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

Much Too Young To Feel This Damn Old

I don't think Garth Brooks had any idea of just what those lyrics "I am much too young to feel this damn old" meant when he sang them. At age 28 I frequently feel like somehow, even though I still can't pass for 21, I have gotten a recycled body that already has a good 100,000+ miles on it. I am thankful for all of the ways that my body systems manage to get things right each and every day, and marvel at how something so small can cause things to go so wrong. I am still dealing with issues from the dysautonomia - apparently it has decided that it needs some attention now. On Monday at my doctor's appointment my blood pressure was inaudible, which means I was in the freakish low category but somehow I managed to sneak out of there without a trip to the emergency room for fluids and monitoring. I did not get a free pass on everything though and have to undergo some unrelated tests. Oh the fun never ends. When the doctor asked when my last mammogram was I told him I was only 28 and that according to the owner's manual, I had another 12 years on these things before they needed to be taken in to the shop. Well, on Tuesday they get taken in to the shop 12 years early. So anyway, all this week I have been having issues of sudden drops of blood pressure when I sit upright or stand which makes life interesting. I have found myself lying flat on my back in some interesting places in order to avoid passing out. I call it inspecting the ceiling.
Basically other than the medical stuffs my life is pretty boring right now, and boring is pretty good. I do need to come up with a better topic and write more on here soon. Oh I tested my wheelchair in snow this past week and it does well - better than the old rental by a great deal! No more damsel in distress stuck in a snowbank!! I also tried to explain to an old lady today that the reason I looked just like someone who was in a wheelchair and used to live here but with darker hair is because I AM that person and failed miserably (my hair is lighter red in the spring and summer when I am in the sun more). We both ended up confused, but she said next time she saw that other girl she was going to tell her she had a twin. I gave up. I guess I have more than one self. It really is Me, Myself, and I afterall!

No matter how you are feeling, your brain is working far better than the lady who thinks you have a twin. Barbara

So does this mean the evil twin has taken over for the good twin? are you two halves of the whole?
I like both of ya... you make me smile,laugh cry and spit out my drink! :)

Why in the heck are they making you get a mammogram? Trying to rule out breast cancer? Oh yeah, maybe its your boobs making your legs weak!! -Lauren

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.