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

More Air

I have a long and miserable history with flat tires, including an infamous incident with a gigantic pothole impersonating an innocent mud puddle and breaking the rim with a shocking thunk. I still drove another several miles on that busted rim, and no I have no idea how I managed to do that but I am female and I don't "do" cars, and since it was driving I figured it couldn't be that bad (see my logic???). So perhaps it was not the best idea in the world for me to have a wheelchair with regular tires. I can not technically check the air in the tires on them because with my stunning and amazing fine motor skills, by the time I got the stupid pressure gauge thingy on right I would have let all the air out of the tire and be able to go "yep, its flat!". Instead I use the subtle system of observation - when my brakes start slipping that is usually a good sign that I need more air.
So I figured it would be a quick stop this morning on the way to the grocery store with my Dad for back up (cart driver) to put air in the tires. He of the more dexterous fingers checked the air in the tires, and my method was right. The darn things needed more air. However, the "Free Air" machine apparently had decided that its goal for the day was not to provide Free Air but rather to "free" air from whatever it was trapped inside. So by the time my father was done wrestling with my wheelchair and the machine, I was able to go "yep, its flat!!". In this cliche of a small town, the other gas station (because there are only two) does not have an air machine. We checked. Neither does the little oil change joint. We checked. After 15 minutes of driving around a very small town, my dad decided the easiest solution would be to just go to his house and have him pull his air compressor out of the garage to fill up the now very flat tires. Of course the air compressor is located in the far back corner of the garage because who needs an air compressor in the great frozen north before say, June? So what should have been a quick 5 minute process took about 40 minutes. But the good news is that now that there is actually the proper amount of air in my tires, it is so much easier to drive and maneuver. Apparently low tires make it feel like you are pushing the wheelchair through wet concrete. What do I know, I am a girl who never even figured out how to put the chain back on my bicycle or put air in the bike tires!

Just flat out of ideas to prevent this issue. Alas. Still I recommend semi-pneumatic tires on wcs - just no comparison with the hard tire-d ones.

Do you think I should get a shelfari on my blog?

Here's to your Dad! Barbara

I like the Shelfari because it gives more info and is more visual than just a list of books. I think you could create a really awesome tool on your website with resources as well as with general books you are reading/have read using Shelfari.

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.