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

My Little Bit and Flashback Photos

11:28 PM
 
Almost 4 (2008)

 

A Makeover


 

Puppy Love

 

Ice Cream And Swimming - a Perfect Summer Day

 

Troublemaker Almost 5 years old (2009)


 

My brother and I (somewhere between 2 and 3)

 

My Brother and I (Somewhere around 6 or 7)
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Genius Girl Strikes Again

2:01 AM
My family lovingly teases me about the fact that the standardized testing I underwent in school routinely placed me at the two standard deviations above the normal which qualifies as "genius". Usually the teasing begins when I do something completely absent minded, or when I am trying to use my non-existent visual spatial skills. I can readily answer advanced linguistic analogies but I can not ever figure out which direction is north. Don't even ask about parallel parking a car! My brother has decided that my brain is so full of "book smarts" that there is no room for the everyday knowledge, like finding your way out of a paperbag with the end cut off. :P The term "genius girl" is a loving tease most often used in a sentence after I have done something illogical or missed something blatantly obvious or failed to solve a simple logical issue along the lines of "way to go genius girl!" I use the line with myself all the time, especially because I find it hysterical that anyone in their right mind would consider me a genius - me who can't ever find two shoes that melt or manage to cook a simple meal or use a mental map. So my Genius Girl moment of the day was when this morning, half asleep, I accidentally took my night time medicine - complete with sleeping medicine- instead of my morning medicine. No wonder I spent all day sound asleep!! I did not figure out the mistake until 10pm this evening which shows how on top of things I am today. So now I am waiting for a regularly scheduled dose of night time medicine taken at 11pm to work and overcome the fact that my brain just woke up at 10pm so I can get some appropriately timed sleep. My brilliance astounds me!
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Haiti on My Mind

12:20 PM
Where is God when the children die
When a meager existence is shattered to rubble
And an entire nation lets out agony’s cry

Did he close his eyes
Did he turn his head
Did he ignore the suffering voices
Of both the living and the dead?

Was this the land of the truly forsaken
Those born without to die without
And in between to struggle and anguish without
Is that the truth of what their lives are about?

Was God truly absent
As the world crumbled and cracked
Was he preoccupied with other affairs
Or is it perspective we all lacked?

For God felt every moment of pain magnified
He cried along with every single tear that has been cried
His hands were beside those digging out the survivors
And his arms were wide open to greet all those who died

His promise is in every prayer sung in the darkest of nights
Hope comes in one volunteer, one life at a time
Compassion overflows in the giving, the sacrifices of an entire world
Love is living and breathing in humanity at its prime

God was there from the moment their world fell apart
In the rescuers he finds hands, in the journalists he finds voice
From the doctors he finds healing, from the populace he grows hope
He is there, but it is our presence that is the choice.
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Cleaning House

3:29 PM
It has been a very long time since I have written anything here. Extremely long by my standards. I have been busy cleaning house in many ways. Well, first I was busy sending out prayers of Thanksgiving for the invention of TamiFlu as I dealt with a low grade version of the flu my mother got for Christmas. She got really sick, I got preventative Tamiflu and was able to get through with minor symptoms. Considering I am a living, breathing risk factor I call that a victory. I ended up staying with her for about 3 weeks instead of the 10 days I expected around Christmas because I wanted to make sure she was over the flu before I left, and I selfishly did not want to bring the germs home with me. :)
When I got back to my apartment I realized that I had left it in a mid-Christmas state of disorder. I dislike disorder a great deal. Now, my apartment is tiny - no more than about 500 square feet on a good day- so something as simple as a few items of clothes on the bedroom floor make a big difference. This was disorder and chaos. I totally rearranged just about every storage system in my house - my bookcases, my "office space", my kitchen cupboards, my dresser, and my arts and crafts storage. I am ignoring my closet because as the only closet/built in storage area I have decided it is a useless cause and as long as I can close the doors it is all good. I have no coat closet, no linen closet, no storage area so my closet serves more functions than is probably legal. Then I ended up washing almost every dish that I own. I hate dish washing because 1) I am the dishwasher and 2) the sink is not handicap accessible so dishwashing involves this awkward sideways contortion. I have tried using my braces and standing to wash dishes, but since my legs turn an awful shade of purple gray with white blotches after I stand for more than a few minutes, and I eventually develop syncope if I do not sit down, this has failed to be successful. Apparently my dysautonomic circulatory system has issues with sending blood to my legs and retrieving it when I am in an upright position. It is quite charming - I call it cadaver legs. ;) Anyway, I also vacuumed and mopped the entire apartment - I love hardwood floors. Vacuuming and mopping in a wheelchair should be Olympic sports with points for not tying yourself up in the vacuum cord and not creating tire tracks on the freshly mopped floor.
Mentally I have also been cleaning house. For some reason I was rather delusional and thought that the first year of dealing with all of this medical stuff and all of the changes in my life would be the most difficult. I was wrong. The second year is actually proving to be harder, I think because the true reality of it is sinking in and I have to let go of the illusion that there is ever going to be a simple answer or simple treatment/cure. Also it has been difficult because this illness is proving to be a relentless monster and it continues to progress. It is now impacting the strength in my arms, and I am noticing more changes in my lung function (I do not have the results from the PFTs done in December yet). I have been referred to the Muscular Dystrophy Association Clinic, for which I need to make an appointment, and I also need to follow up with my primary neurologist for treatment of the symptoms - primarily the dystonia, and to assess the upper body weakness. So I have been dealing with the frustrations and the fears, the doubts and the sadness. I have been cleaning away the emotions and the false beliefs that will not do me any good and making way for a new start, for the hopes and dreams and gratitude and joy that usually define my life.
I hope this makes sense. I have every intention of writing more soon, and writing more often now that the thorough housekeeping has been addressed.
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Job 8:21

"He will fill your mouth with laughter and your lips with shouts of joy."



Blog Info

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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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