Lupus & Me: Mirror Mirror

Moon face.  It’s an incredible change to your face that seems to happen overnight when you are pumped full of things to suppress your own immune system. My chipmunk cheeks are one of the final reminders that just a few weeks ago I was in the hospital.  When I woke up that day, I felt fine.  It was lupus again with a reminder that fine was only skin deep.  Not even skin deep if I made the mistake of letting the sun rest on any part of my face for too long.

The last several months were peppered with visits to the emergency room and follow up visits–  if I didn’t have a diagnosis of lupus already, it would have been understandable if my family questioned my sanity.  My fingers would turn a scary shade of grape for a while.  My feet began to play dead, well that’s what it felt like.  They were cold which was no problem, right?  I love fuzzy socks.  A few days before being admitted to the hospital I grabbed the brush on the dresser near my bed.  My legs stretched out still on the bed as I sat up and scooted back against the headboard.  I leaned forward and tapped the brush handle against my ankle bone.  I could see it make contact but nothing, I could feel nothing.  One foot playing dead and the other unsure of it’s next move.  This was new but as unwelcome as the old ways lupus usually surfaced.

Symptoms like arthritis are easy to describe and not too hard to confirm.  Even without tests, you can feel swelling of joints aflame. Weird things like a bulging hot fluid bubble hanging off your elbow are quickly identified. This lady on the bus asked if she could feel it.  She seemed harmless so I agreed.  “Bursitis,” she said, “it’s called bursitis and it hurts like hell doesn’t it?” There is comfort sometimes in having a name, something to call what keeps you up at night.  My sleep wasn’t chased away by the unknown anymore, it stopped needing a reason to escape me a long time ago.  More than 10 years ago I fell into a hole.  It was dark day after dark day, mostly because no one close to me knew what was wrong.  Doctors are just people and sometimes a case becomes too much so they give you a referral and wish you the best.  They don’t want to see you again and it’s nothing personal.  When systemic lupus attacks the brain it can resemble anything from a forgetfulness, demonic attack to straight up insanity .  They are called neuropsychiatric disorders and can leave as quickly as they start.  Most of the time it doesn’t come on full force.  It can progress slowly over weeks and months.  In some cases, like mine, it was a rapid descent that took over in a matter of days.  It would only take a few days to emerge once the steroids and chemotherapy hit my system.  I think we all have at least one experience in life that becomes more than a collection of memories.  You tell your life story and there is a before and after that time– sometimes because it’s easier to reference it but stick to talking about every other thing around it.  It’s not a bad strategy and in my case might have worked–  maybe lupus was offended I had started referring to it as , “….the time I got really sick.”

I’ve never really seen the spot where the needle entered my spine.  The doctors were searching for an answer to explain the sudden onset of behavior that began as peculiar and peaked at frightening.  The spinal tap ruled out certain bacteria and some types of infection.  My fingers twitched and locked in the most unnatural way.  The television in my room crashed to the floor after I disconnected it from the wall, then from the satellite dish and DVD player.  Anything to make things stop, things I knew were only possible if I was crazy.  A commercial that started out harmless fooled me and was the last thing I remember before pulling the tv this way and that way trying to shut it up.  My husband and mother ran to the door and since the doorknob had been removed earlier that week, the chair I put in front of it was no good.  I thought I was protecting them from whatever demons lived in my room and followed me everywhere except to the mailbox.  I took to checking the neighbors mailboxes at all hours to get relief from talking shadows and something I am certain was the devil.  Even though all of this is crammed into, “…the time I got really sick,” talking around it really only made me question if it all really happened.  Everyone gets sick, right? Not everyone ends up in a padded room, literally in a padded room.  It was a hard return to normal last time.  After, I remember being afraid to smile too much or be too happy–  what if people thought I was acting weird.  The little square of emotions I decided were safe and didn’t make me stand out became my normal for a time that lasted much longer than the prescriptions and weekly treatments.  That was last time.

I’m sure if I opened up that yellow envelope holding medical records from the months surrounding what the doctors called a flare, I would find answers.  Answers and reassurances that I wasn’t crazy.  That envelope has sat in the same box for a long time unopened–  I think the part I know is enough about the last time.  Flares are for the road, to warn people.  I always thought they looked like dynamite and marveled at the magic when I saw the light crack through the red papery skin of the dynamite stick.  The time leading up to my flare that changed my life was painful ignorance.  After the days searching a mirror for a glimpse of me, it was still painful.  Losing control is like a falling feeling and I am not the kind of person that likes either.

I can’t get rid of lupus but it can get rid of me.  It’s as much a part of me as the veins and synapses that translate forgotten memory to whisper to sigh.  There is no magic pill to kill lupus.  There is no test except the one that brings you within an inch of death sometimes and unmasks what you wish remained unseen.

I kept the news that I was in the hospital quiet this time. In a few days, it will be the 1 month mark.  The day I woke up and went to quick doctor’s appointment during an early lunch from work and found myself in a hospital. Honestly, I don’t know why I asked the few people who knew to give me space.  Maybe because sometimes I think it’s harder for people I care about.  Maybe because it makes it easier for me to tell myself a nice lie I need once in a while.  There isn’t anything they can do.  Their words and feelings conveyed to me over a lifetime are enough to sustain me through darkest times.  I live each day since the time I got sick in a way I can only hope confirms that for them.  That’s one thing about coming to terms with your own mortality early in life, you lose whatever it is that keeps us from telling people we love them and it changes your entire life. It did mine anyways.  I’m still technically in the flare and my purse sounds like a rattlesnake with all the medicine bottles. I went back to work and each time I look in the mirror, I see a little more of me each day.

I decided for isolation this time.  It was different than the other times lupus tried to take over.  The first few days, especially that first one, I was in denial.  I felt fine, I had just went to the doctor for a regular visit and somehow mistakes must have been made that landed me in an emergency room with a bag of infusion magic chemo on standby.  I decided to take a picture of the changes– real pictures.  I cropped them here and there but for the most part, they are unedited.  This was a particularly hard day of acceptance.  They are hard to look at and I thought long and hard about posting them with the story.  It captured something my words can’t.  Take what you can from it. This time was different.  Don’t let anything stop you grasshopper.  I’m not.