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

Things that go Pthhhht

I do not get out of the house as often as I would like for a variety of reasons - the weather (too hot/too cold, storming), the massive amount of energy required to get presentable and then wheel around some where (my arms are growing weaker damn it!), not feeling well, and the lack of a real purpose to go somewhere. Last week I was initiated into the true wheelchair user's club when I encountered yet another reason for not leaving the house. I was all prepared to go, had my shopping list programmed into my cell phone (what? I am more likely to lose a piece of paper than my cell phone! especially because I paid for the cell phone!), wrestled shoes on over my contorted feet (no botox this round so everything is tight as tight can be), and even managed to do something with my massive mess of hair (I am growing it out to donate and that is the only reason I have not taken scissors to it yet - it is much to thick and curly and snarly to grow long ever again). Then I sat down in my wheelchair and I was going nowhere fast. Okay, so I tend to go nowhere fast on a regular basis, but this time I had a reason. The left wheel was as flat as could be. It had been a long time since the air was checked and added to the tires and a few weeks since I had last gotten out of the house (I know, I am pathetic!). I think the bumping down the flights of stairs at the GI appointment encouraged some air to escape faster than my normal escapes from curbs and bumps. So I was stuck and like the awesome planner I am, I do not have an air pump/compressor. After some phone calls and cursing of Nessarose (the wheelchair), it was decided that the next day my brother would take my mom and the two wheels to the gas station to get air put in them. Thank God my wheels come on and off of the chair! I can only imagine what it looked like to see two people each holding just a fancy wheel walking out of the apartment complex or standing around the air compressor at the gas station. Someone probably thought that they forgot part of the bike when they stole it! The good news is that I am now back up to full pressures in both tires and it is holding steady (I check daily because I am paranoid). And for my birthday I am going to harass my dad for an air compressor. Cause nothing says loving like the gift of hot air!!


Donating your hair?I think,if at all possible, Zoey and I just fell in love with you even more!

Sorry about the wheels... is this what we are in store for,Curse words might just fly.

Wish we could "tool" around with you one day.What a gift that would be to us.Your words of wisdom,each time you visit,a gift as well.

I know, I know, the hot air I provide is not compressible nor transportable to a usable function like rolling you around. Perhaps it is best my hot air (words) just float off into cyberspace.

Glad you are back on rolling air again! Despite the hassle, I can speak for the old days of no pneumatic tires on wheelchairs - now that was a time of isolation for persons who used a wheelchair full time.


You are an inspiration to me because I know how heard it is to be wheelchair bound my name is Nisha and I am 20-year-old from South Africa who has CP and altough it's harf for me to wheel myself around I practise and I refuse to get an automatic wheelchair because God damn it I KNOW i can get along without one.

PS. in case your wondering Barbara gave me a lonk to your blog

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.