One Patient's Positive Perspectives

Posts tagged ‘learning’

LA’s Musical Background

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Learning to play

First, I am not the accomplished pianist my husband is.  He can just sit down and play, read pretty much any music, add notes, embellish to make it better than what is written, and think on his musical feet (or perhaps musical seat!)  As for me, first comes being a singer, then a student pianist.  Only after struggling with CNS lupus, did  learning to play the piano in earnest become incredibly important.  In the beginning it was primarily cognitive therapy and a musical test eye-hand coordination before commuting.  With slow improvement a vision for more musical purpose emerged.

Playing the piano started almost ten years ago, not long after a fiftieth birthday.  Although a handful of exceptional pianists are friends of my husband and me, personal goals include the realization not ever being in his or their league!  Still, a love for playing the piano makes it fun.  Learning is slower than might otherwise be for young student of the instrument, it will always be a work in progress.

What high and lofty musical goal is being pursue?  To be useful!  As a church musician, I see that there is always a place for any level of competent piano skills, even if just to improve my effectiveness coaching other singers and helping them learn their music.  If I am careful not to overdo it, my lupus arthritis doesn’t flare and I can play the piano without hurting my hands.

So, perhaps quitting the day job to pursue music more fully isn’t reasonable, but then again, maybe it is!  It won’t be too long before I need to cut my work stress down considerably, especially with my lupus.  I consider retiring from my current day-job in government law, collecting my hard-earned pension and doing something less stressful like teaching private voice, piano and music theory lessons to children, or perhaps work part-time as a school choir director.  Perhaps there should be a shingle hanging from my mailbox that reads, “will teach music for health insurance.”

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California State University Campus

Going into college, my talents and gifts included more voice than money, so following music scholarships was the practical choice.  The first three years of college offered solid voice technique and music theory instruction by wonderful music professors in the music school of a large public university in the San Francisco Bay Area.  Then, in the fourth year followed a music performance scholarship to a private Christian college in Arizona.  This opportunity included touring the U.S. performing 8 concerts each week for three summer months.  This experience helps me realize my lack of stamina required for living as a traveling minstrel.  What a wearying lifestyle!  Realizing this hinted that there were greater physical challenges ahead that a few years later would be diagnosed as Lupus.  But, it was a life-changing and broadening experience that enriched a young singer’s life!

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Arizona Campus

Music has always been part of my life, long before the Lupus diagnosis.  Long before a head-first flight through a windshield herniated three discs in my cervical spine and before lupus arthritis made finger joints balloon, it was still possible to hold a violin under my chin, bending neck to the left.  Hands still could cradle the violin neck with vibrato motion in the left hand and a bow in the right.  Now, that violin sits untouched in its case, proper in the corner by the piano.  My younger sister and her first husband were also violinists, and excelled at it.  It was their primary instrument.  The violin was always my second, and the skill with was mediocre, at best.

singing a lupus solo

Just couldn’t stop singing…

Singing was a non-stop activity from the time of my early childhood.  Apparently, there are always going to be a few of us musical misfit kids that show up in kindergarten singing their ABCs with a natural vibrato.  Thankfully for me, there was no stage door mother to go along with that phenomenon, and I was allowed to have a normal well balanced childhood!  I was the elementary school librarian’s daughter, so books and homework always came first, before the music.  But, there was always a whole lot of singing going on!

Everyone at my family liked music, was musical or sang, except my older sister.  (She was strictly an artist, but could draw and paint like no one else we had ever seen, except maybe Norman Rockwell.  Her music was played on paper and canvas.)  Our two brothers have a bit of down-to-earth music in them too, between them playing the clarinet, guitar, sitar and some mean toe-tapping harmonica.  Our dad had a smooth rich Baritone voice and loved to break into songs unexpectedly like, “Swing, Low, Sweet Chariot,” or his favorite, “The Yellow Rose of Texas,” and performed for several years in his youth with a barbershop quartet.

But, our mother absolutely loved music!  She played the piano a little, as her mother did, too, and owned some various instruments that she dabbled with, including an autoharp, balalaika, mandolin and a couple of violins.  But, when she sang to us with her sweet pure high soprano voice, we melted. Hers was not a shrill sound like so many women who desperately try to sing in the upper soprano ranges, but rather a warm milk-and-honey sort of lullaby voice with a lilt.  She sang from the happiness of her heart, without affectation or guile.  Her voice was genuine, humble and beautiful.  She could hug you with a song, and then make you feel like singing along.

Mom infected me with incurable love of music and singing.  Family describe me as singing while playing, walking to school, washing dishes, bathing (of course) and every night at the dinner table, my mom would gently repeat a special table manners rule created just for me, “we don’t sing at the table.”  This stern but musing directive would jar me from my humming world of musical bliss to the rude awakening of my green beans, meatloaf and milk.   Not being very objective about my own behavior at the age of five, it’s best to take other people’s word for it.

My Parent's Record Player

My Parent’s Old Record Player

Often sitting cross legged for hours on the hardwood floor of my parents living room, 45 rpm singles would play on an old Zenith monaural record player my parents bought in the early 1950s.  Every note was memorized, mimic each narration and singing along with the different instrumental sounds dramatizing Prokofiev’s “Peter and the Wolf.”  This was my favorite, and sometimes in the quiet I could silently “listen” from memory to the entire score, just as if the turntable on the Zenith were still spinning.  Some days, I would sing along with Julie Andrews’ songs from musicals like Mary Poppins or the Sound of Music.  By the time I was old enough to learn to read, I had already learned every note and syllable of all the 45s in our house.

My mother was an elementary school librarian, so there wasn’t a lot of television.  It was turned on for a specific program, and turned off again.  Most nights, various members of the family were practicing instruments, doing homework or reading books in one corner of the house or another.  Mostly, there was a calm peace filling our home, subdued conversations, interrupted sometimes by one of us playing records from my parent’s diverse collection of 33 rpm albums.  They had just about everything, the popular music included a little Glen Miller, Roy Rogers or Nat King Cole and the “real music” included a broader selection of symphony and chamber music including Beethoven, Tchaikovsky, Brahms, Berlioz, Bach, Mozart, Haydn, Handel, Puccini and of course, my favorite Prokofiev.

The advent of rock music seemed respected and nominally welcome at our home, and was tolerated in limited volumes and time frames, as my older siblings embraced contemporary music of the late 1960s and early 1970s.  I didn’t get much past the Beatles and Peter, Paul and Mary into the foray of rock music (if you can even call them rock by today’s standards) and was once again sort of a musical misfit, or simply put, just not “hip” in the hippie age.  I guess I never got the memo, or just forgot to read it.  I was too wrapped up in my love of the classics and by high school was studying Italian and German art songs and arias from composers like Scarlatti, Puccini and taking parts in musicals plays such as Oliver, Oklahoma, Carnival, Little Mary Sunshine and others.

San Francisco Symphony at old War Memorial Opera House on Van Buren St.

San Francisco Symphony at the old
War Memorial Opera House, Van Buren St.

Growing up, we sometimes attended the Oakland and San Francisco Symphonies with my parents, and the love of music grew.  As an adult, my music is pretty much performed only in the church setting, as a member of our church choir, as a soloist, as a duet partner with either my husband or a dear friend, in an occasional ensemble group, or playing the piano for services my church holds for seniors in independent and assisted living residences in our community.  Recently, ab opportunity to serve with playing the piano for an entire church service was a nerve-stretching challenge, and a new milestone in this personal musical ministry journey.

[I posted this a couple of days ago, by mistake, before it was finished and edited.  My apologies to those of you who received the rough, unedited version in your email.  WordPress has had some changes while I was on a writing sabbatical, which I am still learning to navigate.  Thanks!  LA]

 

Lupus Adventures Sojourning in the Land of Learning

My Cheering Section!

The Whole Cheering Section!

Finally done!  A two-year long scholastic adventure closed with long-awaited pomp, circumstance, and enthusiastic celebration of family and friends.  It is finished, and the Lupus Adventurer is returning to her blogging home, after sojourning long in the land of learning.  Graduation came as a sweet finish to a college degree put on hold for over thirty-five years.  Returning to college after a 34 year gap was a deeply fulfilling, challenging, and mentally invigorating experience.  Concern that the risk of lupus flares might increase with the added stress of school studies fueled some real trepidation at the beginning, and could have been a valid reason not to try.  However, after being on Benlysta infusions for several years, my health had never been more stable.

Over the years our children grew up, married, and five beautiful grandchildren graced our lives.  Finally health, family needs, and personal priorities were in a place where it made sense.  Personal values put the needs of children and family first, so with great peace of heart college held lowest priority.  Just like many other lupus patients, the years are peppered with various milestone health challenges.  Always thankful for the education received over four years of attending college, a lingering desire to tie a bow on the unfinished degree never lapsed.

th2C28Z9N0With all the credits aging quickly, after ten years had passed without going back, traditional college degree programs required starting all over again.  Until schools began offering degree completion programs, there was little opportunity to consider reviving a quiet personal dream to finish it.  By the time our children were in school, my career was in full stride and lupus was flaring as an unwelcome life companion.  Keeping  up with the demands of home front and work took daily doses of love from husband and family, and the abiding strength gifted though the daily grace and mercy of a walk with God.

With a husband’s support and encouragement from all the corners of life that mattered the most, it is finally done.  After deferring my desire to finish my college degree for many years due to the events and obstacles of life, choosing the priority of putting my husband and family first, and waiting contentedly upon God unless and until He showed me a time when it was right for me to do it.

So, I prayed my way through countless long nights of arduous study, and stretched my brain and heart to embrace and comprehend new ideas and understand new concepts.  Scores of papers were written, supported by hours and hours of academic research.  This was the type of college experience that made me better and my work, and helped me professionally grow.  My husband, family, friends, employer, and co-workers cheered me only continually.

Senior year of high school

College was harder work for me being a lupus patient in my late 50’s who works a full time in government management.  My sleep hours were often deprived, and the hours of study almost always went beyond midnight.  As a result, perhaps, there were some increased health challenges along the way.  But, now at age 59 it is clear that it was a deeply rejuvenating experience.  Study at night after my demanding day job, together with class time, reading text books, and writing innumerable papers were difficult at times.  During the second year of my studies, our son and his wife and family moved in with us and we spent a blessed year as a full household of nine.

Our five young grandchildren brought joyful love and laughter into our hearts, and they prayed for me and encouraged me daily with their hugs and kisses, warmth and smiles.  I felt like my cup of family love was overflowing and spilling out all around me – my heart was full of joy, despite the normal stresses and challenges of sharing our household.  We got to know and love our grandchildren even more deeply and intimately that was ever before possible, and so this will be an ongoing gift to all of our lives for years to come.

 

HHS Lupus and General Health Chat on May 29, 2014

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Questions About Lupus?

Lupus Chat with HSS

On the afternoon of May 29, 2014 at 5:30 p.m. EST (2:30 PST) the Hospital for Special Surgery (HSS) will host a one-hour live Facebook chat featuring both the Lupus Foundation of America and Molly’s Fund Fighting Lupus about Lupus and General Health.

This new chat is a follow up in a series to answer many remaining questions asked by participants on a chat on February, 2014, that featured Rheumatologists Dr. Jane Salmon and Dr. Michael Lockshin, Dermatologist Dr. Joanna Harp, and HHS’ Rheumatology Social Worker Emily Reiss, LMSW  answering questions on conditions co-occurring with lupus and social work.  This chat picks up where the February chat left off, answering a host of added lupus-related questions.

What is HSS?

HSS is based in New York City and is nationally ranked #1 in orthopedics, and #4 in rheumatology by U.S.News & World Report (2013-2014). HSS has locations in Manhattan, Queens, Long Island and Upstate New York, as well as Connecticut, Florida and New Jersey. HSS has been top-ranked in the Northeast for both orthopedics and rheumatology for the 23rd consecutive year.

Don’t miss this!

Don’t Miss Out!

Click on the Link in the image above to go to the Facebook page for HHS and learn more about how to take part in this upcoming online Lupus awareness and educational event.

 

May 15, 2014 Post Update:

Check out the information from HSS’ email announcement that gives more information about the panel members.  It is a little fuzzy, but it gives more detail than was provided in my previous post.

To join the chat:

  1. Visit https://www.facebook.com/HSpecialSurgery
  2. Like the HSS facebook page
  3. Join the conversation

HSS Lupus and General Health Updated Annoucement

Undeniable lupus truths, choice and consequence

Truth

Undeniable Truths

The fact that we have lupus testifies to the undeniable truth that we are imperfect. As much as I would like to think differently, I must admit each time I look in the mirror that I am imperfect in many ways.  While having a right self-view is very important, it helps if we can accept our own imperfections.

If we have lupus, there is absolutely nothing we have done wrong that caused it.  It is not our fault, we are not to blame, and it is not a result of failing to do some “sure-fire” preventive measure.  Lupus is an autoimmune disease that cannot be predicted nor prevented.  This is an undeniable truth.

predictably unpredictable

The only predictable thing about lupus is that it is…

Lupus is unpredictable.  The frequency, severity and duration of flares cannot be predicted.  They can be managed, shortened and responded to, and the risk of flares can be reduced by proper care and medication.  But, the undeniable truth remains that the “one predictable thing about lupus is its unpredictability.”

Everyone with Lupus does not have the same blessings and challenges. Unfortunately, all does not come out equal in this life, but everyone with lupus has the right to choose their primary focus, either on the blessings or on the challenges.

How we view the lupus adventure undeniably affects how we cope with lupus.  Celebrating the positives in life helps take the sting out of having lupus, or any chronic illness.

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Grateful for great crowd of supportive family and friends

I am extremely thankful that I have a wonderfully supportive husband and family, a great job, and countless other important resources. My support circle includes dear people who love me, pray for me and encourage me in my faith.  These precious friends and loved ones help me remember that God is with me in my daily struggle with lupus.

It is another undeniable truth that supportive family and friends make a great difference to someone coping with lupus. Unfortunately, some patients face their lupus alone, lacking this type of warm support and under-girding.  Their striving for victory over lupus’ effects can be difficult, private and very lonely.

winnie the pooh friendsSocial isolation sometimes associated with chronic illness can easily fuel feelings of self-pity and great discouragement.  People who are supportive and caring can positively influence someone struggling with the invisible challenge of lupus.

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Medical tax deductions
increased my refund!

Medical care is expensive, with or without insurance. This is yet another undeniable truth about lupus.  For example, surprisingly, we accumulated enough out-of-pocket co-pays and other medical expenses to save money on itemized medical tax deductions.  This fact says a great deal about lupus treatment, all by itself.  This example doesn’t begin to express the high cost of lupus treatment borne by my insurance company and self-insured employer.  My income tax deductions are clear evidence of the truth that, even though I have excellent insurance, my medical costs count up, too.

Choices of consequence

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Consider the consequences…
Stairs or elevator?

Our choices have consequences —  we all have some good and not-so-good results coming from the decisions and choices we have made throughout life.  Choices influence our lives and show something about who we are.

Our choices influence the home we live in, the friends we keep, the state of our finances, the work we do, the clothes we wear and the food we eat.  These choices show our personal priorities and values.  Choices we make impact our lives many ways, including influencing our health and lupus.

For example, if I choose to skip my medications or spend several days out in the sun, it is certain that these choices will cause my lupus to flare, which in turn could cause severe organ damage. Similarly, a choice to descend or climb a flight of stairs brings negative consequences impairing my mobility for days afterward.

I choose music!

I chose music!

We cannot choose lupus. But, we all at least have some choices about lupus and it’s impact in our lives.

When I was a very young teenager, I started smoking.  Soon, I was given two extremely clear choices, ultimatums.  “Stop smoking,” was echoed by my choir director who threatened to kick me out of a singing group, and my gymnastics coach who promised to oust me from the team.

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I chose gymnastics!

I made a choice that preserved aspects of my youth that mattered the most to me then: music and sports.

That meant making an opposite choice that bucked the tide of what my peers were choosing, made me a little “un-cool” (in the vernacular of the early 1970’s) and ultimately led to social choices that kept me far away from illegal drugs.

Choosing wholesome things I loved more than the negative influences of peer pressure changed my life direction and helped put me on a vastly different path than before.

Choosing well to stop smoking had a part in influencing my ability to continue to sing in college, and eventually changed some life directions years later.  Another important choice radically change my life direction.  Choosing to reject my parent’s religion and become a Christian when I was 16 had an even greater impact on my life than choosing music or sports, both then and now.

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My singing tour group in college
(I am the shortest one in the picture)

Largely because of my newly found faith in Christ, and partly because of my singing  I could afford college.  I ventured out toward college without a penny to my name, and academic and music scholarships were blessings that funded four years of study, nearly debt free.

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Same group – We saw the U.S. performing eight  concerts a week on tour (I’m in center front)

Music and singing opened the door to a college education, first in California and then in Arizona. I was privileged to  travel half of the U.S. doing summer concerts.   Music helped foster friendships and relationships with fellow musicians (including meeting my husband!)

For thirty-five years I have enjoying the blessings of being able to sing solos, and love singing with others in ensembles and choirs.  I choose now to honor the Lord through music.

My education led to my career as a legal government manager, and ultimately that career provides me now with opportunities to make a real difference in government law.  My professional duties are a source of daily fulfillment, and give income, medical insurance (a means to better health) and a pension for my retirement.  Without seeking to educate myself, I would have been ill-prepared to fulfill the responsibilities of my career as a legal manager.

These two early, seemingly small choices in my teen years, filtered down over time with remote impact on many aspects of my daily life, even today.

Choices...

Choices…

Choices to change your lupus

Many other choices along the way contributed to who I have become and the place I find myself in today.  If we could predict the outcome of each choice, perhaps we would never have the courage to risk and sail out into adventures and choices with unknown outcomes.

My choices today will definitely influence tomorrow, but I have no way to precisely predict how they will affect me.  But, by listening to wisdom and making good choices, I am much more likely on a better path, headed toward a better end.

What choices can you make today that will affect your lupus positively?

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Some of my health choices today…

Here are some of mine:

  • Eat healthy foods, avoid unhealthy ones, drink enough water
  • Get enough sleep and rest when fatigue hits
  • Take my medications, every day, every dose and get my Benlysta infusions like clockwork
  • Keep my doctor appointments, get my lab work done and be a compliant patient
  • Exercise when mobility permits and rest when lupus flares
  • Cultivate the relationships and friendships that matter
  • Advocate for lupus awareness, educate and encourage other lupus patients
  • Plan on being a victor, and reject the temptation of a victim mindset
  • Intentionally cherish each day God gives me

Next… Lupus and choosing the victimless life

Lupus Adventurer and the Case of the Missing Daily Lupus Fact Posts

Blogs of the Day – May 18, 19, 20, 21, 22, 23, 24, 25, 26, 27?

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Case of the Missing Daily Posts?

First, thank you so much for the email checking on my well-being and whereabouts! Today, this post skips right over the past week from May 18 and the eight days in between to today, the 27th!

A post for May 18th almost was published, but during the “save” process, WordPress glitched and went into the “cyberspace hereafter” unsaved and lost in a digital abyss forever.  Mental fragments of that once well-intended “almost-post” await resurrection, but not today.  Maybe, it will be born-again tomorrow.   (Religious metaphors somewhat intended!)  Alas, I didn’t even have time after that to mourn my loss until today.

The lupus facts that were intended for each intervening day follow at the end of tonight’s post.

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Project Phase One – Due Now!

A Long Weekend’s Toil Burning Late Midnight Oil

Whew!  What a challenging week-plus it has been.  Consuming work on phase one of a large personnel classification and compensation study project filled last weekend with massive amounts of analytical writing under short deadlines due last Monday.

Telecommuting internet connections failed at home, so, in frustration, my weekend project work moved back to my office across town.  A week ago, after living there nearly around-the-clock nearly all day and night Friday, Saturday and into the wee hours of the morning last Sunday, the first project hurdle was finally completed.

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6 a.m. Sunday Morning

Leaving my office just as the sun came up last Sunday morning, the Starbucks near my office was just opening at 6:00 a.m. Some coffee to drink on my exhausted drive home sounded like a wise plan.  At that early hour on Sunday morning, the freeways were empty and it was a short trip home, hitting the road well ahead of  Sunday morning church goers.

Arriving home just as my husband donned his suit and tie for church, he tucked me into bed with a kiss and a one-word admonition, “Sleep.”

Sleep, Sleep and More Sleep

Sleep indeed came quickly and deeply, and slumber lasted for hours through normal time for breakfast, Sunday School, and morning church services, and extended on into the late afternoon.  Waking just in time to attend the choir practice and the evening church service with my husband, at least some of our normal Sunday routine was restored.

After evening church, I went right back to bed to invest in more much-needed catch up sleep.  Monday morning would come extra early, with project phase two awaiting at my office for immediate attention.

Project Phase Two is Finally Through

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Headed back to work
early Monday morning!

Then, the next phase of the massive class and comp project continued on Monday morning, taking all week to complete before all the last approvals, edits and last touches were done.  The second hurdle was at last finished, signed, sealed, input online and delivered at 9:00 p.m. Thursday night this week.  It seemed there were no spare seconds, minutes or most of all hours to spare before there was nothing left of me to give to accomplishing the project work.

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Finally done!

I drove home late that night, grateful for completion and with a huge sense of accomplishment and gratitude.  Thankful (and thanking God while I drove home) that my health held up, and grateful for those who helped contribute to the project and everyone who came together to work with me to get it done.  Also, especially thankful for my husband, who quietly prayed for my health and success, and supported my need to focus on getting this important work commitment completed.

In the project’s aftermath, brain and body were in dire need of mental and physical rest.  I looked forward to the four-day weekend ahead, since I had well exceeded my normal work hours for the week, and had no plan to telecommute on Friday.  The resulting plan for the last three days?  No work!

Rest, Recovery and Fun with Origami Fashions

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Restful Origami Crafts

Instead, the plan was “play and recover” mode, doing very little but making cups of herb tea and sitting around folding origami paper doll clothes.  Creating decorative napkin rinks for a sewing-themed women’s dinner at my church was extremely restful and fun.  I never touched my computer except to briefly check emails.

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Unique Patterns for Napkin Rings

I thoroughly enjoyed my therapeutic role as doll clothes designer for two straight days while I recovered my mind, body and spirit.  The frivolous mind-resting craft “work” of folding and designing  paper-doll sized clothing couture was just what brain, body and “doctor” ordered!

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One of a kind design therapy!

In reflection, this past ten days has been rather typical of life and lupus.

Sometimes, life, lupus and responsibilities take over and redirect us away from our great (and not so great) ideas, dreams and plans, and we must bend, rearrange life and face the truth of our human and lupus-imposed limits.

Along the way, I had to let go of my plans to do daily posts this month.  I was glad that I was able to get them done through and including the “POP” day on May 17th.  I really enjoyed doing my two-week series on the lupus bloggers!

It is no question that in the past week-plus, all my normal limits were exceeded.  Recovery had become an imperative!  We should always remember that we are made from a speck of mere dust — with a wisp of the precious breath of life breathed into us.

Case solved! The missing daily May Lupus Awareness posts

Women with lupus are at increased risk for loss of bone mass (osteoporosis) and are nearly five times more likely to experience a fracture.  Everyone with lupus should become knowledgeable about osteoporosis.

To learn more about this lupus fact, please read my post from  May 18, 2012.

Blood disorders such as anemia (too few red blood cells) are common in lupus, and can greatly affect the health of lupus patients.  A few blood related (hematological) conditions really matter in lupus.  Blood related issues are usually treated by hematologists, the specialists who know the most about helping patients with blood disorders.  A rheumatologist might ask a hematologist to help treat their lupus patient that has a blood disorder.

To learn more about this lupus fact, please read my post from  May 19, 2012.

People with lupus (and everyone else, too) should eat a nutritious, well-balanced, and varied diet that has plenty of fruits and vegetables, whole grains, and moderate amounts of fish and lean meats. When a patient is diagnosed with lupus, there is no specific recommended diet just for lupus.

To learn more about this lupus fact, please read my post from  May 20, 2012.

More than 80 percent of people with systemic lupus will experience some type of nervous system complication. Nervous system issues in lupus range from mild confusion or memory loss to strokes, seizures, and vision problems.

To learn more about this lupus fact, please read my post from  May 21, 2012.

The malar, or “butterfly” rash on the face is present in about one-third of those with systemic lupus. This flat, reddish rash across the bridge of the nose and cheeks, is often the only visible symptom of this form of lupus.

To learn more about this lupus fact, please read my post from  May 22, 2012.

As many as 40 percent of all people with lupus, and as many as two-thirds of all children with lupus, will develop kidney complications that require treatment.

To learn more about this lupus fact, please read my post from  May 23, 2012.

Only 10 percent of people with lupus will have a close relative who has lupus or may develop lupus, and only five percent of children born to a mother with lupus will develop the disease.

To learn more about this lupus fact, please read my post from  May 24, 2012.

About 40 percent of people who were originally diagnosed with cutaneous lupus, which affects only the skin, will go on to develop systemic lupus that can affect any organ in the body.

To learn more about this lupus fact, please read my post from  May 25, 2012.

Neonatal lupus is a rare condition that affects infants of women who have lupus. With proper testing, physicians can identify most at-risk mothers, and the infant can be successfully treated before or at birth.

To learn more about this lupus fact, please read my post from  May 26, 2012.

Today’s Lupus Fact

Lupus is not contagious and cannot be “given” to another person. Lupus is unlike and unrelated to HIV/AIDS or any other infectious disease. Once people realize this, they may want more information or to correct misconceptions about it.

To learn more about this lupus fact, please read my post from  May 27, 2012.

Lupus Fact & May 17, 2013 Blogger “Put on Purple” Hall of Fame

Lupus Awareness Blog No. 17 – Put on Purple

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Putting it on For Lupus

LA POP 5Putting on Purple we “POP” for lupus today,
About lupus awareness we have something to say!
Supporting our sisters with lupus this way,
Until there is a cure to take lupus away.

LA POP 1We’ve rounded up purples and violets and hues,
Until there’s nothing purple that we cannot use!
Donning purple and orchid and grape in bright array,
We show off our outfits on the Seventeenth of May!

LA POP 2Join us in spreading the word all around,
Lupus is auto-immune and everywhere found.
Especially in women, and in minorities we know
That lupus is always more likely to show.

LA POP 3Help us today, all your colors display,
Pursuing the cure that will end our dismay.
Raising awareness and spreading the word,
Until all who have lupus can someday — be cured!

© Lupus Adventurer ~ May 17, 2013

Put On Purple ~ Blogger Hall of Fame

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http://queen-of-arts.blogspot.com/ wearing purple in support of friend Melissa who has lupus

Lupus Truth No. 17 – Drug Induced Lupus is Reversible

Coping with Lupus: Drug-induced lupus is a lupus-like disease caused by taking specific prescription drugs.

Drug-induced lupus is reversible!

The Lupus Foundation of America (LFA) reports that “drug-induced lupus accounts for about 10 percent of all lupus cases and is caused by high doses of certain medications. The symptoms of drug-induced lupus are similar to systemic lupus; however, symptoms usually subside when the medications are discontinued.”

To learn more about this lupus fact, please read my post from  May 17, 2012.

Lupus Fact & Blog of the Day No.16 – Discoid Lupus & Molly’s Fund – More than a Blog

Lupus Awareness Blog No. 16 – Molly’s Fund Fighting Lupus & Molly’s Blog

On the capitol steps680x260

Oregon recognizes May
as Lupus Awareness Month!

Today, we turn the spotlight onto Portland, Oregon and Molly’s Fund and Molly’s Blog.  Molly was in her twenties and just beginning a promising career as an opera singer.  She suddenly became ill with multiple infections and overwhelming multi-system health problems that severely interrupted her ability to perform as a singer.  After a very rough year and several doctors, she saw a rheumatologist who diagnosed her lupus.  After her diagnosis, Molly and her mother co-founded the beginning of Molly’s Fund.

Molly’s Fund Fighting Lupus is a noteworthy regional non-profit foundation in the Northwest United States that seeks “to educate the public about lupus, partner with the medical community to push for earlier, life-saving diagnosis, and to spur governments and foundations to fund research toward a cure.”   They sponsor annual lupus awareness campaigns in Oregon, Washington and Idaho, and give 90% of the funds they raise to outreach and support programs.

Annual lupus awareness events Butterflies In the Park and Serving Up Style and other events and programs draw attendance of over 20,000 people in the Portland area each year, while raising funds to support earlier diagnosis, patient support and advocacy, and a client assistance program.   They sponsor support groups in the Pacific Northwest area of the United States and offer weekly online support groups — one for patients and one for family, friends and caregivers of lupus patients.

Molly

Molly’s blog @ www.mollysfund.org/blog/

“As I am able, I will share with you my personal journey and challenges with lupus.  I know first hand how difficult dealing with lupus can be, and the unique struggles you may be facing.  My blog is about sharing and I will do my best to give you  insights, hope and support.”

Lupus Truth No. 16 – the most common type of lupus is discoid

Coping with Lupus: Discoid lupus (the most common form of skin lupus) accounts for about 10 percent of all cases of lupus and occurs in 20 percent of those with systemic lupus.

My discoid lupus was most pronounced before I began taking Plaquenil, and after this first baseline drug treatment started, my rashes cleared up on my face, eyelids, ears, hairline, scalp, chest, arms and thighs.

Now, occasionally a few discoid rashes develop between my fingers, on my forehead or cheek, neck or my hairline.  They are treated with topical prescription steroid creams, and heavier application with cotton gloves at night.

Scaly Rash, Steroids and Softening Sugar Scrub

A recent discoid lupus rash outbreak on my hands has been especially hard to get under control and kept spreading to larger areas of my hands over about a two month time.  The intensely itching and burning rash circled my fingers and was crusted and flaking constantly, so the dry thickened surface was making it hard to get steroid cream to the active layer of the rash underneath.

Every time I washed my hands or got them wet in the kitchen I was wincing, and the skin was beginning to get extremely fragile and crack open multiple places and bleed.  I was bleeding onto things I touched all day long, no matter how much hand lotion and steroids I applied.  I was slathering on the prescription steroid cream, but it didn’t seem to get through the surface of the dry itching rash and was doing very little good.

baby and butterfly hand

Longing for
baby-soft hands

In desperation, decided to try gently rubbing a hand manicure sugar scrub sample I received at the beauty supply store on Mother’s Day weekend over the rash to remove the dead skin from the surface of the rash.

It was unexpectedly soothing, and gently softened and removed the dead, dry cracked surface of the exposed rash – allowing me to apply the steroid cream directly to the fresh soft surface of the rash underneath, without dead skin layers in between.  The sugar scrub did not irritate or make the rash more raw, and had a surprisingly immediate healing effect.

Now, the steroids I am using on the rash are more effective and my rash has quieted down.  Within one day of using the sugar scrub, it was much improved and stopped intensely itching.  The aggravating pain and raw, cracking rashes on my hands, quickly began healing and reducing.

I repeated light application of the sugar scrub the next day to remove the overnight buildup on the rash surface, and this again helped me get a more effective application of the steroids to the rash.

It has now been 3 days since I first used the sugar scrub before applying steroids, and I can hardly believe how much the rash on my hands has healed.  It no longer hurts or itches, and has stopped spreading.  The only crusted areas are the spots that had involved deeper layers of my skin, but even those are finally healing and improving.

To learn more about this lupus fact, please read my post from  May 16, 2012.

Tomorrow it is finally time to POP — Put on Purple — for Lupus May 17th!

Remember to don your head-to-foot purple colors to “POP” — Put on Purple — for Lupus tomorrow, Friday, May 17th!

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