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

What Goes Up.....

Tuesday I had an appointment with my GI doctor (quite possibly my soon to be replaced GI doctor but that is another post) which is on the second floor of a brand new medical building by the hospital. I arrived a little early, only to find out that regardless of my 3:30pm appointment time the doctor was not expected in the building untill some time after 4pm. I need to learn his procedure days and refuse to take appointments on those days. So I read an entire National Geographic magazine, and the great and mighty doctor finally appeared. As I was wheeling back to the exam room I crossed paths with him and he stopped in his tracks and looked at me as if I has grown a third eye that was winking at him. He asked me how I got there. Okay, now I know the doctor has had a long day but what the heck is going on? I stare at him. He informs me that the elevator is broken and he had to take the stairs. My mind immediately goes into that place where you run through eighteen different scenarios at once. I am new to this wheelchair stuff, I don't know what you do when the elevator breaks while you are on an upper floor. So we decide to proceed with the appointment and pray that the elevator is resurrected during that time. The appointment sucked (more on that in another post) and towards the end the nurse comes in to report they have no time estimate on how long it will be before the elevator is repaired. I now start thinking if I could slidel down the stairs on my butt safely with someone carrying my chair and just how many bruises that would result in. On the same floor of the medical building is pulmonology, and they happen to have a patient in a wheelchair as well. Their nurses, being smarter, called the local fire department to come carry the patient downstairs so I am just going to be added on to their work order. Have I mentioned that last time someone tried to carry me down stairs I fell and it sucked? So first two EMS workers show up, apparently in case I get dropped rescue workers will be right on scene. I really don't know their purpose, the little chick EMT carried my purse down the stairs and my wheelie bars. Then the firefighters arrived. This is one hell of a way to meet cute guys, but I didn't mind a few of the views I got. :) They then explain they are carrying me, in my chair, down the two flights of chairs and I have to be tipped back to the same angle as the stairs. I think I hit a record new shade of white. But what choice did I have? I informed them that I was more than "nervous" and they encouraged me by saying they had already done this once so they wrked out the mistakes on the first guy. Two flights of stairs have never seemed so long in my life as I bumped along. Seeing as my wheelchair already needs some repairs, I was waiting for something major to decide to go as we were going down the stairs, like the back which is already askew. When we got to the bottom I was ready to kiss the ground, had I been able to reach it. I had to wait for EMT chick to come down with my purse and wheelie bars so the fire fighter and I were talking. Lord help him, he is cute but I wonder about the brains. He asked "Was the elevator working when you got here?". Seriously?? I looked at him and said "Nope, I hopped my wheelchair up all those stairs." Dude, Here's your sign.
I now pray over the elevators that I get in that not only will they get me up to my destination safely but that they will return to get me when I need them and safely restore me to dry land. I can do without the fire fighter escort.

Great story with leaders on TWO follow-ups! Barbara

I just wanted to stop by and say thank you for your comments on Annabel's blog. I am going to spend some time catching up reading about you and what you write about. Again, Thank you!

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.