Mother's Day

"Mom-ma"

Lupus does not make any exceptions just because it's a holiday.  And definitely not because it's Mother's Day.

As has become routine, I woke up at 5:30 AM crying from the pain.  I reached over, took my morning dose of prednisone and put on some Adele to distract me from the pain.  I pleaded to the disease to go easy on me today.  We had planned a picnic at Orient Beach, followed by a carousel ride and some oysters at Greenport.  Then, some rest, followed by a movie or a spa treatment depending on what my mom wanted to do.  It didn't sound like much, but I was already nervous that I will not be able to make it through th day.

Around 7 AM, I heard the familiar knocking on the door and my smiley 1 year old son crawling towards me.  Every morning, we watch a few YouTube videos of the "Wheels on the Bus" in bed before he goes down for his breakfast and he was ready for his show.  His mumbling of "mom-ma" in the morning temporarily breaks me from the pain and allows me to experience some joy.

After some wonderful gifts and homemade breakfast, courtesy of my wonderful husband, we headed out for the day.  Orient Beach is at the end of one of the two tips of Long Island (the other being Montauk) and being that it was about 9 AM when we arrived, we had the beach all to ourselves for a few hours.  It was nice.

The beach is very family oriented with BBQ grills and picnic tables.  They have divided playgrounds for toddlers and kids.  And this was a shocker, they lend out beach wheelchairs.  Pretty cool.

Harry squealing with happiness!

A few hours at the beach, I started to feel very sick.  For the last two years, I have only experienced four stages of wellness -- sick, very sick, ill and very ill.  By the time we were driving back home, I was feeling very ill.  Nothing that was planned for the rest of the day was going to happen.  I was crying from so much pain that it did not even matter anymore.  I just wanted to feel sick again. 

When I feel this ill, I lose time.  From 2 PM onward, all I remember is lying in bed, writhing and crying from the pain.  My head felt like it was going to explode.  The nerves on my face was acting up and my whole face felt like it had a shrink wrap around it.  My eyes felt like they were bulging so hard that they were going to pop out of my head.  I felt incredibly dizzy and nauseous.  My whole body ached and I had difficulty breathing.  This went on for about 6 hours until Jim got me in the car for a long drive.  For some reason, when nothing else quiets the pain, a long drive helps.  So we drove for hours, my head resting on the rolled down window like a half-dead dog, drained from being beat up by the pain. 

Until I becam a Lupie, I did not know a person could cry continuously for hours on end.  Apparently, one can.  Through the tears last night, I was starting to feel defeated.  I did not think I could keep fighting this disease, every hour, of every day, for the rest of my life.  It was just too much.

Then I thought about how disappointed Harry would be in the morning, if I wasn't waiting for him in bed, with the iPad in hand, when he proudly flung the door open and crawled towards the bed.

So I crawled back into bed, took some painkillers and looked forward to another day, not as a Lupie but as Harry's mom.