Today I received the "good news" that I have been qualified for Medicaid as an individual with disabilities. However, in order to receive benefits you must be poor. To accomplish this, I would have a spend down or amount of money that I would have to pay out of pocket before Medicaid pays for anything. This amount is so large that were I to pay it, I would not even have enough money left to pay the rent let alone pay for anything else like copays on my medical needs and pesky things like food. The only way that this will ever be of use to me is if I end up hospitalized it will limit my out of pocket expenses to its rediculously high spend down amount. Since I do not plan on going in the hospital any time soon, this is not very encouraging. I now need more than ever to qualify for Social Security and be placed on Medicare and soon. I received a letter saying it could take 3-5 months for my decision to be rendered and written. I am running out of medications, and have stopped taking many even though I need them because of the cost. I am filling out paperwork to attempt to receive medication through the patient assistance programs offered by drug companies for poor patients who can not afford their medication and have no insurance. I need to send them to my doctor to be filled out. I am also having some issues with the free clinic in town and it seems that if I want to be seen I will have to pay for a cab both ways, which would be expensive (at least $20 each way). I don't care who is president, we need better health care options and better ways to provide care for those who can not afford it but are not destitute either. It should not be this hard for me to access medical care at a resonable cost. Health care is a right, not a privilege.
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.