Lupus and Getting By the Gatekeepers

Life can be measured in four-week increments by lupus patients receiving monthly Benlysta infusions.  Just four weeks and one day ago the results from my COVID-19 test came back negative, and it was possible to resume infusions after a bad case of bronchitis postponed them.  After returning to work for only two days my office closed down and many of us began daily telecommuting.  Going to work now involves a quick stop at the coffee pot and a walk through the living room to my home office.

Today was infusion day again, but now, things at the doctor’s office were different!  An email had been sent out advising patients that only shots and infusions were being done in person, and consultations all were being done by telemedicine.

The waiting room was empty except for the gatekeeping nurse by the door.  She wore a face mask, and approached me with a forehead thermometer to take my temperature — thankfully it was 98.4 degrees!  She responded as if should could see me smiling at her from behind my homemade purple floral mask.  After passing this hurdle, permission was granted to cross the room to check in.

All of the other office staff at the front desk and in the infusion department wore face masks.  As their last infusion of the day, it was easy to achieve optimum social distancing in a room full of mostly empty infusion chairs, where a single patient sat across the room from me.   Another temperature was taken, and then the infusion was started.  Some text messages with my boss and some time spent reading news on a tablet computer helped passed the infusion time quietly and quickly.

To achieve an economy of effort and public exposure, today’s planned outing also included a trip to the grocery store.  After leaving the doctor’s office, I stopped for gas for my thirsty car, slathered hand sanitizer on my hands, debit card, and key fob.  Once decontamination rituals were complete, it was time to head to the grocery store.

Shopping has always been a germ dodging affair for those of us who seem able to see the invisible.  We clearly see the pathogens in our mind’s eye on every high touch surface, while most of the world walks by them in blind, ignorant bliss.  While driving, the thought emerged that the whole world has suddenly developed keen microbial sight also, seeing germs and viruses everywhere.  Those that once thought me a “germaphobe” now have the deepest respect for the invisible threat lurking on every shopping cart and door handle.

The grocery store had gatekeepers also, and a sign at the door that said “maximum occupancy 100”.  A young woman in a face mask greeted me at the door, and two young men were stationed inside the door using sanitizing wipes on a shopping cart before handing it to me.  It must have just been habit, but my hand reached out and grabbed a couple of wipes from the dispenser while passing it.  Once done, the compulsion to re-wipe the handle and front of the cart again was irresistible.

After finding almost everything that was on the shopping list, it was time to check out.  Near the registers, there were lines painted on the floor six feet apart, and at the register, there was a plastic shield erected between me and the cashier.  There was no purse on my shoulder, I had left that in the trunk.  All that was in my pockets was a cell phone, debit card, and car key.  After loading my groceries, a generous blob of hand sanitizer was slathered on hands, debit card, and key fob once again.

Then it was time to head for home, where there would be no gatekeepers.

 

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, loss, grief and taking time to actively mourn

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.

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.

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.

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

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!

While 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.

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

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.

https://www.facebook.com/hspecialsurgery

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

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

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

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

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.

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!

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.

http://www.sail-world.com/Cruising/NH/Unmanned-tsunami-boat-takes-three-years-to-reach-Taiwan/119830

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.

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.

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

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!

Lupus and the first new rheumatologist appointment

positive – reassuring – affirming

In three words, my first appointment with my new rheumatologist was positive, reassuring and affirming.  After twenty years with my previous rheumatologist, changing doctors was not a lightly considered move.  I am generally a very loyal patient, and honestly, it was a bit scary to think about changing.  But, it was time to make the change!

much prayer and advice

Much prayer, consideration and soliciting of comments from my circle of personal advisors went into this decision.  Thankful for many around me who listened and opined during recent weeks, my final choice to make the move was based on multi-faceted health, economic and philosophy-of-practice concerns.  Any apprehension I felt before making the change, vaporized the moment my new doctor stepped into the examining room with a smile.

“Hello, glad to see you again,” was her greeting, as I shook her outstretched hand and reciprocated the gesture.  We had a brief first exchange acknowledging the thread of our first social conversation outside the clinical setting.  Confirming my intent to opt for completely transferring my care to her, and not just getting a second opinion, we launched into her review of my medical and treatment history.

diagnostic tests

It was clear she was extremely “present” in the conversation, intuitive, highly knowledgeable, and gave me a strong impression of her competence and confidence.  Without seeming to be in a great hurry, she efficiently completed a thorough history and head-to-toe physical exam, while fleshing out important details forming her composite picture of my present condition.  She determined she would continue my current treatment plan, at least at first, and ordered several diagnostic tests to help establish the baseline for my continuing care.

We discussed my recent failed attempt at steroid withdrawal, and the results of my personal “crash and burn” that occurred about ten days before Christmas.  I was relieved that she didn’t seem troubled at all that I had felt the need to self-medicate to handle the crisis, and understood my concerns about preventing a repeat of the botched process.  She concurred with keeping my daily prednisone dose at 7 mg, and commented that “it is not at all unusual for many lupus patients to stay on steroids indefinitely.”

All but one of my other current medications, including plaquenil and Benlysta infusions were also continued.  We discussed the fact that I have never taken Cytoxan or Cellcept, and it seemed she was intrigued about that not having been used in the past.

establish baseline levels

My new doctor went on to explain to me that she doesn’t ordinarily recommend attempting steroid withdrawal in the winter months, the season when most lupus patients tend to flare.  She made me feel the approach I took to handling my pre-Christmas crash, burn out and flare was just fine.  I was glad for the affirmation of my judgment, while voicing my commitment to medication accountability to her.

Walking out to my car, sunshine gently warmed my shoulders, as body and mind released into a deep sigh.  I felt the affirmation that I had absolutely made the right decision.  Driving away in my little PT Cruiser with a smile, I was glad.  Apprehension of the unknown, and the reluctance to face a major change was behind me, with foundations in place for a healthy patient-doctor relationship ahead.

the right choice

Now, after having placed myself under the care of a new, highly knowledgeable specialist, a great sense of peace and relief followed the important first appointment.

It was indeed the right choice!

Lupus adventures navigating a new doctor’s forms!

Filling out new patient forms

Every person with a chronic medical condition, like lupus, has done this time after time.  Each time we face the adventure of seeing a new doctor or medical provider, we do it all over again.  I cannot help but wonder what it would be like to fill out forms for a new doctor, if only.  If only I were a normal person, without lupus! Perhaps that would be the ideal new patient experience.  But then, perhaps I wouldn’t be needing to do it at all.

Follow along with me as I wish I could just fill out the form for my healthier alter-ego twin sister.

If it were my healthier twin…

Returning empty-handed

First, IF I were my healthier twin, it might be possible I have been to this doctor before.  It has been such a long time, I can’t  remember when or if it was, and so I ask the receptionist.  “I think I have seen this doctor, can you remember when I was here last?”  If I did, the year escapes me!  I insist, “I really think I have been here before,” but because I have been away and healthy so long, the receptionist hands me a clipboard.  She asks, “since this IS your first visit, would you please fill out all the forms, please, and bring them back when you finish?”  My healthier self continues to protest, ” I think I saw Dr. Smith a long time ago,” so, she relents, and heads off to search her files for my chart.

While I stand there, holding the clip board and waiting, I contemplate that it has been so long ago, the young receptionist was probably in kindergarten, she couldn’t possibly remember me.  Reason whispers in my ear, “any old records the doctor had about me were probably destroyed long ago.”  Returning empty-handed, she announces politely, “IF you had a chart, we cannot find it, SO, we really do need you to humor us and fill out all the forms all over again.  We will have to make you a new chart.”

Nope, it’s really me after all…

Now, since I am ME and not my mythical healthier counterpart, I really AM a new patient.  However, I notice she already has a large file on me in her hands, brand spanking new, presumably holding unread fresh photocopies of medical records and diagnostic reports sent over from all my other doctors, labs and radiologists.  Although she surely has my complete medical history in the shiny new file, she STILL insists, “please fill out all the forms.”

So, still holding the clipboard and pen in my hands, I sit down to begin working on the first question, “Describe briefly your present symptoms.”

Symptoms

Describe your symptoms…

IF I were my healthy twin, I would fill in something like, “sore throat.”  But, since I am ME, and not healthier HER, instead, I panic!  There are only five lines to write the answer on.  How small can I print to get the most important things in that space?  What should I leave out, what should I include?  Should I limit my answer to just the issues related to this doctor’s specialty, or should I go for the grossly “TMI – too much information” answer?  Should I list the diagnostic criteria, or just try to sound like a novice patient and graphically describe what each of my lupus symptoms looks like?

I suppose to myself that “normal” patients just answer briefly, like my healthier “twin” would have, “sore thumb” or “sore ankle,” or even a much longer healthy persons’ detailed answer, such as “stubbed my big toe last week and it still hurts, so I think I have arthritis.”

Next question, “date symptoms began.”  I just put in “childhood” since I cannot begin to remember what early age I was when the first signs of lupus started.  I ponder, “how young was I when the childhood arthritis, stiff knees, swollen knuckles, mouth ulcers, fatigue and facial rashes all began?”  Perhaps my healthy alter-ego could reply, “two weekends ago,” or something else simple and current, but not me.  This question takes some contemplation and memory jarring to complete.  I keep hoping in vain that the form will get easier after I answer this question.

The inevitable request…

Medical History

Then, the inevitable request, “list names of previous doctors you have seen for this or similar conditions” I hear myself talking outloud in disbelief to myself, “Really, only two blank spaces?” I decide to work backward chronologically until the space is full, wondering, “do most people just say, “none?”

Next, there are several detailed sections for past personal medical history, rheumatologic (arthritis) history, previous operations, and the obligatory family health history.  This time, I am glad to see that there are at least twelve lines for medications, grateful I will only have to double up on some of the lines.  If I write small, I think can probably list all my current prescriptions in that space.  Oh, no, the second column asks for doses, strength, how long I have taken each medication, and how much they help, “a lot, some, not at all, and not sure.”  I decided to guess a little for medications I have taken so long that I don’t even think about the dose any longer or remember when I started taking them.

My date guessing centers around trying to remember the major sequences of milestone health events in connection to which house I lived in, the births of my children, their ages when we moved, their graduation from high school, marriages and when certain lupus flares and major changes in treatment happened, and dates of major accidents, hospitalizations and surgeries.  This is not an exact science, but I am giving it my all out best to be as correct as possible.  Somewhere in the middle of all the guessing, I wonder if the exact answers even matter to this doctor.  Are estimates good enough?  Probably!

Medications

Checklist of past medications

Then comes the list of past medications.  I am very relieved to see that the rheumatologist has given some thoughtful courtesy into the design of the form, listing forty common rheumatology drugs, so I check off about 1/3 of them.  I realize there are many that I have completely forgotten about until now, ones that I have taken in my seemingly ancient treatment history.  It is getting hard to remember how long ago I took some of the drugs, so I find myself guessing, hoping again that my new doctor is not big on exact details.  Just like studying history in school, I like the idea that the concepts are important, not the exact dates!

I look up at the clock and realize I have already been filling out the forms for over twenty minutes.  My appointment is scheduled for ten minutes from now, and I have three more pages to fill out.  I can see this will take a while!  I can imagine I will still be working on finishing these forms while I am waiting in the examining room.  I remember the receptionist had told me to arrive a few minutes early, and now am chuckling to myself she should have said a couple of hours!

I check  off the boxes for eight of the twenty-four past conditions I have had, and list my six previous surgeries, one transfusion and one other serious injury.  Then after all the histories, is almost a whole page about medications, present and past.

Lifestyle, exercise, more details…

Lifestyle, exercise & details

Then,  a few dreaded lifestyle sections asking about special diets, regular exercise habits, social history, home conditions, education and employment history.  I find myself amused at the level of detail asked in these sections, wondering if I should make these up for the fun of it.  Does the doctor really care if I was unwise enough to smoke twice a day between ages twelve and fourteen?  My integrity weighs in and I tell the truth, answering for the year “early teens.”  I realized I take all these questions much more seriously than any normal person would or should, but then, that’s the real me with the pen in my hands, not my healthier “wanna be.”

What are they really asking for?

What answer do they really want?

A last, I get to the last page!  I am staring at a full four column sheet of categorized check boxes, listing seemingly every possible health symptom or malady, grouped by labeled categories for each bodily system.  It seems like I answered this a couple of pages earlier, but since there is a longer list to choose from here, there must be a different reason for this question.

The instructions say to “mark any of those problems which apply to you.”  Does that mean that have EVER applied to me, RECENTLY applied to me, USUALLY apply to me, or should I really check off all the things that have happened at any time in the broad expanse of my entire health landscape?

I decide to just check the boxes that I have seen a doctor about, or that have clearly happened more than once.  I am afraid if I pull out the stops, and tell every last detail, the first impression my new doctor will have will be to pull out a big red stamp and mark the outside of my new medical chart in bright, bold, capital letters, “hypochondriac.”  I don’t want this new doctor to put me in the same category as the first doctor who actually called me THAT about five years before lupus was finally diagnosed!

The doctor will see you now

The doctor will see you now!

Soon, I have completed and reviewed my answers, and signed the forms and handed the clip board back to the receptionist.  I feel just like I have finished a mid-term exam in college!

She says politely, the doctor will be with you shortly.  I muse to myself that the forms took almost an hour, and that I will probably spend less time than that with my new doctor today.  This encounter, will be an adventure, as I open this first page in the new relationship with my new rheumatologist.  I hope the relationship will develop with effective communication, with a large dose of mutual respect.

The smiling receptionist returns through an open door into the lobby, announcing triumphantly, “the doctor will see you now.”