2008 was defined as the year of new beginnings. In many ways it was. But beginnings are always something bright, shining and new. My year for beginnings meant revelation and resolution. 2009 will require reinvention. A beauty of a butterfly can only be realized after the transformative process of metamorphosis. Maturity and wisdom comes through learning, experience and revelation.
January, last year my expectations were high. But most of my perceptions were distorted by the euphoric high and mania caused by high doses of steroids as well as the neuropsychiatric component of my illness. That's the double edge sword of the current pharmaceutical treatment. Prednisone's suppression of the self inflicted immune attacks is life saving, but the havoc on the hormones intensifies many neuropsychiatric symptoms. It has been hard to determine the source of the devastation to my mind.
2007 was a year of tapering off the multitude of "anti-drugs"...antidepressants, anticonvulsants, antibiotics, etc. After 2008 was spent detoxifying, I began to feel like myself again. So I conclude that blind use of the pharmaceuticals led to a synergistic affect.
Unfamiliar with the extreme and strange symptoms uncommon in their usual lupus cases, my treatment was compartmentalized. Rheumatologists and Internist had referred me to other specialist to treat the unfamiliar "spells." The neurologist and neuropsychiatrist treated the "spells" according to the nearest diagnosis in their repertoire, "petit mal", "nonepileptic seizures." I eagerly consumed a daily cornicopia of brightly colored pills with every hope without any question. I became a zombie. I retained all of my knowledge but as a naive 6 year old. It took months of irrational behavior before I realized my mental status and began to suspected the drugs. That revelation led to the first steps of resolution, tapering my medications seeking non-pharmaceutical approach to managing my symptoms.
After being completely off of all the "anti-drugs", obsessive compulsive symptoms significantly improved. The overwhelming anxiety was no longer constant. I could recall the perceptions I had before. Beginning with detoxification, I began taking charge of my health I began asking questions. I began questioning, wikipediaing and googling every symptom, drug and doctor. The revelation was that many of my neuropsychiatric symptoms even certain strange idiosyncratic behavior that I'd developed were a part of a pattern consistant with frontal lobe problems. It didn't matter what the cause, traumatic brain injury of a car accident, ischemic lesion of stroke or something biochemically complex as Asperger Syndrome, their were defined set of symptoms that often occur together when specific areas of the brain are affected. No doctor had really defined what was causing my neurological problems. All they would do is tell me what it was not. I was not epileptic. Repeated MRI, EEG, etc that revealed nothing. They literally shrugged their shoulders. Yet I was prescribed antiepileptic drugs, because that's what they know. I was determined to have some concrete measurable evidence of the devastating neurological deficits that have turned my life upside down.
I read a poignant forum post about who could no longer work to support his family because he "couldn't think." The culprit APS. That was my next major revelation, the discovery that APS could be responsible for neuropsychiatric symptoms I was having impaired thinking, seizures, paralysis, etc. The APS website provided me with the first doctor, a hematologist, that had some familiarity with my strange symptoms. He recognized the foreign speech I'd aquired as a symptom not a West Indian accent its usually mistaken for. He'd witnessed a case of lupus with APS that aquired the same "accent". He warned that there's no cure or successful protocol for treatment. Comprehensive testing of blood and brain scans didn't reveal anymore. APS probably causes undetected tiny blood clots in brain capilaries coupled with the ubiquitous inflammation of lupus autoimmune activities to upset my brain chemistry, perhaps even causing TIAs or ministrokes. He could only offer continued maintenance of therapeutic blood thinners to reduce clotting and prevent the worse case scenario, stroke or pulmanary embolism. Having an expert acknowledge and clarify my symptoms within the context of SLE and APS was satisfying despite lack of new treatment He listened and didn't go straight to the prescription pad. I had made a decision not play guinea pig to anymore new fangled brain pharmaceuticals. He supported my decision. He also initiated the next major step of resolution. By suggesting neuropsychiatric testing for some measurable evidence of my symptoms and some help coping. I began very rewarding weekly sessions with a psychologist at the same cancer clinic trained for patient couseling. Not only have we dealt with the anger, grief, anxiety she has helped me find seek resources to solve the concrete problems such as a pro bono lawyer to help with child support or nonprofit organization help with home repairs I completed a battery neuropsychiatric tests in 8 intense sessions to produce a comprehensive detailed report on my brain. I finally had acknowledgment and evidence. My neurological deficits have been defined.
I established The Mission based on my new philosophy of thinking wholistic:
Surviving The Disease requires healing The Mind, The Body and The Spirit.
Now I've I'm reviewing my web development skills to establish a new social networking site to collaborate with fellow bloggers. Ardent Cerebrations: The Musings of Lupus Survivors! Last years revelations and resolutions broke me from a cocoon, my own metamorphosis into a new butterfly, this year I plan to fly.