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

Spilling My Guts

Yesterday my stomach starred on the big screen in Endoscopy Suite number 2 as I had my second EGD ever completed. I could have nothing to eat or drink except two of my medications in the morning after midnight on Sunday, so I was rather pleased to have an arrival time of 9:20am. I became less pleased at that time slipped to 10:30am then 11:20am. I was finally taken into the Suite at 12:00pm. Part of that time was spent waiting in Pre-op where I was hooked up to an IV and given bright yellow socks to mark me as a fall risk - you know, in case I decided to get up and try to walk somewhere. :) So bonus points go to the anesthesiologist who managed to knock be out as I am not an easy person to sedate. The procedure went well, and I woke up easily afterwards. There was a little confusion over whether or not I have epilepsy (the answer is no) but it did not delay anything so all is good. The results from the scope itself show a small hiatal hernia - my stomach creeping its way up into my esophagus- and "mild" gastritis - inflammation of the stomach lining. The gastritis may be why it hurts to eat and be adding to the usual nausea that I have. No cause for swallowing difficulties was seen. However, dysphagia can be an effect of motility issues (we already know my stomach takes forever and a day to empty which is why I take Reglan every time I eat), as well as an associated symptom of Dysautonomia and other neurological disorders. So for now we wait to see if the biopsies show anything (I doubt it) and the plan is to continue with the pureed diet. We will do more testing if I lose a significant amount of weight, if my nutritional status becomes an issue, or if it lasts for a prolonged period of time. Considering the further testing is even more enjoyable than eating a camera for breakfast, I think I will make peace with purees.
One weird effect is that I have blisters in my nose where the oxygen tubing was, and blisters going down my throat, and the skin on my lips is bubbling and peeling off. The hospital unit says it is latex free so I have no idea what this is a reaction to, but benadryl seems to help. The nurse I spoke with said the high pressure oxygen from the tubing could cause irritation, but blisters in both nostrils and down my throat, and my lips to shed???? I was on oxygen for 8 days back in 2008 and never developed more than a dry nose.

I suspect some lying latex...

Well, is the Reglan working well enough for you? Other same-category medications to try?

Read your tweet today. Make peace with the kind of pureed that does not make a show, eh?

Hugs, 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.