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

And So I Ran Her Over

When you utilize public transportation, you are handed some of the best comedic experiences of your life for the low price of $0.35 each way - along with the pleasant odor of unwashed humans and a host of germs that have mutated to wipe out entire populations. Today I was greeted by the call of "hey redhead", which did a lot to endear me to the little old lady right from the start as I am still in therapy over the multitude of Little Orphan Annie jokes I underwent as a child. She then immediately begins to put me through the Spanish Inquisition regarding my apparent disability. 
"How long have you been in a wheelchair?"
"You sure do have a mess of contraptions on your legs. What are those?" (THOSE are my KAFOs that cost a small fortune and which enable me the movement to kick you, should you come closer)
"What do you mean you got sick?" (Um, my body stopped working right?)
"Can they fix you?" (I don't know, let me call the vet and ask for a price on that. I have a disability, I am not broken.)
"What did you do before you were confined to the wheelchair?" (I am not confined to anything, I utilize a wheelchair which allows me access to the world. I don't see any ropes tying me up in it!)
"Do you live alone?"
"You live JUST with your mother? Where is your Father?"
This is an abbreviated version of about twenty minutes of her interrogating me about my disability, my use of a wheelchair, my braces, my life in general. I bit my tongue and decided it was better to educate her than to let rip with any number of the smart remarks I had in mind, including the basic "this is none of your damn business". However, she began to refer to me as "Oh you poor pitiful thing". I HATE pity. Pity is cursing in my world. Empathy is appreciated, treasured but flat out feeling sorry for me and thinking you are better than me because I have a disability pisses me off. She started to use "Poor pitiful thing" as if it were my name. I bit my tongue. I took deep breaths. And then, when I was getting off the bus I ran over her toes. The poor pitiful thing just couldn't steer that cumbersome wheelchair she was confined in well enough to avoid her toes, especially with those enormous contraptions on her legs. :)

She actually used the word "pitiful". Ew. I see the class of people traveling on buses has not improved since I was last on one in 1982.

LOLOL. She deserved it.

I too hate hate hate pity. HATE IT. I admire your attitude with it--with Dakin I had someone tell me the other day "I feel sorry for him". I told them not to. I HATE pity--he doesn't need it!!!

Maybe I need to start running over people's toes with his chair...muah hah hah!!

I pity her. But I wouldn't make that apparent if I ever met her - recognizable by the tire tracks across her shoes.

You did good. ;)


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.