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

Ice pack on my Pride

So this evening I had the brilliant idea that since my new AFOs provide better stability when I stand, I should try and see if I could take any steps without assistance. No, I do not know why I temporarily forgot the fact that the last time I attempted this stunt I face planted with astonishing speed and force or the fact that I have a hard enough time maneuvering with my crutches. It seemed like a brilliant revelation and a great way to prove that this disease is not progressive, that I am getting stronger. There might have been a little stubborn pride and will tangled up in my brilliance, a touch of denial, and some strong desire to take back control. So step one was standing without assistance, which is dangerous in and of itself because with my trunk muscles weakened I have a difficult time maintaining balance. In physical therapy, the therapist was literally able to knock me over with two fingers pushing my chest, back, or side. I am a living Weeble Wobble only I do fall down. That right there should have illuminated the predictable outcome of my brilliant idea, but I was so caught up in my revelation that common sense became uncommon. I managed to stand with my feet spread out in a wide stance (nothing dainty or feminine here, I had work to do). Then step two - moving forward. Hmm. This is the part that is really tricky, because with my crutches I use my upper body to puch upward and then just kind of drag, thrust my lower body along for the ride. I twisted at the waist but nothing happened other than a near fall. Okay, so my legs feel like they somehow weight about 500lbs yet are as sturdy as tiny twigs and I seem to have no motor plan for moving them forward without holding on to something. That should have been a red flag, but I was still being stubborn. A few more twists and I looked like a robot set to self destruct dancing. I finally somehow managed to clear the ground by about 0.001 millimeters with the bottom of my right foot while twisting and my foot ended up maybe half a step forward as my arms spun wildly in the air. With all of the wild arm spinning and hip twisting and flailing, my left fot cleared the ground by the same 0.001 milimeters and ended up maybe a half step forward. Yea, woo hoo, two steps. Except I was not done flailing and fighting for balance, and the fight was not in my favor. As I plunged to my knees and broke a further forward fall with my arms my pride also took a spill. The hardwood floor was not the most ideal of landing surfaces, and both my knees and pride are going to be banged up. After sitting on the floor for a minute having a good old fashioned pity party, I creeped my way over to my wheelchair (just those two half "steps" and the forward fall behind me) and hauled my dejected self back into it. Sometimes my body feels better in terms of the muscle spasms, and the dysphagia, and the constant nausea, and the horrid weakness, and the fatigue, and everything else and I think maybe, just maybe I am "getting better", maybe I will walk independently again or even with assistance as a functional skills, maybe this will all go away. And then I test my limits, and hopefully all that I bruise is my ego and my pride when the truth knocks me down. So tonight I have an ice pack on my pride and a few new bruises on my knees. Both will heal with time.

In my honest opinion, I think you are getting better...
I also think your mind is focused on making this walk you are on a journey. A journey that has twists and turns but also has Hope,Joy and reward. I think your stubbornness and your independence is creating a new view of grace and courage under pressure.
you don't have to be perfect, just do YOUR best!

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.