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

This is my brain NOT on Drugs

Courtesy of Dysautonomia and the working diagnosis of Mitochondrial Disease, I have no functioning sleep wake cycle. Circadian rhythm is a joke. My poor brain is very discombobulated and without chemical assistance is never able to fully awaken and is never able to fully fall asleep. It is like an endless night of the living dead. I take my "lets convince the brain to wake up medicine" as soon as I get up in the morning, but there is about a one hour lag between when I take them and when they convince my brain to wake up. That one hour has led to some great family stories of the hysterical things I have reportedly said and done, and more than a few unexplained bruises. This morning was a great example of my brain NOT on drugs.
I made myself a cup of coffee, which I can do in my sleep thanks to a coffee maker upgrade back last fall. You pour boiling water across your lap once because of a combination of not being awake and poor arm strength and you quickly problem solve. I love Klaus my Keurig coffee maker. So I took my heat resistant, silicone lidded cup of coffee with me into the bathroom where I get dressed (I know, some may say eww but I was not using the toilet or flushing it so hush). I set my coffee down in the bathroom and then went to gather up my clothes. I then tossed my clothes into the bathroom (my wheelchair does not fit - by a freaking inch- so I transfer to a walker) and went to turn the light on. I stared at the two switches. I tried one, but that only made the room darker so that was no good. I put that back where I found it. I tried the other one, but that just made an annoyingly loud noise, so I put that back where I found it. OK, come on I know one of these had to be the light switch! TWO minutes later I realized the lights were already on!! Nice. As I was getting dressed I discovered that when I got dressed yesterday morning after my bath I had not only put my underwear on backwards but inside out - and had not noticed it for 24 hours. Bonus. I managed to get dressed with everything in the correct position, sipping coffee along the way. Teeth brushed, hair pulled back into sloppy ponytail, I finally looked in the mirror. I decided I needed to apply Cetaphil. I took the lid off of the jar and stuck my finger inside only to discover I had just stuck my finger in my coffee. Coffee as a facial was not going to do it for me. I tried that again with the correct lotion which worked so much better. Then I came out into the living room to put on my AFOs and shoes. Putting my AFOs on is a wrestling match (if you want to know why look at the post two entries ago with photos of the spasticity and dystonia in my feet), so at first it did not occur to me that I was having an unusually hard time getting my brace on. Five minutes later it occurred to me that it was the wrong brace. Odd thing is that the curve of the wrong brace was a more comfortable fit to my foot in many ways - it let me keep them curled.
This is why I have a rule with anyone who might come in contact with me during that hour lag period that nothing I say or do can be used against me. I am not to be held accountable to anything you might convince me to agree to doing and anything I say that makes no sense can not be used to humiliate me. The same thing applies to the lag period between when I take my "convince the brain to go to sleep medicine" and actually fall asleep!!

Although I laughed a bit at this post...
I do understand the fear and nervousness behind the humor.--
I think a coffee facial might be a good thing,,, the caffine would stimuate the skin and tighten it ..??? not that you need wrinkle creme... cause you are super young..
anyway... thanks for sharing I do enjoy reading how you are!

Your self-observations would be an excellent case for study in an OT program. (Alongside the work of Dr. Sachs.)

Agreeing with Stacey (I often do) that your writing is nonetheless entertaining - as I suspect you intend. "the lights were already on!" My affection for you grows.

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.