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

Some Wishes Bite You in the Arse

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I have been wishing for answers for the GI symptoms, for the neuro issues, for the dysautonomia, for the weird random symptoms, for the whole package to be wrapped up in shiny paper and topped with a bow. Well that wish can keep looking for a star that will let it hitch a ride. But I did get a few of the wishes within the genre granted and it turns out perhaps I should have been more specific because they seem to have come around and bitten me in me arse. My neurologist of all people figured out the severe nausea and stomach pain when I eat most anything other than simple carbohydrates. It should have been so obvious that I am now, more than ever, going to be switching GI doctors in the practice. My body, it turns out, is incapable of absorbing fat. Any fat that goes in up top comes out down below and causes as much misery as possible along the way. Now what we do about this I have no idea, I am hoping that we will work this out at my next GI appointment in a week or two. But it is an answer. Then I got the results from my brain MRI that was done almost two weeks ago. We did this one to try to diagnose the reason I have no sense of thirst, so we did a special focus on the hypothalamus and pituitary glands. My brain as a whole was structurally normal. The hypothalamus passed inspection. However, the pituitary gland has a hitchhiker. The pituitary gland is 9mm in size and I have a 3mm microadenoma that has decided to make itself at home. Anything under 10mm is a micro and adenomas are almost always benign. So it is a little guy, but he wasn't there on my last MRI and I would prefer he not grow. So I will be seeing an endocrinologist at some poing in the near future to see what effect the little guy is having on my body. Little guy needs a name. Any suggestions are welcome. I wished that we would find something tangible to explain some of the intangible symptoms, but perhaps I needed to be more specific once again.
I am very tired, so this is going to be short and strictly medical. I apologize. I will try to do a regular update very soon!! Thank you so much for reading and caring!!

Still reading and caring, and to repeat the now famous line from the biggest box office hit ever: Always.

Did you read my name suggestion for the rider on your pituitary gland? In case not, here it is:

Call it Peeves. (after a now famous poltergeist)

Praying these two new bits of info lead to you feeling better!


Haha I like Peeves. My first thought was Bob. Perhaps Coricopat? Or Jellylorum. I like Jellylorum...both from TS Eliot's Book of Practical Cats, of course, which Dakin just loves.

I hope they get everything figured out!!

And thank you so much for your sweet comments on Dakin's blog. They are always welcome and never fail to put a smile on my face. :)

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.