Today marks one-year since I first sat in this same infusion center in a Phoenix hospital and began receiving monthly infusions of Benlysta (belimumab) for my lupus.
Looking out the windows I can see the downtown Phoenix skyline in the distance bordered by hazy blue sky above and a green urban forest canopy of mature landscape trees across the base of the clustered skyscrapers.
A range of desert mountains completes the scene, flowing like a wide brown ribbon behind the tall buildings, separating the verdant foreground from the cloudy blue expanse above. It hardly looks like the desert from this vantage point above the tree tops! But, don’t be fooled by appearances, the temperature outside was over 100 degrees today.
Today, as I contemplate the beautiful view outside, I compare the state of my health today with one year ago. The path of this year-long adventure has taken me to a better place, overall improved health and a measurable restoration of my quality of life.
I sit here grateful for the funds made available to pay for my treatment, since the costs to my insurer for Benlysta infusions in the hospital setting (the administration site that my insurance requires) are massive. The total one year cost is in the neighborhood of double my annual salary!
So, as the Benlysta drips into my vein, I assess the state of my lupus. A year ago I would have assessed my “healthiness” at about 50% and now I would rate it at about 75% to 80%.
Today, I am clear-headed with central nervous system involvement quiet and under good control, significantly reduced arthritis inflammation, feeling pretty decent. I am even having a hard time remembering the last time I had nasal or mouth ulcers from my lupus. It has been a long time since I suffered with deep bone ache in my arms and legs that lasted for more than one day. My lupus neuropathy was flaring a month ago, but has quieted back down in the past few weeks.
Benlysta slowly and methodically made a real difference, like the almost imperceptible growth of the beautiful flowers in my garden, that start as tiny seedlings and slowly develop into a blooming swath of beauty. So too, my lupus has quieted and better health has emerged in the place of rampant symptoms, malaise, fatigue and pain. What a great improvement one year of effective treatment has made.