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

Long Time Gone

6:58 PM
It has been a really long time since I wrote anything here. My first reason is that I have become very involved in Compassion International. I have a website where I share information about Compassion and the children that I sponsor that is located here. It is still very much a work in progress and there is much more I want to write and link to and share. The second reason I have not written anything here is that without health insurance my medical situation was forced into a holding pattern. I actually have had to discontinue a few critical medications, including an antiseizure medication also used to control my migraines, due to cost prohibitions. I can not afford prescriptions that cost $400-$500 let alone the ones that cost thousands. God has provided with my two most critical expensive medications and somehow each time I reach for it there it is. It is like the fishes and loaves multiplying. I am very nervous today, even though I should be at peace and trusting the Lord, because tomorrow is my social security hearing to determine whether or not I qualify as disabled. I am frustrated that it has come to a hearing and scared the judge is not going to see the severity of my illnesses. If I could work, do any job, I would rather do that than be as I am now. I feel so useless. If they do find that I qualify as disabled this will allow me access to medicare and increase my odds of getting medicaid. Any and all prayers will be appreciated. Hopefully tomorrow I will update with good news!!

UPDATE: The social security judge was unable to make a determination today regarding my case. She is really torn over what to do and at one point had her head in her hands on the table. The problem seems to be that my medical records lack "objective data" to support my claims. My MRIs and Lab work and DNA testing are not abnormal (or abnormal enough) to warrant a case. However, several doctors who all got the idea from my first hospital admission have used the term somatization, or the physical manifestation of emotional issues. I know this is not the case and do not want this label. She feels it is a well fitting label because there need be no objective data. I may have to go for a psych consult to prove that this is not in my head. I don;t know how emotions could cause contractures, bone shifting, documented weakness, an abnormal EMG, and dangerously low blood pressure. I am frustrated but trusting that somehow God has a plan for all of this. Please keep praying.

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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.