Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Friday, June 1, 2018

Black Dress Day

BLACK DRESS DAY  🖤  A SIGN OF HOPE
[See photos for explanation of Black Dress Day]

A day late on posting this due to doctor appointments and a crash...  But here is the sexy slinky black cocktail dress I bought years ago and dreamed of wearing on a night out with my future husband.  Right before I went down with M.E., as an athlete I was in the process of getting into killer shape so that I could show off my best assets in this simple dress.  To this day it remains in my closet unused.  More like a funeral dress for my former self as well as all those who lost their lives to M.E.

At the end of M.E. awareness month, I have run out of steam and will be slowing down on my activism.  However, I must note how VICTORIOUS I have been during this month of fighting for my right to exist. I was able to participate in a demonstration in which I felt heard and seen. I was able to gain new friends and support networks both in person and online. I was able to enlighten many people to the true nature, severity, and gravity of M.E.  I was able to convince my doctor that there is something seriously wrong with my body. I was able to schedule appointments for intensive diagnostic testing at some of the top medical centers in the country.  I was able to adjust medications to increase my level of comfort.  I was able to gain tools that will help me set boundaries and communicate my needs as an M.E. survivor in ways that will improve my quality of life. 

So however much all of that may have cost me  in the progression of my health, it was all worth it.  Therefore, this month's black dress is a sign of hope. Maybe this was the month that set me on the path back to being able to wear it some day.

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