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

Faith and a Long Awaited Appointment

This afternoon I have an appointment at the regional MDA clinic. I was referred by my amazingly dedicated primary neurologist in an attempt to try to find a diagnosis (there is at least one specifically that she has in mind to rule in or out). To say that I am nervous and anxious would be a wee bit of an understatement. Yet I am not nervous and anxious for the reasons that many people who would find themselves at such a clinic would be; I am not afraid of hearing that I have a certain disease or disorder. We already know that I have some sort of significant progressive neurological disorder that has tossed my life inside outside upside down. We already know there is some major malfunction that ties in with the severe dysautonomia. I have had to accept that something has forever changed how I am able to use my body as a tool to access the world, and I know that I am dealing with something that has a little more of an attitude problem than the common cold. What we do not know is WHAT exactly the disorder is, we have no name for it, and with no name we have no way of knowing how to fight the monster or what to expect from it. I am nervous and anxious that once again this will be a dead end. I am having to slowly accept that modern medicine has limitations and we may never be able to give a name to this monster, and I will forever have to live in the gray area of the unknown. For me, this is very difficult because I crave even the illusion of control in my life. All along none of this has been in my control, my life has been God's from the beginning but for so long I was able to fool myself into believing that I had some control and in this I found comfort. Now that comfort is gone and I am learning what true faith is. Faith is in the gray, unknown area - in accepting that even if there is never an answer it will all be used to God's glory and that from what seems like a less than ideal circumstance to me will come amazing blessings. Faith is accepting that I don't have to have all of the answers. Faith is hard. For today, faith is believing that God has already created the perfect plan for this day and that His will for it is better than mine - be that an answer or not. For today, faith is letting go of the fear and anxiety and trusting that God will provide all I need.
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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

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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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