to watch mom put on cap and gown and cross the stage to receive her diploma.  This is the time to make it happen, lupus and life not withstanding!

Lupus Adventures Reader Survey

Please help with your answers

In order to help fine-tune the focus of articles to Lupus Adventures readers’ needs and interests, your help with a simple three-question survey would be great.  Even if you are not a lupus patient, or your connection to lupus is through a family member, friend or your work, please answer the first question.

Please choose the best answer for each question, and click “vote” at the end of each question.  As soon as you vote, you will see the survey results for that question.

Thank you!

Lupus Adventurer

Three-Question Survey

Your connection to Lupus?

How many years since your lupus diagnosis?

What was your age at diagnosis with lupus?

Thank you so much for your response!


Your help is appreciated!


Lupus adventures navigating a new doctor’s forms!

Filling out new patient forms

Filling out new patient forms

Every person with a chronic medical condition, like lupus, has done this time after time.  Each time we face the adventure of seeing a new doctor or medical provider, we do it all over again.  I cannot help but wonder what it would be like to fill out forms for a new doctor, if only.  If only I were a normal person, without lupus! Perhaps that would be the ideal new patient experience.  But then, perhaps I wouldn’t be needing to do it at all.

Follow along with me as I wish I could just fill out the form for my healthier alter-ego twin sister.

If it were my healthier twin…

Returning empty handed

Returning empty-handed

First, IF I were my healthier twin, it might be possible I have been to this doctor before.  It has been such a long time, I can’t  remember when or if it was, and so I ask the receptionist.  “I think I have seen this doctor, can you remember when I was here last?”  If I did, the year escapes me!  I insist, “I really think I have been here before,” but because I have been away and healthy so long, the receptionist hands me a clipboard.  She asks, “since this IS your first visit, would you please fill out all the forms, please, and bring them back when you finish?”  My healthier self continues to protest, ” I think I saw Dr. Smith a long time ago,” so, she relents, and heads off to search her files for my chart.

While I stand there, holding the clip board and waiting, I contemplate that it has been so long ago, the young receptionist was probably in kindergarten, she couldn’t possibly remember me.  Reason whispers in my ear, “any old records the doctor had about me were probably destroyed long ago.”  Returning empty-handed, she announces politely, “IF you had a chart, we cannot find it, SO, we really do need you to humor us and fill out all the forms all over again.  We will have to make you a new chart.”

Nope, it’s really me after all…

Now, since I am ME and not my mythical healthier counterpart, I really AM a new patient.  However, I notice she already has a large file on me in her hands, brand spanking new, presumably holding unread fresh photocopies of medical records and diagnostic reports sent over from all my other doctors, labs and radiologists.  Although she surely has my complete medical history in the shiny new file, she STILL insists, “please fill out all the forms.”

So, still holding the clipboard and pen in my hands, I sit down to begin working on the first question, “Describe briefly your present symptoms.”


Describe your symptoms...

Describe your symptoms…

IF I were my healthy twin, I would fill in something like, “sore throat.”  But, since I am ME, and not healthier HER, instead, I panic!  There are only five lines to write the answer on.  How small can I print to get the most important things in that space?  What should I leave out, what should I include?  Should I limit my answer to just the issues related to this doctor’s specialty, or should I go for the grossly “TMI – too much information” answer?  Should I list the diagnostic criteria, or just try to sound like a novice patient and graphically describe what each of my lupus symptoms looks like?

I suppose to myself that “normal” patients just answer briefly, like my healthier “twin” would have, “sore thumb” or “sore ankle,” or even a much longer healthy persons’ detailed answer, such as “stubbed my big toe last week and it still hurts, so I think I have arthritis.”

Next question, “date symptoms began.”  I just put in “childhood” since I cannot begin to remember what early age I was when the first signs of lupus started.  I ponder, “how young was I when the childhood arthritis, stiff knees, swollen knuckles, mouth ulcers, fatigue and facial rashes all began?”  Perhaps my healthy alter-ego could reply, “two weekends ago,” or something else simple and current, but not me.  This question takes some contemplation and memory jarring to complete.  I keep hoping in vain that the form will get easier after I answer this question.


The inevitable request…

Medical History

Then, the inevitable request, “list names of previous doctors you have seen for this or similar conditions” I hear myself talking outloud in disbelief to myself, “Really, only two blank spaces?” I decide to work backward chronologically until the space is full, wondering, “do most people just say, “none?”

Next, there are several detailed sections for past personal medical history, rheumatologic (arthritis) history, previous operations, and the obligatory family health history.  This time, I am glad to see that there are at least twelve lines for medications, grateful I will only have to double up on some of the lines.  If I write small, I think can probably list all my current prescriptions in that space.  Oh, no, the second column asks for doses, strength, how long I have taken each medication, and how much they help, “a lot, some, not at all, and not sure.”  I decided to guess a little for medications I have taken so long that I don’t even think about the dose any longer or remember when I started taking them.

My date guessing centers around trying to remember the major sequences of milestone health events in connection to which house I lived in, the births of my children, their ages when we moved, their graduation from high school, marriages and when certain lupus flares and major changes in treatment happened, and dates of major accidents, hospitalizations and surgeries.  This is not an exact science, but I am giving it my all out best to be as correct as possible.  Somewhere in the middle of all the guessing, I wonder if the exact answers even matter to this doctor.  Are estimates good enough?  Probably!



Checklist of past medications

Then comes the list of past medications.  I am very relieved to see that the rheumatologist has given some thoughtful courtesy into the design of the form, listing forty common rheumatology drugs, so I check off about 1/3 of them.  I realize there are many that I have completely forgotten about until now, ones that I have taken in my seemingly ancient treatment history.  It is getting hard to remember how long ago I took some of the drugs, so I find myself guessing, hoping again that my new doctor is not big on exact details.  Just like studying history in school, I like the idea that the concepts are important, not the exact dates!

I look up at the clock and realize I have already been filling out the forms for over twenty minutes.  My appointment is scheduled for ten minutes from now, and I have three more pages to fill out.  I can see this will take a while!  I can imagine I will still be working on finishing these forms while I am waiting in the examining room.  I remember the receptionist had told me to arrive a few minutes early, and now am chuckling to myself she should have said a couple of hours!

I check  off the boxes for eight of the twenty-four past conditions I have had, and list my six previous surgeries, one transfusion and one other serious injury.  Then after all the histories, is almost a whole page about medications, present and past.

Lifestyle, exercise, more details…

Lifestyle, exercise & details

Then,  a few dreaded lifestyle sections asking about special diets, regular exercise habits, social history, home conditions, education and employment history.  I find myself amused at the level of detail asked in these sections, wondering if I should make these up for the fun of it.  Does the doctor really care if I was unwise enough to smoke twice a day between ages twelve and fourteen?  My integrity weighs in and I tell the truth, answering for the year “early teens.”  I realized I take all these questions much more seriously than any normal person would or should, but then, that’s the real me with the pen in my hands, not my healthier “wanna be.”

What are they really asking for?

What answer do they really want?

A last, I get to the last page!  I am staring at a full four column sheet of categorized check boxes, listing seemingly every possible health symptom or malady, grouped by labeled categories for each bodily system.  It seems like I answered this a couple of pages earlier, but since there is a longer list to choose from here, there must be a different reason for this question.

The instructions say to “mark any of those problems which apply to you.”  Does that mean that have EVER applied to me, RECENTLY applied to me, USUALLY apply to me, or should I really check off all the things that have happened at any time in the broad expanse of my entire health landscape?

I decide to just check the boxes that I have seen a doctor about, or that have clearly happened more than once.  I am afraid if I pull out the stops, and tell every last detail, the first impression my new doctor will have will be to pull out a big red stamp and mark the outside of my new medical chart in bright, bold, capital letters, “hypochondriac.”  I don’t want this new doctor to put me in the same category as the first doctor who actually called me THAT about five years before lupus was finally diagnosed!

The doctor will see you now

The doctor will see you now!

The doctor will see you now!

Soon, I have completed and reviewed my answers, and signed the forms and handed the clip board back to the receptionist.  I feel just like I have finished a mid-term exam in college!

She says politely, the doctor will be with you shortly.  I muse to myself that the forms took almost an hour, and that I will probably spend less time than that with my new doctor today.  This encounter, will be an adventure, as I open this first page in the new relationship with my new rheumatologist.  I hope the relationship will develop with effective communication, with a large dose of mutual respect.

The smiling receptionist returns through an open door into the lobby, announcing triumphantly, “the doctor will see you now.”

Lupus adventures and blessings beneath a fiesta of balloons

Room with a view of the balloons

Room with a view of the balloons

Once or twice each year I attend professional conferences about legal management, and experience the joys of travel with my lupus. Usually, the most challenging aspect of the adventure is waking up early enough to make my first class each day on time.  Whenever possible, I stay in the conference hotels to avoid walking too far, and to allow me time to rest and kick up my heels during midday breaks.

One week ago, my husband helped pack up our car and we headed off to Albuquerque for a regional professional conference.

A special blessing made the trip more exciting, since my son, his wife and four children live across town from the conference hotel. While I attended classes, my husband was able to spend time with our grandchildren.

By John Fowler from Placitas, NM, USA (ABQ Balloon FiestaUploaded by russavia) [<a href="">CC-BY-2.0</a>], <a href="">via Wikimedia Commons</a>

By John Fowler from Placitas, NM, USA

When we awoke, we had a beautiful mountain view from our 16th floor hotel room.  In the distance, we could see dozens of hot air balloons each morning, as balloonists get ready for the start of this week’s annual balloon fiesta.

After my conference ended, we were guests for a couple more night’s at our son’s home.

Balloon breakfast, anyone?

Balloon breakfast, anyone?

One crisp morning, the children donned their jackets to enjoy their oatmeal on the porch for “balloon breakfast.”

My daughter-in-law applies her creative spark to the daily home-school activities, so it was no surprise when their themed breakfast was crowned by a hovering hot air balloon lowering directly over their backyard!  The children jumped with glee and waved to the balloonists overhead, who graciously waved back their friendly “hello” to the children below.

Balloon breakfast was a “cool” success.

We attended church on Sunday where our son is an associate pastor.  We enjoyed the extra blessing of hearing him, with his wife and their two eldest, sing a song together on Sunday night. My pianist husband showed his versatility by filling in for the vacationing organist during the congregational singing.

By Richard Bartz, Munich aka Makro Freak (Own work) [CC-BY-SA-2.5 (], via Wikimedia Commons

By Richard Bartz, Munich

I treasured this opportunity to see our son and his family serving God with joy in their daily lives.

Our brief visit included some fun times with our grandchildren.  We visited an indoor amusement park, did some shoe shopping for the kids and caught some time at a pumpkin patch watching the kids have a wonderful time.

We cherish the time and blessings of our fall trip to the land of balloon fiestas and grandparents’ adventures.

Our trip home went without a hitch, getting me home in time for this week’s Benlysta infusion, slightly postponed from the normal monthly schedule that originally was set for last Friday.  Then, on to work and resuming my normal routines.

Lupus Adventurer in the lull before the storm

ccSome mornings you get up, expecting to have the day turn out one way, and the unexpected happens.  I arose feeling the morning’s normal lupus challenges: brain fog, aching joints, exhaustion.  I had been in a flare since interrupting my medications the previous week getting ready for a colonoscopy.

My body had not yet rebounded, and it was slow going.  I had no clue a storm would sail in before the end of the day.

From Fair Weather to a Brewing Storm

sweeping floorThe first couple of hours went okay, taking meds, eating a light breakfast, and downing a couple of cups of coffee.  I started out at the piano for a few minutes, and then moved on to running a light load of laundry and sweeping my kitchen floor as my mild morning exercise!  Nothing too out of the ordinary, but suddenly I wasn’t feeling very well.

My mother always taught me that is never good to talk about perfunctory bodily functions or fluids in polite conversation, so I will spare you the details in deference to her deeply ingrained dogmas.  However, this was the first time my digestive system had resumed “working” since the procedure several days earlier.   Again, sparing the unsavory details, I was suddenly extremely ill-feeling and overwhelmingly indisposed.  My entire gut was intensely cramping and burning from top to bottom.

Misled by the Lull

career skirt and shoes blackWriting an email to work in-between bouts of feeling absolutely horrible, I communicated the state of my indisposition and that I hoped to be in for the afternoon.  Things didn’t get better as I had hoped, and the morning continued with abdominal cramps, cold sweats, overwhelming malaise, nausea and misery.

By early afternoon, it seemed things were quieting down, and that I might be able to save the afternoon.  I had a meeting to conduct at work that I had set with a supervisor from another department.  It was my goal to negotiate solutions to some ongoing customer service problems.  I really didn’t want to miss that meeting or reschedule it.

So, I took the “suck it in and go” approach and decided I could tough it out for the rest of the day, confident my physical discomfort problems were quieted enough to let me to cope.  I took a quick shower, dressed for business, and set out on my half-hour commute to work.

Little did I know it was the lull before the storm!

Driving into the Storm

ddSomewhere well past mid-point in the drive, I hit the storm.  Not rain outside the car, but a storm of overwhelming discomfort overtook me within.  I was so sick that I actually passed out for an instant while driving, for a brief, black moment — just a short distance from the off-ramp I would need to take.

Startled quickly back to alertness, I quickly assessed my abilities and kept on driving, while praying that I could make it to work before feeling so bad I would have to pull over at the side of the road.  The idea of stopping on the freeway in the Arizona July mid-day heat did not sound very good to me, so I kept going the last five minutes until I got to work, frustrated as I hit every stop light between the freeway and my office!

Things quickly went from bad to worse.

inside elevatorLeaning against the back wall of the elevator, I was grateful no-one else was riding up with me.  I slowly headed down the hall to my office suffering intense abdominal pain, and in a cold-sweat — feeling like I had just finished running a marathon.  Sitting at my desk, I reeled as I rested my head into my hands on the desk and moaned.

I reached for the phone to call one of my co-workers and asked her to contact the people already assembling for the meeting.  She agreed to extend my apology and let them know I was too sick to hold the meeting.  Next, I knelt on the floor of my office out of view of my doorway, and leaned my head into the guest chair in misery.  I was just too sick to continue sitting up at my desk.

Sending Out an SOS Call for Help

ambulance in motionWhen my boss got one look at me, he encouraged me to go downstairs to the nursing/sick room and rest in a recliner there until I felt better or could get help to go home.  Things were getting worse by the minute.  Before long my boss and one of my other closest co-worker friends were sitting with me, and called paramedics.  They helped me touch base with my doctor, husband and daughter by phone.

In a few minutes, I was surrounded by a dozen paramedics, connected to an IV, oxygen, blood pressure cuff, and partly undressed (one shoulder) to permit attaching the EKG leads.  Pretty soon, I was on an ambulance and headed to a local hospital.

This was not exactly how I expected my afternoon would turn out, when I contemplated my day a few hours earlier over breakfast!

Diagnosis and Two Days in Safe Harbor

picture441My husband and daughter met the ambulance at the hospital, and spent most of the next two days camped out in my hospital room.  I was glad for their presence, encouragement and the comfort of knowing I was not all by myself in the discomfort and distress I was experiencing. Friends, family and coworkers extended well-wishes and prayers for my speedy relief and recovery.

My daughter brought my tablet PC along, which held a picture of all my prescription bottles on it.  This was a great help to completing a list of my medications for the doctors while I was under the influence of morphine.

The medical details and litany of procedures that followed would bore the most interested of kind readers, so, I will skip to the executive summary.

picture438After an abdominal CT-scan and many blood tests I was checked into the hospital for observation and treatment.  No GI problems showed in the CT-scan except some uninfected diverticuli found in the previous week’s colonoscopy.  The CT-scan and echo cardiogram also revealed a little pericarditis (effusion around my heart,) common for some lupus patients in flare.

Neither of these two minor conditions was the cause of my misery.

The long story very shortened is this —  I had a very, very severe urinary infection.

Suddenly, after I was at the hospital, we were all surprised to find out that what should have been yellow was red!  (Okay, I guess I did momentarily talk about bodily functions and fluids, after all.)  My bladder was so infected that the lining was raw and bleeding.  The severity of the infection had triggered intense whole-abdominal pain and cramping of my intestinal tract muscles, as well.

I would have never thought that a urinary infection could cause such overwhelming digestive discomfort, or a hospital stay!

Repairs in Dry Dock

blood_pressure_chartAfter morphine, intravenous antibiotics, a night with oxygen during my sleep, and a short hospital stay, things were much improved.

I had to stay a little longer than planned when I surprised the medical team with a blood pressure reading of 85/44.  I tend to be a pretty cool cucumber under stress, but this was a little more than they were willing to accept as pre-discharge vital stats.  They decided not to let me go home for a while longer, until after administering bolus IV fluids finally got my blood pressure up to 108/65.

They also made me prove I could walk two rounds around the nurse’s station with my IV pole without getting winded or breaking into a cold sweat.  (I failed the first attempt.)  Finally, I got the okay to check out.

Setting Sail for Home

picture444_editedI have been home for a whole day now, and am feeling almost like myself again, just a bit drained and slightly worse for the wear.  Glad my little storm has passed, I am lying low for the next few days and focusing on rest and repair.

The most strenuous activity thus far since getting home from the hospital?

Sitting around with my daughter and painting my nails!

Closing Out Lupus Awareness Month & Lupus Fact No. 31

Closing Out Lupus Awareness Month

Today is the last day of Lupus Awareness Month 2013.  Thank you for visiting and for your interest in learning more about lupus awareness.  Also, kudos to those of you who are fellow lupus patients and lupus awareness advocates helping spread the word about lupus.  Raising lupus awareness saves lives and productivity.  Early diagnosis and treatment helps better control the severity and mortality of lupus.

The following excellent video about lupus was produced about six months ago by the Lupus Foundation of America, and plays below through an imbedded link to their You-Tube page has this introduction to the video.


“Lupus is a cruel mystery because it is hidden from view and undefined, has a range of symptoms, strikes without warning, and has no known cause and no known cure. Its health effects can range from a skin rash to a heart attack. Lupus is debilitating and destructive and can be fatal, yet research on lupus remains underfunded relative to its scope and devastation. Join the fight to end lupus.” 

(Music by longzijun)

You can help through a direct donation to LFA

One of the important ways you can help is to make direct online donations to the Lupus Foundation of America through Lupus Adventurer’s LFA-sponsored fund-raising page at  LFA is a 501(c)(3) tax-exempt charitable organization, so your donations will be fully tax-deductible under federal and state tax codes.  You will receive a receipt for your donation directly from the Lupus Foundation of America.

Last Daily Lupus Fact No. 31

Prognosis and Hope – Life Expectancy: Today, people with lupus are leading healthier lives and living longer than at any time in history, thanks to researchers who continue to discover more about the underlying science of the immune system.


Life expectancy is now longer!

When I was first diagnosed with lupus many years ago, this was not the case, and the prognosis that people heard after diagnosis with Lupus was anything but encouraging.

Today life expectancy for lupus patient is much longer, and the information available about lupus life expectancy is more accurate and much more encouraging!

To learn more about this lupus fact, please read my full post on this subject from May 31, 2012.

Off-line and headed out-of-town to family adventures

Shortly, we will finish our morning coffee, pack our car and head out-of-town to visit our son, his wife and our four grandchildren in a neighboring state.  Today is our son’s birthday, so we will be with them this evening and to stay and visit for a few days.



We also look forward to spending a little time with my older sister and brother-in-law who live just a mile away from our son.  We have a date early tomorrow with my sister and her husband for early morning coffee and a chat on their back porch.  He has experienced some extremely rough health challenges, and we hope to be a small encouragement to them.



Our short trip should be a welcome mini-vacation break from recent long hours of work projects.  We anticipate full hearts overflowing with blessings from being with our dear loved ones.

Don’t be surprised if a few photos and comments make their way here from my tablet PC during the trip.  Normal posting is likely to be suspended until after we return in the middle of next week.

More lupus facts, melodies and familial autoimmune maladies

Familial Autoimmunity

Me with siblings @ 1963

Me (youngest one) and my siblings 50 years ago

This original post was written once on Saturday May 18th, but went into the netherworld of glitches in cyberspace.  Today, I am reviving that attempt.  The day I started this post would have been my mother’s 80th birthday, and remembering her prompted me to take a very special look at our familial autoimmunity.

Over just four generations, my family has many autoimmune examples including lupus, rheumatoid arthritis, gout, psoriasis, thyroid disease, diabetes, severe allergies and asthma.  All month-long we had thus far been spotlighting various lupus bloggers, but this post is different.  Long over the intense grief that followed the loss of my mom, now she is remembered with twinges of recurring lament over her failure to survive a massive stroke at 65.


Me (shortest) with siblings (in front)
and cousins (behind)

My mother was part of an autoimmune heritage that began with her mother, and extends through four generations through me to my daughter.

Happily, our four generations also share a deep love of music, also passed down from mother to daughter like a beautiful melody unrelated to our shared autoimmunity.  This post is about melodies and autoimmune maladies.

Grandma with RA

Warming hands in soapy water

My grandmother Bonnie had rheumatoid arthritis.  My mother remembered her mother arising each morning with aching, swollen, stiff hands.  Grandma would walk over to the kitchen sink and massage her hands in the dish pan’s warm soapy water, while her painful hands were soothed by its penetrating comfort.  Then, she would grab a kitchen towel to dry her hands, and then neatly fold and set it back on the kitchen counter.

Next, on most mornings, grandma would go to the piano in their old-fashioned parlor and sit down to play.  My mother followed her, watching, but sometime was still sleeping at this hour and woke to the strains of music wafting through the house.  Although it was equipped as a player piano, grandma played it herself every morning without running the player scroll.  Grandma explained to her that it felt better in the long run if she made her painful hands gently play the piano, so they could become stronger and more able to fight the arthritis that tried to cripple them.

Playing piano in the mornings

My mother explained that my grandmother took quinine every day for her rheumatoid arthritis.  By the end of her life,my grandmother was diabetic and blind, perhaps from the diabetes, or from her cataracts from a lifetime of steroids,  or perhaps from collection of quinine on her retina.  Quinine is the drug from which modern-day Plaquenil is derived.

Oranges, quinine and grandma

I cannot break into a fresh orange without remembering my mother tell me about the quinine in its peel, and how good quinine was for me.  It was often in this context she would mention her mother’s RA. We never knew what actually caused my grandmother’s late-life sight loss, but she lived to the age of 83, finally succumbing to complications of her diabetes.

Mom with Gout

Mom and her gout

My mother never showed any signs of RA, but she did suffer from gout, another form of autoimmune arthritis.  Her gout came and went in occasional flares and episodes.  When uric acid levels built up too high in her blood, she eventually suffered pain when it began to spill over from her blood into her swollen, red finger and toe joints as painful uric acid crystals.

Mom 1990

My mom @ 1990

My mother described the intense pain and we could see the obvious redness, distortion and swelling of her joints.  Gout only bothered her acutely a few times, because with the diagnosis she learned about specific diet changes that help control uric acid build up and prevent flares, so she managed it fairly well.

Mom watched and learned

As a little girl, my mother liked to watch and listen to grandma play the piano, and eventually learned to play a little herself.  She told me about times she would enjoy sitting at the piano herself, and how she learned to change the songs on the player roll.  Mother also loved to try to play the keys along with the automated pianist as it rolled its way through the songs.  My mother grew to love music, and infected me with that love, too.

Me with Lupus


Reading to my grandchildren

My childhood foreshadowed my adult lupus diagnosis with many signs and symptoms of this autoimmune disease.  At the age of  five,  signs of knee and hip arthritis appeared, and by sixteen arthritis invaded my hands and fingers.  Growing up, there were several episodes of discoid lupus rashes on my hands, face and neck that showed up after playing outside in the sun.  My parents called the rashes a “sun allergy.”  Then, there was a year of unexplained severe anemia in my early childhood, along with severe episodes with unexplained high fevers in the absence any signs of infection.  Throughout childhood there were countless episodes of weeks of extreme fatigue.

All these recurring and varied signs and symptoms led my doctors to repeatedly test me for my grandmother’s autoimmune diseases: diabetes and rheumatoid arthritis.  With tests always being negative, my family doctor would diagnose “unknown virus” and put me on a diabetes diet at five as a precaution.  The diet was a good thing, overall, because it was a healthy balanced meal plan, very much like the Weight Watchers plan I am following today.

bf on musicMy autoimmunity finally was clearly diagnosed as lupus when I was thirty-something: not surprising, considering the known familial autoimmune heritage from the two generations before me.  Any earlier history of auto-immune disease in our family remains unknown, however, my sister had her thyroid removed after autoimmunity destroyed it.  One of my brothers is showing signs of major arthritis, and I encouraged him just this week to discuss our familial autoimmunity with his doctor.

Now, I am under a good treatment plan for my lupus, and stay active, exercise and play the piano almost every morning.  Even when my joints are swollen, I try to exercise gently, do mild yoga stretches and I sit down to play music.  I hope to retire from my government legal management position in a few years, and move into my second career as a music teacher.  I look forward to this less stressful future occupation.

Daughter with Psoriasis

my kids @ 1989

My kids when they were little

My daughter inherited the genetic autoimmune legacy and has severe psoriasis and has severe asthma.  Her psoriasis is the head to toe variety that is measured in percentages of total skin involvement.  She never has a time when she does not have countless plaques on arms, legs and body.  Thankfully, her lovely face and contagious smile are mostly spared from its marring eruptions, although her scalp has constant aggressive flares.

In her teen years when she first developed psoriasis, its severity broke my heart.  I amazes me how gracefully she bears this autoimmune burden.  She plays many instruments, teaches elementary band, choir and general music.  She watches and waits, ever alert for signs of psoriatic arthritis that might threaten her dexterity and ability to play the flute and other instruments that she loves.

My son has four children and the oldest has severe asthma, just like my husband and daughter.  He is a young assistant pastor, church choir director and plays a little piano too.  His son is learning piano, just like my husband, my grandma, my mother and me.

Lupus Facts @ Prognosis and Hope

Lupus & Normal Life Span: With current methods of therapy, 80 to 90 percent of people with non-organ threatening lupus can look forward to a normal lifespan.  The 10 to 20 percent of Lupus patients with more severe lupus can expect to live a long, productive life with proper early treatment.

For more information about this lupus fact, please read my full post on this subject from last year – May 28, 2012

Pregnancy Outcomes: Advancing technology and better understanding of the disease have improved pregnancy outcomes. Today, 80 percent of women with inactive lupus can have successful pregnancies.  First, it is a great idea to learn about the issues and risks of pregnancy in lupus.

For more information about this lupus fact, please read my full post on this subject from last year – May 29, 2012

Working with Lupus and Accommodation: Most people with lupus are able to continue to work. However, some may need changes to their work environment and schedules, such as flexible work hours, job-sharing, and telecommuting.

For more information about this lupus fact, please read my full post on this subject from last year – May 30, 2012

Lupus Fact & Blog of the Day No.15 – Dominate Your Diagnosis & Four Types of Lupus

Lupus Awareness Blog No. 15 – Dominate Your Diagnosis

Working on daughter’s quilt

Today I want to introduce you to a fellow lupus blogger, Leslie.

Leslie loves to quilt, do wool applique and make handmade cards.   She was diagnosed with systemic lupus over ten years ago and faced a “huge adjustment” from “being an independent person” and she began to realize how difficult it was for her to ask others for help.

She knew that she and others in her community with lupus needed support, and started facilitating an LFA lupus support group in Pennsylvania.

In Leslie’s search to stay out of the “rut” that chronic illness can easily put us into, she read “Being Sick Well” by Jeffrey H. Boyd, and gained a helpful perspective.

She describes a defining aspect of her outlook and blog vision in her first post.

“The only course of action is to keep the diagnosis under control-govern it, rule it, dominate it.  This is something we have to choose to do day by day sometimes moment by moment as we strive for autonomy from the diagnosis of chronic illness.”

“In this blog we will explore together strategies that have the potential to help us reclaim our lives, body, soul and spirit, from the diagnosis.”


Loves to quilt & applique

To find out more about Leslie’s interesting story, read a three-part biographical post series about her lupus journey.

  1. Part One: Pre-diagnosis: Rashes and Miscarriages
  2. Part Two: Diagnosis and Rheumatologist
  3. Part Three: Support Group, Work, Reynauds, Sjogrens and Faith

I trust you will find her blog an encouragement and refreshing mix of facts and faith as you join her on her journey.  Her blog is one of my “faves” and is always an uplifting read.

Lupus Truth No. 15 – The Four Types of Lupus

Coping with Lupus: There are four distinct forms of lupus.

Systemic lupus is the most common type of lupus. The other three forms of lupus are cutaneous, drug-induced and neonatal.

Drug-induced lupus and neonatal are not a sustained lupus, but systemic and cutaneous lupus are auto-immune conditions that tend to stay with a patient throughout their life, since there is no known cure yet for the latter two forms of lupus.

  1. Systemic lupus – organ and non-organ threatening
  2. Cutaneous lupus – non-systemic discoid lupus
  3. Drug-induced lupus – caused by certain medications known to produce temporary lupus
  4. Neonatal lupus – affecting newborns born to mothers with lupus

To learn more about this lupus fact, please read my post from  May 15, 2012.

Adobe Photoshop PDFPlan to POP — Put on Purple — for Lupus May 17th

Perhaps change to your great grape Juicy Couture purse to get ready to “POP” — Put on Purple — for Lupus this coming Friday, May 17th!

Lupus Fact & Blog of the Day – No. 6 – Lupus Chronicles and Lengthy Diagnosis Times

Lupus Awareness Blog No. 6 – Nurse Annie’s Lupus Chronicles

Today, I would like to introduce you to lupus patient, blogger and freelance writer Annie.  In her 20-year nursing career, she gained knowledge and tools that equip her to “advocate fiercely for patients as they are often caught in the maze of diagnostic tests, etc.”

Her blog has a great feature.  On its “Contact Me” page, Annie invites readers to send her a question about lupus, and she will respond with information based on her experiences as a patient and a health practitioner.

teamrn profile image

Nurse Annie

She explains to her readers, “Feel free to ask me something that you might not want to display publicly; remembering that any information we exchange will be held in the strictest confidence and will be sent DIRECTLY to my inbox.”

A nurse's perspectives on lupus

A nurse’s perspectives on lupus

However, I respect how Annie clearly and carefully draws the ethical line to avoid the unlicensed practice of medicine and to refrain from attempting to give specific patient’s medical advice.  Instead, she encourages her readers see their own doctor about their medical needs.  Nurse Annie urges, “Your physician knows YOU.  I know a thing or two about chronic illness and ways to cope with it and tips for interpreting…”

Nurse Annie has the knowledge to translate medical jargon, what she dubs “doctor-speak,” into simple, plain English.

Annie has a good emerging blog presence and a steadily growing reader base.  You just might enjoy reading her interesting and informative lupus blog and her winning outlook on life and lupus.  You might even ask her a medical question or two.  I can attest that she answers her emails!

P.S. – Today is National Nurse’s Day and begins National Nurse’s Week

Looking at my office calendar hung on the left side of my desk, I suddenly realized that today is National Nurse’s Day! I couldn’t help but notice the striking coincidence of today’s nurse spotlight on Nurse Annie!  I wish I could say I planned this strategically, but I did not! So, instead, I am inserting this update to today’s post, to pause briefly and recognize the nurses around us.  Nurses play a critical role in the medical care we receive, and are often the first interface between us and the doctors who direct our care.  Hats off to the nurses who care for us!

A little background from the American Nurses Association about nurses… “Often described as an art and a science, nursing is a profession that embraces dedicated people with varied interests, strengths and passions because of the many opportunities the profession offers. As nurses, we work in emergency rooms, school based clinics, and homeless shelters, to name a few. We have many roles – from staff nurse to educator to nurse practitioner and nurse researcher – and serve all of them with passion for the profession and with a strong commitment to patient safety.”

ANA Banner“May 12, the final day of National Nurses Week, is the birthday of Florence Nightingale (1820-1910). The English nurse became known as the founder of professional nursing, especially due to her pioneering work during the Crimean War (1853-1856). Due to her habit of making rounds at night, Nightingale became known as ‘The Lady with the Lamp’.”

National Nurses Week was first observed in October 1954, the 100th anniversary of Nightingale’s mission to Crimea. May 6 was introduced as the date for the observance in 1982.”  Background information provided by

Lupus Truth No. 6 – Diagnosis of Lupus Can Take Time


Diagnosis takes time

Diagnosis and Treatment: Many symptoms of lupus mimic those of other illnesses, and symptoms can come and go over time, which makes diagnosis more difficult. Because lupus can attack nearly any system of the body at any given time, lupus can seem to be a number of unconnected health problems within the same patient.

To learn more about this lupus fact, please see last year’s post on diagnosis and treatment timelines from  May 6, 2012.

Plan to POP — Put on Purple — for Lupus May 17th

Remember to change to your purple purse to get ready to “POP” — Put on Purple — for Lupus on Friday, May 17th!

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