After years of chasing an illusive illness- and true diligence on the part of great physician- I finally received a diagnosis.  Autonomic Dysfunction.  To help others understand what AD is, the autonomic nervous system regulates unconscious body functions, including heart rate, blood pressure, temperature regulation, pain receptors, gastrointestinal function, endocrine and metabolic responses to stress such as the "flight or fight" syndrome.  As regulating these functions requires multiple organ systems, dysfunctions of the autonomic nervous system encompass various and multiple disorders.  Patients experience a lack of muscle coordination and a dramatic decrease in blood pressure when they attempt to stand (currently my resting blood pressure is 80/50 on 2 blood pressure medications so that gives you an idea that this is a significant problem.)  Similar to Parkinson’s Disease may develop, such as slow movement, tremors and stiff muscles.  Visual and sleep disturbances, intense pain, and decreased sweating may occur. I hit the Trifecta- I have them all.

For the last several years, my illness had been cyclic with periods where I have felt intensely bad and others where I have felt nearly "well" and able to work.  Towards the end of December I began to have a relapse and by the day after ChristmasI was back in the hospital and two days after that I was in ICU with a critically low blood pressure and a falling heart rate. To compensate, the doctors placed the head of my bed toward the floor and my toes toward the air and… I don’t remember much after that.

Since than my life has been dramatically different.  My blood pressure remains low.  I am unable to control my body temperature.  I walk around like an old woman (if you considering to and from the bathroom walking around.)  I am essentially bedridden. My goal is to make it downstairs to lie on the couch once a day. I achieve this about 3 of 7 days.  I may be able to take a bath once a week, sometimes twice and a shower is simply out of the question.  I lie on a bed of pillows because the mattress hurts my body worse than anything I can describe to you and is unrelieved by pain medication. My mother, who lives about a block from my home, cooks my meals and I rely on she and my husband for everything.

In early June, my colon began to slow down and quit working (colon inertia), this caused me to become nauseated and unable to eat. I slowly became malnourished, dehydrated and….. another hospitalization.  My doctors have made arrangements with Dr. David Robertson at the Vanderbilt Autonomic Dysfunction Center.  I’ll keep you posted.

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