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

Frustration on Wheels

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On July 23, 2009 I met with a representative from the customized medical equipment department (I am getting the name of the department wrong, but you get the idea) of Wright and Filipis to order a custon manual wheelchair. The vendor told me it would take 2-3 months to obtain my chair and that after a month I should call to see how the insurance processing is going. Today is 6 weeks later and I called to check the status of my wheelchair order. For the past 6 weeks, my order has been "waiting in line to be processed into the computer" and was only entered into the system yesterday. In other words, for 6 weeks my order was paperwork lying somewhere waiting for someone to pick it up and contact my doctor for a detailed prescription and then submit the paperwork to my insurance company for authrization. For 6 weeks Wright and Filipis did NOTHING with the order for my wheelchair. When I expressed my displeasure, I was told it was first come first serve and my order had to wait in line. That was never disclosed to me in any of the paperwork I signed, nor on the handy timeline of events of ordering your wheelchair that they provided to me. No one told me that I would first have to wait for someone to get around to my order before they even began processing it. If they had I would have gone to a different vendor that would begin processing immediately. Wright and Filipis deceived me by not disclosing this information. While I thought 6 weeks of insurance autorization and perhaps even the beginning of the order were accomplished, NOTHING was accomplished. It is as if I have not even ordered my wheelchair yet. I am beyond frustrated, and disappointed in a company that failed to provide reasonable service on a critical device that my independence and proper positioning hinges upon.


I'm not much help. I have no magic DME fairies either. :(

How is using your AFOs going?

Once I go through the 30 minute process of coaxing my feet into them properly and then strapping them in (I have 4 straps per AFO) I can tell a real difference. For one thing, my feet are flat on the ground for the first time since, well, a year ago really although it started really mildly. Also my toes are held pretty close to straight which is awesome. My muscles and tendons still protest, but I am getting adjusted. It takes time when everything has been allowed to tighten and shorten at will for 9+ months. I just love looking down and seeing feet pointing forward instead of inward at one another, and that makes it worth any discomfort as muscles stretch back out and things realign into proper positioning. I have totally lost the motor sequence of heel toe stepping, so physical therapy may need to step back in and help with that since I can walk very short distances with crutches or a walker. Right now I tolerate them between 6 and 8 hours per day.

That does sound good, Bethany. Your priorities are in the correct order. There are specialty AFO socks, if you are interested. Some insurances cover them. Ask your orthotist if you don't already have some. In the meantime before you start anything formal. Just transfers will add some weight-bearing time for your feet. You might just do stand-up/sit-down exercises for that reason alone.

Hope you have an enjoyable weekend!

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.