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

New Shoes

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About four weeks ago I ordered custom Converse All Star sneakers online and this week they arrived in the mail. You choose every detail of the shoes, from the color and fabric design of each section to the color thread used to stitch the shoes together to a custom message that can be embroidered on the shoes. Since Converse are the only shoes that fit comfortably over my AFOs, especially since I now have 4 straps per AFO to try and hold my foot inside of the brace in an approximation of a normal position, I wanted a pair that were unique. I predict splurging again in the future for a "fall/winter" style. :) Yes, those are pink skulls on the tongue of the shoes and also on the inside fabric. Girlie yet punk. Purple is my favorite color, so I went with a majority of the shoe being a nice shade of purple with pink stitching to match the pink skulls and pink laces. Then I had to choose what I wanted embroidered. I considered many, many things. I finally settled on Believe, as shown below, because throughout this journey I have had to simply believe - believe that an answer would be found, believe that tomorrow would be a better day, believe that God has a plan. I choose to Believe.

These are now my favorite shoes, and I can not wait to start wearing them and showing them off!!
3 comments:

How very, very cool!! Love them!! -Lauren


The embroidery is my favorite part - my screen saver is the bouncing word Believe. Our Teen LOVES Converse. Good thing she rarely sees what I have on my screen. You ARE pulling out the insoles, right?

The blog looks really good, too. But I had to click on the comments number as the photo of the shoes got me no-where. Like your feet, have to work-out the kinks, I suppose.

Monday evening is my tv evening. Barbara


WOW
more than one thing to comment on ...
1st LOVE your shoes
2nd I kinda like the new blog look-- I clicked on the orange # and got straight to the post.
3rd I wondered how you were doing~ it sounds like you are feeling okay!
now to go back and read another post :)


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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