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

Time

Time has always been a difficult concept for me to experience in the same ways as others; perhaps because of the lack of a natural sleep wake cycle that would frame things into intrinsic patterns of days and weeks. It is often the case that once I sleep, be it a two hour nap or overnight, an event is transferred to the distant part of my memory so whether it happened that morning or when I was five I experience it pretty much the same way. I realize that I am odd and that this probably does not make sense even in writing, because I know from experience with others and studying in college that this is not the way the human brain is supposed to be wired to work. What can I say, I was never manufactured to factory specifications. ;) I must say there are advantages to my odd sense of time in that I am highly adaptable to most circumstances and can adjust to just about any living situation or routine change.
So with this odd and unique method of experiencing time, and the ongoing process of adapting to and accepting the long term implications and progression of this neurological disorder, my coping has been a bit different from the standard expectations. In many ways this has already felt like "normal" (i.e. what I remember and am used to) for a long time and memories of my other life before this feel as far away as memories of the bedtime stories I used to listen to as a little girl. Yet in other ways it is still raw because each morning there is that briefest of moments where I forget, where everything seems as it always was, and then that moment ends in a sudden realization of all that has happened. It is one of the sweetest moments followed by one of the most bitter. I still long to have the freedoms I used to have, the freedoms of not having to rely on others to access the world in so many ways, the freedoms of movement unhindered in my body. Yet these freedoms seem almost like a dream that I had, almost like a faded old photograph of something that was so long ago instead of less than 18 months.
Even my dreams at night are changing. In my dreams I can still walk, still run, still dance but now at some point in my dream I realize or "remember" that these are things that I can not do and am confused. I may walk in my dreams but I am somehow unable to do the one thing that is necessary to save someone I love. I am becoming restricted even in my dreams. Slowly it creeps in where it does not belong.
I am not dealing with as much anger over this happening as I am dealing with a longing to just finally have answers, to have a diagnosis, to have a name for it and perhaps ideas of how to treat it. I still sometimes have bad days when I mourn for what I lost, even though it may feel like a long time ago it cuts into my heart very deeply now, but I have many more days when I am alive in the moment and thankful for all that I have been given. It is a challenge when new symptoms, or progressions of symptoms of the related dysautonomia continue to pop up, but I have never backed down from a challenge before. I would just really like to know what I am up against, and how best to fight it now and through times to come. Because I have miles to go before I sleep. :)
1 comments:

You ARE too young to think this damn old. Wish I could help you find out what you are up against. Too many miles between us. :(
Barbara


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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