living with lupus, day by day, moment by moment

This was a hard movie to watch. 

The story covers about 5 months of James White’s life while he takes care of his mother, dying from stage IV cancer.  It was raw and brutally honest in telling the story of how an illness can take over a person, and become all consuming to the caregiver. 

It reminded me of when I was completely incapacitated a few years ago.  I watched it with my husband, who undoubtedly identified with the son, the caregiver.  

There are moments when the son had to fight with the medical professionals at the hospital, who were insensitive to his mom’s predicament.  This was all too familiar to us.  Whenever I was hospitalized and too sick to speak up, my husband had to be a fierce advocate to get the basic help we needed.
There are moments when the mother wanders off, lost, affected by powerful medication. This was me, many times.  Overtaken by prednisone and other powerful meds, I wandered off all the time. My husband had to track me down with the iPhone finder.

There are moments when the mother vomits, drops her cup, can’t get to the bathroom by herself.  Scenes all that are all too familiar to me and my husband.

Then there was a moment that almost gave me a panic attack.  The mother was speaking and then all of a sudden, she lost her voice.  With no readily identifiable reason, she couldn’t control her body.  That has happened to me many times when I was bedridden.  Less so now but it triggered those scary moments when you have absolutely no control over your body.  It brought on anxiety about the upcoming c-section surgery and the postpartum recovery.  What if it happens again and I become uncontrollably sick. It’s a place I never want to be again.  I hope that with all th care I’m getting with this pregnancy, I’ll have better control over my lupus. 

It was a hard movie to watch but one that is definitely worth sitting through. 

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