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

You Know You Are A Medical Freak of Nature When...

When the ER doctor admits he has no clue what to do with you and so will be going with the standby treatment of fluids, monitoring, and time

When you have multiple doctors in the same specialty (three neurologists, two cardiologists, etc.)

When the pharmacist asks you about the side effects and interactions of your medications

When the pharmacy knows you by voice on the phone and greets you by name when you pick up medicine

When your cell phone contacts have more medical numbers than friends and family

When you have to spell the name of your medical condition and explain it to highly qualified medical professionals

When you carry a notebook with a separate page listing allergies, medical conditions, and current medications because you are tired of writing it out at every office visit and trying to keep it all straight is a feat of mental Olympics

When the phlebotomist needs to sit down when drawing your blood because she starts to feel woozy

When you can take a handful of pills without a problem but choke on a chewable Flintstone's vitamin

When you know how to shower with an IV in your arm, oxygen tubing in your nose, and the inability to stand independently…and look forward to this as a semblance of normalcy

When you realize that crimping the IV line to set of the alarm works a lot faster than pushing the nurse call button, and you use this to your advantage when you have waited over 45 minutes for anti-nausea medication or to be allowed to go to the bathroom

When you can identify by taste more than 6 different intravenous medications (yes, you can taste IV medications - vitamins and Heparin flushes taste particularly nasty)

When you have no problem calling out a doctor and informing them that MD does not equate to Medical Deity

When you can keep track of the pecking order of physicians and have will keep them in line by reminding those with "just out of school egos" that they are still practicing with training wheels

When you do not hesitate to inform a nurse that he needs to get his butt back out in the hallway to wash his hands, then put on gloves before administering anything into your IV - and then discuss protocol with his supervisor

When the phlebotomist spends 20 minutes researching the lab tests that the doctor has ordered and calls their reference lab more than twice to determine what vials and processing are required as they have never run these tests before

When you can not watch medical dramas on TV because you critique their many errors (on Bones, when Booth was in the hospital, his vital signs on the monitor never moved…ECG tracings continually move, numbers fluctuate…very annoying)

When you prefer to self administer any injections, and nurses have commented on your technique

When the first question you ask a new doctor is "what exactly is your experience with individuals with complex, complicated, and rare medical histories?" and they must pass your interview before making "the team"

When the cost of your prescription medications alone each year is more than the average income of most middle class families (and you thank God for providing insurance coverage in any form because without insurance you would not exist)

When you can spell words like pandysautonomia and lupus anticoagulant and antiphospholipid syndrome without hesitation, but you misspell words like perseverance and righteous

When you know how many different objects can be made out of an inflated medical glove, a sharpie, and some paperclips

When you have perfected your aim at shooting the caps off of syringes and using syringes as water guns

When your blood pressure drops to 78/40 and you actually debate whether or not to go to the emergency room

When you can sit and write a list like this in under 5 minutes, and it is actually amusing

such a roller coaster medical ride you seem to be !

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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