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

Always Read the Fine Print

Tomorrow morning I return to my glorious life as a human lab rat as I undergo testing on my bladder and kidneys to determine what damage, if any, has been done by the fact that my body has decided I do not need to receive the nerve signals from my bladder all the way up to my brain. Apparently I need to learn to read the fine print about these tests before I agree to participate as I am going to end up having two tubes inserted into what I distinctly identify as exits only and electrodes placed on "sensitve areas" to measure nerve responses as well as having my bladder inflated like a water balloon. Oh the sick and twisted minds of the medical world, what will they think of next? I am not a fan of tubes, especially tubes in exit routes, let alone tubes in exit routes inflating me like a human baloon animal so this is going to be a miserable Wednesday morning. This makes the Kidney ultrasound seem like pampering at the spa afterwards! I so enjoyed my vacation from all of this medical stuff, and I am grumpy about having to come back to reality. Starting at 6am tomorrow I have to work hard at drinking clear liquids, but can not eat anything which I am sure will do wonders for my attitude when combined with the fact that I am going to be awake for the third morning in a row at an indecently early time. At least when I was little and had to undergo miserable testing I got bribe gifts of a new book and either a stuffed animal or other small trinket; now that I am an adult I have to just suck it up and deal, not even a sticker or lollipop. I really need to read the fine print because that just seems wrong! ;) Always, always read that fine print!

No opting out? I mean, what happens if you don't get the testing? Just asking. Just reading about it gives me discomfort. So sorry you have to. Will be thinking of you all morning tomorrow, and in prayers.

I survived the testing. Opting out would have meant not having a clear picture on the possible damage being done to my kidneys by the fact that I am not getting the correct messages. However, I am going to inform the doctor that this was a one time only test and next time she needs to have a Plan B because I am not doing that again. I find out the results next Wednesday.

Glad that's over. I feel better now.

Suck it up Bethany- it's just a catheter :) I'm sure you've been through worse. BTW- I know how to put in one of those! LOL

Oh it was so much more than just a catheter. I think I preferred the spinal tap over this test!

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.