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

Human Pin Cushion

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On Wednesday I had my first appointment for Botox injections. I knew just enough going in to be dangerous to myself, but not enough to be well informed and relaxed. Almost all of my information came from my experiences as a special education teacher, so it was framed through the pediatric framework. Knowing that this is a process done under anesthesia for children, I was a bit anxious about how much it would hurt. The reason it is done under anesthesia for children is their difficulty remaining still and the trauma of multiple injections into the muscles. Using the EMG machine with two electrodes and a special needle, the doctor targeted specific muscles in my lower legs that are responsible for rotating my feet inward and pushing them downward. I received somewhere between six and ten injections per leg with a small dose given per injection. I remained seated in my wheelchair for the process and simply removed my braces and socks. I was pleasantly and delightfully shocked by how much less it hurt than I had anticipated. I was all ready and prepared to swear creatively, since Mythbusters demonstrated that swearing increases pain tolerance by 30%, but I never even needed an old fashioned "Ouch!"!! Not that I am saying it was particularly fun, but it was no where near the pain I expected. One injection did cause significant bleeding and a large bruise formed with a golf ball sized lump underneath, so it looks like I am trying to shoplift from a golf pro shop via a hidden pouch in my leg. My legs are sore and achy, but nothing more than I would feel after expending myself too much and overworking the muscles. I go back in four weeks to have the doctor assess the impact of the Botox injections, and then in 13 weeks for the next round of injections. Based on the muscles response during the injections, the doctor thinks next time he will need to inject the bottom of my feet to attain the best possible results and get any results from my toes. According to our conversation, those particular injections "hurt like hell" so I am sure it will be an adventure. I did point out to the doctor that none of this hurts him, and he was quick to point out that if he feels any pain during the procedure something has gone wrong. I have two words buddy - voodoo doll LOL :) So now I wait - for the bruise to go away, for the aches to go away, for the results to begin to appear (any time within the next 2 weeks I should see the effects). Just the fact that this offers a chance to get relief from the tight muscles and the twisted feet makes it worth the experience, let alone if it actually works!!
1 comments:

Crossing my fingers and toes for a good result!


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.
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