One Patient's Positive Perspectives

This morning was a repeat of many Saturday breakfast brunch rituals.  Today it was omelets, bacon, toast, homemade plum jam,  strawberries and bananas with coffee.  I really enjoy sleeping through half the morning each Saturday, but then I get up mid morning and usually make a hot brunch for everyone in the house.

Before our daughter and son-in-law came to live with us, breakfasts usually just included my husband and me, but these days, it includes them as well.  We often enjoy a chatty social time during the cooking, and at last the cook (me) gets the last, best, fluffiest omelet — when the skillet is finally well seasoned and everyone else is fed.  So, now I sit down to enjoy the fruits of my cooking and a little browsing with brunch.

Benlysta Twenty-Two Month Update

It is time for an update on my Benlysta treatments, since yesterday was month twenty-two in my treatment.  However, the last infusion almost didn’t happen, after nearly sleeping the day away in lupus exhaustion and fatigue.

Yesterday began with a start, after awaking from a dead sleep in the quiet house.  It didn’t seem like morning at all!  What time was is?  Groping through fogginess to find a watch on the bedside table from the night before, the startling realization shook me that it was 12:15 p.m.  The morning was gone and it was lunch time,  and sudden panic and urgency swept over me, while a feeble surging trickle of adrenaline was coaxing my body and brain into wimpy “fight or flight” mode.

Panic and Rush to Get Ready

With the realization that my Benlysta infusion appointment was scheduled for 1:00 p.m., only forty-five minutes from my waking moment, I jumped out of bed, stumbling as I faltered to get the waiting my sandals on my feet.  I was still dizzy with sleep.  A look in the mirror didn’t help my hurry.  My night sweats had turned my wavy hair into a rat’s nest of randomly angled mess, and there was no remedy but the shower!  Hurrying, with tooth-brush in hand and  mad splashing of water and shampoo,  within a couple of minutes I was out of the shower and drying.

It crossed my mind while holding my towel, that I could easily have slept right through the entire day — completely missing my infusion.  I was grateful for whatever had shaken me out of slumber, thinking, “thank you Lord!”

I was finally clean, dry and almost presentable, but still desperately needed clothes!

Quickly grabbing some necessary under-things, shorts and a favorite shirt, I dashed through a cursory grooming and took my morning meds with a splash of orange juice.  Grabbing my purse, I jumped in the car and realized my heart was racing with urgency.  It was now 12:55 and I was very late, but still determined.

Late, but determined

Photo by LA's Daughter-in-Law © 2013I pondered that we had postponed my Benlysta infusion last week, so that we could travel out-of-town to visit family.  I didn’t want to postpone the Benlysta another week!  My joints were already reacting to the resurgence of those little nasty Blys proteins that confuse my wayward B-cells.  I really wanted Benlysta soon to blast the increasing Blys population and quiet my Lupus back down again.

Calling up the hospital cancer infusion center while I headed for the freeway, the gal put me on hold for over ten minutes.  By the time we finally spoke, I was almost halfway there.  She was kind about my tardiness and told me to keep on driving.  Arriving twenty minutes late, they quickly processed me and a nurse promptly whisked me back to the infusion room.  Soon the powerful biologic drug was dripping into my vein and on its way into my system to once again fight my lupus.

Update on Benlysta’s Effectiveness

August  2013The Benlysta does its thing well, and has been greatly moderating my lupus.  My CNS lupus involvement remains subdued and quiet, my fatigue is greatly reduced, and my liver has remained symptom-free.  Minor symptoms of lupus — discoid rashes, mouth and nose ulcers, arthritis and bouts of milder fatigue are still present, but my overall physical strength and health are continuing to build up, as the lupus has continued to stay much quieter over a long period.

August will mark my two-year Benlysta treatment anniversary.


Comments on: "Lupus, Benlysta and a little browsing with brunch" (2)

  1. I just got to this post. I am so glad this med. is helping you. I am sure many like reading your Benlysta journey. When I come across someone wondering about it I send them your way. There is nothing like hearing about real life experience.

  2. thank you so much, fellow lupus sister! Great site, particularly about Benlysta. Congrats on a great blog!!!

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