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

We All Fall Down


Ring around the Rosies
A Pocket full of Posies
Ashes, Ashes
We All Fall Down

The other title I considered for this post is "London Bridge is Falling Down". I am going to keep this short (I hear the giggles as nothing I write ever ends up being short) because I am so very tired - physically, emotionally, spiritually. 
To begin with, the diagnosis of Mitochondrial Disease that the neurologist was so certain about that he had me begin to receive services through the MDA turns out to be yet another wrong diagnosis. The DNA testing came back negative. I made the mistake of believing in a doctor, of believing in hope, of having faith in an answer. We are way back at the beginning of no one having any idea what this is. The neurologist from MDA wants me to be seen at the Mayo Clinic for evaluation, but I have no idea how financially that is possible given the cost of transportation, accommodations during the stay, etc. I am getting to, if not at, the breaking point where I just want to scream enough. Enough being a science experiment and a case study and a lab rat. Enough living my life in pursuit of something we may never find, in pursuit of a name that would most likely change nothing. Enough wasting precious time in this relentless cycle of testing and doctors and false hope and let down and more grief. Enough being defined by what is broken and time to start living and being defined by who I am and all the parts of me that work!
On top of that, last week I thought I had some sort of mild infection - mild to moderate fevers, extreme fatigue, muscle pain, headaches, etc. Instead it appears that the same cluster of symptoms that began this entire nightmare back in oct 2008 is making an encore appearance. I am constantly nauseous, struggling to drink enough fluids to stay hydrated, no appetite, gagging and choking on many foods (dysphagia), severe pain after eating, muscle pain and weakness, headaches, an effortfulness to breathing even though o2 sats are good. There is a good chance this is another episode of the dysautonomia or unnamed neurological disease that caused the loss of abilities 18 months ago, but to be sure testing is being done to rule out anything treatable. Right now I am eating better than I was at my worst but far worse than at my best. My main food groups are soggy cheerios, pudding, jello, super soft noodles, toddler ravioli, and soft bagle pieces. I gag on the last three but not enough to stop me from eating them. 
I really want to write more, but it was a long, busy day and I need sleep. Thanks to whoever reads this garbled rambling - I appreciate you more than you know!
1 comments:

Sleep well. Heart you. 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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