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

The Stupid Just Fell Right On Out

I was out shopping the other day, and after spending a few hours in my AFOs they were causing me so much pain that I had to remove them immediately. So I took them off and placed them in the canvas bag on the back of my wheelchair along with my purchases. The following conversation then occurred.

Creepy Guy: What happened to your legs?
Me: I caught dystonia. I wouldn't come too close, it is very contagious.

Not one of my finer moments for educating others, but it sure felt good!

Today I was waiting near the door of my mother's apartment building for a bus to come. A visiting nurse who was exiting the building opened the door to go out, turned and appraised me and then asked the following question.
"Do you need to be let out?"
Um, yeah lady. I am sitting here waiting for someone to rescue me and take me for my afternoon walk. That automatic handicap accessible door button is just so confusing!!
My real answer: *eyes roll* Um, no. I am waiting for a bus, and I can manage the doors just fine but thanks for checking.

I'm gonna be a movie star!

The return of the dysphagia, the severe nausea, the pain in my stomach, the bloating after eating a single jar of baby food, the gagging, and the vomiting in my sleep have earned me the honor of having another EGD done. So on the 19th I will be sedated (Ha! The anesthesiologist has no idea how hard I am to sedate!) and have a camera placed down into my stomach to see if there is anything they can see. Biopsies will probably also be taken, just for the fun of snipping away at a bodily organ if for no other purpose. All I have to say is that if they try to rouse me from the sedation this time with a sternal rub someone is going to have a hand run over with a wheelchair repeatedly. I had knuckle imprints on my chest for over a week!

Sleep ate my brain
I had more to write, but it is now midnight and my brain is turning into a mushy puddle of sleepiness. Lets see, I did make a trip to Walmart today to stock up on the food supplies and was pleased with their variety of infant/toddler foods. Not really cheaper than Target but way more selection. I am losing weight, which is not a totally bad thing but this is absolutely not how I wanted to do it again!!
I will write a real entry soon!!

Creepy Guy got what he deserved. (Chuckled with that one despite the fact that I usually take the side of the socially-challenged.)

You are quite the actress when you choose.

I do think tissue samples are taken justbecausetheycan.

Wish I could suggest a message to be painted on your sternum....Rub here if you wish to catch dystonia. ?

Hugs, Barbara

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.