One Patient's Positive Perspectives

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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!

Lupus, loss, grief and taking time to actively mourn

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.

LFA Lupus Awareness Month Action Ideas #4, Dear Lupus!

67cbc18b28c77fe5b8_lsm6bxlesWhile talking on Skype a few weeks ago with a friend at the Lupus Foundation of America (LFA) office in Washington, D.C., she explained about the LFA’s upcoming lupus awareness campaign for this month. There was a subtle suggestion and very personalized challenge that also emerged from that conversation.

Now, here we are smack, dab, in the middle of May and the response to that challenge is still very much on the drawing board.  Hoping that by the time we reached Lupus Awareness Month Action Item No. 4, a post about it would include a link to my contribution to Dear Lupus, it isn’t ready yet.

Alas, my response has proven to take a little more thought than first anticipated.  Knowing that me and my family are serious musicians, Kris suggested that perhaps a “creative” Dear Lupus video from me might be  interesting.

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What would you tell Lupus?

It may sound pretty simple and straightforward, but this challenge is taking some doing to complete!  Life and lupus have kept me busy, and time for creative focus has been at a premium.

While the response to my friend’s challenge is still in the works, it will perhaps successfully tie together my music and my message to “Dear Lupus.”  What will that video look (and sound) like, I am not sure yet.  To be sure, I will share it here, as well as at the LFA site, Dear Lupus.

What would you say to Lupus if it were standing in front of you, now?  Why don’t you sit down with your computer, laptop, tablet, cell phone or whatever, and work on your own creative “Dear Lupus” message to share, too?

HHS Lupus and General Health Chat on May 29, 2014

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Questions About Lupus?

Lupus Chat with HSS

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

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

What is HSS?

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

Don’t miss this!

Don’t Miss Out!

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

 

May 15, 2014 Post Update:

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

To join the chat:

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

HSS Lupus and General Health Updated Annoucement

LFA’s Lupus: Learning & Living upcoming free Arizona patient educational event

Photo of LFA speaker and audience

LFA Official Educational Event Photo

In Arizona on May 10, 2014, the Lupus Foundation of America, Inc. (LFA) is hosting a free patient educational symposium Lupus: Learning & Living to include discussions of “What’s new in Lupus” and “Living with Lupus: Happiness from the Inside Out.

LFA Lupus Patient Symposium May 10, 2014, Phoenix, AZ

LFA Lupus Patient Symposium
May 10, 2014, Phoenix, AZ

Saturday, May 10, 2014
9:00 am – 11:30 am
Marriott Phoenix Airport Hotel
1101 N. 44th Street
Phoenix AZ, 85008

Please click here to register

Featuring:

Dr. Joan T. Merrill, MD, LFA Medical Director and Member and Head of the Clinical Pharmacology Research Program at the Oklahoma Medical Research Foundation

Cindy Coney, M.Ed., nationally recognized speaker, educator, coach and author of The Wild Woman’s Guide to Living with Chronic Illness

It will be my honor to make a few brief opening remarks and welcome our speakers and guests.  I would love to meet you!

 

 

 

 

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]

 

 

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!

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