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

On Pins and Needles

Yesterday was round three of the Botox injections, and hopefully not the last. Hopefully whatever replacement I find for my ending health insurance will cover Botox as it has been a tremendous benefit and provided relief. The photograph above is of the very old EMG machine used to check and make sure the Botox needle is in the right location prior to injecting medication. I liked the creepy mad scientist look it gave in the photo. :)
So the injections went as well as can be expected, and I am actually grateful for the fact that I have sensory loss in my legs because looking at him using the muscle to bend the needle back behind my shin bone it occurred to me that this should probably be painful. Yes, I supervise and watch because when anyone is coming at my body with a needle that size I prefer to monitor exactly what they are doing with it. Plus it is a control thing. I am noticing a pattern though. All three times after the injections I have crashed within a relatively short period of time. Yesterday was the shortest as I was not out of the office building and I was starting to feel dreadful. We stopped to get me something to drink so I could load up on meds, and then I focused on breathing during the hour and a half long drive back to my house. The drive sucked. By the time I got home I was beyond pale with a lite tint of green around the edges but I had managed not to vomit in my Dad's truck, for which I think I deserve bonus points. I was knocked out pretty much for the rest of the day. Today I am hung over not just from the crash but the day after Botox hangover - sore weak muscles, flu like feeling, low grade fever. I slept until noon today, woke up long enough for a cup of coffee, and then slept until 4:30pm. I will try writing a more witty, insightful, and informative entry some time this weekend but I am exhausted and foggy from the combo hangover. My poor legs look like I went to a fencing contest in Lilliput and lost. Thank you for all the prayers and support!! I am so blessed!

Puking in your Dad's truck would make for a good post. Screw the bonus points and go for it next time. Thinking of you and hoping that you are feeling better!

You are the ultimate in contrasts. Controlling what is done to your uncontrollable muscles. Sleeping on coffee. Apologizing for not being witty while you are. Declaring blessedness in a bruised and exhausted state.

Heh. I've worked in a few PT clinics that have those machines.

Glad you got another round this month. So long as it 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.