Lupus and Longing for a Normal Life

Whatever normal is, it is not this!

Today was somewhat like yesterday, and but this month is certainly not starting out like last month did! After over six weeks of working mostly from home as a telecommuter, I am finally starting to get the knack of connecting with support staff and colleagues who are not down the hall from me. We have rediscovered the original purpose for telephones – conversation. But, it does not seem quite right to call this the new normal. Something in me just refuses to accept the idea of living in this state of isolation and social distancing forever! Perhaps it is more aptly described as longing for normal. Whatever normal is, it is not this!

The only office mates around our water cooler are my husband, often seated at his desk facing me from the other side of our home office, and a couple of twelve pound furry friends. Annie, our adopted rescue dog, has house privileges, unlike her dearest friend “Porch Cat” who adopted the three of us, perhaps because we came with a large back porch, an attractive patch of grass, and a few tempting flower beds. The cat unfortunately never learned house manners and is forever banished to the yard. He would likely wreck havoc on our leather couches and rugs. The four of us are quite a rag-tag workforce!

Normally, at this time of year I would begin conversations with co-workers at my office about their upcoming annual performance reviews, discuss their new goals for the upcoming year, and spend some time listening to their new ideas and suggestions. But, right now, no one wants to be that close to anyone else. It is hard to have a meaningful heart to heart conversation across a six-foot divide.

Perhaps instead, Annie and Porch Cat would like to have their canine and feline performance evaluated for determining their merit pay increases. Would they be more playful and fulfilled if they received an extra half-ounce of dog or cat chow daily in recognition of their essential contributions to the team?

But, I would have to guard against any demonstration of favoritism, remembering to give equal chow for equal work!

Whatever normal was, will it ever be like that again?

It has almost been a month since my negative COVID-19 test, the results received after recovering from a rough bout of mid-February bronchitis, and just in time for approval to go ahead with my March Benlysta infusion. I cannot remember spending this many days in my home, except after the birth of each of my children. There is much uncertainty, and I hear a common thread in the voices of my employees: fear of an unknown future.

Some events are like a plumb line or reference point running through the experience of everyone in a culture. For us in the U.S. who remember the early 1960s, we think back to answer the question, “Where were you when you heard that JFK (President, John F. Kennedy) was shot?” Although I was only five, I remember standing in my mother’s living room as she and other mothers from the neighborhood watched television and cried together. The other event is 911. My children and I stood dumbfounded that morning as we watched the news coverage of an airplane, and then a second fly into the New York twin towers. That moment we saw the towers collapse evoked emotions I will never forget, and hope to never experience again.

Yet, this will be all of that and perhaps much more. We will remember those we know who were infected with the novel coronavirus, and perhaps those who lost their lives to it. We will remember words forever that had not place in our vocabulary just eight short weeks ago, “social distancing.” We will remember how a booming economy shuddered and quaked as the world was swiftly overtaken by a pandemic unlike anything in our collective memories. This is the stuff novels and movies are written about, but not anything we ever thought would become a real experience in our own daily lives. There will be normal again, we can be sure of that, but it will not be the same normal as before. As a people, we are never the same after this type of shared profound experience.

Whatever this not-normal is, can it be good somehow?

So, what are we to do in the meantime? We have some choices, and how we navigate them will perhaps shape how this experience changes us. Some things we cannot control, and yet there are some things that we have a great deal of say about. We cannot choose all the experiences and trials that come into our lives, but we can make choices about our response to them. We may all sense our mortality in new ways, and perhaps a new humility from facing our lack of control of this disease.

Some of us are doubly at risk – immune compromised by lupus or other auto-immune diseases and also as risk because of respiratory conditions like asthma. For us, there is a greater threat from this life-threatening and insidious pathogen. But, should we live ever in fear of it? Maintain a very healthy respect for what it can do to me? Yes! Spend every day dwelling on fear? No way! But, taking every precaution to prevent becoming its victim demonstrates wisdom.

What to do then, with the temptation to fear? Dwell on the great love of God for you, and choose to trust Him. “In this was manifested the love of God toward us, because that God sent his only begotten Son into the world, that we might live through him.” I Jn. 4:9 “There is no fear in love; but perfect love casteth out fear: because fear hath torment. 1 Jn 4:18a

This trial we face, however difficult and overwhelming it may be, may have some positive effects in relationships with others and with God. When we realize we are not in control of events in our lives, we have the opportunity to remember that God is still in control. This is a humbling, vulnerable place, but God is there in the midst of every trial, protecting and leading the way through it.

In my life there have been three times that the moment of possible death blocked my path. In each of those moments, the soberness of mortality and the awareness of God’s presence consumed me. My heart’s cry echoed the words of Job, ” though He slay me, yet will I trust Him.” Each time, God delivered me, but I had no control of the outcome. That was up to God! My choice now is to trust in God, regardless the threat of COVID-19. I will strive to let this mindset of faith and trust be the substance of my normal life.

Lupus and Listless Grocery Shopping

We certainly don’t need tomato sauce!

We could stop right there with the article title and begin delving into the woes of shopping while listless, weary, and exhausted from lupus.  But, that sounds way too depressing!  With your permission, our musings can head in a different direction.  This idea is little about fatigue and completely about trusting my memory!

Recently, my husband consented to go along on a trip to Costco to buy many giant-sized packages of groceries to feed the five grandchildren (and their mom and dad) who are temporarily living with us.  Then, a quiet little “how can I possibly do that” panic overtook me when he responded, “okay, let’s go right now”.  There was no shopping list, and I didn’t have time to write one!  What mattered most was having a willing cart pusher and muscular package lifter to help.

Yes, there’s Plenty of Mustard!

Shopping listlessly (is that really a word?) with lupus is never a very good idea, mostly because of the well-confirmed short-term memory failures in my past.  Listlessness made me too likely to purchase items already on my shelf at home while forgetting to buy the things that are needed the most.  With my short term memory in a somewhat challenged state due to impacts of CNS lupus involvement, shopping with a well thought out list is usually a much better idea!

A nifty high tech solution suddenly popped into an otherwise not so clear brain.  Why not go through the kitchen and just take pictures of what IS in the cupboards, and then check the pictures on my cell phone if we cannot remember whether we need an item.  So, my husband patiently waited, smirked and chuckled a little while I went through the cupboards speedily snapping photos with my cell camera, and even held the fridge door for me for my impromptu visual inventory.  So after a quick dash around the kitchen, it was time to set out for some listless grocery shopping.  Had we stumbled upon a great new technique to simplify shopping?  Maybe not, but perhaps we could spend the grocery dollars a little more wisely than without the photos.

We always need bottled water in AZ!

As we headed out in my husband’s pickup truck, there were a few minutes between home and Costco for glancing at the photos to see what might have been on a list if one actually was written.  Soon, we were walking up and down the Costco aisles filling the cart.  Believe it or not, the “listless method” actually worked well.  During those moments of matrimonial debate about what we should buy, a photo became the final judge.  Why had this not occurred to me before?  There is nothing like virtually taking the kitchen along to remove uncertainty.  In one instance, mustard was at issue, but the picture of an unopened bottle on the shelf solved the question quite nicely.

While it is unlikely list writing will stop completely at our house, perhaps once in a while I will pull out this newly minted approach when time to plan is at a premium.  I can count on the perfect recall of my digital record in those moments when recall by my lupus challenged memory cannot be trusted.  We will put this idea on the “one more use for a cellphone” list!

Separating Systemic Lupus from Traumatic Injuries

Separating the Injury Claims

When a lupus patient has an auto accident, work comp injury, or some other personal injury where an accident insurance claim may be involved, sorting out treatment and claims can get pretty tricky.  Personal experience with these type of insurance claims provided some perspectives about working with doctors to sort out each new injury, and distinguish it from previous injuries and chronic illness.  The most recent auto accident that happened makes dealing with several issues fresh all over again!

Years ago, two different injuries resulted in insurance claims.  First, an auto accident followed a few weeks later by a fall down stairs at work.  Communication was the key to sorting out the differences between injuries.  Now, a recent auto accident was followed by a trip and fall at the shopping mall, and the same approach is needed once again.

Granted, with auto-immune illness, there are always many days with pain and discomfort, but new injuries seem to make coping even more difficult.   Day by day it has taken patience through the recovery, meanwhile remembering to ask God for the grace to be able to refrain from too much grumbling.  This too will pass, and the Bible says that the rain falls on everyone, so the storm becomes a little personal.  The new traumas also caused lupus to flare for several weeks.

Because of ongoing medical problems from chronic disease, communication with a doctor after a traumatic injury is very important.  Providing very complete, specific, and accurate information helped doctors and employers understand new symptoms and distinguish accident-related time off work.  Although several past accident injury claims were unfortunate, a few personal kernels of reality and wisdom emerged from the experiences.  While clearly not legal advice (which would be extremely unethical for this non-lawyer to provide), these personal observations may give some helpful insight to others patients with chronic illness who are facing a similar accidental injury situation.

Communicate Well with Your Doctors

Three foundational, if not simplistic, realizations:

1. Only medical problems clearly a result of the accident injury were covered by any of the claims.
2. Unchanged pre-existing medical problems were not part of the injury insurance claims. (Obvious but worth saying)
3. Flares of of pre-existing medical problems clearly triggered by the injury were able to be included in the claims, but only to the degree this diagnosis was included in medical records statements that supported how the autoimmune illness had worsened after the accidents, and because of the accidents.

Four conversations throughout various stages of recovery that it helped to chat with the doctor about:

1. Asking what percent the doctor thought recovery from the first accident was reached, right after the second accident happened.  This helped establish a milestone in the treatment that we would work our way back toward during recovery from the second accident.
2. Asking the doctor about how they thought injuries from the second accident were different than the first.  It helped when the doctor compared and contrasted between both injuries, and this gave clear information to use talking to both insurance companies.
3. If the doctor doesn’t mention the idea, suggesting the concept to the doctor of a “window” in the recovery from the first accident while the second accident recovery was in progress.  This helped work with both insurance companies to make clear agreement about who was paying for what and when.  This helped the first insurance company know what to expect, and to realize they would be resuming responsibility for medical treatment costs after the recovery milestone was reached.
4. Asking about total recovery in percentages after resuming the treatment just for the remaining first accident injuries, helped keep things straight with the insurance company.  Ongoing conversation about status of recovery with the doctor and claims adjuster helped keep everyone’s expectations and timelines clear.

June 14th is Flag Day – Happy Birthday, Sis!

After having a couple of previous injuries, three serious car accidents, a work comp fall down stairs on the job, and two slip and fall injuries, personal experiences helped clarify the impact of an accident injury on overall lupus condition and general health.  It seems that if both adjusters and doctors had not been part of the conversations during recovery, proving diagnosis of increased lupus activity due to the traumatic injury would have been much harder.  It seemed better for everyone to be involved in ongoing discussion about the degree pre-accident health had be reached.

Of course, with lupus or any autoimmune disease, there is no “back to normal”, but with good communication, it can become clear when near “normal” health was regained.  Each day, no matter what it brings, is a glorious new day to be alive, what ever “normal” ends up being.

Returning from East Coast Lupus Adventures

After all the fun traveling from Arizona to Philadelphia for the 2015 GSK Lupus Blogger Summit, life and reality always have their return.  The high point was stepping off the plane 10 minutes earlier than expected and calling on the cell phone to find out my husband was already almost at the airport.  It is so nice when you have those moments that remind you that the one you miss, misses you, too!  After leaving the east coast at noon it was eight when a suitcase and tired girl slipped into the pickup truck.

Hungry and tired, we stopped off at a coffee shop for comfort food, pie and a coke, did some catching up.  A friend was working last night, and waited on our table, and with the sodas, placed a fresh red carnation table in front of me with the gentle explanation, “a flower for you.”  That was sweet and a welcoming thought after a long, flight weary day.  Tummies full and spirits a little revived, we were thankful to be together and soon ready for the last five-minute trip home.

Exhaustion overtook both of us, and after a quick shower blasted away the grime of taxicabs, airports, and airplanes, sleep arrived almost instantaneously.  The night passed nearly as quickly, ending abruptly with the welcome smell of fresh coffee on the bed table beside me.  Leaning on the pile of pillows he tossed my direction from the nearby bench, eyelids drooped off to moments of sleep and husband’s chatter between sips from a warm caffeine-filled mug.

Unlike the night, morning moved very, very slowly, matched only by slow reflexes and even slower murky disconnected thoughts.  If ever there was a day to be tempted to call in sick with my lupus after a trip, this was it.  Unlike the sweltering sauna on the east coast, the Arizona desert morning was unexpectedly crisp and refreshing.  After kissing my husband goodbye in the driveway, the second cup of coffee led me through the house into the back yard’s fresh air and fragrant rose blossoms.

Delightfully, the cool morning breeze invigorated and refreshed, as deep draughts of blustery breeze wakened a sleepy set of lungs, slapping fresh life into the lupus fogged gal walking around the yard in my slippers!  The day began to look suddenly promising and worthy of pursuit.  The refrain actually passed over astonished lips, “Oh, what a beautiful morning!”  What a blessing to be home in my back yard!

Quickly gathering all the loose ends of hair, clothing, keys and a sack lunch, every thing seemed to tumble to the floor as a startling reminder CNS lupus might be a little flared from exertion and travel.  The reality of lupus limitations has a sneaky way of keeping a gal humble.

The commute drive was executed with extra care and attention, followed by a couple of conversations at work with obvious moments of difficult enunciation.  Mild lingering CNS difficulty lasted through mid afternoon, but finally the fog burned away completely.  Eventually, the morning song continued into later afternoon with, “Oh, what a beautiful day!”

Lupus and the adventure of finally finishing something

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

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 by Lupus Adventurer’s Daughter-In-Law

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

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

Finding an open door

Two important questions

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

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

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

Back on campus!

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

Lupus: “Dis”ability or This Ability?

Soothing Warm Dish Water

Washing dishes can hardly be described as an especially inspiring activity, but sometimes during such mundane activities a meaningful thought or two pops up.  So, what do you think about when you are washing dishes?  A couple of mornings ago waking in the first morning light of the chilly winter morning, there was pain.  Cold tiles on the floor chilled the bones of bare feet walking through the frigid dark kitchen.

A pair of stiff, swollen hands welcomed an excuse to soak in warm sudsy water and bubbles filling the kitchen sink.  Meanwhile, my cloudy morning brain struggled to connect.  Painful wet hands drew my attention to thoughts of personally disabling aspects of lupus.

These were not exactly the most upbeat morning thoughts!

Hands slipping into warm dish water almost seemed therapeutic, but the pressure of twisting a wet dishcloth inside a glass brought a painful wince.  Next, trying in vain to grasp and remove the lids from a coffee mug and thermos, after several tries, quivering tendons and stinging knuckles announced it was just time to give up!  With futile efforts abandoned, the stubborn cup and thermos would just have to sit there beside the sink all day, waiting to be opened by the male culprit to come home who had tightened them so firmly the previous morning.

While scrubbing the remaining dishes, amusing thoughts were running around in some foggy grey matter, threatening to stimulate and waken a foggy morning brain.

Disjointed thoughts formed into a series of silly word plays, tossed around during the simple kitchen chore.  Inspired without any clear reason by a glass, dishwater and lupus arthritis, these words scampered around as disjointed musings:

Glass half full or perhaps half empty,
How to be a victor not a victim?
Disability, dis-ability, dish water, dish-ability,
No!  This-ability, THIS ability!
Think instead about ability!
Now, there was a better noteworthy thought!

Image credit: http://lupusexperience.wordpress.com/

Even though many activities are painful for those of us with lupus arthritis, there are many activities that are nearly or completely unaffected by it.  These are what we should focus on and be thankful for.  The thought about half full and half empty glasses, and a silly dishwashing soliloquy had triggered an unexpected New Year’s resolution of sorts.

This year should victoriously focus on being thankful for “this” ability and “that” ability that I have, instead of giving the negative aspects of Lupus any undue attention. Perhaps we should be intentionally thankful while thinking of all the verbs (ACTION words) that describe many remaining abilities, such as:

• doing
• thinking
• walking
• playing
• sitting
• standing
• driving
• cycling
• cooking
• cleaning
• mopping
• sweeping
• working
• thinking
• writing
• rejoicing
• singing

What can you add to the list?

And yes, even washing dishes!

What are yours?  What positive actions would you add to your list?

It is resolved, then!  This is the year of this, that and every ability we have!

We can choose to celebrate the abilities we have, while striving to accept and minimize our disabilities with poise and grace.

[Note:  Paragraph two was edited after posting to correct the grossly disjointed sentence about a cloudy brain, written by a cloudy brain!]

Healthline.com Best Lupus Blogs of 2014

A few weeks ago an unexpected communication from an editor at Healthline.com announced that Lupus Adventures was selected as one of the top twelve lupus blogs of 2014.

So, naturally, the next thing to do was go check out the article “The Best Lupus Blogs of the Year” on their site and see what they had to say.

It was extremely heart-warming to read the kind review and to see Lupus Adventures recognized among such a great group of peer blogs.

The Best Lupus Blogs of the Year

Written by Ann Pietrangelo | Winners selected by Tracy Rosecrans
Medically Reviewed on April 30, 2014 by George Krucik, MD, MBA

Lupus, the Adventure Between the Lines

“Do you consider lupus to be an adventure? The woman behind Lupus, the Adventure Between the Lines says it is. “Where an adventure takes you depends partly on the decisions and friends you make along the way,” she writes. This blog is less about the medical aspects of lupus and more about the perspective you choose to bring to it. This blogger’s faith and strong support system nurture her along in much the same way she nurtures her readers. Straightforward and thought-provoking, these writings should be savored slowly.”

Top Lupus Blogs of 2014

Who are all the other lupus bloggers that were honored this year?  The others are listed below, in the order they were ranked by Healthline.com.  Please check out these other lupus bloggers and perhaps leave them a comment to congratulate them for their excellent work!

The Best Lupus Blogs of the Year

1. http://despitelupus.blogspot.com/
2. http://lupusandhumor.blogspot.com/
3. http://www.flowonlupus.com/
4. http://www.mollysfund.org/blog/
5. http://www.lupuschick.com/
6. http://lupinelife.com/
7. http://lifedespitelupus.com/blog
8. http://www.sometimesitislupus.com/
9. Lupus, the Adventure Between the Lines
10. http://lupusface.wordpress.com/
11. http://gettingclosertomyself.blogspot.com/
12. http://undefeateddiva.com/

I would like to share a special thank you to you, the readers who make this blog meaningful and purpose-filled.  Without each one of you and your comments, affirming “likes”, emails and feedback, there would be little reason to share the ramblings of the “Lupus Adventurer” at all!

Thank you so much for visiting and reading!

 

LFA Lupus Awareness Month Action Ideas #5 – Donate

Donate

The Lupus Foundation of America is supported by generous donations from the lupus community.  Contributions support the cost of LFA’s efforts to rally experts and deploy resources to solve the mystery and end the devastating impact of lupus. Our donations together support the LFA in its mission to improve the quality of life for all people affected by Lupus.

LFA invests in medical research, patient education, physician education, public information campaigns, advocacy to spread lupus awareness, and lobbying to support research and programs that change the impacts of lupus.  I am a great fan of and do my part to support LFA financially through United Way payroll deductions, as a “directed donation” so that LFA gets 100% of my donation.

LFA’s Financial Accountability

How LFA handles the funds we invest

In my position as a public servant managing a local government law office, I take public accountability very seriously!  In government, we owe citizens an explanation for the spending decisions that we make.   LFA is accountable to its donors for roughly $15,000,000 entrusted to it each year.

Donations can be made in many ways:  one-time, monthly, memorials, honorary or planned giving, and can be submitted offline, online or to chapter representatives.  Also, some people give stocks, a vehicle or household items or other goods and in-kind donations.

One of my favorite LFA fund-raising projects is the Walk to End Lupus Now program, with events all over the world.  As we plan for our September 27, 2014 walk here in Arizona, it is exciting to see that so far we already have 343 donors helping 397 fundraisers raise $18,881.00 for Lupus Foundation of America.  Please come join us if you are or will be in Arizona in the fall, or support me or another walker!

NEW WALK DATE!!!

SATURDAY,September 27, 2014
Scottsdale Center for the Arts
Scottsdale, AZ

5:00 PM Check-In Opens
5:30 PM Opening Remarks
6:00 PM Walk begins

Where does the money come from?

Where does LFA’s annual budget come from?

75%  Contributions and Grants
14%  Special Events
6%  Program Revenue
5%  Dues & Other Income

How does LFA spend the money?

Where do donations go?

75% Program Services

• Public information and education
• Professional relations and education
• Network support and services
• Patient Education and support
• Research

25% Supporting Services

• Management and general
• Fundraising

Have questions?

Please contact the LFA’s Development Department at 202.349.1176 or via email at donate@lupus.org.

The Lupus Foundation of America is a tax-exempt, charitable organization and is eligible to receive tax-deductible contributions under the IRS Code 501(c)(3). LFA’s Federal ID # is 43-1131436. Gifts to LFA may be 100% deductible from taxable income for donors who itemize their deductions.

Want to donate?

Go to the Lupus Foundation of America’s donation information and link page at http://www.lupus.org/action/join-the-fight.

 

Benlysta Infusions for lupus at a fraction of the price

For 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!

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.

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.”

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

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.

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.

Now, 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!

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