Central nervous system lupus in a word? Disconcerting! When life gets busy and demands get stressful, CNS lupus can sneak up on a patient and catch her off guard with its bag full of antics and embarrassing tricks. Over the last few weeks, my life became a little out of whack as my husband and I maneuvered around his knee injury, inability to drive and eventual knee surgery to remove a large blood clot. Life and schedules became very non-routine and my CNS lupus quietly whispered to get my attention and said, “howdy.”
After more than a year of Benlysta infusions, my CNS lupus has been quieted and subdued more than at any time I can remember in the past several years. It has been a relief to have my memory and problem-solving parts of my brain working generally well, and I can count on it more often to remember things that were a struggle before. Well, lately has been an exception. Being stressed, doing lots of extra driving, working weird hours, concern about my husband’s injury and surgery, and forgetting my medications a few times all contributed to some symptoms that caught me off guard.
One time on the way back to the house, I started into a left turn lane on a busy street that didn’t head anywhere I needed to go. My kids that were with me asked, “mom, WHAT are you doing? WHERE are you going?” There was no saving face because the turning lane went nowhere. It was all too obvious I was confused.
Several activities were going on at our church because of a 30th anniversary celebration, and my friend and I were preparing to sing a couple of duets for a church service and a formal dinner. After meeting one evening to practice several pieces in our growing repertoire, we decided which song to sing what night, and scheduled our next practice a few days out. The next morning, and for several more that followed, I could not remember which songs or even which music books we had decided on.
To thoroughly cover my bases, I popped the ALL the background music CDs for several music books into my car, and for a few days sang along with ALL of our duets as I commuted. It took me several days of singing and hoping in vain that my memory would clear before I called my dear friend and confessed my massive memory lapse. My friend, so like a sister, loves and understands the hard issues of my lupus, and in her matter of fact directness, refreshed my memory. This time, I wrote down dates and times next to the names of the songs in the table of contents of the correct music book.
Twice recently, I went out to pick up some amazing sub sandwiches from our favorite local lunch spot, Jersey MIke’s Deli. My husband all but cherishes his Mike’s “frequent buyer” rewards card, and admonished me to remember to use the card when I bought our subs. Not once, but twice, I forgot to pull out the reward card. No more than ten minutes passed between taking everyone’s sub order and standing in front of the deli counter, but both times the thought was wiped clean away until later. When he asked me about it, I was frustrated at forgetting. Short-term memory issues from CNS Lupus? Of course!
The most disturbing issue of all was several instances when I was confused and couldn’t figure out what day it was. Then, later that day, it bothered me greatly when couldn’t remember my friends’ names or my pharmacy log in name and password. I even had some moments of difficulty articulating clearly while trying to speak.
Things were subtly getting worse a little at a time, when I was suddenly shaken into action in the middle of happy pleasant busy day by a tidal wave of unexplained deep physical sadness. This overwhelming emotion was so strong it was like an intruder bursting into the room, and I suddenly felt it physically. It was an unmistakable sign that my CNS lupus had kicked up into more activity.
This physical “depression” I experience sometimes when my CNS lupus becomes active is a great deal like a sensation of woe that floods over and through me. It seems totally physical, and is completely detached from my thoughts and feelings. It is a misfit with where I am at in life and in the middle of an otherwise normal day. My upbeat brain doesn’t match my suddenly “grieving” body. It feels like my body is intensely sorrowful, while my inner self is perfectly happy and at ease, even cheerful or joy filled. Over the years I have learned to recognize this urgent organic cry from my brain and body for help.
I respond by taking a modest burst of steroids and taper off within a couple of days. If the physical depression returns, I set a priority appointment with my rheumatologist, who usually ups the steroids by injection or a high long taper off prednisone. Steroids are the big gun that immediately changes everything. My rheumatologist says it is possible to diagnose CNS lupus by treating it, because of how quickly it responds to prednisone.