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

Babbling on a Saturday Morning

Recently I have purchased several TV series seasons on DVD because 1) there is never anything decent on TV when I have a "turn" to change it from HGTV (my mother is addicted - is there HGTV addicts anonymous? A 12 step program? Detox? Anything???) and 2) the couch is about as comfortable as a park bench, so with DVDs I can curl up in bed and watch them. My choices, however, seem to show that I am a freak obsessed with things forbidden to most Christians...that I am being lured to the "dark side" where Darth Vader awaits me. My DVD movies I bought include a two disc special edition of The Nightmare before Christmas, which I immediately snatched up because last year my incredible friend and I spent weeks trying to find a copy of it so she could educate me on the magic of Tim Burton, The Boy in the Striped Pajamas, which I know is heartbreaking but is a story that is powerful and needs to be told to new generations, and I still love my copy of RENT live on Broadway. MY TV on DVD selections are TrueBlood, which I am savoring and eagerly awaiting season 2, Ghost Hunters Season 4 Part 2, Paranormal State Season 1, Emergency Season Two (old, old show about paramedics that I used to watch in reruns with my mom and that is hysterical from the current technology), and Pushing Up Daisies. Somewhere I also have the final season of Gilmore Girls on DVD that I bought over a year ago. I have always admitted to having a wicked dark sense of humor and A willingness to view the world from different perspectives and avoid judgment. Besides, another four hours of watching people debate over which shade of white (off white, antique white, true white, dusty white) paint to use or how many throw pillows is too many is far more dangerous to my psyche than some hot vampires and ghost busting!! My weekend plans - vampires, ghosts, dead people brought back to life, old TV shows, sketching, working on an impossible puzzle, reading one of the 10 books I now have scattered around the house, writing a few letters I really need to write, and enjoying the relief I seem to be getting from the newest medicine cocktail. Whoever said diamonds were a girls best friend obviously never dealt with muscles in revolt, because screw diamonds Valium, Klonopin, and pain meds are my best friends right now. I went an entire day without one of the "jerking my knee violently up and smashing it into my face" spasms yesterday, and just when my legs started to really hurt and contract again, I had just taken the Klonopin and pain med. Maybe, just maybe we have a system of meds that will offer some relief?!?! I was wondering how I could explain the inevitable bruises from my knee slamming into my face, or my joints swelling from dislocating from the severe contractions. Is it domestic violence if your body beats you up?
I realize that this journal has contained a lot about my medical situation right now, and that is not the defining feature of who I am as a person. However, at this point in my life it is a huge obstacle that I am having to adjust to and deal with on a daily basis. Keeping a record not only helps me share information with friends and family, and express my emotions, but it also helps me keep straight all of the different things going on. I am still very much my quick witted, sarcastic, take life as it comes, independent to a fault, love to laugh, passionate, dedicated, dreaming, always learning Bethany that I have always been. The obstacles in my way have just changed temporarily. Instead of being up to my elbows in diapers and laughing as my students proved to me over and over that I was truly the student and they the teacher, I am up to my elbows in a medical quagmire and I am laughing as God is proving to me over and over that I am not in control and never have been. I am not a fan of that lesson, and we debate this often - but I lose, and he laughs at my silly willfulness. Hey, He designed me this way, attitude and all. I even occasionally debate with him the concepts of justice and fairness. He lets me yell all I want before gently reminding me that earthly justice is not the same as heavenly justice, and that life comes with no money back guarantees or warranty. That in a broken world, no one is spared. And he laughs gently when I admit that I know this but it still just sucks.
This post probably makes little sense, as it is just unedited free writing as I am curled up on my bed with a dish of frozen cherries (one of my favorite treats on earth!) and an assortment of my DVDs and books. It is real, it is straight from the heart, and it is my life. And it is well, it is well with my soul.

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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