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


I am not feeling well due to a combination of pushing myself way beyond reasonable expectations this week and eating a yogurt that was clearly outdated - those dates are apparently not a suggestion or a hint even if it smells okay and tastes okay. Yes, I know that with an immune system that has some serious glitches I should know better, but sometimes I am mortal and make mistakes - and I pay for them. Oh, I pay for them!! So this is not going to be as long of a post or as full of my wit as I would like. Blame the yogurt.
On Tuesday I started attending a water aerobics class that meets twice a week and is made up of me and a group of people all over the age of 50, most over the age of 60. I am the odd one out. I have noticed - and it was impossible not to notice- that it seems as you get older you lose any inhibition regarding nudity in shower rooms. I still dress beneath my towel. Anyway, I use a flotation belt to keep me from adding near drowning to my list of medical issues because while I used to be a highly skilled swimmer, growing up as a "little fish" who started jumping off of the highest diving boards I could find at the age of 2 and mastering every stroke, I have lost core strength and basically have little muscle coordination from the base of my ribs downward. With the belt I can swim the length of the pool several times, without it I can barely make it half of a length because my bottom half keeps dragging and pulling me down with it. I can barely sustain a backfloat on my own, and I can tread water with my chin out of the water for 30 seconds using just my arms without the belt. There are some exercises that they do that my body laughs at, so during those I do my own - like trying to maintain an upright position in the water while rotating my trunk, doing leg lifts to strengthen my legs and core, and testing my boundaries. There is a life guard on duty, but she has warned me not to drown because she hates getting her hair wet, so I have agreed to allow her to keep her hair dry. :) It is amazing to me how differently my body behaves in the water as opposed to on land. my legs are freer, the movements less jerky (not necessarily more graceful), and it is easier to simulate a normal gait pattern in water. I can maintain an upright position with just the gait belt for about 45 minutes (occasionally tipping over) where as on solid ground after about 3-5 minutes circulation to my legs becomes an issue and they turn purple-gray with white splotches, AKA cadaver legs. It is tiring exercise, but in a way that does not cause the same fatigue and pain that other exercises do and I can do exercises that I struggled with in PT in the water with minimal difficulty. I have decided that mermaids have the right idea- they have no need for legs because in their world they are impractical and a burden. To them, we are all disabled because of our legs. Ability and disability are all based upon a frame of reference, and I am thinking mermaids might just have a good thing going.

A water aerobics class is fabulous, Bethany. Your descriptions of your exercise and how you feel are wonderful to read.

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.