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

Warning: Contents Under Pressure, Sarcasm May Escape

Yesterday was Day Two of my girls only shopping adventures with my awesome friend in Virginia. I promised myself that while I was down here I would not allow myself to feel guilty for spending money on myself and for shopping in stores other than Walmart, Target, and the Salvation Army. The money I am spending is a portion of the one time payment I received from the Virginia Retirement System, basically a return on the money my district paid them towards my future retirement since I am now considered fully disabled. Money also went to paying for AFOs, towards my wheelchair, towards shoes to fit over my AFOs, towards a warm winter coat that works with a wheelchair, and a few medical bills as well as other necessities. Anyway, back on topic. Yesterday we first spent about an hour in Ulta which, until I met my friend, would have been torture but since her girly girl ways are contagious I am now very interested in makeup and nail polish and all that stuff. I needed to replace my makeup because most of that stuff is clearly marked with a 9-12 month shelf life and I have been using mine for about 2 years. Considering my immune system sucks, I think I need to pay attention to those things - especially things near my eyes. I do wash my makeup brushes once a month. After buying a good portion of the store, we ventured to Borders. As I was wandering around the store (I picked up the most awesome skull graffitti messenger bag for my wheelchair that will hold my laptop and is way more my style), a store worker who had already asked me twice if I needed any help stopped me again. Then she opened her mouth and the stupid fell out. "You sure are doing a great job wheeling around the store today!" She was full of some sort of combination of fake enthusiasm and pity and excitement that she thought she knew the perfect thing to say. Biting my tongue hard enough to attract vampires within a 5 mile radius, I waited until she has gotten out of hearing range before giving in to my need to respond. "And wow, you sure are doing a wonderful job walking today! Those steps are so even and fluent! Your gait so reciprocal!" Ugh!! I may be a little testy on this issue, but I hear the same comment over an over and it is a bit degrading - like it is amazing that I can continue to live my life even though I am reliant upon a wheelchair for mobility. I could understand if I was doing wheelies or 360s or other tricks, but my bag of tricks is shallow and empty. Most of the time I am pretty good about keeping the sarcasm inwards, but every so often it escapes. I need a sign for my wheelchair that says something like "Warning, Risk of Sarcasm" and "Legs dysfunctional but the brain still works". :)
3 comments:

I wonder what would of happened if you said,"ask me again and I'll share my tazer skills with you!"


Stacey's question is good feeling, but you did better attracting the vampires. (skull is more your style? ugh. maternal response again.) I could support a sign with that last sentence. Still, I think we forget that many with a nice reciprocal gait have some cortical limitations also.

See my comment on this post
http://ralphcrew.blogspot.com/2009/10/psa-what-not-to-say-day-14.html


LOL I have eclectic, hard to pin down preferences in most things in life but people who know me well can look at something and say whether or not it "is me" with pretty good accuracy. For example, in clothes I like a combination of classic preppy and slightly edgy, and always with funky and fun socks. I like challenging people's conception of me and never being able to be defined.
I do need to have a good prepared response for people who accidentally let their ignorance show, but I am always so tempted in the moment by the sarcastic comments that rise to the surface. I blame the Irish German Redhead temper for that one. :)


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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