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

Mama Said There'd Be Days Like This

There are bad days, and then there are bad dysautonomia days. Today is a bad dysautonomia day. I have spent the entire day curled up on the couch and unable to maintain an upright sitting position for more than 5 minutes. Toasting waffles for dinner was a race with my blood pressure to see if the waffles would be toasted before my blood pressure hit the floor (and took me with it). Waffles won, but not by much. I have fought to stay hydrated, which is rather difficult when you never feel thirsty and even more difficult when your intestines decide that they need to rebel and stage a mass evacuation drill and even more difficult when your stomach decides to try to work in reverse, causing severe nausea. I have been alternately a good degree or so below normal body temperature, huddling under my favorite blanket, and a good two degrees above normal, my skin feeling on fire and burning to the touch of anything. My heart decided to join in on the fun and created some funky new rhythms as it also alternated between not quite too slow and not quite too fast. Yet with all of that going on, I still laughed today. I still shared jokes, I still celebrated friendship, I still wrote, I still listened to an audiobook, I still watched favorite tv shows, I still planned and schemed and dreamed. I still lived and laughed and loved. Even on a bad day, on a day when I wanted to cry but honestly could not find the energy to do so, I lived each moment as much as I could. That is a priceless lesson I have learned from this Mitochondrial Disease- even the bad days need to be lived to the fullest. And just for the record, I still hate Pollyanna.
1 comments:

But Haley Mills was so cute! (sorry)

It took me a while to think of a comment for this post. A question has come to my mind - despite your unique medical history, why the sudden onset of severe symptoms - is that typical for your new diagnosis.

And, I just read a post here and decided to introduce you: http://candidlycrippled.blogspot.com/

Barbara


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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