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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!

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Book Review: The Lupus Encyclopedia

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.

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!

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Your help is appreciated!

 

Benlysta for Lupus after 33 Months

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33 months of Benlysta

This week marked 33 months of Benlysta infusions for my lupus, adding up to almost three years of taking the only FDA approved biologic medication just for lupus.  Over these past few years, we have seen my lupus gradually quiet down greatly.  This was time well spent on accomplishing a good, but expensive outcome!

So, after contemplating the amount of time that has passed since I started the infusions, I mused over some mental calculations considering other accomplishments that might have taken comparative amounts of time.

Long enough to  build the Titanic

Build the Titanic

Although the past three  years haven’t exactly sailed right by, it would have been more than enough time to carry out one of these feats:

Build the Titanic –  perhaps if they had spent longer in dry dock strengthening the hull of the ship, it would still be afloat today?  I am glad to still be afloat in my career and personal life, thanks to good lupus medications and treatment.  I am grateful that I haven’t completely crashed, burned and sunk, although I came nearly too close to the reefs of prednisone withdrawal at the holidays!

Master a new language – the linguistic experts all say it takes about 2  years to learn a new language by immersion, but learning a language strictly in a classroom takes at least twice as long or more.  However, I have definitely learned the new language of lupus auto-immunity and infusion speak!

Earn a college degree – It takes about three years to finish the course of study for an accelerated bachelors degree, to complete law school or medical school, or to complete a medical residency after medical school.  The only third degree I have received in the past two years was from my previous doctor, when he wanted to know why I wasn’t exercising enough!

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Sail around the world

Sail around the world – most small ocean cruisers take two to three years to sail around the world.  Although some accomplished sailors have done it in less than a year, some have even taken as long as ten years to carry out this challenging nautical adventure.

Launch a new company or rebrand a product – many experts of business say that it takes at least three years to redefine the image of a company or product, or successfully launch a new one. (There’s the nautical theme again!)  New business ventures are generally considered a 3-year journey.

Drift ashore after circling the entire Pacific Ocean several times –  an incredible three years after the tragedy of the tsunami in March 2011, a little battered boat was found overturned on the shore of Daren Township, Taitung County.  Somehow, this reminded me of the “three-hour tour” of the Gilligan’s Island television show of the 1960s, except that it took three years instead of three hours, and this boat washed up on the beach unmanned.  At least my nautical comparison holds up, in that both were both waterborne vessels, but maybe that is stretching it just a bit.

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Asparagus, 3rd year from seed

Plant and harvest a new asparagus bed – it only takes a mere three to seven years to produce harvestable food from asparagus plants started from seed.  The only thing that ever grew in the asparagus bed in my mother’s yard was a stilly cat that planted herself in it, rolling over on each new sprout and hiding from birds in the dappled feathery shade.  If my mother hadn’t loved the cat more than she loved asparagus, I’m afraid the cat would have been planted in the flower bed instead. My three-month old garden yields Romaine lettuce, spinach and chives this spring, producing faster than we can eat it, but alas, no sign of hard-to-grow asparagus!

Become a not-quite formidable opponent – It takes from 3 to 5 years to attain the first belt in karate, and about the same amount of study under a karate master to gain each additional belt after that.

I think I’ll stick to milder athletic competitions, such as tackling a day’s work, grappling with laundry, subduing a sink full of dishes, navigating the grocery store (nautical theme, again!) or whipping up some supper on a breezy spring evening.  Karate sounds too much like hard work to keep my attention for three years.

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3 years to a calmer harbor

So, instead of spending several hours every fourth week of the past 33 months getting Benlysta infusions, I could have accomplished any one of these other illustrious adventures… (or not!)

But on second thought, the investment in Benlysta infusions for my lupus was proven a very profitable one, and has helped me arrive in a much calmer, safer harbor (one last nautical quip!) than I would have otherwise been likely to reach.

[I realized today that I had reversed the order of the words in the title of this post, and instead of the original “Lupus for Benlysta after 33 months” that didn’t make sense, I correctly renamed the post “Benlysta for Lupus after 33 months.” LA 4/1914]

 

 

Getting good news of seemingly quiescent lupus

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Develop a good doctor-patient rapport

Developing a good relationship with our doctors is critical to effective management of lupus.  The second appointment with my new rheumatologist went very well, focused on reviewing the battery of lab tests done a few weeks earlier, and communicating a quick update of current symptoms.  My health has continued to stabilize and improve since a failed steroid withdrawal crisis three months ago.

lupus biomarkers

quiet lupus biomarkers

We discussed the surprising news that all my lupus biomarkers had become very quiet.  Because of my very long history of lupus activity, this means my lupus is now under good control.  However, we talked about the present but improved recent recurring mouth and nasal ulcers, arthritis, fatigue and mild cognitive challenges I have had since my last visit.  She also explained her interesting supposition — in the absence of my medical history — if I had been a new patient coming to see her with such good blood tests and quiet lupus biomarkers, she would never have suspected I had lupus!

This quieter lupus is a blessing, attributable in part to important medications: an appropriate daily dose of prednisone, continuation of long-term daily plaquenil (for over fifteen years) and two and a half  years of monthly Benlysta infusions.  My lupus is now under better control than can I remember in a long time. It is hard for me to know how much the decision to stop prednisone withdrawal factored into this, but removing the confusion of steroid insufficiency symptoms from the mix had to have helped.   Now that I am getting adequate prednisone, everything else seems so much better, too.

Quieter lupus...

Quieter lupus…

We still don’t know if I will eventually be able to get off prednisone completely.  Although we discussed the possibility of dropping from 7 mg of prednisone to 6 mg, for now we agreed to wait a little longer to try that.  Frankly, I am a little “gun-shy” to give it a try yet and am being very honest with my doctor about this.  However, I am determined to be a compliant patient, and will coöperate with my doctor if she decided I should try prednisone withdrawal again.  But, I’ll just need to have assurance beforehand that my doctor is accessible and will check any problems as they arise.

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Hiding from the sun…

My doctor explained that she doesn’t usually recommend lupus patients attempt getting off of steroids in the winter, when they tend to have more flares following increased summer sun exposure.  She asked if I get rashes after being out in the sun, and my answer was, “no, because I no longer go out in the sun for more than a minute or two,” adding, “if I would, then I would!

This exchange made me think about how many of us have made radical changes to our lives to accommodate our lupus, in our attempts to keep the upper hand.  There was a point in my life when I would have been horrified by the idea of an illness that prevented enjoying the great outdoors on a sunny day.  Now, I never spend any time in the sun, not at all.  So, now I guess I just take this loss in my stride, while even perhaps being a little thankful that at least I know I must avoid the sun to stay well.

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Triple stress: a perfect storm

My doctor asked a question about recent major stresses in personal or professional life, and we discussed a trio of extremely stressful work situations in my government law office management responsibilities.  While I cannot talk about the confidential issues themselves, I could explain the type of uniquely and intensely stressful situations I’ve handled over the past couple of months.  Describing how these overlapped in their impacts on me mentally, physically and even spiritually, they have truly been what she aptly described as “the perfect storm.”

It has amazed me that I’ve been able to manage these three intensely stressful professional situations, while also working long hours while compelled to search for uncommon wisdom and insight to resolve them. Although there have been a few moments when I thought I would, at no time did I buckle under the weight of these challenging responsibilities.

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He gives more grace
when burdens grow greater

For this, I am grateful, and thank God for hearing my prayers and allowing me to graciously borrow a drop or two of His wisdom in the midst of the churning cauldron of stress.

A couple of take away thoughts at this point in my lupus adventure?   My biomarkers may be quiet, but the ongoing presence of mouth ulcers, arthritis, neuropathy, fatigue and CNS issues still continue to tell me my lupus is there.  It may be quietly lurking in the background for now, but it is still there.  My challenge now is to keep lupus suppressed and less prominent and less disruptive than it was in the not-too-distant past.  This is truly a part of the great and often unpredictable path of our lupus adventure.

Benlysta Infusions for lupus at a fraction of the price

52028530For two and a-half years I have been blessed to be able to receive Benlysta infusions for my lupus.  Every month, I went to a hospital all the way across town.  My employer-funded health insurance required that the infusions to be given in a hospital, and not at my previous rheumatologist’s office.  After recently changing doctors (leaving my out-of-network rheumatologist to start seeing a doctor who participates in my HMO plan,) out-of-pocket office visit costs dropped by $90 each visit.

The rest of the story?  Someone besides me is saving money, my self-insured employer is saving dramatically more!

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Really? What a thing to be “famous” for!

My local government self-funded health insurance plan has a major insurance company serving as their TPA.  Now, they are paying for my Benlysta infusions at my new doctor’s office, instead of requiring me to do it at the hospital.  I never understood why they insisted I get them where it cost so much more.

Yesterday was my second visit with my new doctor, when she told me I was “already famous” in the Benlysta world.  I looked at her quizzically and asked, “really?”

She explained that she called the Benlysta “people” to coördinate my infusions, and once she started telling them about her new patient, they already knew all about me.  When they heard from her that I had been getting infusions at a hospital before coming to her, they knew immediately who I was!   They asked who my former doctor was, and sure enough, they confirmed it was little old me they were all talking about.

Photo by LA's Daughter-in-Law © 2013

Feeling weird about “fame”!
(Photo: LA’s Daughter-in-Law © 2013)

I have to say, this realization made me feel a bit weird.   I guess they all had a conversation discussing the novelty of my situation.  If I remember her story correctly, they told her I was the only patient they knew who had to get Benlysta infusions at a hospital.  Then, I filled her in about how much better the in-office infusions were for me and my employer.

As we discussed costs, it astounded her that the hospital had charged three times the normal price for the infusions.  Now, instead of the $13,000 the hospital charged for my January infusion, the total cost to my insurance company for February’s in-office infusion was about $3,500!  Even at this lower (normal) price, Benlysta is expensive, just like other biologic drugs.  The astounding extra my insurance paid over the 2.5 years I’ve got Benlysta could have totaled as much as $250,000 to $285,000!  All I can say is, “wow.”

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No more parking costs!

Although there were no copays at the hospital, now there are office visit copays of $35 for each infusion.  I can handle that!  Since I no longer have to spend money on gas to drive clear across town twelve times each year, or to pay for parking at the hospital, everything should pretty much be a wash in my out-of-pocket expenses.  Eliminating parking fees for a year will pay for 4 of the infusion copays!

The real bonus is to my self-insured employer.  The lower infusion costs will save an annual amount that could pay for at least two standard clerical co-worker salaries.  As a serious public servant and steward of taxpayer money, that pleases me greatly.  I guess the number-crunching bean-counter part of me that manages my department budget is doing back flips over this realization.

In a post-recession economy, where you get Benlysta could really make a big difference!

A new lupus adventure in Benlysta infusions

Resuming Benlysta Infusions

Resuming Benlysta Infusions

This past week marked the restart of Benlysta infusions for my lupus under the care of my new rheumatologist.  For the first time since my lupus diagnosis two decades ago, I am seeing a new rheumatologist.  My new doctor participates in my employer’s group insurance plan and has an in-office infusion center covered by my insurance.  After 2.5 years of Benlysta, my infusions resumed with a mere 6-day lag required to get new prescriptions, get new insurance authorization and coördinate the transfer of my infusions to the new site.

From full-cash pay to HMO rheumatologist

In the past, seeing a doctor outside my insurance coverage meant paying full cash price for the entire cost of office visits and I did this for many years.  Although my earlier specialist was a première rheumatologist of great skill and knowledge, I felt strongly it was time for a change and for lowering out-of-pocket costs for my lupus treatment.  Although my insurance had no problem covering prescriptions written by my out-of-plan doctor, they would not cover his office visits, other procedure or infusions at his in-office site.

Infusion Center Hospital

In-Hospital Infusion Center

Instead, they required me to receive my Benlysta in a hospital outpatient infusion center covered by my HMO.  All along, I thought this was my carrier’s policy for all infusions, but learned only recently that this hospital limitation was specific to infusions prescribed by out-of-plan physicians.  Now, bringing all my rheumatology care under the HMO, it looks as though I’ll have no charges for infusions unless I see the doctor, too.  The Benlysta copays assistance program covers the actual drug copays.

Now, with my new doctor’s office so close to home, infusions may fit into my schedule during lunch breaks on Fridays while telecommuting from home.  During infusions, I’ll be able to use my work laptop to connect over the Internet to my office.  My previous rheumatologist and infusion locations were both a half-hour from my home, usually requiring a full hour of driving time, plus infusion time and doctor exams, requiring me to use a half-day of sick leave each time.

Slashing the medical miles

With only 3 minutes to travel to my new doctor and infusion site, sick leave used for treatment should drop dramatically!  Because of recurring moderate flares and plenty of bad lupus days,  most of my annual sick leave gets used up just about as fast as I earn it. Add to that a few “normal” non-lupus sick days, and I generally need all the leave time I can bank up.  My vacation days for “fun” get cut short using it to make up for sick leave I’ve exhausted.

butterfly clockNow, with most of my medical travel time almost eliminated, time off work for infusions is serious shortened or eliminated.  After some quick math calculations, I realized to my delight that I may conserve vacation equal to 8 days each year that I previously took off to go to the rheumatologist and to get infusions.  12 half days for infusions + 4 half days for the rheumatologist = 16 half days of sick leave (usually taken as vacation leave).

Wow, that’s a lot of time I’ve spent in my car and at treatments away from work… almost a whole day per month!

Is there a problem or two?

First, I didn’t get to say goodbye to my nurses at the hospital where I was getting my infusions for the past two and a half years.  I will have to go back and drop in on them with some flowers and a plate of brownies.  I want to thank them in person for their kindness and genuine concern.

Next, there will be the challenge of deciding how to spend my re-found vacation days!  It won’t be hard to select a couple of enticing destinations.  Perhaps head out on a new, exiting lupus adventure?  Do a little butterfly photography at Spring Butterfly Exhibit of the local Arizona Desert Botanical Gardens or the nearby Butterfly Wonderland? Perhaps, go to the mountains or visit my grandchildren?

Now, I’ll get to decide how to spend the recouped 8 days, instead of my lupus deciding for me!

A thank you is in order!

Thank you to these smiling infusion nurses who helped me every month.  I will really miss them!

Infusion Center Nurses

My Smiling Infusion Center Nurses
Thank you for 2.5 years of awesome care!

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