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

Go

This morning started off with a series of small frustrations that led to the breaking of my ability to cope. It is generally not something large that causes me to crumble but something small, something little and seemingly inconsequential in the grand scope of everything that, when added to the burden and weight of everything else sends it all tumbling down. I had met and then exceeded my maximum capacity for processing life in general and my life specifically. These moments and times are rare, but they do happen and I am learning not to feel inferior for allowing them to happen but to realize that they happen because I am mortal, human, flesh blood and bone. So after a good cry and informing God exactly how I felt today about His plan for my life, I decided that I needed to DO something in order to regain a sense of order. Normally I would have escaped on a super long hike through the woods where God and I would have had a long conversation and He would have shown me through His creations just what I needed to learn. Normally is not an option. So instead I set out with Nessarose (my wheelchair) and decided to just GO. First I went to the library, one of my favorite places (I love to be surrounded by books) to return my last set of books and see if I could find any new ones. We have a small town library so normally I borrow books from other linked libraries that have a larger selection, but I was able to find a few. Then I went to a restaurant where I had a kids meal and then ice cream for dessert while reading one of my new finds from the library. From there I went down to the old downtown waterfront (riverfront) area and watched barges on the river, enjoyed the breeze from the water, and made a trip to an old fashioned drug store to pick up a medication and something I have been looking everywhere for. Then I went back along the streets lined with family owned businesses, over a river glimmering in the sunlight, and back along quiet neighborhood streets to my home. By the time I got home I was exhausted, but I was also a lot more at peace. I am still processing emotions and having an off day but it is so much better than this morning. Best of all I coped with what easily could have been overwhelming emotions in a positive, productive, and effective way and recognized that *gasp* I am mere human and will have bad days and that this does not make me any less of a person. I shall finish the evening with fuzzy pajamas, hot chocolate, and a good book, and have sweet dreams of a new day tomorrow.

Job 8:21

"He will fill your mouth with laughter and your lips with shouts of joy."



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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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