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

Just Enough Rope

On Thursday night I completed an at home study to determine whether I am able to maintain my oxygen levels while asleep and whether my heart rate drops during sleep. It was a simple test, all it involved was wearing a pulse oximeter on a finger and sleeping with it. The challenge was in the poor planning of the designer of the system. Actually, the first challenge is the fact that in my sleep I can escape from anything and everything regardless of its medical necessity and have no memory of doing so. While in the hospital I often came close to removing my IV in my sleep because it was bothering me. Bandages have been removed, socks are always removed. So I figured the little finger clip had no chance of lasting through the night. Considering my tools at hand, I broke out the medical tape and fastened that clip to my finger in such a way that I would wake up before victoriously removing it from my finger. Houdini would have been proud of me. So back to the challenge posed by the designer. The finger clip plugged into a monitor and recoding box about the size of an old cassette walkman, and there was exactly 12 inches of cord between the clip and the monitor. Just enough cord to tangle and to hang myself. There was no way to set the monitor beside the bed, it had to climb on in and sleep with me. Not an issue until you consider that someone thought it would be helpful to have color coded LED lights visible from the moon on the recorded that flashed approximately every second. I tried stuffing it in a sock to smother the light and it made no difference. Finally I smothered it with an extra pillow and fell asleep. I woke up at one point during the night to the shock of my left arm being violently jerked straight out from my body as the recorded plummeted from the bed and, since the clip was fastened to my finger securely, took my arm with it. Trust me, that wakes you up quickly. It looked like I was fishing for alien testing equipment over the side of my bed. I reeled it back in, apologized for having committed the crime of moving in my sleep, and promptly fell back asleep. So I should have any results from the test next week some time. One funny moment was just after getting it hooked up and laying down I got the hiccups. In order to stop the hiccups I took a deep breath and held it. I then watched as the oximeter slowly began to register down to 93...90...88..86. Oops, but it got rid of the hiccups!! I included a little note explaining that one on the printout.
4 comments:

My dear Bethany...ah, hem...
I think this post just proves that you ought to write a book!
Lives' such as yours should be celebrated and recorded ... for the good of the world! :)
By the way...
I LOVE LOVE the new header... was it hard to do???


:) Thanks. The new header was not hard to do at all. I used an online scrapblogging program (www.scrapblog.com), but could have just as easily done it with photoshop.


No one's medical stuff is funnyer than yers!

Agreeing with Stacey. But only if it makes you lots of money. So does scrapblog charge?

Barbara


Thanks :) So far scrapblog was free, you can pay to access more decorations and stuff for the pages and to have scrapbooks of pictures printed out.


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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