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

A Time to Mourn


This time of year seems to be a very melancholy, introspective one for me. Last year I thought it was because it was full of all of the first "last times" - a year since I taught my kids, a year since I got sick, a year since I was able to hike, a year since I walked independently, a year since I became dependent on a wheelchair, a year since I lost so much. Apparently those anniversaries are just as powerful the second year as the first because I started to get into a funk as October began, and it was the beginning of October when I really started getting sick two years ago. I feel the old emotions creeping back in - the frustration, the anger at my body for betraying me when I had everything I had ever wanted in life (a job teaching special education, awesome friends, and was ironically the healthiest I had ever been before this happened with hiking and teaching all day and doing yoga), the aching longing to have all of the unanswered questions answered and to give this monster a name so I can call it out into the light, the grief for what I lost. Now it sounds like I am sitting around feeling sorry for myself and that is absolutely not the case, but when I least expect it I find these old feelings creeping around again when I thought they were long gone. I guess there is a season to everything and this is my season to mourn. Soon enough it will be my season to dance and celebrate and be joyful. Even in the mourning I am thankful, for in order to feel loss I had to have had some incredible experiences and opportunities and I am forever thankful for them and for the life I have been given. Considering I was never supposed to live beyond my first birthday, every day is borrowed bonus time.
I have another entry that I want to write soon, but this is what came out when I sat down to type so I am going to go with it for tonight and save the other for another day this week. This is more real to what I am experiencing now, a real image of the fact that there are still seasons of mourning two years out and probably ten or twenty years out just as there are seasons of celebration and seasons of joy and season of dancing.

* photo courtesy of iStock Photo
1 comments:

Seems like we might be coming up to a one-year anniversary of our meeting online. If we figure out a date, I will celebrate the day.
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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