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

Slip sliding away

I have been pushing myself for the past two weeks or so, with my trip to Virginia and then having to immediately jump back in to my crazy life of medical appointments and such upon my return. While in Virginia I was smart enough to know when I needed to rest and not be too embarrassed to admit that I needed extra rest. Had I been with anyone else I would have kept my guard up and acted like I felt fine, but the friends I was with have seen me at my absolute worst and been there for me unconditionally so I trust them with the good, bad, and ugly of the realities of my life. Something - be it the delightful dysautonomia, the pleasant progressive spastic paraparesis/paraplegia, the lovely lupus, or a fun new friend - is slowly but steadily draining me of energy. Each day I find that I have just a little less energy than the day before and that I require a slightly longer (and I mean I am resting/sleeping for hours in the afternoon and evening) rest each day. It is like a giant tug of war with a monster in my body and I am sliding ever so slowly through muck and slime, unable to get traction. I hate when that happens! Besides, the monster is a bully with a serious attitude problem and he is interfering with my style here! I need to find some high octane fuel to help me yank that rope and send the monster flying into the giant pit of mire and muck and break this pattern of slip sliding away. It is coming up on holiday season again, and I refuse to be sick again this year!! I missed every single holiday last winter because I was so sick, and I want to make up for it this year. Starting with Halloween and going straight through St. Patrick's Day.  I want to celebrate life, hope, renewal, family, friends, love, memories, and all of the blessings in my life. I want to celebrate with the people who have been there for me, who believe in me, who have made this journey less lonesome and frightening and brought laughter and joy to it. I refuse to spend another season of celebration feeling awful, with no energy, and not myself. This is one battle I will not lose.
1 comments:

As much as possible. You and me here and at my place in cyberspace.

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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