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

My village

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If it takes a village to raise a child, then it certainly takes a village (or a city) to keep me going. So I am going to run through the main players in my medical community, the role they play, and maybe even their batting averages! :)

Dr. CH: Primary neurologist, amazing doctor who has taken the time to call me after office hours to check on me and reassure me that they are working hard to try to figure this puzzle out, correctly diagnosed the dystonia

Dr. SN: Neurologist, works in the same practice as Dr. CH, specializes in neuromuscular disorders and genetic causes of neurological disorders, performed my EMG that showed nerve irregularities and is assisting in trying to identify the potential underlying genetic condition

Dr.A: Neurologist, another coworker of Dr. CH, specializes in movement disorders like dystonia, will be evaluating me tomorrow and offering his expertise and opinion to the process of diagnosis

Dr. C: Hematologist, perhaps one of the greatest doctors alive, I trust him implicitly with my life, both brilliant and compassionate, treats the blood clotting disorder (Lupus anticoagulant)

Dr. S: Sleep Medicine Doctor, also a very brilliant doctor, aware of the latest research, treats the narcolepsy/idiopathic CNS Hypersomnolence (my brain's inability to independently regulate the sleep wake cycle in anything like a normal fashion)

Pharmacists: They know me from my voice on the telephone or by a quick glance and go out of their way to be helpful, I think I probably constitute a good percentage of their monthly business :) I have finally found a pharmacy that is careful, helpful, prompt, and dedicated - key factors when you basically stock a miniature pharmacy at home

Currently missing from the line up but soon to be added are an internal medicine doctor, a cardiologist, a rheumatologist, perhaps an endocrinologist and psychiatrist (I fully admit to having dealt with depression as my life suddenly came to a halt, and I am not ashamed of this. In fact, the one question I have been asked by those in the mental health field most often since then was not why did I suffer depression but how did I manage to go 27 years without needing help prior to then :) the stigma is so dangerous because it keeps people from asking for help, sometimes until it is too late), and physical and occupational therapists.

By now I think some of my doctors have nice new cars courtesy of my insurance company and myself, and after the $40,000+ stay at GWUH in December, I think I paid someone's year of tuition in med school. :)

Also critical to my village are my friends and family who see beyond the superficial crap, beyond the wheelchair and the physical body and still see me for the person that I am. The people who love me, who make me laugh, who remind me on my bad days that it is normal to be angry/scared/frustrated but that I always "suck it up and deal" in the end because I love living too much, who believe in me. My parents, my family, my friends, my prince charming. They are better than any doctor or medicine, and they are my strength.
Posted by Bethany at 5:41 PM
1 comments:
Stacey,momof 2
July 7, 2009 at 1:43 PM

It seems to me that you are apart of a team that is motivated to get you answers and choices, to work through the up's and down's and to help living your life with more flexiblity and grace.
Oh, I know that you are graceful and resiliant--- but does the world at large... know that you are a force of nature, only just waiting to be released?
Watch out world, she's on a mission!


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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

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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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