And God Laughs
I told God my plans and He laughed. So now I am living, laughing, and loving according to His Plans.

Theme Park?

While I greatly admire writers who are able to follow a "theme of the day" style of writing, I am generally lucky if I can remember what day it is anymore. However, I do want to integrate a couple recurring themes to my writing that extend beyond the constant medical issues I am dealing with now, for I am so much bigger than my body. Tentatively (meaning if I can keep track of the days of the week and nothing major happens to interfere) I want to try to have "Monday Memories" in which I share the amazing stories of the children that I had the honor to teach and be taught by over the course of 5 years as a college student and 3 years as a special education teacher. I attended Vanderbilt University, where I had the privilege to learn from some of the greatest experts in the fields of every branch of special education. Yet my wisest, most life changing professors were my students. I may have been their teacher, but they in turn were mine and I am forever changed by having known each and every one of them. My wisest professors indeed wore pull ups.
I also want to try to do a "Wordless Wednesday" with photography, but since I am currently relying upon dial up internet (do not even get me started on that, it is like comparing the 1980s car phone with an iPhone) I have no idea how nicely my computer will play. Beyond that, I may expand to themes, I may just continue to write as my life bounces along this wild path, or experiment with different styles. In my heart I am a writer, I have always communicated my emotions and experiences best in writing and throughout my belongings (half of which are still in Virginia - rather annoying) I have over two dozen journals, piles of paper with poems and assorted writings on them, CDs of writing, and odds and ends. Not to mention in my Childhood Memory Box I have journals and writings from when I was little. In high school I once wrote a paper defending cannibalism because we had to write an argumentative paper for or against an "-ism" but were told we could not do something easy "like cannibalism unless you support it". No one else in my class was willing to risk trying to write an argumentative paper supporting cannibalism, but I thought it sounded like an awesome chance to try writing like Jonathan Swift's essay using sarcasm suggesting eating the infants of Ireland to end the famine. I took up the challenge and wrote an awesome paper (great grade too), but the teacher kept it. I wish I had that paper. I also earned a lot of respect from my classmates and friends, although I think they were a little creeped out about being alone with me in a car on snowy Michigan nights for a while. :) Donner, party of 2?

Job 8:21

"He will fill your mouth with laughter and your lips with shouts of joy."

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Wild Olive

Wild Olive

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Creative Victory

This is Me

I am a thirty year old enigma who has defied every expectation ever placed upon me and refused every definition created for me. My greatest passion in life is to make a difference in the lives of children with special needs and their families. As a special education teacher I broke all of the unwritten rules to make sure that my kids received the services they needed and had a right to receive. I have never been so proud to be reprimanded before in my life. Now, due to unpredictable twists in life, I am learning first hand what life is like when you rely upon a wheelchair for mobility. I am a medical puzzle with the pieces slowly being identified and put together, and my medical bills alone could fund a small nation. It takes a village to keep me alive. :) However, I am not defined by the genetic misspellings. I am a teacher, a daughter, an aunt, a friend, a dreamer, a reader, an amateur photographer, a writer, an advocate, a star gazer, a world changer. I am stubborn, situationally shy, quick to use humor and wit to make others laugh or cope with a situation, sarcastic, fiercely independent, giving, compassionate (sometimes to a fault), protective of those I love, defiant of arbitrary boundaries, perfectionistic, self conscious, self assured (yes you can be both!), articulate and occasionally dramatic. And that is just what I could fit in two sentences! :)

Who's On First, What's On Second, I Don't Know! (Third Base!!)*

Simple Vocabulary Definitions for those who may not speak fluent medical :)

Undiagnosed Progressive Neurological Disorder- This is the diagnosis that is believed to make everything else fit together. It explains my frequent infections, my muscle weakness and dystonia, my dysautonomia, my cardiac issues, my inability to regulate blood pressure, my dysphagia, my ataxia, my severe fatigue, my extreme nausea, my gastrointestinal dysmotility and IBS like syndrome, my unbelievable migraines, my sensory changes in my arms and legs, my vision issues, my hearing loss (so much for blaming medication), and so much more. Going back to infancy and childhood, this would explain the severe apnea, the significantly delayed motor skills, the reason why I could never keep up with my peers in physical activities, the neurogenic bladder, the malfunctioning thyroid, and my frequent illnesses and vomiting. This is the diagnosis now being used since the DNA testing for Mitochondrial Disease came back odd and I can not afford the expenses of a workup at the Mayo Clinic. We are treating symptomatically.

Pan-Dysautonomia- "Pan" means that it impacts many different systems of my body, "dysautonomia" is a failure of my autonomic nervous system or the part of my brain that does all of the automatic things that do not require conscious thought like telling your heart to beat, regulating your blood pressure, adjusting your body temperature, maintaining balance in space, digesting food, hunger and thirst, etc. It is believed that I have had this from birth based upon my history of symptoms, including severe life threatening apnea as an infant, but the cause remains elusive at this time

Dystonia- abnormal muscle tone and spasticity, including painful spasms, that primarily impacts my feet and lower legs and is now starting to be a problem in my back

Ataxia- difficulty maintaining balance and coordinating/executing movements

Dysphagia- difficulty swallowing due to any number of causes including muscle weakness and poor muscle coordination

Adipsia- the absence of a sense of thirst

Other Medical Issues- Lupus Anticoagulant (autoimmune disease that causes me to tend to form blood clots and has already caused two deep vein blood clots and one mild stroke), Migraines, unknown connective tissue disorder, abnormal gastric motility, allergies, history of v-tach and severe sinus tachycardia, changes to my echocardiagram that include leaking valves and a new murmur, low blood pressure, ataxia, untreated PFO (small hole in my heart that increases the risk of stroke), chronic lymphadema in my left arm, Hashimoto's Thyroiditis, Narcolepsy/Idiopathic CNS Hypersomnolance (believed to be a result of the dysautonomia and my brain's inability to regulate the sleep/wake cycle), mild hearing loss, malformed optic nerves, polycystic ovarian syndrome, pernicious anemia, vitamin deficiencies

* Title comes from an old Abbot and Costello routine that I chose to memorize in 6th grade and absolutely love.

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