Tumors, Nerves, and Surprises of Surgery

It was Wednesday, March 11, 2009. To my shock and horror, I gradually realized that I was effectively paralyzed from my legs down. With vivid memories of surgery #2, I wondered what would be next. I was unable to do anything on my own for days and days after the surgery (surgery #3 of 5, asContinue reading “Tumors, Nerves, and Surprises of Surgery”

Screaming But Nobody Can Hear Me

It was Wednesday, September 6, 2000, sometime late in the morning. I was in the intensive care unit following major surgery (surgery #2 of 5 for Neurofibromatosis, as of June 2017) and screaming for help. I was screaming because every tiny little breath hurt like fire and nails. Every tiny millimeter I moved or turnedContinue reading “Screaming But Nobody Can Hear Me”

Brain Fog, Pain, and Surgery

Just over one week ago I had surgery #5 at U.T. M.D. Anderson Cancer Center to remove two painful Neurofibromatosis tumors on my left hand. Unlike my first three surgeries, the two most recent ones have been comparatively minor. Here are a few before pictures: And after pictures: The experience at the hospital was outstanding. U.T.Continue reading “Brain Fog, Pain, and Surgery”

Ableism, Travel, and the Realities of Living with Neurofibromatosis

To begin, this post is not directed at any individual. I have numerous friends who regularly travel, and that’s great. I always enjoy hearing about places around the world. However, as I have recently mentioned, May is Neurofibromatosis month (read more here), and I wanted to make a few more comments about ableism and travel. For peopleContinue reading “Ableism, Travel, and the Realities of Living with Neurofibromatosis”

May is Neurofibromatosis Month!

Neurofibromatosis is the most common genetic disorder, affecting me and approximately 1 in 2,500-3,000, yet most people (including some medical doctors!) do not know about it. There is currently no cure. Research is needed, (and because of neoliberalism,) research really, really depends on donations.  Neurofibromatosis affects the entire body. Some symptoms include:  People can haveContinue reading “May is Neurofibromatosis Month!”

Learning That I Don’t Have to Tolerate Pain

One of the words that could summarize my life is pain: lots and lots of really bad pain. There have been many periods–years long–during my life where I hurt essentially all of the time. Given my body’s reaction to Neurofibromatosis, I can pretty much hurt anywhere. I have dealt with all kinds of nerve painContinue reading “Learning That I Don’t Have to Tolerate Pain”

Obamacare is Saving My Life. Will you let me live?

No one is born voluntarily. Even more, no one asks to be born with permanent disorders and diseases. And because of capitalism and its inhumane nature, people like me “cost” millions of additional dollars over a lifetime in order to live. And this is largely due to being born in the United States. The UnitedContinue reading “Obamacare is Saving My Life. Will you let me live?”

The People Deemed Too Expensive To Live – the Crisis of Health Care in 2016

Sometimes the United States is a disgusting thing. As another enrollment season begins, yet again, more health insurance companies are deciding who has the right to live and who doesn’t. I am again one of the millions of people deemed too expensive to be worthy of life.  The United States is such a backward country withContinue reading “The People Deemed Too Expensive To Live – the Crisis of Health Care in 2016”