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

I don't even play one on TV

I am no longer allowed to play an at home doctor, not even on television, as apparently in failing to call for emergency assistance last Monday when I had the severe autonomic crisis and then treating the symptoms myself I could have very well suppressed my respirations to a point that when I finally fell asleep my brain could have "forgotten" to breathe. I had not considered the fact that all of the medications I took to treat the symptoms - pain medication, anti-nausea metication, medcations for spasms in my muscles- have the potential to suppress respitations in a normal and healthy body not to mention in a body in the midst of a hypotensive crisis. Have I mentioned that during these crises my thinking becomes a bit murky and not the most logical, probably because with a blood pressure at or below 80/40 the amount of oxygen reaching my brain drops a bit. My neurologist, my amazing and wonderful and incredibe doctor, pointed out my incredible stupidity to me, and in a very nice way. So now we have a plan for how to deal with these episodes and I have in writing a very basic procedure for any emergency care physician to follow should I need to call for emergency assistance. One of the reasons I did not call 911 was because I know that at the local hospital they have never treated anyone like me and I did not feel good enough to talk them through how to do so without killling me off. It is difficult being so complicated.
I also got in trouble for stopping a medication without permission because unbeknownst to me it is also used to regulate blood pressure in people with dysautonomia (that is not why I was started on it or was taking it) and so I was informed I am not to self adjust my medications anymore without explicit physician permission. Oops. Lets see, I also learned that it could take weeks to recover from that big crisis which may explain why I have been so fatigued, so much weaker, why the spasms have been worse, why I have been so nauseous again, and why I have had no appetite (although that does not seem to be slowing down the annoying weight gain - ugh!!). And that is as long as I do not have any more episodes - which I already had an average one last night that I treated appropriately where my blood pressure dropped to 90/38 and stayed in that range for about 3 hours. I pushed fluids, laid down, and monitored it with the plan in mind to call for help if I felt worse at any point. At no point did I feel like I was losing consciousness so it was not a horrid one.
We are also going to do pulmonary function tests since I have been more short of breath since the crisis, and it appears based on the asthma meter given to me in the hospital last December my lungs never returned to full function after that hospitalization. I do not have asthma, but my diaphragm was impacted by the severe muscle weakness. Other than that we are awaiting the results of genetic testing, I see the top specialist in the progressive spastic paraplegia in December, and after that visit I regroup with my nerologist who mentioned a possible assessment at an MDA clinic if we do not get a firm diagnosis from the PSP.
Today I go get my wheelchair, in just a few minutes we leave and I am very excited. Oh, and I also have to restart physical therapy because my legs are too tight - I can not straighten my knees anymore which makes standing hard and walking any steps harder because I rely on locking my joints for stability to walk.
I will update with info on my new chair and hopefully pictures later. I am such a dork excited about my wheelchair!

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.