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

Swing Batter Batter..And Strike!

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For the past few days I have been having increasing pain in my muscles, especially in my legs. The Keppra has done nothing to help, and has been a hindrance by increasing my already annoying nausea to an almost constant level. After ending up in tears and a tightly curled ball of agony one too many times, I called my neurologist this morning. And for the past hour I have been playing telephone tag with her through her nurse/receptionist/gatekeeper. This is the mighty Dr.CH, but apparently even the mighty Dr. CH may strike out. Strike one: telling me to take half of a baclofen at night. Um, Hell no! Baclofen is what bought me a three hour tour of the ER with a record setting low blood pressure that made consciousness an extreme effort. I don't particularly care if Baclofen is the cure, I am not going down that road again. Strike two: suggesting that drinking large amounts of Tonic Water would be beneficial. Okay, first of all due to the dysautonomia I rarely if ever feel thirst. Drinking any liquids is a struggle, and I am constantly on the edge of dehydration. Nasty tonic water has the same chances of being consumed as muddy river water. Second, tonic water has quinine. Quinine is documented to impact the autonomic nervous system as well as to impact blood clotting levels (lupus anticoagulant is actually listed as a side effect!). This seems like a duh! to me but putting the girl with lupus anticoagulant on high amounts of a drink with a medicine that can cause lupus anticoagulant (not to mention jack with her already temperamental nervous system) may just be asking for trouble. Strike Three came in writing for a prescription with Ibuprofen in it. Ibuprofen is an NSAID, which as a central characteristic is known to thin blood. All NSAIDS are forbidden to me because they can cause my blood to thin more than is appropriate since I am on blood thinners, especially since I still have the acquired factor deficiencies. Not to mention, I have NSAIDS listed on my allergies and sensitivities as causing severe stomach issues. And people wonder why I am so adamant about learning everything possible about my health conditions and medications and treatment?!?! Dr.CH is an incredible doctor, but without my chart in front of her (she is at the hospital on rounds, my chart is at their office) she is at a disadvantage. Her receptionist/nurse must think I am the most paranoid and obnoxious patient ever, but I would prefer to be obnoxious in her eyes than take another tour of the ER or continue to have these horrendous painful spasms. I fully admit that I am a complex and complicated patient, that I am frequently the most challenging patient a doctor will ever encounter and that providing care for me requires a high level of diligence and attention. However, I also know that anything less can result in disaster, and this is my life. So whether or not a nurse thinks I am a royal pain in the arse or not, I would rather cause her to do more work than just accept whatever I am told only to later discover that my ignorant faith came with a heavy price. But it does become extremely tiring constantly having to be alert, on guard, and educated - and unafraid to piss someone off in a very nice way by questioning the appropriateness of what is being done. This morning, Mighty Casey...Mighty CH has struck out. :( Luckily, I believe in second chances, and there are 9 innings in a baseball game!!
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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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