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

The Sudden Stop At The Bottom

On Sunday, Prince Charming escorted me to explore the University of Michigan law school campus, as I am seriously considering and slowly preparing to apply to law school in order to become a legal advocate for children. The campus is breathtakingly gorgeous, and somehow a natural fit in a way that even after 5 years and graduation Vanderbilt never was to me. He really wanted me to see the reading room of the law library as it is stunning in its design, and we are both greatly impressed by the beauty of design and history. We located the correct building and began to explore. My first observation was that each window in the series of hallways where we were has a stained glass insert representing some aspect of law. Interestingly enough, the insert for "betrayal" showed one man impaling another upon his sword while the insert for "murder" was far more abstract and less graphic. I also liked the image of a lawyer apparently entering a hospital or home with an old fashioned ambulance just behind him. Even many years ago when these windows were designed, the reputation as ambulance chasers had been established. :) We then decided to try and see if the reading room might be on a different floor. It was at that point that I discovered what must certainly rate among the top 100 creepiest elevators in the state, and fairly high in the nation as well. First, the elevator would not allow the button for up to be activated, only the down button even though there were multiple floors above. This bothered me, because any elevator can go downward even if it is broken, it is just the speed of the ride and the quality of the stop at the bottom that varies. I was not interested in testing out that theory. When the elevator doors opened, they revealed an elevator that might have been large enough for me to enter in my wheelchair but I would have been scraping against the walls and my footrests may have been in the way of the door. There was no way on earth anyone else was getting on with me, but that was not an issue because I was not getting on that thing! The only elevator scarier than that one that I have encountered is the antiquated elevator at the Peabody College Education Library which actually requires you to close a grate and a door before it will work and it also is approximately the size of a shoebox. The Education Elevator also had a neatly printed set of directions taped on the wall informing riders of what to do "When" the elevator stopped working - not if but when. I think if I end up going to law school I may need to learn how to go up and down stairs in a wheelchair :) Either way, it is the sudden stop at the bottom that I am worried about!

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.