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

Full Circle

A year ago I began to exhibit the first significant symptoms of the disorder that would radically change my life. By October 23 I was hospitalized for the first time. On December 12 I walked independently for the last time into George Washington University Medical Center in Washington D.C. for another 11 day hospital stay during which I continued to deteriorate and no diagnosis was made. January 6 I was flown home via arrangements made by my home health care nurse in Virginia for what was anticipated to be a 2-3 month recovery period. It was not until May that a doctor began to recognize the severity of all that had happened, and not until September that I received a working diagnosis of progressive spastic paraparesis and paralysis, which is further complicated by my dysautonomia. It has been a long 12 months, full of things I would have never imagined. This has been a detour that I never anticipated nor would have chosen, yet along the way I have encountered some of the most beautiful and amazing aspects of life that I would have missed otherwise.
So it is fitting that right now I am sitting at the airport, having paid the low fee of $8 for the privilege of accessing the internet, awaiting an evening flight back to Virginia. No, it is not to return to my life there as I had expected when I first ventured to Michigan back in January, but it is to visit the second family I have there and to bring some closure to an open ending. One year later, stronger and wiser and forever changed I am returning to the place where this all began and to the incredible people who supported me like a family. They saw me last when I was at my weakest, my sickest, my most fragile and so I am excited to show them that I have fought back against this monster and am strong again, I am redefining what it means to live with a chronic illness, and I am myself despite the setbacks and frustrations. I am reclaiming what this disease tried to take from me, and this time when I leave it will be on my terms and I will have said goodbye. I also plan on visiting again, as I truly found a second family there. But this trip is about some unfinished business I have - some living, some laughing, and some reclaiming of what is rightfully mine. It is about coming around full circle.
2 comments:

Be safe and have a good time!


May your heart be filled with wonderful memories, and may you enjoy all this visit has to offer...
I know you will show'em your strength... but don't forget to show the love baby... show the love!

:) can't wait to hear how it went!


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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