One Patient's Positive Perspectives

Reflection
Taking time to reflect on grief

 

Keeping up with a very busy life along with having lupus is always a huge challenge, and takes planning, consideration and careful management to prevent becoming spread out too thin.  Always mindful of sudden flares, and cautiously navigating within ever-changing boundaries is part of the lupus journey and adventure.

My life is usually very full just managing family, career, lupus, music performances and my writing.  Before my dad passed away, at least four other major things were also in the mix:  participating in a local Lupus walk planning committee, some ongoing major home renovations, a couple of highly stressful and unusually challenging work projects, and participating in a Benlysta clinical trial of weekly self-injections.

These extra things meant plugging in plenty of extra goals and activities.  Honestly, I thought I could handle it all.  Adding the clinical trial recently meant more doctor appointments and follow ups, and planning my weekly injections and filling out the simple patient log.  A year ago I had signed on with my Lupus Foundation contacts to build a walk team and contact a group of local professional contacts to promote the upcoming walk.

Our home renovations have been slowly moving along, but the stress of a household in flux that adds some psychological chaos and stress to the mix.  Then, just when the heaviest portion of the major work projects was in full swing, my dad died on Friday, July 4th.

When eternity knocks, life stands still.

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Plant from coworkers

After dealing with mandatory arrangements in the first few hours after he passed away, I had no choice but to call in to  work out for a “time out.”  It really didn’t matter what other work responsibilities I had, nor even how important any of it was.

First things first, my life ground to a halt.  It was time to erect a temporary protective perimeter so I could stop, slow down and start to cope with grief.  Without apologies, I called my office to start there and speak with my boss about taking bereavement leave the following week. My major work project was immediately put on hold until I got back to work.  This was horribly untimely for work commitments, but I was so grateful for the support I received at my office for my need to deal with my loss.

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Returning to the office

A week later when I returned to my office, one of the most difficult emotional and mental tasks I have ever undertaken was to focus through my grief and complete my professional writing responsibilities.  I still had to finish a complex and heavily analytical major report.

There was no way I was anywhere near over my grief after only the first week had gone by, but I had to exercise extreme discipline and force myself to work through it and complete the huge project.  There were major legal issues involved, and the project was not something that could wait more than the week’s postponement or be delegated to someone else.

I had regained barely enough objectivity to be able to do the writing task, but it took twice as long as it would have if I had not been in the middle of the extreme emotional distractions of grief.  In all honesty, I really just wanted to check out of all my responsibilities for the next few weeks and go sit by a pool somewhere with my thoughts and drink lemonade!  Consequently, every half hour or so, I had to throw up my hands in emotional surrender and  stand up and walk away from my desk.  Each time I took a mental break and allow my heart and mind to reset I was able to sit down again in a few minutes and focus for another session.

It felt like my efforts on the writing project were actually unwelcome thirty-minute recesses from processing my grief.  I am not sure how, but it got done, and we finally completed the difficult drawn out project.

My highest priorities have sorted out and family, conversations with siblings and people in my inner support circle, and dealing with dad’s financial and legal affairs have taken obvious precedence.  Life stood still for a few days during a week of bereavement leave, and then after the big push to complete “the project,” many mornings in the following few weeks were borrowed from my normal work schedule to slow down, deal with emotions, take care of family things, meet with bankers, lawyers, government agencies, funeral directors and handle other urgent family business.

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Hired a probate lawyer

Quickly, without any hesitation, a lawyer was hired to handle the probate of dad’s estate.  Although I started out my career as a paralegal and worked in probate for three years, I wouldn’t think about doing the legal stuff myself.  Even with my lawyer handling all the court paperwork, I have many duties as executor of his estate.

Wow!  These details are consuming!

Although I have drafted hundreds of wills, trusts, probate court documents and deeds of distribution in my career, I have never seen an executor’s side of the process.  I already knew what my attorney had to handle, but my side of all this probate business is a new experience.

Taking time to pray

Taking time to pray

I have found there just isn’t time for some of the things I had set out to do before my dad died.  I am making a point to take time to think about what I am going through, and to talk to God about my feelings and grief.

I often remember the last day and the hours I spent at my dad’s bedside reading the Bible to him, and Psalm 23 was one of the last things I read to him.  The words spoken to him hover in the backdrop of my memories, and that last conversation and prayer  as I sat beside him.

Writing, Lupus Foundation activities and even little personal things like taking time to go get a manicure and pedicure have been brushed aside without a moment to consider how to do them!  I am finding it hard to sleep, and have been sleeping in too long in the mornings after I don’t sleep well.

Today, I finally made it to the hairdresser for a color (I should say “cover”) and cut. One by one, my habits and routines are being re-established.  Grief and loss are still there, but the wounds of grief heal slowly.

Stress of loss

Stress of loss

The stress of loss

Losing a loved one is hard on everyone, and it seems we can never be ready for it.  Over fifteen years ago mom passed away unexpectedly, and now my dad has gone after a four-year battle with Alzheimer’s.  Although I thought I was adjusting to the idea, and in a way I was already grieving the loss of my father as I knew him before Alzheimer’s, it feels different than I thought it would.

It is just difficult any way you look at it.  When people you love are gone, it leaves a vacuum where a warm loving soul once was in your daily life, and it hurts.  With a deep ache beating in your chest, your heart sobs in silence.  Pain is stressful, whether the cause is physical or emotional, and that stress has predictable influences on health.  Stress can weaken us physically, weaken our immune system, or aggravate an auto-immune disease, such as lupus.  Sustained stresses like grief, stretch out their load on the normal endocrine balance, that is already somewhat out of whack when a person has auto-immune disease.

Fight or Flight

Fight or Flight

The part of our body chemistry that produces a surge of helpful chemicals to sustain us during a fight-or-flight situation or crisis, becomes very strained during periods of prolonged, sustained stress.  This crisis mode response can only continue for limited time, while glands pump out “emergency” help.  After a while, a body’s chemical response to continued stress becomes weaker and weaker, and the person experiencing sustained stress has a seriously reduced ability to cope in the face of continued pressure.  For someone with lupus, ongoing presence of stressful situations become the perfect environment for lupus to flare.  So, it becomes especially important to communicate well with our doctors about the major life events we are experiencing and about how these stressors are impacting physical health.

The storms of life

The storms of life

The storms of life

Over the years, many helpful articles about employees going through life’s most stressful events have passed over my desk in human resource magazines and legal management journals.  Usually they merit at least a few minutes of my attention, since employees routinely drop by my office, sit down with a sigh opposite me, and start to talk about the major events taking place in their personal lives.  Sometimes, employees have multiple stressful events raining down on them at one time, and some face virtual storms of stress, and even rarely an occasional emotional or spiritual hurricane!

My heart goes out to these burdened co-workers, and I privately pray earnestly for them, because I know personally how hard it can be to cope when flood waters of stress wreak havoc and bring unexpected mayhem.  It is no wonder these overwhelming events are commonly called “the storms of life.”

Stress affects people physically

The different responses people show to these events get my attention, and often I’m motivated to start a conversation about what they are experiencing.  Ever since reading an article years ago about how stress affects people physically, I have been especially focused on how it impacts employees, friends and others in my personal life when they go through unusually stressful circumstances.  What I see most often is employees who struggle with either the severe illness or death of a family member, face surgery, are moving, their spouse has lost their job or they are having turmoil or difficulty between members of their household.

I too, have had my share of these stressful situations, and some of these have triggered past lupus flares and at times some lasting escalation of lupus severity.

Measuring the stress of life’s events

Measuring Stress

Measuring Stress

A couple of research psychiatrists, Thomas Holmes and Richard Rahe, studied over 5,000 people to understand better how stress affects health.  They developed a time-honored list of the most common stressful life events that people routinely face, assigning a “stress score” to each type of stressful event.  The total score falls into one of three basic ranges of impact.  People with lupus or any other auto-immune disease may easily find that their stress score indicates a moderate or high likelihood of illness.  The items on the list may seem obvious, but reviewing it was thought-provoking for me.

Striking up a conversation about the effects of stress on people who are going through rough times usually starts by mentioning that they are experiencing one or more of the major stressful life events on “the list:”

Life Event Stress Score
Death of a spouse 100
Divorce 73
Marital separation 65
Death of a close family member 63
Imprisonment 63
Personal injury or illness 53
Marriage 50
Dismissal from work 47
Marital reconciliation 45
Retirement 45
Change in health of family member 44
Pregnancy 40
Business readjustment 39
Gain a new family member 39
Sexual difficulties 39
Change in financial state 38
Death of a close friend 37
Change to different line of work 36
Change in frequency of arguments 35
Major mortgage 32
Foreclosure of mortgage or loan 30
Change in responsibilities at work 29
Child leaving home 29
Trouble with in-laws 29
Outstanding personal achievement 28
Beginning or end school 26
Spouse starts or stops work 26
Change in living conditions 25
Revision of personal habits 24
Trouble with boss 23
Change in residence 20
Change in schools 20
Change in working hours or conditions 20
Change in church activities 19
Change in recreation 19
Change in social activities 18
Minor mortgage or loan 17
Change in sleeping habits 16
Change in eating habits 15
Change in number of family reunions 15
Vacation 13
Christmas 12
Minor violation of law 11
TOTAL EVENT RELATED STRESS SCORE:

Add up the numbers of stressful events that apply to you in the past two years to get your own score: _____

th3SLP7QUMHow might the level of your life stress be likely to effect your health?  If you are a lupus patient with active disease (53), high medical costs (38) and have lupus affecting your ability to keep up with recreation (19), your social life (18), and pain keeping you from sleeping well (15), you could easily have a score over 140.  Add just one more event on the list, like moving (2) or getting pulled over for a traffic ticket (11) and you have a moderate risk of illness.

Score of 300+: At risk of illness.
Score of 150-299: Risk of illness is moderate (reduced by 30% from the above risk).
Score <150: Only have a slight risk of illness.

Read More about the Holmes and Rahe Stress Scale @ Wikipedia.

The speech about stress

Down-to-earth advice

As the manager of a government legal department, when an employee goes through these rough times, one of my roles is to approve sick leave, bereavement leave or vacation, or to encourage them to otherwise take care of themselves.  After pointing out that they are going through one of life’s most stressful experiences, the advice is usually down-to-earth and pretty simple: 1) breathe, 2) drink, 3) sleep, 4) rest and relax.

Why?  Breath deeply, because so often people seem to psychologically hold their breath during intense stress, and deep cleansing breaths help reduce the effects of stress.  Drink plenty of water because it helps the brain function, supports the immune system and flushing out toxins from the body (usually I am the one who goes around offering glasses of water to everyone.)  Get enough sleep and rest, because stress is exhausting and emotionally fatiguing, and lack of sleep just increases stress even more.  If proper to my relationship with the person, I also suggest prayer, Bible reading and hymn singing in the times when sleep just doesn’t come, because finding spiritual rest through these alternative activities can help in the absence of sleep.  Rest and relax, because they need to be reminded to give themselves some slack and to realize that what they are going through is a normal human response to stress, and to be expected.

thRTKMIR17Every new employee we hire gets a similar version of this speech as part of their orientation, along with explaining that almost every employee we have hired in the past 25 years (except one exceptional person who either listened especially well to my advice or was just an rare physical specimen) became sick within their first month on the job.  Every employee gets the speech again as a friendly reminder, every time they go through something on the top half of the list, or any combination of things from anywhere on the list.

This type of stress seriously affected my health many years ago.  Just one week after my mother died, my father and I both visited his doctor to treat our severe bronchitis.  Grief and bronchitis do not go well together!  During the year that followed, I was naturally still grieving deeply, and that normal process had its impacts on my body and my lupus.  Within a few weeks after losing my mother, I was hospitalized with a ruptured abdominal artery, infected appendix and ruptured ovary (a very close call!) and within six more months my spine destabilized around an old trauma (and required neck braces and neuro rehab) while my lupus escalated to organ (CNS) involvement.  Within just one year of mom’s death I had graduated from treatment with only plaquenil to requiring adding weekly methotrexate, daily high dose prednisone and Imuran (azathioprine).  For ten more years, my medications never could be rolled back to the earlier levels, and eventually even those would no longer control my lupus.

Four resolves in grief

So, it is time to follow my advice.  My hope is that as I now grieve my father’s death in the coming weeks and months, the advice repeatedly shared with others will ring in my own ears and hopefully may help me remember to grieve healthfully.  These are my four resolves…

breathe

Breathe, hydrate, sleep, rest and relax!

First, I will breathe!  Taking long draughts of air, in and out, deep and full, inhaling, cleansing, body-calming breaths.  I will take my asthma sprays on schedule, and listen for my body telling me when it is having trouble, and I will make a point to intentionally breathe.

Then, I will hydrate, hydrate, hydrate.  Easy to say and harder to do.  But now, there is no fluid better for me than the cleansing goodness of pure, refreshing water.  I will carry it with me in the Arizona heat as I drive around, at home or work pour another glass often, and even set a timer if necessary to remember to drink water.  Eight ounces every hour, would not be too much water!

Next, sleep is the hardest resolve to carry out right now, but I will keep working at getting the sleep I need.  Since lupus robs me of so much sleep when I wake up in the middle of the night with pain, this takes some extra effort.  Yet, I am promising myself to make the most of my opportunities to sleep.  This means I need to replace my broken c-pap machine as soon as possible, since I fall asleep faster, rest better and wake up less often at night when I am using it.  Using my c-pap for my sleep apnea helps reduce fatigue, and that’s a good idea, especially now.

Last, I know that prayer, Bible reading, singing hymns and playing them at the piano are forms of worship that can become a bridge to real rest.  When I simply cannot sleep, I will turn to these until I get exhausted enough to fall back asleep, and in the process find a different kind of peace and rest.

When emotional or physical pain robs me of sleep, there is no place like the shelter of the Most High to calm and comfort my weary soul!  In the shadow of His wings, I sing for joy!  Even in my grief, even in the valley of the shadow of death, I will fear no evil, for thy rod and thy staff, they comfort me.  These were some of the last words I read to my father from the Bible a few hours before he left us.

Now, they speak peace and health to my heart as I grieve and remember.

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Benlysta (belimumab) for Lupus

 FDA approved Lupus drugs

Clinical trials are an incredibly important contribution to new drugs for lupus.  Before 2011, there had not been any new FDA approved drugs for systemic lupus in over 50 years.  Before that there were only three, aspirin, plaquenil and prednisone.  Now, with Benlysta, there are four.  New biologic drugs like Benlysta are constantly being researched and we will likely have more soon.  We all hope it won’t take another 50 years to get number five!  In the mean time, there are still things we can do to improve treatment.

using autoinjector

Using Auto Injuector

One of the drawbacks to Benlysta is the great cost for the drug and the infusions.  It is mixed following exacting rules before infusion, taking at least thirty minutes to prepare.  Living within walking distance from my new rheumatologist, I am also within each reach of the research arm of the practice.  The practice is participating in a handful of lupus related research trials, including some patients from the first Benlysta clinical trials.  The next chapter of my lupus treatment will mean a break in the monthly infusion routine.

What comes next?

autoinjector practice

Practicing self-injection

After having my last infusion a few days ago, in about ten more days weekly self-injections of 1/4 the amount of Benlysta will begin to replace monthly infusions.  The next couple of months will be spent participating in a clinical trial to test an auto injector that delivers Benlysta as a subcutaneous injection.  Last week, I had my training in how to use the auto injector and shot (wasted) a whole real dose of Benlysta into a fake “skin” device to prepare for my first self-injection.  The plan is to do the first and two of the other eight injections under the watchful tutoring of the research nurse, and the rest of my weekly infusions are at home.

Official information about the clinical trial

GlaxoSmithKline’s Phase II Open-Label Single-Arm Study to Evaluate the Reliability of an Autoinjector that Administers Belimumab Subcutaneously in Subjects with Systemic Lupus Erythematosus (SLE)

The primary outcome of the study is to assess the suitability of the autoinjector for self-administration of belimumab by subjects with SLE in real-life conditions. The study will assess the use of the autoinjector inside the clinic setting and outside the clinic setting. The study will also assess the safety and tolerability of belimumab administered subcutaneously (SC) via the autoinjector. Subjects will self-administer belimumab SC into the thigh or abdomen using the autoinjector device for 8 weekly doses. Subjects will return for a follow-up visit 4 weeks after the last SC dose of belimumab. All injections will be assessed by the investigators for success based on direct observation and/or the subject diary. A total of 118 subjects (treated with at least one dose of study drug) are planned to be enrolled in this study. The study will last through mid-2015 and is being done in these cities:

Gilbert and Phoenix, Arizona
Lansing, Michigan
Charlotte and Greenville, N. Carolina
Greenville, S. Carolina

autoinjection sites

Benlysta injection sites

Nearly foolproof auto injector

It seems like this will be nearly foolproof.  I am no stranger to “Sub Q” injections, after giving scores of them the old-fashioned way helping my husband with blood thinning Lovenox injections.  After a bed-side crash course in his hospital room a few years ago, I became a pro at using short-needles with pre-filled injections, and jabbing him in the tummy to help stave off the return of massive blood clots.  I stayed pretty calm doing them, so I have no apprehension about doing them with an auto injector with Benlysta.  In comparison, the new auto injector seems like child’s play.  Just like many other “Sub Q”  injections, it is injected somewhere either in a U-shaped area around the navel, or in either upper thigh.

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Making a difference

Fewer flares?

Because with the monthly infusions I tend to flare during the last week, it will be great to find out if evening out the dose to weekly injections will help prevent the recurring monthly flare cycle. I will be keeping a journal as part of the study, so look for updates here, too.

It is my hope that by my participation I will help decrease the costs of getting Benlysta to the people who need it most.  One bonus?  During my participation in the clinical trial, there is no cost for seeing my rheumatologist, lab work or the medication.  Also, at the end of the trial, there will be a small stipend coming to me of $5o for each in-office visit during the study.  There is always room in my wallet for a little fun money!

Independence  Day

Four years ago his eyes looked out ahead for times yet to be,
Seventy-nine years from birth till then, but what came next he didn’t see.
Falls, confusion, miscued words, and soon a sudden turn,
Hospital, rehab, sixteen flights before daughter could home return.

He travelled far, a first class flight away from his lifetime home,
Living where helpers and aides would bathe, or help him use a comb.
Then doctors, surgeries, changes in health meant needing a different place,
Humbled and weakened, but stubbornly clinging to dignity’s final trace.

At first, decline was slow, but soon, escalating bit by bit,
next cane, then walker, then rolling around while having just to sit.
Memory, too faded out in stages, either gradually or by spurts,
Children, marriage and life forgotten, the watcher’s heart just hurts.

Daughter’s face was known at first, but then confusion grew,
“Are you my cousin? sister? mother?” at the end he had no clue.
The limbo land his mind dwelled in, imprisoned him in a lonely place,
A soulful gaze from forlorn eyes possessed his troubled face.

Last visits made, scriptures read aloud beside his quiet bed,
Everything saved but before unspoken, at last today was said.
Fittingly, it was independence day, a day when suffering would cease,
then sudden decline, soon slipping away to death’s last final release.

Many prayers offered over the years by children, grandchildren and kin,
That he’d find God’s forgiveness, mercy and love and be truly born again.
Where would his dying soul abide through eternity’s longest hour?
This secret is known to God alone, through His just and gracious power.

I love you Dad, goodbye.

By, Lupus Adventurer
© July 4, 2014

 

Dad and Me

Dad with Nate

Dad and Mom

Dad and the Family Budget

Dad in his mid 50s

Dad and his Uncle Wesley

Dad when I was 5 years old

Dad at his 80th Birthday

Dad at Work Pre-Computer Days

Dad with Mom’s Fragrant Cloud Rose

Dad in Navy – Flight Navigation

Dad Training Navy Pilots

Dad on Leave During Korean War

Dad with Lyle and Ariel

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Dad and Elisabeth

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Dad and Mom

 

I Forget It Can Bring a Smile!

Lupus and heart-healthy exercise

I Forget it Can…

Midway through workout at ten minutes time,
Limbs move in clumsy odd style.
But just a few more, endorphins arise,
I’ll remember why it brings a smile.

Veins whoosh fast at heart pumping rate,
Feeling better after just a short while.
Exercise done and moving is over,
I forgot it could bring such a smile.

Clammy hot skin now wet with sting,
Salty drops hit the living room tile.
Breathing so deep as pain quiets down,
I feel how it makes me smile!

bf flying and landing

Bring a Smile!

Amazingly better after moving just a bit,
An idea so tough to reconcile!
Pain just makes me want to stay still,
Because, I forget it can bring a smile!

By Lupus Adventurer
© July 1, 2014

 

 

Sleep/Rest Goals

Seeking Sweet Sleep

Sleep should never be taken for granted, or pushed aside as a necessary interruption.  It’s merits are poorly underappreciated and pursuit of it can be elusive and frustrating.  Yet, when it arrives uncomplicated and complete, in enough depth to last the entire night, cherish it, be grateful for it, and thank God every time it blesses you with a night full of true rest.  Such was last night!

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Morning Arrived Sweeter

This morning arrived sweeter, fresher and with little morning fog than any recent morning in the past few weeks.  Night after night sleep was interrupted barely before it began, with pain and neuropathy burning in my legs, and even in my fingers, complicated with the remnants of pain from falling on my hip last year.  Nights in succession were spent moving back and forth between bed, kitchen, office and living room, trying in vain to find a comfortable spot, and hoping desperately for the relief of sleep.

biblical perspectives

Meeting a Deeper Need

Yet, as each evening wore on into the small hours of the still black morning, eventually sleep would come in sheer exhaustion and weariness.  There is no book compelling enough to trade for the precious rest I sought, except perhaps the precious pages of scripture.  They, in their own powerful way offer a type of rest that sleep cannot touch, a type needed even more than sleep, meeting a deeper, soulful, ancient need.  They provide truth, words of life and pure rest to my spirit, and stay dear in the dark of a long sleepless night.

But, my frail, fragile, imperfect body still needs the rest of simple physical sleep.  For this sleep I have prayed, and for days the answer did not did not come until now.  Waiting, hoping, that the siege of insomnia brought on by sleep interrupting lupus pain would break, I prayed on.  Finally, the answer to this prayer came in the form of long hours of deep, mindless, dream-filled sleep.  A precious ten hours, one stacked upon the next until the tower of time reached the morning.  At last, sleep!

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Extra Hours of Sleep

Awakened in a start by my husband’s urgency, I selfishly did not mind that he had unintentionally slept through his alarm.  That meant the assurance of a couple of extra hours of sleep recovery for me!  Today marks the end of five days of intense morning brain fog, and the welcome blessing of waking to a rested morning.  Although long hours of sleep come with increased lupus joint swelling and stiffness, mental processes are quickly clearing of fog and the day promises to be a good one.

Today, my prayer shifts to grateful thanksgiving for the not-so-simple blessing of good sleep.

Psalm 63 6-8 Yellow & Purple Pix

 

 

Lupus Book Review

The Lupus Encyclopedia

The Lupus Encyclopedia

The Lupus Encyclopedia: A Comprehensive Guide for Patients and Families (A Johns Hopkins Press Health Book) by Donald E. Thomas, Jr., M.D., FACP, FACR, was recently released.  Within the astounding 43 chapters is an in-depth and exhaustive discussion of the many facets of lupus.  This book is for lupus patients, but is not a quick read, but between two covers holds a broad library of balanced lupus topics that are worthy of investing some time and study.

There is so much in this book, but where should you start?  Begin in the Preface, where Dr. Thomas sets forth seven specific steps a lupus patient may use right away to get the greatest benefits from his book:

  1. Go to the 3 page Lupus Secrets Checklist in Chapter 44
  2. Read the listed specific chapters Dr. Thomas recommends reading next
  3. Get a copy of your medical records, notes, labs, x-rays, etc.
  4. Skim interesting chapters to find and go back to spend more time on ones that apply most to you
  5. Consult the Patient Resources at the end of the book
  6. Visit Dr. Thomas’ Facebook page and follow him on Twitter for current lupus news
  7. Consider sending an email to Dr. Thomas with suggestions for future editions

After ferreting out reliable lupus information for more than twenty years since my diagnosis in the early 1990s, it really seemed there were few sources of fresh information about Lupus, without going to books and references written for the medical community.  This book provides an understandable reference resource appropriate for patients. Happily, there is great depth and much to learn from reading and referring to this important book!

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Check out this new Lupus book!

Dr. Thomas clearly demonstrates his broad understanding of Lupus, and this book should stand the test of time as one of the great books about this complex auto-immune disease.  The first printing of this exhaustive patient reference initially sold out in both hard and soft cover edition at a reduced price through Amazon.com but a few more copies are now available, and more are on the way.  It is also sold at BarnesandNoble.com in both cover styles and as a Nook e-book at the lowest price I have seen online so far.  If other sources are out of stock and you don’t mind paying full list price, purchase it direct from the publisher’s website at John Hopkin’s University Press.

I heartily recommend The Lupus Encyclopedia, and urge you to check it out, too.

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