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

I am Unique, Just like You!

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Yesterday at the mall I had the opportunity to practice my favorite new sport - wheelchair bowling. Basically, this consists of me serving as the rolling bowling ball and individuals who are too ignorant or rude to realize that walking directly into my path is a bad idea serving as pins. Small children and the elderly do not count. I figure I am not wasting the skin on my hands that is required to try to suddenly stop my chair, even with gloves on, because someone is too ignorant to realize that I have the right to be there and might not be able to stop within a 2 second time frame so they can walk in my path. Also, I say "excuse me" once, and then I figure if I know you heard me you must want to be a bowling pin. :) So yesterday I was cruising at a good speed down the hallway of the mall, trying to make it to the exit where the bus stop is in time to catch the bus. A group of teenage wanna-be punks decided that it would be a great idea to meander directly in front of me and then just kind of slow to a stop in the intersection. These kinds of teenagers greatly amuse me because if you speak with them they will insist that with their torn, baggy jeans and black nail polish and spiked hair and converse high tops they are rebelling and being a completely unique individual. However, each of their friends also happens to be rebelling and being completely unique in just the exact same fashion. this coincidence escapes them. It also escapes them that if they were really being successful at being unique and individualistic there would not be stores that catered to them because there would be no "them". I love the mentality "I am being an individual and I am being unique, just like all of my friends!". So anyway, a group of these punk clones was directly in my path and I was going slightly over what is probably considered the speed limit. I swerved and did make an effort to slow down, but I also felt the need to educate them in the ways of the world. So as I narrowly missed several sets of converse high tops and pale legs sticking out from ultra baggy shorts, I announced "This thing does not come equipped with brakes. It is pretty stupid to walk right in front of me and not expect to get hit!" Most of the clones - sorry, unique individuals, were absorbed in their conversation regarding some musician but one of them who just missed losing a few toes heard me and began to laugh hysterically. As I wheeled away, I heard him calling out to his minions, um one of a kind friends, "Hey guys! Did you hear her?!?" So they may be unique punk wanna be clones, but hopefully they are slightly more educated and less likely to cause a wheelchair crash clones. I am Hell on Wheels, Educating the World one group of Bowling Pins at a Time!! :)

amazing that this group of "indivuals" pardon my spelling, were cohearant enough to understand move your butt out of my way!

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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