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

New Year

I am not a fan of New Year's Resolutions because they are generally unrealistic changes that result in a sense of failure by the end of the month. Besides, if something in my life needs a change why should I wait until a specific day of the year to change it? I do like the idea of an entire year spreading before me untouched, unwritten, unformed, rich in possibilities and hopes and dreams. I like beginnings and fresh starts, but really we get those every morning when the sun rises and we are given another day.
Things I would like to accomplish in the new year are a renewed sense of appreciation for everything in my life. I have recently (starting sporadically last year and consistently in October) begun listing 5 things every day that I am thankful for that are specific or connected to that day. It makes me recognize the multitude of little blessings as well as the big ones. So that is my "resolution". I could add that I would love to try my wheelchair out at a skate park and see how much air I can catch before I (fail to) land, or that I really would like a diagnosis - even a custom made one just to humor me would be appreciated like "yurskreewid disease", or that I would love to watch the weight I have added from taking steroids and other meds to increase my blood pressure combined with limited activity melt away but really I first need to learn to love myself however I am. Besides, failling to launch myself into hang time or getting a diagnosis or lose weight are in a lot of ways out of my hands, but gratitude is within my control.
And so for the record, today I am thankful for all of you who are reading this, for tylenol to bring down my daily fevers (yes, I know I need to call the doctor as these have been going on for over a month), for every step I am still able to take even though they require assistance, for the escape in music and audiobooks, and for hope and dreams.

I'm with on the hopes and dreams! I'm thankful to have found you out here and that we get to share our struggles and (even sometimes) joy. I wish you many more steps and all the best in 2011!

You are amazing! I too hope the best and most beautiful year for you.

Gratitude will get you everywhere. I mean, it is a powerful thought-force. You show great mental strength with the commitment to be thankful.

Was a diagnosis on your Christmas list to Santa?

Love your first paragraph - going to adopt that myself.

I'm thankful for you, Bethany.

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.