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

In Virginia I rented a room from my best friend's parents, which worked out wonderfully because I had the benefits of having my adopted family and the safety of not living alone in an area where living alone was not only expensive but also a bit intimidating. I love my best friend and her family as my own family, truly as a second family and am so honored that they saw something special enough in me to include me in their family as one of their own. My best friend is more like a sister to me (we even look a lot a like), only we have never had a fight and we compliment each other wondrfully with strengths and weaknesses and the way we think.
However, every family has its quirks. My adopted parents have a wee problem with not being able to throw anything away because it might still be useful, or someone might need it, or it is still good. I do not have this problem and in fact donated most of my apartment's possessions whenI downsized and moved into the room at their house after an incident I would rather forget. I am weird, but possessions are not that reinforcing to me or rewarding and I can easily fit all of the things that I would greatly miss into my car. Heck, for 9 months I have lived on what I was able to fit into two suitcases and one box! The only thing I missed out of everything I left behind (besides my friends and my kids in my class) were my books.
In a lot of ways unpacking these boxes is like Christmas because I had totally forgotten what was still in Virginia. For example, my wardrobe has literally doubled overnight as I unpacked a suitcase or two because I left behind a bunch of clothes that all "just happened" to be a size 12 which is what I am now that I have regained all of the weight that I lost from the dysphagia. (P.S. I am proud of being a size 12 and do not buy into society's view that I should diet until I am a size 6 - I have been there via a torturous illness and would rather be a size 12 or more and healthy than skinnier and so sick). I discovered framed photographs I had forgotten about that will make my apartment look more like home. Yet I have also discovered some very odd things, things that seem to make no sense to take the effort to pack and transport hundreds of miles north. I think this stems from that wee problem with not being able to throw things away. I am no where near through even a fraction of the boxes, but so far I have found:
* a box of used needles from my Lovenox injections
* a scrap of ribbon
* an open , 1/2 used container of agave nectar that predictably leaked all over the other contents of the box and made a sticky mess
* an empty perfume bottle from Bath and Body Works (nothing fancy or refillable)
* scraps of paper with written directions to places around Washington DC because you know, those are going to help me up here
* a DC Metro card
* a set of old photographs and papers that actually belong to THEM that I need to mail back - they had stored them in my closet, so apparently they became mine?
* half used bottles of shampoo, conditioner, and a half used tube of toothpaste

I am certain there will be more items to add to the Odds and Ends as I continue unpacking. To me this is funny. It also makes you consider how and what you would pack if you had to pack up the belongings of a life of someone else for them. I am pretty sure I would skip the open container of agave nectar, the empty perfume bottle, and the half used toiletries but that is just me. I am just so thankful they packed up my life down there for me!!

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.