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

In the garden of good and evil

I have a new nemesis to add to my list of things that I detest now that I am using a wheelchair. Pea gravel is evil. I do not particularly care about any aesthetic quality it may offer to an outdoor setting, it is downright sinister and nasty. Yesterday my amazing friends and I went to the National Botanic Gardens in Washington D.C. where we enjoyed a gorgeous outdoor garden as well as amazing indoor greenhouses full of incredible flowers and plants from around the world. We spent hours there and still did not see everything, and I can only imagine what it must look like in spring- especially in the outdoor garden! I had so much fun discovering beautiful flowers and colors I had never seen before, experiencing the sweet smells, and even soaking up some warm sunshine after escaping the Michigan dreary fall weather for a while! I took a lot of pictures, but as this was my first real expedition for photographs since being in a wheelchair it was a bit frustrating to realize just how much my literal perspective and ability to view things has changed. I could not "get in there" and get the angles I wanted like I used to, so I had to learn to improvise. I would like to have words with the genius who decided to "pave" the entire outdoor garden in pea gravel and consider it accessible. Really? Have they tried to wheel through that stuff, because it is like trying to wheel through quicksand! They have special wheelchairs you can reserve with giant balloon tires, but you then have to rely on someone else to push you thus taking away your independence. I brute forced it through, with a few occasional rescues when I got stuck in 3" deep spots and I think I now have arms of steel...and jello today! Inside was much more accessible, except in some of the rooms it "rained" almost constantly which meant on wet floors there was no way I could stop fast and so I may have accidentally rear ended a few tourists. It was an awesome adventure, and we just happened to be in DC during the Equality Rights Rally. For once, I truly felt comfortable that no one was staring at me as different or odd, but rather was totally accepting of me and my wheels. In fact, I had more offers of help and kind words than I have had anywhere else before. Especially when I kept finding the potholes in the sidewalk and the curbs that were just high enough to launch me forward and require backing over or re-aiming my chair. Oh, also I learned I should have taken my allergy medicine in the morning before going to a fully blooming garden with every kind of pollen imaginable. Um, yeah I was a bit slow on the uptake there and so I also sneezed my way through the gardens and on the Metro home.
I have about 70 pictures that turned out, which I will eventually post to my Flickr page, but for now I will put a few favorites in this entry. Pictures from my adventure in the garden of good and evil.

Banana Tree

Puff Flower

Cats Whiskers

Rose Garden

Wish I could think of something snappy. Alas. The flowers are pretty.

I'm happy to see you are blogging while away from your homebase.


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.