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

A Date with a Vampire

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So my vampire was not a sexy man, transformed at the peak of his youth into a specimen of otherworldly beauty and power. And my vampire could not have protected me from anything more dangerous than a mosquito. But she certainly was thirsty, and she had no difficulty draining me of a decent amount of my blood. I rolled into her laboratory, all innocent with my little order slip from the doctor on my lap, and suddenly she gets this glint in her eyes. She rushes off to the back room, where I hear her shuffling through textbooks and calling a vampire reference laboratory to determine the accurate method of blood draining required for the most obscure tests. Then she returns to the room with an evil little smile, and I begin to wonder whether or not this is such a good idea. One by one the vessels for my blood are lined up and I begin to count them. 1, 2, 3, ...12, 13, 14, 15. Ugh! She must be thirsty, we are tying my all time record of vampire blood draining and going for 15 tubes of blood at once. I must give her credit, her aim with the "bite" was impeccable and in just one attempt a solid vein was tapped. And then the harvesting began. I swear I saw her licking her lips as she changed out the tubes, watching them fill with my deep red blood. Finally, about 5 minutes later and a pint lighter I had met the required quota and was patched up with gauze and tape. As she juggled enough of my blood to feed a nest of vampires, I headed for the door before anyone got any ideas for "extra" tubes or "dropped vials". Besides, it is a little creepy watching someone carry around an armful of your blood, even if they are a vampire. My next date better arrange for alternate dining, because I am not a living catering service and besides, it is going to take a bit for me to recoup that donation. :) Based upon the absolute rarity of most of the tests, and the fact that the vials have to be sent out to vampires at multiple testing sites (including U of M and potentially the Mayo Clinic), I do not expect to hear back regarding the findings or vintage of my blood for a week or two. Bon Appetite!

Well, at least you had a nice red color to your blood! ?

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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