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

Thunder, Lightning, and Rainbows

There are days when you feel like a little gray cloud is hovering over your head tossing raindrops at you, and then there are days when you feel like there is a giant storm cloud hanging over your head tossing lightning bolts at you. A week ago Thursday was one of those thunder and lightning days. First of all, I had to wake up at what is an unholy early hour of the morning in order to be at the doctors office by 9:00am for a spinal tap. Did I mention that this was a spinal tap being conducted with absolutely no anesthesia? Due to some beloved combination of genetics from being a true redhead (research supports the fact that redheads require more anesthesia) and my funky body, I do not respond to novacaine or lidocaine. I also do not respond to conscious sedation besides becoming slightly testy at the fact that I am told I have received enough medication to sedate an NFL team and yet am fully conscious and not sedate. So I was looking forward to that procedure about as much as one looks forward to walking barefoot in hot lava. I had been spending a few days at my Dad's house, and so I had not only my wheelchair but also my new forearm crutches and a duffel bag with clothes and medication to drag along. At O'still dark my stepmother loaded all of my accessories and luggage into the back of her pickup truck and I straggled into the passenger seat. However, her morning was going as well as mine and she forgot one tiny little detail. She forgot to close the tailgate. At the first turn in the road my duffel bag made its leap for freedom, with us completely unaware. Miles down the road, at the next turn, my wheelchair rolled out and into the middle of the road. Still oblivious. Two miles later it occurs to my stepmom that she does not remember closing the tailgate. Let the lightning bolts strike. She panics and blames herself, and I somehow remain freakishly calm. I guess compared to having my belly button pierced from the inside out, this all seemed relatively minor. We backtracked and discovered my vagabond wheelchair as someone was removing it from its desperate attempt to roll on down the road. I must commend the manufacturer because that chair took a bounce and was none the worse for it. We even found the brake extenders. For a cheap rental chair that thing sure has taken a beating! As we backtracked we could not locate my duffel bag anywhere. My poor stepmom was hysterical and I once again was very oddly all zen about it and not concerned because it was just stuff and stuff could be replaced. At no point did I become upset or concerned, which I believe is a total testimony to God because I have a strong German Irish temper and when stressed it tends to have a very short fuse. We could not locate my bag anywhere, so we set off for the doctor's office with my bag MIA.
The spinal tap was just as delightful as I had anticipated, but the doctor was skillful and truly did his best to try and make it less painful. However, I must say that I heard thunder when he told me I had to roll over onto my side WITH THE NEEDLE IN MY SPINE. When I mentioned that I was not so sure about this idea, he promised not to touch the needle - while this assured me I would not experience the shooting pain that came every time he touched the needle, it did not assure me that the needle would not move as it hung out in my spine as I turned over! The brand new resident whose other jobs were limited to cleaning my back with betadine, helping move my legs, and standing in the corner asked if there was anything he could do to help me. "Yes, you could remove this needle that seems to be stuck in my back" I replied. He was not sure how to respond, so he answered "I am not sure that would help you". "From this perspective it sure seems like a good idea!" He needs to work on a sense of dark humor. Once I was on my side, the radiologist doing the spinal tap announced that, joy of all joys, he needed to put the needle in further. I'm sorry, are we doing a spinal tap or piercing my belly button? After shouting "ouch", he promised the needle was in and that he would not touch it again until he removed it. Unfortunately, they apparently needed enough fluid to fill a child's swimming pool as it took 15 minutes to collect all of the vials. God bless the nurse, she told me they had ordered a large number of vials because of the many tests they wanted done but that she was going to collect a little extra and request that all unused fluid be stored and saved so that if the doctors decide they want to run more tests they will have spinal fluid without torturing me, um having me undergo another spinal tap. Oh, and to get the fluid to drain out I was elevated on this table that looked like a modern day electronic version of the ancient tilting rack. Their assurances that I would not fall off because there was a block at my feet would have been more reassuring if I were able to feel said block at my feet!! Ugh!!
So after spending 4 hours hanging out in the recovery room flat on my back, with a bandaid on my back and a bandaid on my butt from the shot of zofran I needed to tame the tantrum my dysautonomia threw at the invasion of the spinal needle, I was allowed to lie in the back of the truck to go home and lie flat for the remainder of the day. My bag was still missing, even after my dad had walked along the road near where we found my wheelchair and could find no signs of it. I was fine with it, and just thankful that my iPod and phone were in my backpack along with most of my critical medications. Again, so God and so not me. When I got home and was changing into pajamas to serve out my flat on my back sentence, my cell phone rang. It was Target pharmacy calling to tell me that someone had found my duffel bag and because I had a bottle of medicine with my name and their pharmacy number on it they used that as a way to locate me. They took my bag to the local police department where my father picked it up with all contents intact. Every pill, every syringe of lovenox, every item of clothing, every everything was there. It turns out a nurse on her way to work saw my bag right after it fell and stopped to pick it up before anyone else could steal it. She had to take her child to daycare and then go to work, but when she went through the bag looking for identification she saw my medication and knew I would need it as soon as possible. She never left her name, and I have no idea who she is other than the rainbow at the end of a day full of thunder and lightning. And reassurance that there are still amazingly good people in this world who do kind things without seeking reward or accolades, but just because it is the right thing or a good thing to do.

Darlin... we you get settled... I would love to have your new mailing address... I think it's time for another box of LOVE!

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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