Watching From the Outside

As everyone knows by now, I have Systemic Lupus and Autonomic Dysfunction.  This has been my life for over ten years.  It has been like living on a seesaw that never ends, and my parents have had to watch, from the outside, every painstaking moment of pain, confusion, frustration, depression,  anger and finally acceptance of my illness. 

I am now on the other side of this, along with dealing with my own illness.  I am watching my mother struggle with, not only Systemic Lupus and Sjogren's Disease, but also NMO (or more commonly known as Devic's Disease).  This disease falls under the umbrella of both transverse myelitis and, until recently, was misdiagnosed as Multiple Sclerosis because of the lesions that form on the brain and spinal chord.  Like my Mom, many people with NMO also have other autoimmune diseases. 

My Mom was "lucky", in that she was treated early, and did not suffer the paralysis or eye involvement that impacts so many with this devastating disease.  She does, however suffer from pain sensations and numbness...she must take medications that she NEVER took for her lupus or Sjogren's. 

Watching from the outside is much more difficult then I ever thought possible.  I had hoped that I would be of more help...that I COULD be of more help, having been through my own illness.  I would never wish these illnesses on anyone, but this process of grieving the life once had is one she must go through.  As much as I understand that, I want to make it better for her.  I want to show her that through it all, that despite medications and possible relapses, we have survived and are moving ahead, even if is slowly. 

The link I posted below is for a fundraising effort for NMO, which is a rare autoimmune disease that attacks the spinal chord, optic nerve, and sometimes, brain.  It causes lesions that inflame leading to paralysis, pain, difficulty with organ function at all different levels (depending on where the lesion sits on the spinal column), and fatigue.  The medications to treat NMO when in a flare are HIGH dose prednisone and different immune-suppressants or plasmapharesis. 

Please take a moment to look at this wonderful site below to help out a worthy cause!  Rare diseases get so little attention...Let's bring awareness and education to NMO!  We need better treatments and a most definitely a cure!


Cure NMO Bracelets and Key Chains

or you can donate to the Guthy-Jackson Foundation