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

Boa Constrictors and Potty Training

  Oh, I'm being eaten
By a boa constrictor,
A boa constrictor,
A boa constrictor,
I'm being eaten by a boa constrictor,
And I don't like it--one bit.
Well, what do you know?
It's nibblin' my toe.
Oh, gee,
It's up to my knee.
Oh my,
It's up to my thigh.
Oh, fiddle,
It's up to my middle.
Oh, heck,
It's up to my neck.
Oh, dread,
It's upmmmmmmmmmmffffffffff . . .

Shel Silverstein

I remember this poem from Where The Sidewalk Ends, one of my many, many favorite books during childhood and it seems oddly appropriate for my situation. The illness that has decided to declare war on my body is the boa constrictor, and it did indeed start by nibbling at my toes and feet. Right now we are at Oh fiddle Its up to my middle. May it never take another bite!! But I have had this silly little poem stuck in my head for days and the imagery of a big fat boa constrictor nibbling and munching his way north on my body ever so slowly but determined, as if I am a snack. Well Diddle, he will have to be satisfied with reaching my middle!!
This boa constrictor recently advanced beyond my hips and called dibs, he's just at my ribs. In the process he did something to the wiring of my bladder, causing me to no longer have any sensation. Thankfully the muscle itself is still functioning at this time, so it does its job of being an internal water balloon, but the problem is that the signal that the balloon is full never makes it to my brain. I can't tell that it is time to make a dash for the bathroom until my bladder has filled to the point that it is pushing on other organs and causing abdominal pain. This is generally not the best way to reroute around a malfunctioning wire as it can cause pressure on the kidneys. So after seeing my least favorite -ologist, the ever unpopular urologist who is always tube happy, I am now potty training myself all over again. Every three hours I have to take myself to the bathroom whether I feel anything or not and "just try anyway" as I used to chide my niece. Realistically, that is every 3 hours or as close to every 3 hours as I remember. As a kid I got M&Ms and stickers when I went potty on a schedule like this - what do I get as an adult? Urodynamics testing from tube happy doctors and a kidney/bladder ultrasound. I think I had a better deal as a kid! Anyone have any boa constrictor repellent?

My least favorite -ologist, too. If you are a good girl and go on schedule AND have no symptoms, can you forego the tubes?

My least favorite -ologist ever since I underwent two years of testing with them as a child and discovered just how tube happy they are and, at least at that time, no one ever explained to me what was happening. I kicked one urologist in a very urologically appropriate place after he refused to talk to me and instead talked about me to my mother (I was about 7 or 8). I was a very precocious child and tended to demand that my intelligence be respected. ;) As for tubes, it depends on the results of the testing on October 21. If I am a good girl, go on schedule, and there are no signs of significant pressure on my kidneys or kidney damage then I can forgo the tubes at least for now. However, we have to be really careful because Lupus is also well known for causing kidney damage, and I have a history of showing signs of kidney inflammation (spilling protein and microscopic blood) intermittently throughout my life from about age 7. Plus I have lived with a damaged bladder (neurogenic) all of my life, from the dysautonomia, so our goals are not the same as for another "standard" patient, which helps.

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.