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

Warning: Slow Learner Ahead

I joyfully thanked God for providing me with the opportunity to purchase Elphalba, my laptop, at an incredible price at an after Thanksgiving sale just before I would become sick beyond my imagination and all of the wonderful things I was able to do with her. I then told him my plans for using her. Will I ever learn? On Saturday evening, I shut Elphie down, and she was set in her usual sleeping place in the corner for the night. Sunday morning when I went to turn her on, God laughed. Ie green power button lighting up and the fan turning on were the two responses from Elphabla. The screen remained absolutely pitch black, and she did not make any of her usual computer sounds. I tried several home remedies, including removing the battery and reinstalling it, restarting any number of times, and letting her sit for a "time out". She is still dead. Thankfully the warranty is still good, so I have to take her in for repairs, but for the next 2 weeks or so I am without my laptop. I am using my mother's ancient computer. And by ancient I mean the monitor is Packard Bell and the tower has an original first production Intel processor. I could brew tea in the time it takes to change pages, and it likes to suddenly shut down without warning. Charming creature of early technology. My concern is that, like the slow learner I am, I had not yet transfered my files onto the brand new thumb drive I purchased for that exact purpose about two weeks ago. I would miss my photographs greatly, but I would be devestated if my writings (journals, poems, etc) were lost. I had also collected a large number of Bible verses and chapters that I had prepared to study regarding faith, suffering, trials, healing, and perseverence. I saved them all on my computer in a Journal format and I could never recall all of them on my own. Ugh! I can access some things from my cell phone, but not much. In the meantime I purchased a cheap portable DVD player so I can still curl up in bed when I don't feel well and watch DVDs (I am in love with the second season of Pushing Daisies which just came out on DVD), and I can listen to my audiobooks which tend to arrive in MP3 CD format (I usually transfer them from computer to iPod so I can listen). I know better than to pray for patience, but I really have got to learn to stop telling God what I am going to do and instead just follow Him in every single way. This lesson is hard for me, and it is getting to be expensive LOL

* When I say "And God Laughed" I simply mean God smiled at my humanity and my belief that I was in control like a Father smiles at a toddler proudly announcing "Me the boss", and then my life followed a different path - His path.

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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