My Journey With Chronic Illness

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Dear Friends,

I am so pleased to meet you!  My name is Gabrielle (Rie) Lopez and I am a mother, a wife, a patient, and a fierce advocate for patient empowerment.  I initially entered the world of public health, intent on building a career as a health educator in the school system.  I loved every minute and I could see my life roll out before me in a seamless stream of academic satisfaction.  After all, I worked hard to get where I was.  However, life doesn’t always go according to your plans.  On one evening in March of 2016,  my life changed entirely.  Crushing head pain followed by partial paralysis led to an emergency ambulance ride, in a rush to stop a potentially life threatening stroke.  It wasn’t a stroke.

Instead, this was the beginning of a complex medical mystery.  On any given day, my body could rotate between an alarming set of symptoms.  My skin burned like fire, my bones felt as if they were broken, and my head seemed to slowly be exploding.  I struggled to remember simple things and my blood pressure would drop very low for no reason.  All this, and I had days where I either couldn’t walk at all or I was just too weak to move.

My life became an endless stream of visits to specialists , medical tests, occupational and physical therapy.  I was a giant puzzle and no one knew what was wrong with me.  I became depressed, despite an outpouring of support, thinking this would be my life forever.  I wasn’t even 40 and I was plagued by chronic and debilitating pain.  I thought that maybe it was all in my head.  In a way, I was right.

Eventually, I was diagnosed with hemiplegic migraines, a very rare variant of a migraine with aura.  I was also diagnosed with an aortic valve defect, chronic migraine, gastroparesis, and fibromyalgia.  My quest for answers is not over, however.  In April 2018, I received a soft diagnosis of Ehlers Danlos (hypermobility variant), which is another rare disease. Although I meet all of the criteria, I need this confirmed by a geneticist.  There is a lengthy wait.  While I still cannot work in a traditional sense, I am using my story to provide support, resources, and hope to others with chronic pain disorders.  There is a way forward and if we all work together, we can become more empowered and have our best quality of life.  We deserve it!

Yours,
Rie

 

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