Monday, March 19, 2018

Lupus and Me

Some of my best thinking these days is done while sweating around the gym floor to a latin beat (aka zumba class).  Today I was semi-compiling my thoughts as I danced around, about the last year and my health.

About 2 weeks ago I had some blood coming out of my ear, not much, but it is what set the whole cascade of memories concerning my Lupus since moving to Wyoming.  That move is a landmark in the timeline of the disease because I stopped all of my medications right before that move.  I was on a dangerous injectable dose of a chemotherapy drug that ironically has the side affect of causing tumors or cancer.  I was on several other drugs with life changing side effects and I was feeling an inner drum beat that I was tunneling toward death either way.

Basically moving here I chose to claim my life.  Whatever life is left I wanted to live it.  Everyone has their reasons for taking the drugs they are supposed to or not, and this was my time.  I spent an inordinate amount of time trying to dispose of my injection needles and my dangerous prescriptions.  The pills were pretty straightforward but finding a place in this small town to accept used needles was a nightmare.    So many phone calls, pointless drives, and shocked looking clerks...

So.  I had my reset.  I was medication free for a few months.  And actually I felt better than I had since the diagnosis.  I was walking daily down a paved path by my apartment and felt like I was reclaiming my body.  But slow, slow, slowly my health started to struggle and by 9 months here I had developed some kind of infection.  I can't remember where and when the pain started but it felt like strep in my throat.  After enough days of fighting that the ear pain began and so I began going to the doctor.  This was an upsetting time because I was started with a normal antibiotic, got worse and ended up on a new antibiotic.  I was panicky by the third time going in because ear pain as an adult is the literal worst.  Or one of the worst?  And it didn't help that when discussing the second antibiotic and steroid the doctor seemed to indicate she wouldn't do much more to treat.  I felt like she was dooming me to death by earache.

The third attempt at medical help ended with a steroid prescription, an asthma prescription and a plan for increasingly aggressive allergy treatment.  The good news is that appeased the pain.  The bad news is I was so dang anxious that this wasn't the end of it.  It was a weird couple  of months.  It really changed my social behavior, I retreated within myself, I closed my social media accounts, and just kind of retreated to my cave.  It reminded me of how I feel in labor, like in a world unto myself.  It is a dark and interesting memory, kind of shut away, but brought into the forefront by my draining ear even a year later.

I'm still lupus treatment free.  I dedicate more time and resources to preventive health than I ever have in my life.  I follow pretty much any Dr. Rhonda Patrick advice on slowing aging.  I think the thing that strikes me about that health scare is that I didn't feel influenced to go back into aggressive lupus treating again.  I don't know if the escalation of the infections was because of lupus but I still feel more comfortable with my preventative natural way of health for now.  I am thankful to be outside, around my kids and out of bed.  My last year in Omaha and the last year my baby was home with me before school I have very foggy memories and I know I was mostly in bed managing medication effects.  I'm glad I am living here.

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