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


I adore words, finding in them an almost magical power that extends far beyond the representation of concept or emotion. There is a lyrical, musical, ballet dance to words and the sound and feel of the word is just as critical as the intent of the word. Discombobulated has long been one of my favorite words, ever since I first tasted its weight and tone as a small child. Nothing else quite captures the state of jumbled up, tangled, frazzled, out of my own control, not sure which way is up or down as being discombobulated. My reason for not writing anything in a long time is that I have been living in a perpetual state of discombobulation.

My dysautonomia has become significantly more active as the fall days turn colder, and I do not know if that is just a coincidence or if I am in for a long winter.I have been held hostage by my body all month thus far inside of the house, and I am getting very tired of spending my days on the couch or curled up in my bed. Tomorrow I plan on forcing my body to suck it up and deal with a short outing to Target as I am out of some of my medications and they don't deliver (I got spoiled by the old fashioned pharmacy that delivered in the smaller town I used to live in!). Emotionally I tap dance along the spectrum from anger to depression (more like mourning or grief for what I lost) to days of acceptance. I should have paid better attention during those dance lessons as a child as I keep getting the steps wrong and ending up all tangled and befuddled.

I can not believe that it is already time for me to need to get working on making my Christmas cards, and I don't even have my craft table officially set up in my bedroom. Thankfully this year's planned card is simple in design and should be an easy assembly. I had considered doing homemade Christmas gifts as well but that is so not happening this year. Maybe next year if I start in August I will have a prayer of getting done in time.

I have my next round of Botox injections scheduled for the day before Thanksgiving, and I am hopeful that this appointment is not cancelled (the first one for this round was cancelled as the doctor had to go out of town). It has been an unpleasant process to gradually regain the spasticity that was taken away by the first round of injections and I much prefer the range of motion and comfort that I had following the injections. I also see my neurologist on that day, and we have many details that need to be discussed including what symptom management will look like since it appears the search for a diagnosis has been surrendered and if this new back pain is progression of the dystonia and how I can stay hydrated to prevent the recurring bladder/kidney infections when I have absolutely no sense of thirst (thanks to the dysautonomia).

In a completely random note, it has already snowed here. Excuse me, but I don't remember placing an order for an early winter or cold weather. Thankfully the little snow that stuck melted quickly the next day. Snow sucks when you are in a wheelchair and the cold sucks when you can not regulate your body temperature. I love looking at the snow, but I hate having to go out in it when it is windchill negative freeze your breath. I still want to find the genius who thought that metal push rims would be a great idea for a wheelchair that would be used in a Northern state with frigid winters. It is like that scene in A Christmas Story when the kid gets his tongue stuck to the pole, only with my hands on the push rims. I had to buy a new, very warm winter coat as the coat from last year did not fit and matching hat, scarf, and gloves. Unfortunately, with my KAFOs, there are no winter boots that I have found that fit over them so I have to be very, very careful transferring in the winter. 

I will hopefully be back soon to write something more creative, more insightful, and more entertaining. I am writing this tonight as I try to lull my brain into a relaxed state during an annoying bout of insomnia. Therefore, I promise absolutely nothing in terms of comprehension or logic. :)

I knew you had not fallen under the plie of snow or pain... but I was wondering how you have been... now I know-- thanks... will you send me an email with your new-current mailing address... it's time to send you something :)

I will keep praying for you, even if you do get better. ;) So don't give up on getting better. Barbara

I love the word discombobulated. My mother uses it constantly and I've picked it up from her. This should tell you something about my mother and I that we can so easily use the word in a sentence. I don't think I've ever typed it before thanks for that.

Hope you got recombobulated enough to make that trip to Target and feel better soon.

I love using words like discombobulated in everyday speech, I am a word person like that. I made it to Target, so my mission was accomplished!! Well, until tomorrow when I have to go back. Is it a bad sign that the pharmacy staff at Target knows me by voice on the phone and by sight at the store? ;)

this sounds like a lewis carroll pome, if not the only way to describe one ;)

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.