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

Odds and Ends

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Yesterday was my first day back at physical therapy. This morning, I am remembering why I renamed it physical torture (at least at first). We did nothing really strenuous yesterday as the PT had to do a new evaluation to have a baseline for therapy so it was a lot of range of motion and stretching, and some walking with a walker. Yet this morning my legs and back hurt so badly that they had the audacity to wake me up at 6:30am because there was no comfortable position to lie in to sleep. So I had to get up and eat a decent breakfast before I could take pain medication, because taking that on an empty stomach is about the same as drinking a bottle of acid with a chaser of Ipecac syrup. Charming, I know. I had just managed to fall back to sleep in what has got to be the oddest contortion ever in the once-upon-a-time-recliner-but-now-just-a-chair and ottoman when my cell phone received the daily weather text message. Yes, I signed up for this service but they did not warn me that the text would arrive at 7am. Ugh! I was unable to recreate the odd contortion that had been so comfortable, so I surrendered and am awake for now. I joyfully have PT again today, which means that tomorrow my muscles will most likely establish rebel armies and stage guerrilla warfare against my body. Something tells me that they will not accept a peace offering of bananas either. :) Right now in physical therapy, since the neurologists are still working on a diagnosis, we are stuck doing pretty much the same things as before. Stretching, range of motion, maintaining strength, balance, loosening up tone as much as possible. The PT finally realized something I have known for months - when I am able to pull my foot upward (usually when under the impact of a medication), my toes pull significantly tighter. This indicates that after months of being "stuck" in their contorted positions, the ligaments in my ankles and feet have shrunk and so in order to pull my feet upward they have to contract my toes even more tightly. To which I say "duh!", this is one reason even attempting to try to stand or take a step with any approximation of a flat or neutral foot does not work - pull foot inward and up to that 90* angle and my toes are so tight they feel like the bones will snap. So I think we are going to work on stretching the tendons out as well. Sometimes I really wish I could do something textbook because PT would be so much easier if they knew what they were treating; the PT has told me that in her 30 years she has never seen anything quite like my symptom presentation. Why can't I be the horse whose hoof beats you hear instead of a zebra with a purple mohawk in a tutu wearing ballet slippers and dancing the dance of the sugarplum fairies? I know I am one of a kind, but it gets old after a while.
Good news, yesterday's preaching bus driver will not be an issue and I do not need to be concerned with him driving any of the buses that provide my transportation to/from PT or anywhere else. My final two comments on that incident (which really upset me, had me in tears, and left me feeling assaulted and violated) are "before you even try to touch a speck in someone else's eye you may want to check out the 2X4 in your own" and "Let he who is without sin cast the first stone".

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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