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

Random Acts of Ignorance

I figured it was time to update on some of the best random acts of ignorance that I have encountered recently in my life on wheels. I seem to bring out the very best in people.

* I went with my stepmother to obtain certified copies of my birth certificate that are required for filing social security paperwork and other paperwork. The counters at the courthouse were incredibly high, so I could not see over them. There was one accessible counter, but it was being used by perfectly healthy and mobile individuals. So When our turn came, we were called to one of the incredibly high counters. As usual, the court paperworker immediately talks to my step mom because apparently there is an unwritten rule that if someone is in a wheelchair they have lost the ability to speak. My step mom explains that we are there to get copies of "my step daughters birth certificate" and the paperworker immediately looks out over the counter and replies "Oh, she must be really little!" Um, not so much. "I'm not little, I am just sitting in this really new invention called a wheelchair". I was met by prolonged silence and then an "oh". This enlightenment did not stop her from talking to me like I was five years old, much to the amusement of the woman at the accessible counter for other paperwork directly across from me who was trying so hard not to laugh at her coworker.

* A woman where my mom lives is convinced that now that I have "braces" (the ankle foot orthotics) for my legs I am suddenly going to get up and walk. She actually asked my mom how  much longer I would need the wheelchair now that I had leg braces and could walk. Huh?

* The maintenance man who built the wheelchair ramp for my apartment is very nice, but the other day he asked if he could watch me leave my apartment to see how I did it. Um, would you ask someone who walked if you could watch how they walked out of their home? Wanting to be polite, I agreed and about received a standing ovation for the ability to roll down a ramp while holding onto a long scarf that pulls the door closed behind me. He was marveled and amazed. I felt like asking for a quarter for the show. Yes folks, I can get in and out of my own home all by myself, and I can even roll to the grocery store and back solo!! But to watch that show you have to pay in cash!

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.