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

Error, Error...Can not Compute

Yes, it is 2:30 am and I am lying on the couch awake, having a small snack after just having taken a bath, and writing here in my journal. No, this does not seem odd to me but I have the full context of my day. To put it bluntly, the dysautonomia kicked my arse today and spared nothing in its processing malfunction. Sometimes I can figure out a trigger for what set off the dysautonomic "crash" or crisis, but considering I woke up at 7:30am with a severe headache, nausea, and low blood pressure I am pretty sure there was no extrinsic trigger unless sleeping is now bad for me. All day my blood pressure hung out in the 90s to 80s over low 60s/upper 50s. Not the lowest I have ever gotten, but sustained over a long period of time it was miserable. I spent over 6 hours lying absolutely flat, trying as hard as possible not to move, listening to audiobooks and sharing my bed with my trusty blue barf bucket emesis basin. The rest of the time was spent lying flat on the couch. I drifted in and out of sleep, and ate a grand total of 2 bananas smashed up, a handful of pretzels, and a popsicle. I fell sound asleep at about 8pm and slept until 12:30am, when I woke up and realized that my brain had rediscovered how to regulate and process the little things in life like blood pressure, heart rate, and digestion. Unfortunately I was dealing with dehydration from not drinking enough while being so sick (yes, I could have gone to the hospital, but I was feeling too miserable to deal with people poking at me and all they can do is run IV fluids) so I was having severe muscle cramps. I made myself a large cup of green tea and took a warm bath to relax the muscle spasms. Now I am working on catching up on fluids a bit before I try to sleep some more. My poor brain is still very edgy, and a bit confused regarding time of day, and processing things a bit slower than normal but I will take that over being literally knocked flat on my back for17+ hours. The dysautonomia is probably the hardest thing I deal with medically because it has the capability, and frequently uses it, to bring my life to a sudden halt and to hold me captive to a body that is flashing error messages and failing to compute the most basic of tasks. I never know when it is going to go into a crash/crisis and there is no current treatment in place other than fluids and time to treat a crash/crisis. It has the capacity to suddenly become life threatening, and I always have to be vigilant about trying to get enough fluids even though the dysautonomia causes anhydrosis - a lack of the ability to feel thirst- and consistent nutrient intake even with impaired digestion and avoiding known triggers and trying to catch a crisis before it escalates. I so appreciate and am thankful for all of the amazing things the human body does every moment, every day without our conscious thought and am doubly thankful when my brain gets them right instead of hitting an error message.

Oh, dear! I'm so sorry to read about your terrible time so late afterward. Wish I could advise something....will go to the next post with a thought.

And, you write well even with a stressed brain.

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.