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

Hood Ornament

Top Ten Ways to End Up My Hood-Ornament

10. Yell when you talk to me (because apparently since I am sitting down instead of standing, I am also hearing impaired)
9. Ask me what grade I am in or when school starts again (because I am almost 28 years old and would love to securely pass for 18)
8. Tell me how well I "drive" my wheelchair ("thanks, you steer those sneakers pretty well too!")
7. Let your ignorance show ("what's wrong with your legs?" - nothing, what's wrong with your manners? or "why do your feet point in all pigeon toed?" - I'm a ballerina.)
6. Create a business that is not accessible due to stairs, aisles that are too narrow, inaccessible bathrooms, or products that are placed too high (I would rather take my business elsewhere than have to repeatedly play damsel in distress, it gets old quickly)
5. Assume that I have cognitive impairments and speak to me as if speaking to a three year old ("Someone is buying new shoes today!" Yes, and someone is going to put one of them up your arse lady! My IQ did not suddenly drop when I sat down in the wheelchair...there is no magic force of the seated position that destroys cognition. Besides, you work at Walmart, get over yourself! )
4. Help me without asking my permission (Pushing my wheelchair without asking me is like someone suddenly picking you up and carrying you - they may have the best of intentions but unless they are damn sexy, you would prefer to keep your own feet on the ground and remain in control)
3. Park in a handicapped parking spot when you have no legitimate need (Ignorance and Laziness are not disabilities, even though they are really annoying)
2. Stop and stare at me as if I have managed to escape from a circus sideshow (Really, have you never seen anyone in a wheelchair before? If not, you need to get out more! And if you have, they all work on the same principle, and like it or not us "damaged folk" are going to continue to use our rights, so suck it up and deal)
1. Walk or stand in front of me and refuse to move (I love playing bowling ball, and I have earned several strikes already)

you tell 'em !
feel free to smack 'em when they deserve it! :)

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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