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

The Red Tape Rumba

10:23 PM

In order to access government programs for individuals with disabilities and/or serious health conditions I have been doing a lot of the Red Tape Rumba. The paperwork alone must be designed to weed out those who are not committed enough to accessing help because it is a beast all its own. I am waiting for them to ask for a DNA sample at some point soon. I had my hearing with the social security judge a few weeks ago and at the hearing she was visibly torn about what to do in my case. The problem is that with an undiagnosed neurological condition, I don't fit neatly into any of the categories social security offers. Dystonia and Dysautonomia apparently don't have categories either. So she grabbed on to the fact that one doctor said it could have psychiatric roots and decided she wanted to categorize me as having somatization disorder. Only one problem. I am not under the treatment of a psychiatrist, because I don't need one. So she decides to send me to see a psychiatrist who turns out to be very nice and the good news is that I am perfectly sane - or as sane as anyone who is fighting with the government can be. The psychiatrist was puzzled as to why the judge sent me to her as it was "obvious" that I had "multiple serious medical conditions". So now I am waiting for the judge to get the report and then make a decision. I am trying to have faith that she will recognize that if I were able to work I would do so, as I miss teaching so very much, and determine a way to categorize my disability. 
Because my COBRA ran out, I have been living without health insurance since February. I applied for Medicaid under a program for the medically disabled. They decided I needed to be seen by their doctor to determine if I am disabled or not. That doctor's office was a very sketchy place - I was so glad that I wear wheelchair gloves because the floor alone looked like a crime scene with weird stains and substances. The doctor turned out to be a nice guy, and I think he was a Christian because he told me to have a blessed day when I was finished. He did a basic exam and basic neuro exam and said that this was "straight forward" and "obvious" and that he will "never understand the government". So I am prayerfully hoping that this means I will qualify for Medicaid as their doctor agrees I am disabled. I also pray that I do not have to do a huge spend down each month before Medicaid kicks in. 
Medically, I am noticing that the weakness is progressing slowly. The distance I can push myself in my wheelchair has been greatly reduced over what I could do a year ago, and I have more issues with tight muscles in my lower back and hands now that I never had before. Of course, my medications have been all changed around due to cost so that may have something to do with it. One medication cost $25 per pill!! That is insane!!
I am going to try and keep this updated more and with more of my regular writing and less strictly medical stuff but I can not make any promises. I don't even know if anyone reads this anymore :) But it is helpful for me to write things out so I will continue for now. 
Blessings to you for reading and caring!

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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.