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

My Easter Miracle

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As I previously discussed in an earlier journal post, I lost my health insurance on March 31 when my standard 18 months of COBRA coverage ran out. I faced a huge conundrum because the school district (Dante's Inferno level 14) gave me 10 days official warning and no information regarding programs available post COBRA. Strike one - a personal insurance policy would cost me a fortune and provide enough coverage to last about two weeks. Strike two - I am in appeal with Social Security so Medicare is out. Strike Three - Medicaid required a three month process of submitting documentation and waiting for some grand governmental diety to determine if I am indeed disabled before I could receive any services let alone the cost due to me making too much money. But God never accepts a strike out. There is a little clause that the school district (may they enjoy their spot in the Inferno) never notified me of which states that if you are disabled when you start COBRA or become disabled while on COBRA you can apply for an extension of coverage at the end of the 18 months. I found this little tidbit out doing research online. Strike one - they require a letter from social security and I am in appeals. Strike Two - the school district hates me with a passion and would hate to have to give me more benefits. However, I was able to establish that given that social security is in appeal, a letter from them is impossible to obtain, and so we went with documentation from my medical team. My neurologist is my hero because he wrote the most kick butt letter listing out every diagnosis I have and explaining that I am 100% medically disabled and severely disabled. Less than a week after them receiving this letter I received a letter in the mail. I HAVE MEDICAL INSURANCE AGAIN!!!!! It is for 11 months, so it ends February 28, 2012 but that gives us so much more time to work on things!!! ANd the miracle continues - I never had to pay a large sum of money for a prescription, I never had to stop taking a medication because I could not afford it, and I never had to go without necessary medical care!!! God ROCKS!!! I was terrified as I watched my medication supply deplete and knowing I could not afford to purchase the next refill. I was wondering if I would survive long enough for Medicaid to decide I was disabled or if the lack of medication would prove the point before then. To be blunt I was scared of dying and I feel like I have been given back my chance at living again. I know it sounds dramatic, but my health care and medications literally keep me alive. Thank you to everyone who prayed, who offered good thoughts, and who cared. I burst into tears when I read the letter because it was such a weight lifted and fears dissipated. Such a lesson in the fact that God provides exactly when it is needed and I should have trusted all along instead of wasting my time on fear.
5 comments:

What a beautiful testimony. I often have to stop and remind myself the words of the hymn 'Praise to the Lord"-- "hast thou not seen how all thou needest hath been granted in what he ordaineth?"

I am so happy for you!!!!!


Excellent...I'm very happy for you :) God will provide...its hard to still not be scared though, as we are human...love ya!! :)


Had that dramatic fear for you myself. You are most welcome. Giving thanks on Good Friday for his suffering and praise for the Resurrection to come! Barbara


What a lovely Easter gift... !!!
I have been neglectful to my bloggy friends recently-- FB is so much faster. I pledge to be around more often. :)


Awesomeness!!! The stress of worrying about not being covered is definitely not good for your health, so I'm thrilled for you that it's been lifted!


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.
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