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

GI Doh!

8:28 PM

I feel like I need to apologize for all of the years that I took eating for granted and never appreciated it the way that it should be appreciated. These past two and a half years have taught me many things, including that there is so much more to the process of eating than I had ever appreciated. I have a far greater respect for how much work many of my kids do just to eat.
I had last been to see the GI doctor last May when I was having another fun round with severe dysphagia and serving as a taste tester for infant foods. The muscles finally got their groove back and I figured I was good to go. There was one hitch in the "all is better" though. It turned out that the only foods my stomach would accept without extreme reactions (pain, violent nausea, vomiting) were simple carbohydrates. My meal choices were narrowed down to breakfast cereal, oatmeal, bread, bagels (I occasionally still choke on those), rice, tortilla chips, pancakes, mashed potatoes, and macaroni. Oh, and I can tolerate milk and small amounts of cheese and freeze dried peaches and apples (to make eating them easier). This diet not only got old after a while - cereal for three meals a day is not something I recommend. The other concern is that I am missing huge aspects of a healthy diet like protein, and potassium, and a multitude of other essentials. What is also annoying is that I am eating very little, and have double checked by measuring calories, yet I am consistently gaining weight. Do you know how annoying that is? My third concern is that I get severe pain behind my right ribs at times, after I eat. So it was back to the GI doctor.
The GI doctor and I apparently were not at the same train station at that appointment because he was focused on the occasional difficulty swallowing that has remained after the dysphagia which is not an issue. I was focused on the above issues. The two trains kept passing but never meeting. He even admitted twice to not listening to me as he was writing (doodling?) on a notepad. In the end he insisted I have another swallow study done before we look at anything else and I agreed to prove to him that I was right when I said I can swallow.
So I had the swallow study done yesterday to please the GI doctor. I hate this test because Barium has its own specific definition of disgusting. After a feast of Barium, the surprising results were that I can swallow fine. As I was waiting for the bus I noticed my mouth felt weird, but I attributed that to the fact that I had drank thick barium and eaten barium coated crackers and not been given anything to drink afterwards. I got home and was not feeling good so I took some benedryl for my allergies and laid down. I am so thankful I took benedryl. When I woke up my mouth still felt funny and my throat hurt but I still didn't connect the dots. I had to chug milk anytime I swallowed anything like my meds and I could not eat dinner and laid back down. It was not until evening when I looked in the mirror at my tongue that I discovered that it was swollen and covered in "hives"/raised sores. I had my mom look in my mouth and throat and it was all fire red, swollen and covered in the same "hives". I am betting these go all the way down into my stomach given the pain when swallowing and the stomach pain. Apparently in between the last swallow study and now I have developed an allergy to Barium. Now I know that the ER was probably a decent idea, but I could breathe fine and my ER copay is a great deterrent. I called the doctor today  to see if maybe he could call in a round of steroids but he said to go to the ER. That copay is still a great deterrent and since it was not getting worse I decided to keep taking benedryl every 4 hours and stick it out at home as long as it does not get worse. The upside to this, once my tongue fits neatly back into its allocated spot in my mouth and I can swallow and talk normally again (I currently sound like I have been hitting the bottle hard as everything slurs together), is that I never have to do anything involving Barium again.
So next Tuesday I go back to the GI doctor to go over my results (I already know - normal, duh!) and see what we do from there. I have an idea - lets look at something other than swallowing! I can get the food into my stomach, it is convincing the stomach that it is food that is the problem!
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What Goes Up.....

12:04 AM

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.
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My Amazing Mother

11:00 PM
Most mothers give their infants life once, which is a beautiful miracle, but my mother spent a year in her life breathing life back into me and giving me life again and again. I was born an apparently healthy infant, bald as bald could possibly be and full of attitude, and giving no signs of the genetic disease that was already written in every cell of my body. When I was five months old my mother was rocking me to sleep while watching a movie on TV. She did not want to miss the end of the movie, so she laid me on a blanket on the ground rather than taking me upstairs to my nursery. When the movie finished she discovered I was grayish blue, not breathing, and had no detectable heart beat. The monster in my genes had decided to rear its head in the form of relentless apnea. My mother learned infant cpr, I was hooked to a monitor, and no one ever slept through the night. Our address became well known to every fire fighter in our small town and they did not bother to knock on the door if a call came in, they came through the door one way or another. Yet the apnea was vicious. After one particularly prolonged episode at 6 months of age, my parents were taken to the little room no parents ever want to go to and informed that I was profoundly and terminally brain damaged with a life expectancy of less than six months. The recommended course of treatment was to leave me hospitalized or placed in an institution until I died naturally of another episode. My mother refused to give up on me. She informed the doctors that I was a child, not a used car that you return and replace because it is broken. I went home with her that day. The apnea continued up until my first birthday, but my parents persevered and delighted as I met every milestone. When I started to read at two and a half, my mother realized that she was in for a totally different ride than any of the doctors had tried to prepare her for.
My mom has been my biggest supporter. She believes in me even when I am unsure. Without her support I never would have had the courage to apply to Vanderbilt, let alone done well enough on the scholarship weekend to win a full Deans honors scholarship. Without her support I never would have had the courage to apply to Virginia to teach and I would have missed some of the most amazing children that touched my life, and an incredible friendship with a friend unlike any other. Without her support I would have never had the strength to go through the torturous ordeal of relearning to eat in early 2009 when I had lost the ability to swallow, and I would be dependent on some sort of artificial nutrition. Without her I would not be me. I would not have my very keen sense of justice, my heart for others, my willingness to risk getting hurt to love those who need it, my passionate way of living life, my foundation of faith, my wicked sense of humor, and so much more.
So not only has my mother given me life more times that we can count, but she has shaped that life and given me the strength and support to be the person I have become. I an blessed to be her daughter, honored to be her friend.
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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.