One Patient's Positive Perspectives

Posts tagged ‘butterfly’

A new lupus adventure in Benlysta infusions

Resuming Benlysta Infusions

Resuming Benlysta Infusions

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

From full-cash pay to HMO rheumatologist

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

Infusion Center Hospital

In-Hospital Infusion Center

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

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

Slashing the medical miles

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

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

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

Is there a problem or two?

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

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

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

A thank you is in order!

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

Infusion Center Nurses

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

Lupus Adventurer and little digital butterfly collecting

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Albuquerque Bio Park
Butterfly Sanctuary

During a recent trip to Albuquerque, a trip to the Aquarium and Bio Park included spending time in the butterfly sanctuary on the grounds.

To prevent too much sun exposure that might flare my lupus, precautions such as a wide-brimmed hat, long sleeve sweater and pants were donned at the outset.  Getting through the park without over-exposure was very doable, even in the middle of the day, as we found abundant shade from the well established tree cover in the park.  Also, there was plenty of dappled shade throughout the butterfly sanctuary.

The outing was a thoroughly wonderful afternoon, and provided a first-hand opportunity for catching some butterflies to share with you.

All the photos below were recently added to the full gallery on the Butterfly Collecting Adventures page, with the newest “specimens” shown below for your enjoyment.

Some of the photos are mine, some are my daughter-in-law’s.  If you look closely, you might even find a couple of pictures of my grandchildren enjoying the day and in “close encounter” with a butterfly.

Lupus and the concerned sister who paints

Carol Cavalaris - Fine Artist

Carol Cavalaris

Carol Cavalaris is an artist that lives in a home nestled in the forests of Colorado, where she creates digital paintings of wildlife and nature.  She has developed diverse art skills, and began drawing and painting during her childhood in southern California.  I have never met her in person, but I loved her intensely colored paintings the first time I saw them.

Goddess of Miracles

After I contacted Carol for permission to feature her paintings of butterflies on this blog, I learned from her that her sister-in-law has had lupus for years and she has “watched her struggles, as well as victories.”  When I stumbled upon her art work, I was very impressed with the vivid beauty of her floral paintings, especially those enhanced by my favorite images of beautiful and sometimes subtle butterflies.  I just had to share a few of them with you.

Calla Lillies

Carol started with oil painting, and now enjoys the art of digital media, with a computer screen as her canvas. She combines photo and painting techniques to create unique mixed medium images. A number of her paintings focus on various animals, including some endangered species.  She explains that “creating, learning, and growing artistically have kept the joy alive and … passion to bring healing joy and beauty to others.”

Goddess of Sunrise

Carol and her husband once owned an ad agency producing print and television ads.  Her art work now includes sculpture, stained glass and graphic arts, and extends to interior design, copy-writing, music composition, novels and creative directing. Painting wildlife and nature, color and detail, are her passions.

Magnolia

Carol’s art work is on exhibit in several Colorado galleries and private collections all over the world, and is featured on T-shirt designs, puzzles, portable electronics skins, greeting cards and other items, as well as through her online gallery .

A watercolor for the guest room?

My own sister is also a painter.  When we were young I would sometimes sit and visit with her for hours while she sat at her easel.  I watched her paint and we chatted, and I now admire her patience toward her gabby little sister!  As my daughter and I were looking at Carol’s paintings that I selected to share here, she had a suggestion for her aunt. Perhaps we could ask her to paint a watercolor for my guest room. (To match the decor of purple, yellow, dragonflies and butterflies.)

Sisters who paint…

It might be a great idea, and if we can coax her to do that, we could share a print of the watercolor here.  But, perhaps one of Carol’s pieces might look great in the guest room, too!  We shall see…

~ ~ ~ ~ ~

[Lupus Adventurer will not benefit financially from this post in any way or from visits to Ms. Cavalaris’ site through readers following links on this blog. The artist graciously granted permission for me display her copyrighted images free of charge for the pleasure and enjoyment of this blog’s readers, and because of my desire to share the human interest story about her lupus connection.   A link to the artist’s gallery site is provided for anyone who may have further interest in her art work.]

Lupus and it’s mascot: butterfly or wolf?

Butterfly: Lupus facial rashes resemble the shape of a butterfly on the cheeks

What is the mascot of systemic lupus erythematosus?  Lupus has long had a couple of unofficial mascots, the butterfly and the wolf.  The butterfly makes a good mascot, because of the butterfly shaped rash that often appears on the face of many lupus patients, and that is a hallmark sign of lupus. My lupus mascot is a butterfly!

However, many have suggested a wolf as the mascot for lupus, since that is where the term “lupus” actually comes from.  The lupus connection to the canine name stems from the shape of the circular rashes on the skin of lupus patients. Often, these are similar to the shape and appearance of a wolf bite, hence the term “lupus” has always been commonly used to describe this autoimmune illness.

Butterflies get my vote as mascot!  Why?  Because the butterfly is a beautiful thing, fragile at times, but none the less it soars in the sunlight, dances among the garden flowers, and represents spring and new life and vitality.  The butterfly emerges from the dark confines of a cocoon, transformed into a beautiful graceful being, like a lupus patient emerging from the confines and limits of a long difficult flare.

So many lupus patients are beautiful and strong, they live with many challenges and embrace their lupus adventure with zest and courage, living their lives with joy, despite lupus. So many lupus patients are not undone by their disease, and it is those people who our lupus mascot should celebrate and represent. You can meet some of these amazing men and women by visiting their blogs listed on my Great Lupus Blogs page.

Wolf: Lupus discoid rashes resemble a wolf’s bite

A wolf, however, has somewhat a more sinister reputation.  Perhaps much deserved and properly well-representing the darker very real side of lupus.  However, I choose not to celebrate the dangers, miseries and pain of lupus, although they are important to realize and contend with.  I choose to focus on the beauty of each lupus patient, and being as “free as a butterfly” from lupus controlling my life.

Those of us with lupus can strive to rise above the negative parts of living with lupus, and refuse to let it dominate and destroy our quality of life.  We cannot make it go away, but we can come to terms with it, proactively manage it, and celebrate what we have versus what we may have lost to the disease.  I choose to focus on how well I can fly!

What would you vote for as the lupus mascot?  wolf, butterfly, or something else?

Finding a voice in the lupus conversation

Ideas

April’s 30-day health writer challenge has added an interesting twist by suggesting a new concept to springboard each day’s blog post.  I was afraid I could not write a post every day for a whole month, and thought I would run out of ideas.  I almost didn’t agree to do it, because I feared I would fail.  However, here we are, half way through, and it seems it might work, after all!

I write most of my blog posts at the desk in my office, but some start on my Nook tablet. Sometimes, inspiration hits during my first cup of coffee in bed, or in the middle of breakfast at the kitchen counter, or even watching my dog jump around from my back porch swing; The tablet helps when my blog idea hits while roaming the house.  Many, many cups of coffee get cold while I write a post.  Sometimes, my cup of coffee gets zapped 2 or 3 times in the microwave before it and my blog post are both done.

Frosting on a cake...

An idea forms, after I think about things other people need or want to hear about lupus, or maybe about something in everyday life that is different because of lupus. Sometimes, the link to lupus is a slim tangent, and other times it is the whole point.  However, each blog post answers a simple question:  what can I write that people in the lupus community need or want to hear?

Each post is meant to be informative, correct, honest, positive and encouraging.   A few carefully chosen pictures help tell the rest of the story, and are usually added last, like the frosting on a finished cake.

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