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

Insomnia and Internet Access

Unlike the world's cutest now eight year old pictured above, I can only fall asleep sitting up on the rarest of occasions. In fact, tonight I can not sleep period. I feel like a character in a bad Dr. Seuss book on sleep.
"I can not got to sleep tonight
My sleeping thing is just not right.
I could not, would not in the bed
Not with a fancy pillow for my head
I could not, would not on the couch
That left me feeling like a grouch
I could not, would not on the floor
I can't get down there anymore
I could not, would not with my iPod
Not even after I politely asked God
I could not, would not with a guy
Well only cause none showed up for me to try
I could not, would not count the sheep
They went on strike with Little Bo Peep
I could not, would not with the prescription drugs
At maximum dosage I am not even buzzed
I just can not go to sleep tonight
And by now I am quite a fright
Please sleep let me try you out for a while
Insomnia is not my style!"

As if bad rhyming ala Dr. Seuss was not enough, you now get the priceless opportunity to read whatever comes floatng from the muck and the mire to the front of my addled brain and out my fingers. I probably should not have internet access when dealing with insomnia!


* I actually had to speak the phrase "Excuse me ma'am but could you please retrieve your dog from my leg" this week in the elevator. Apparently her dog did not have a banana in his pocket but was in fact very excited to see me and hopped right up on my foot rests and decided my leg made a hot afternoon date. I just thank God it was a miniature something and not a Great Dane!

* When picking up prescriptions at the pharmacy, the pharmacy tech sees me and automatically goes over to the spot for my last name and searches through it. We hit the motherload as he returned with a sack of meds. The sad part was when he asked me if ten sounded right for the number of prescriptions, not only did I have no idea if that was correct (God Bless Automatic Refills) but I also knew I would be back in a week or so for more.

*According to Social Security I am not considered Disabled. This sucks Ostrich Eggs and means we have to go through an appeal. It also makes me wonder how much more screwed up I need to be to qualify! I honestly think the problem is the lack of a cut and dry diagnosis. That and they are all could use some preparation H in a jumbo tub.

* While at the mall last week, I politely informed a man who kept stepping in front of me that I would not hesitate to run him over. He said I needed a horn, to which I replied he needed a rearview mirror to check before lane changes.

* I am such a total geek/nerd. With the iTunes gift cards I received for Christmas I have been downloading documentaries that I never get to see in a theater because I live in The Middle of Nowhere, Michigan. Just like I prefer nonfiction books to fiction books, I prefer documentaries to regular movies.

* I scared and confused the crap out of a small child while shopping at the mall. There was an item hanging from a high rack that I wanted and no one anywhere to be found willing to help me. However, there was a child about three or four years old staring at me intently from the child seat of a shopping cart. So I did my "Amazing Standing Cripple" act and unbuckled my feet, undid my seatbelt and held on to the rack while I stood up long enough to grab what I needed. When I looked over at the poor child she had a look of pure confusion and shock on her tiny features that in all honesty was hilarious to me. I want to hear how her mommy explained that one to her!

I think that sleep deprivation suits you...this is hilarious! The Dr. Suess ode to insomnia is awesome. If you are ever running dry on blog material, sounds like all you have to do is make a trip to the mall. Big dislike for horny dogs.

I didn't know you preferred nonfiction. Hmmmm.

Agreeing with Lynn that the effects of insomnia are none-to-shabby in your writing.

One wonders why a dog was riding the elevator but one does not want to know more, thank you.


Well,not sure where to even begin...

First thank you for finding your way to our zoey girl,how ever that happened to be and in turn,enabling me the opportunity to find you.I have only just begun to delve into this beautiful,complicated journal of your life.Really truly,incredible Bethany,and what jumps out at me immediately is one,your faith and two,your positive attitude and three,your humor.All of the above necessary when life puts in front of us unforeseen twists and turns.

I look forward to following your story and thank you for your beautiful words about sweet little love.

What part of Middle of Nowhere Michigan? Upper or Lower Peninsula? I ask only because I'm also from Michigan and also an acquaintance of 3:00am (He is a sly one... gets ya talking and BOOM! now you're acquainted with his good friend, 4:00am).

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.