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

Losses and Gains (Top Ten Lists)

I decided that, ancient computer usage or not, I wanted to post this. It is a double top ten list that really helps me, at least, put into perspective that even though it feels like I have lost so much to this illness I have also gained so much as well. In the end, my life has never been an easy path but I would not go back and erase a single step because every obstacle and every victory has defined who I am. Not that I did not/do not have times when I think it absolutely sucks because Pollyanna would never last a day in real life, but in the end if anything were subtracted or added I would not be me. And this is me - Take Me as I Am :)

Top Ten Things Lost:
10. Dignity
9. Friendships
8. Security
7. Financial Stability (I owe more than I will make in a year)
6. Trust
5. Joys - Hiking, Exploring Historic areas and museums, Photography
4. Music- Last concert I was able to attend was when I was 18; extreme noise, extreme temperatures, flashing lights, crowds all trigger an autonomic crisis; even attending a movie at a movie theater has about 50/50 odds of triggering a crisis
3. My Beloved occupation as a special education teacher
2. The entire life I had created for myself
1. My independence

Top Ten Things Gained
10. Self Respect
9. Knowledge on how best to advocate for myself and to refuse to be bullied by a white coat
8. Vast self understanding and appreciation
7. The knowledge of what true friendship really is, and what a rare blessing it is to experience it
6. Discovering just how incredibly loved I truly am
5. Losing all fear - I am confident in who I am, willing to put it out there, and if I fail then I get back up and try again because I have that opportunity
4. New Joys- Before this I would never even attempt anything in the visual arts, now I love exploring and do not criticize because I am doing it for the experience (although my skill level somehow greatly increased after getting sick); audiobooks for days when I have little energy; an even greater appreciation of music
3. A renewed appreciation for living in the moment and gratitude for the miracle of being alive
2. Insight into the experiences of my kids and what is asked of them on a daily basis, and just how amazing they truly are
1. Renewed Faith

Now I may hold a spontaneous pity party tomorrow, but I can guarantee it will not last long (those things are poorly attended and get pretty lonely pretty quickly, plus the atmosphere at those is so dreary). In the end, my life is not in my hands - I did not write my genetic code, I did not form the parts of my brain that can not coordinate properly, no more than a healthy person programmed their own genetics or shaped healthy organs. I am just living with the gifts I am given, accepting the challenges (I love a good challenge, a good dare), and discovering amazing beauty along the detours of life.

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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