One Patient's Positive Perspectives

Archive for the ‘benlysta’ Category

Lupus and the recurring visit of the sloth

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Return of the sloth

Waking up in the quiet of a Sunday morning with a deep relaxed sigh, stretching fingers brush the euro pillows that serve as a headboard. Suddenly realizing that there was no husband in the house, a foggy lupus mind rushes back a faint realization he was here, and dressed for church.  He had stood there at the foot of the bed, wearing a bold blue and yellow Jerry Garcia tie saying, “honey, I’m leaving.”  As he headed out to play piano for the early morning choir practice, Sunday morning sloth mode had overcome the sleeper, who didn’t wake up again until this very moment.  What time is it, anyway?

Oops!  A soprano spot in the choir was now standing empty, and a husband sat through the church service temporarily stood up by a “sloth” who still slept at home in bed.  With another resigned sigh was realization that the morning had been spent sleeping through church, succumbing to the overwhelming fatigue tugging on my body.  Grateful for the stolen extra sleep, the fatigue was lighter than earlier when I almost woke up, but there still was a measure of frustration over failure to be responsible and “in my place” on a Sunday morning.

Sleep/Rest Goals

The Question – sleep or laziness?

To an outsider looking in, it is no wonder the conclusion about this type of slothful behavior is a blatant proclamation of “laziness”, but the enlightened few who really understand autoimmune disease know it is something different.  Sloth mode overtakes most autoimmune patients with regularity, but after a Benlysta infusion, the effect for me is much greater than normal.  There are always a few days of overwhelming, consuming fatigue, sleepiness, and utter exhaustion that set in during weekends that follow monthly Benlysta infusions for my lupus.

Thankful that there are no other noticeable side effects from the Benlysta I receive every fourth Friday, I can live with the weariness that overtakes me afterward.  Many years before Benlysta was available for lupus, the only treatment that controlled by lupus was a combination of the cancer chemotherapy drug Methotrexate, a transplant drug Azathioprine, Plaquenil, prednisone, and a prescription NSAID.  Methotrexate caused nausea and extreme malaise for at least twelve to twenty four hours after each weekly dose, so a “little” slothful tiredness is a tolerable outcome, if not blessing, in comparison.

Return of humanness

Showering and letting the slothful sleep slide down the drain, the rest of the day was recovered and went on like normal.  Sunday dinner, out and about to play piano at a retirement center worship service, and then on to afternoon choir practice.  This evening, I joined my husband at church and filled this morning’s vacant spot with the other singers.  The sloth was left behind, at least until tomorrow, and the butterfly returned.  Although sometimes it reappears transforming me for another day into a Monday morning sloth, on Tuesday, it is certain full humanness (and butterfly-ness) should return and remain for the next four weeks.

 

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Bring me a lupus infusion with epidurals on the side

Valle Luna Phoenix thEOGYSE51A recent “date night” found us sitting in a quiet booth while the waitress approached the table with a warm welcoming smile.  The Friday night dinner rush was over by our 8:30 arrival, and we had only waited a few minutes for our table.  Earlier, she assured us, was pretty zany at this local authentic Mexican restaurant we had all but forgotten about in recent years.

Tired some of our usual dinner spots, a return to the casual charm of this unpretentious eatery was long overdue.  The decor had not changed in the decade or two since our last visit, but it really didn’t need it.  Part of its southwest charm is the rustic feeling of being just over the border from Mexico, while really eating dinner right in the middle of Phoenix, more than a half day drive north of the border.

Valle Luna Phoenix BestWhile notably absent this evening, it seemed there might still be a faint echo of the mariachi band that had once strolled between the tables during dinner hour.  Amused while studying the menu for tummy friendly fare, a chuckle was stifled while considering my possible order.  Over the past few weeks, life had indeed served up a new menu of possibilities and adventures.

What would I like today with my lupus?  Well, how about a double dose of doctors, a lupus infusion, and a little Lumbar epidural on the side?  Seriously, the mild enchiladas, rice, and beans hit the spot quite nicely.  We enjoyed some quiet small talk over dinner while reviewing events of the day, and contemplated the long-awaited relief achieved by recent procedures that treated a nagging herniated disk.

Butterfly OrangeWith a total of three epidurals over the past few months, there was finally relief from the unwelcome companion of low back pain and leg muscle spasms.  After several months where the need for pain killers (tramadol) became increasingly frequent instead of episodic, it had become clear the chiropractic treatment we tried was woefully inadequate.  So, after visits to three different doctors there was a new personal record, as a little lupus treatment was sandwiched between some “minimally invasive” spine treatments.  Each epidural required a day off of work, sedation and a full day to rest and recoup.  With each of three treatments, the intense pain of sciatic leg cramps and low back pain subsided to more tolerable levels.

Mexican Valle Luna Phoenix thFDZH2OZYIt seems that Lupus alone is quite enough, but when other medical issues overtake a lupus patient, the combination of other medical difficulties and challenges can threaten to overwhelm even the strongest of souls.  It seems this is just the right season of life to be thankful for quiet lupus biomarkers, and be grateful for the blessings of relief from many months of intense pain.  Monthly Benlysta (belimumab) infusions have controlled lupus well.

Thankful to be out enjoying the “date”, and thankful for relief from pain, our Mexican fiesta, without the side dish of screaming pain was delicious!

Lupus and 200 hours with Benlysta

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Benlysta Infusions Started August 2011

Every four weeks, month after month for almost four years now, three to four hours of each month has been devoted to an infusion chair.  Doing a little mathematics reveals that a little shy of 200 hours have been invested in Benlysta (belimumab) infusions for lupus.  As medical milestones of each month, they are helping subdue and manage the impacts of lupus.  Before lupus, the threat of quitting work due to early disability retirement loomed ahead, but the powerful work of this relatively new biologic drug reversed that.

With the return of greater ability to enjoy challenging adventures, quality of life is improved.  Intensity of lupus signs and symptoms have dramatically decreased over time, although the benefits were slow to show up in the first few months.  The first few months showed little change in lupus severity, but during the next few months that followed, symptoms decreased, pain lessened, and flares began to be shorter and less frequent.  During the second year of taking Benlysta, overall health and strength gradually improved.  Now, after almost four years, the infusions continue and keep lupus in manageable check.

imagesOVOE762VTwo noteworthy observations about effects of a Benlysta monthly treatment cycle:

  • Signs and symptoms of lupus seem to increase during the week before my infusion.
  • After Friday infusions, extreme, bone-tired fatigue lasts through each weekend.
  • Immune system remained strong, if not better

Benlysta may be a great option for many lupus patients, may be just what their doctor ordered!  As for me, I thank God daily for the help and control of my lupus it continues to give.

Lupus Awareness Month, Manicures and Missing Toenails

WP_20141129_15_16_32_Pro (1)Infusion day seemed a fitting event for experiencing Lupus Awareness Month with flare.  With the day spent in a circular junket around town, my little PT cruised from doctor to doctor for treatment for lingering problems from a recent car accident, and then to an annual Plaquenil eye check up.  With two hours to spare, I stopped in for manicure and a pedicure, and had an interesting discovery.Hair curls, manicures, pedicures but no lupus cures...

When the nail tech removed the bright purple nail polish, she noticed that the big toe nail had separated from the nail bed, but without any apparent reason such as fungus or infection.  It appears my big toe nail completely died, and the nail stopped growing several weeks ago.

The salon suggested that trauma during my late March trip and fall at the shopping mall killed the nail.  Perhaps while scuffing knees and straining the ankle, the nail bed base also sustained a hefty wallop on the edge of the cement step or the sidewalk.  The nail salon urged me to show my toe nail to the nurse while at the rheumatologist’s office for my monthly Benlysta infusion.

The verdict,  “Expect to lose the toe nail soon.”  Well, it seems the summer  fashion forecast lacks any nail vanity, and just in time for sandal season.  It will be interesting looking for closed toed summer shoes for a niece’s late July wedding.  What fun!

The infusion was the last planned stop of the full “medical” day.

infusion in handThe afternoon passed in the infusion chair with a monstrous accounting textbook perched on my lap and a fresh yellow highlighter gliding across the pages.

Eventually it was hard to pay attention to studying for my college class.  The friendly chatter of a couple of other patients getting RA infusions was more engaging than dwelling on the accounting formula, “Assets = Liabilities + Owner’s Equity”.  Without asking, it was clear they obviously didn’t want to chat about accounting!

No one does.  The reason is hard to pin down, but no one else seems to get very enthused about chatting about or otherwise dwelling on accounting theory, either!

GSK Lupus Summit, Philadelphia, PA

Edited in Lumia Selfie

Charlotte, NC Airport

All day was spent traveling from Arizona to Philadelphia… three airports, two flights and a taxi ride.  Sitting here in the hotel room, the view includes the GSK Corporate offices next door, and the 76er’s and Eagles’ sports complex.  This is a great time to kick up heels and unwind before looking for some dinner.

Taken with Lumia Selfie

Boarding for Philly

GSK had a welcome packet waiting at hotel front desk, in preparation for tomorrow’s GSK 2015 Lupus Summit — #GSKsummit — and it seems the other bloggers have not yet arrived.  It will be great to meet some of the other participants who have been social media “pen pals”.

The updated list of participants in the welcome packets includes lupus bloggers with these Twitter addresses: @marlajan, @ShanelleG @despitelupus, @LAlupuslady, @lupusguru, @TiffanyAndLupus, @cmswrites, @LupusChickcom, @LeslieRott, @QueenofSpain, and of course, “moi”, @LupusAdventurer.

Looking forward to tomorrow’s adventure.  Follow us tomorrow on Twitter.

The brain fog moment and lupus crossed wires

CNS lupus involvement

CNS Lupus strikes unexpectedly

Just when you would like to hope and think it is gone forever and never coming back, lupus brain fog and crossed wires show up again, unexpectedly.  It is not that the head is not on straight, it is just that sometimes, just for a moment, it is unclear what week or day you are in, or what subject you just wrote an email about.  Recently, several similar projects overlapped in the same time and space, and it was a sure prescription for a mental mishap!  While finishing up interviews for one vacant job, new applications just started coming in for another.

Here is where the confusion starts.  Keeping the two recruitments straight was a mental quagmire.  The call was placed just a little too early on a Monday morning for the normal state of my “lupus brain,” and a group of questions were asked and answered as I spoke with an applicant’s work reference.  All throughout the call, it seemed odd how much all the answers were describing skills and abilities that fit the other open job, perfectly!

Too early on Monday

Returning to my office to re-do the form

After filling out the title of the position on the required form for Human Resources and filling in answers in the comment areas, I signed it.  It was then I realized things had gotten a little murky.

Walking over to my assistant’s desk, I began explaining how unusual it was that the applicant seemed to fit the other position, but not the one she had applied for.  My assistant looked up at me with a very quizzical look, explaining that the answers fit the position that applicant was seeking!

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Crossed wires!

The sudden realization hung heavily in the awkward moment, as humility stepped forward, compelled to admit to a mental crossed wire.  Reclaiming the form, and returning to my office to redo it, the correct job title and all the answers were copied into a new version.  Now, the applicant seemed to fit the job perfectly, and even qualified for a second interview.

It is amazing what a little central nervous system lupus can do when you least expect it!  It might even inadvertently alter the course of someone’s career, if not kept in check by a good assistant, not afraid to say, “what are you thinking?” when it is needed most!  A good assistant is hard to come by, and no, you cannot have mine!

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.

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