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

Name it and Claim It

When I welcome some thing new into my life, it just does not feel right until it has been given a proper name. My computer is named Elphalba after the wicked witch of the west (and I named her correctly!!). My wheelchar is Nessarose, sister of Elphalba who had no arms (my chair has no arms) but could perfectly walk with enchanted slippers. My coffee maker is Klaus,a German in Lederhosen whose speciality is coffee instead of beer and he knows not to talk to me before I have had my coffee. My electric teakettle is Gretel, wife of Klaus the coffee maker, a round and happy Frau who occasionally just has to whistle with joy. My car had a name, like I had a car. Seeing as it is gone we won't bother going there. My ipod is named prism, for through it come music and stories of every color of the rainbow. I have three stuffed animals "Who", "What", and "I don't Know" in tribute to Abbot and Costello. Right now my printer goes by the name "useless pile of scrap metal". I have never named my TV, although my brother named his big screen TV Roxanne and the kids know that if they hurt Roxanne things get ugly - really ugly. So it makes sense that when something moves into my body and sets up shop that I name it too since it is now a part of the crazy thing called me. The spot on my right lung that we have no explanation for but that has never changed is named Bob because I spent a year trying to get someone to at least rescan and it felt like I was always asking "what about Bob"?  My digestive system is named Walter, and it is a very complicated story. But Walter farts can kill. So I have two unnamed additions to my body and that just will not do. One is the pituitary microadenoma that I was taking names for. The other is an assumed lipoma (the scans are unclear) on my left arm that has been there for years but is now growing. So first place in the name that tumor contest goes to Gollum, my hitchhiker in my brain. Second place goes to Peeves, given the honor of being the name of my long term friend in my arm. Prizes will be distributed.

Thanks so much! Then again, wishing your upper-extremity-poltergeist finds another home.


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.