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

Victoria's Not So Secret

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I am somewhat modest in my choice of clothing, believing that I can have my own sense of style without needing to have even the imagination showing. In the past I have been incredibly shy and self conscious, but for some reason I have found a new confidence and assurance in who I am since discovering my life on wheels. Not only does this make dealing with the frequent stupid comment easier, but it makes life in general more enjoyable. As a result of the many body changes from my illness, I have needed to purchase multiple wardrobes including undergarments. I made the mistake of purchasing a "7 styles in 1" bra from Victoria's Secret because at the time it was comfortable and seemed highly functional. What I failed to take into consideration was the fact that in order to serve 7 styles, the straps were removable, and that being in a wheelchair my arms, shoulders, and upper body move a lot more than usual. In fact, I can state with documentation that they move enough to cause both bra straps to come unhooked from one of their two fastening locations, causing a bright pink bra strap to dangle out of each of my shirt sleeves for all of the world to see while wheeling in a store. There is no dignified way of dealing with this situation. There is no dignity in this situation. I surrendered and just went for the reach up my sleeve and shove the dangling strap down my back route. There were a few guys who found this process highly entertaining, and I was tempted to collect money for the free show but by that time I was blushing as pink as that blasted bra. Normally I would have ended up humiliated for life and most likely in tears of embarrassment. Now I just ended up laughing hysterically at the entire situation and how I managed to break free of both straps within the same short time period. Apparently Victoria's Secret is not always such a secret...sometimes it is a bright pink flag flapping in the wind out from underneath your T shirt sleeves.

I love that you were able to laugh about this and not cry or scream... I don't know what I would of done... but then my kids love to point out that mommy has a squishy belly.... who needs to worry about bra straps when my kids keep me worrying if I can duct tape them in public? :)

Teaching summer school, I had a child who was convinced that because my stomach was less than a size 4 flat and firm that I must have a baby inside of it. That was charming to deal with and explain. Cute kid, but at that moment I actually wished she were a little less verbally skilled!

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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