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

Randomenity

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Randomenity: noun, originating from the word random, the relocated prefix -en meaning "to be filled with" and the suffix -ity meaning "to be in a state of", not recognized as standard English but a word created by me to fill a void in the English language; generally applies to a collection of thoughts or concepts that are not well connected by theme, sequence, or structure; a set of short observations or notes in a blog entry that are seemingly unrelated and do not have a connecting theme or topic

I, who have previously existed by the art of microwaving, heating packaged foods, and dialing a telephone, successfully made two complete dishes from scratch last night. One was a beet and apple salad with a homemade dressing, and the other was an apple sweet sauerkraut. Today I am making sesame chicken, since yesterday I forgot to allow for the marinade soaking time. Hey, the fire extinguisher was not needed and the food turned out to be not only recognizable but edible and enjoyable!! Only bad part is that I, who used to add garlic to a garlic pasta sauce, can no longer tolerate garlic very well with my funky touchy stomach. The tiny amount of minced garlic in the salad dressing tormented me all night long. :(

Tomorrow afternoon I am meeting with the representative from the wheelchair company to go over all of the measurements and necessary specifications for my new wheelchair! I am excited because I know very well how long this process can take and I am desperate to have a wheelchair that does not increase my pain. We will be able to figure out seating that meets my needs not only in terms of my spinal issues but in terms of supporting my hips to keep them from rotating so much, and a better leg rest system. In one way it is difficult though, because until now the wheelchair has been rented, not permanently mine. So in my mind I could hold on to some illusion that I would not need it for long enough to have to purchase one. While I have realized over time that this is not improving, at least not in any direction that will allow me to walk for mobility anytime soon, this just makes that very real.

Another harsh reality check is the fact that truly wheelchair accessible housing is not easy to locate. Most places I have found are designated for senior citizens and individuals with disabilities, with preference going to senior citizens. Is it so much to ask to be able to rent an apartment? One where I can reach things and fit my chair in doorways?

My brain just went kaput. I think it is protesting the fact that I fell asleep, then woke up around 2 am and was up until close to 4 am, then woke back up at 9 am. I was going to write more, but now I have no idea what that more was. Go figure!
1 comments:

ah, today saw Everybody's Hero (the movie) and cried in the theater-- dealt with my son choosing not to follow the rules while at the park.. I wish I could look at the task of cooking dinner as a lovely fray into a new event-- and yet I want to just sit and then hear the voices in my head chant, make a cake,make some cookies, feed me junk come on feed me junk! and that is my version of Randomenity!


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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