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

Translation Required

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Apparently I am getting old. Yes, at almost twenty-eight years of age (and still not consistently passing for twenty-one) I am now having to translate my normal speech for teenagers. I was wedged into a corner of the most inaccessible, cramped and crowded store at the mall where I was trading in games for my Nintendo DS when two tween boys began to enthusiastically play the display model of the Wii that was about two inches from my rear tire. I felt like I was ring side at a boxing match, only a little too ring side as I ducked and dodged the Wii-mote flailing about my head. Finally I had my trades in hand and attempted to maneuver out of the corner.
Me: "Excuse me, please"
Boys: glance at me, then return to playing
Me: "Excuse me, Please!"
Boys: do not even acknowledge my presence
Me: Translating into Teenage language "I will run you over if you don't move"
Boys: rapidly move aside and allow me to navigate through
Apparently something was lost when I spoke polite adult English that became perfectly clear when I brought it down to a simple statement of the facts. They may not understand manners, but they do understand cause and effect - you move, you keep your toes; you don't move, I give you a one of a kind pedicure free of charge. Just like I had to helpfully explain to the teenager behind me in line that I could not move away from the counter unless they backed up and gave me space because my wheelchair has yet to get all go-go-gadget and fly, and the only way out was backwards. Apparently in his quest to own that video game immediately, this logic had escaped him. I was patient and gave him time to figure it out before pointing out that he could pay for his game if he would move for just a moment so I could backup. It was like watching a moment of revelation as this logic processed through his brain. I then made my way to Target to pick up a prescription (which they screwed up - I pity the pharmacist on duty when I go back tomorrow; this anger stage of dealing isn't pretty but I have checked off all of the others) and buy a new charger for my iPod because the other one had a loose wire. I also happened to end up with a new skirt, short sleeve cardigan, tank top, and hat. Go figure!! That translates into I may be stuck in this wheelchair, but I am going to have style and demand that the world see me and not just the chair. :)
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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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