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

The Layered Look

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I grew up where you lined your boots up outside the classroom in elementary school and somehow never came home with the same pair. Elementary schools had sleds as playground equipment. I could playoutside for hours in the snow. The worst part of winter and playing outside was always the bundling process, especially when you had a grandparent or parent who thought that anything not covered by at least two layers would fall off. And it would never fail, the moment the last snap was done and the scarf tied you suddenly and inexplicably had to go to the bathroom even if you just went 5 minutes prior.
So I know cold and I know bundling. These skills have come in handy in what I have come to think of as Survivor Woman, Bedroom of Death. We live in an older apartment building that is heated by a boiler system, and my bedroom is as far away from the boiler as you can possibly get. The vents in the living room are closed and it is still warm while my bedroom could serve as cold storage. I half expect one morning to wake up to a few Penguins from the local zoo just hanging out. So each night the challenge is to dress in enough layers to make it through the night without waking up violently shivering and aching from the cold. Layer one usually consists of something like thermal pants, a long sleeve t shirt, and socks. Layer two is then fleece pajama bottoms and a sweatshirt. Gloves are kept next to the bedside and a hat has been known to make its way into the ensemble. By the time I am done I look like the kid brother from A Christmas Story "I Can't Put My Arms Down". I am also not ashamed of busting out the footie pajamas and even wearing a layer under those.
Hopefully my bundling days will soon come to an end as I finally broke down and ordered an electric blanket. I used to have an electric mattress pad which was wonderful but it was broken in one of my moves, and they are more expensive than the blankets. I just hate spending money on something I will only use for a few months out of the year. Then again, hypothermia sucks.
1 comments:

The way you write is hilarious. I am laughing despite the fact I know you are freezing to death. But I hope the blanket works for you!!


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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