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

Botox Round Two and Fun with Neurologists

10:07 PM

The day before Thanksgiving I was lucky enough to have a double schedule of a standard neurology appointment to be followed by Botox injections from the Movement Disorder Specialist Neurologist. I arrived early for the first appointment, that with the general neurologist. I am not sure why I bothered, as she has yet to ever even manage to be on time let alone early in the year or more that I have been seeing her. So I waited, and waited, and waited. Finally, just when I was due upstairs in the Movement Disorder Specialist's office she walked into the room. Now her office knew I had an appointment with her colleague upstairs at a specific time and chose to keep me waiting downstairs and finish that appointment first. This comes into play later. Her big revelation is that I am far too complex to receive care under a general neurologist anymore, and she wants me to receive care for the dystonia from the Movement Disorder Specialist and for the Dysautonomia from another Specialist and to try to get to the Mayo Clinic if I ever get off of their waiting list for the waiting list. I waited over an hour to be told you have no idea what to do with me? Seriously? And you want my copay for this too?? She did order a bunch of labs because I have further loss of sensation and proprioception in my legs and feet which is strangely mirrored pretty closely in my arms and hands. By this point I am 40 minutes late for my appointment upstairs with the Movement Disorder Specialist for the Botox so my chart is shoved onto my lap and I am told to head directly upstairs, do not pass go, and do not dream of collecting any money.
I arrive in the office upstairs as fast as I could wheel, hand them my chart, and am asked very coldly if they were running late downstairs. Um, no, I decided to go out for drinks between appointments. Duh!! I was asked this same question no less than three times by every nurse, nurse practioner, and even the doctor. Apparently what they wanted me to do was leave downstairs, come upstairs at my appointment time, and then go back downstairs to be worked into the schedule. Great, I would have done that had anyone communicated that to me. So it was a rushed appointment, which I generally am not fond of when it involves long needles and my body. The Botox injections were less painful at the time of injection than last time, but more painful in terms of aching muscles later in the day and over the next couple days. I also got a weird headache right after the injections this time. I asked the Movement Disorder Specialist a question that the neurologist had fielded to him, and did not particularly like the answer I received. Lately I get what feels like the same increased tone in my legs in my lower to mid back. When this happens if I am standing or attempting to take steps with my walker it is very difficult if not virtually impossible for me to move my legs (I can move them a little better if lying down). He feels that this indicates that there is something going on involving my spinal cord, but since I have been imaged repeatedly, and my insurance charges a small fortune for any type of scan (Damn Green Cloak and Green Dagger) we will just watch it for now and see how it progresses. Oh fun!! And to test the progression of the sensory loss another round of EMG testing may be in my future. Santa, that was NOT on my Christmas list!!
Other than having to make an appointment for a check up with my internal medicine doctor, who is now holding my prescriptions hostage until I see him as it has been too long between appointments, I should have a decent stretch of doctor free time. Now if only my back would stop hurting, I might be able to see how much of a benefit I get from my new leg braces during peak Botox effectiveness!!
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Stone Soup

10:15 PM

Every year as Thanksgiving approached, I skipped over the traditional lessons on Native Americans and Pilgrims for my preschoolers. We were still working on the time concepts of today and yesterday and tomorrow, let alone something that happened hundreds of years ago. Instead I focused on the functional and meaningful skills and messages of the holiday of working together, sharing, and celebrating what we have. So every year I taught my kids how to cook soup from a stone. We used the book Stone Soup, usually a newer version as I disliked the soldiers in the original version, and engaged in a multitude of activities that required working together. The best, and favorite, was cooking our own stone soup. It began with a stone that I had boiled for atleast an hour at home the night before, and some vegetable stock. Then each child brought in an ingredient the day before our feast. The children used plastic or safe butter knives to cut up the vegetables for the soup with assistance as needed and then added them to the pot one by one. Due to cultural, diet, and other issues we stayed with a vegetable soup that could easily be pureed. I then took the soup home that night and cooked it until the vegetables were soft. The morning of our Stone Soup feast, I decorated the classroom with Christmas lights over the tables and paper lanterns, and tablecloths for the children to decorate, and special "fancy" place settings. The soup sat on the counter staying warm in a crock pot. We then made biscuits, cut up fruit, and prepared pitchers of juice to set out at our feast table. The focus was on how we could not do this alone, but when we each added something important we had the perfect soup and the perfect feast. My kids really seemed to understand this and were excited to see "my carrots" and "Lucy's potatos", and they were enchanted by how we managed to make soup from a stone. Each child got a "magic soup stone" in a decorative bag to take home at the end of the feast so they could make Stone Soup with their families.
My life is a lot like that stone soup that I made with my little ones. It started out two years ago with something ugly and jagged and seemingly worthless, a rock of illness and disability. I cleaned off the rock and did what I could with it, but it was still a rock. Then one by one incredible people: family, friends, and people who became friends came forward and offered gifts that only they could give. They gave me hope, they gave me understanding, they gave me laughter on days when I wanted to just cry, they gave me reassurance, they gave me a sense of belonging, they gave me courage, they gave me back my sense of self, they gave me love, they gave me joy. On my own I can not make it, but with all of the unique gifts that my friends and family have given to me something wonderful and unexpected has been created, something nourishing and sustaining and greater than the sum of its parts. Thank you for being part of my community, thank you for bringing what you do and adding to my stone soup. Two years later I give thanks that what was once just a ragged, jagged, ugly rock is now surrounded by blessings and lessons and hope. I give thanks for you.
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The Talking Drum

11:52 PM

As a teacher I was never beyond using any creative, unusual, unorthodox and flat out one of a kind system to help a child learn to communicate. Duke was a just turned four year old in my preschool class who had a generally cheerful disposition, a brilliant smile, an absolute love for music and anything with wheels, and significant delays due to autism. He did not imitate, he did not vocalize speech sounds, he did not use signs or picture symbols and he did not take kindly to anyone who tried to place these demands upon him. And when I say he did not take kindly to it, I mean that this four and a half foot tall four year old who was built like a line backer went into full combat meltdown. He once attempted to break my classroom window, and I was astonished by the durability of window panes from the 1960s.
I noticed that Duke would sit transfixed during music activities, especially activities that involved instruments. So I began a "make it up as you go along, but take data to save your arse" language program. During direct instruction sessions, I would have him sit with me, and between us would be a drum. I would say a word that I wanted him to imitate, and then tap the rhythm of the word out on the drum. Then I would say the word again and guide him through tapping out the rhythm. If the word was a feasibly small object I then went through tapping the real object on the drum to the rhythm of the word and having him do the same. This worked best with highly preferred objects like toy cars and trucks, a spoon (to get a bite of pudding), a cup (for a drink of chocolate milk), and for fun sing song turn taking activities ("Hello Duke" "Hello Teacher"). I honestly had no idea if this would work or if I would have a proven failure of a communication education system. For Duke, it clicked. He heard the rhythm and music of the words and associated them with the objects.
After about a month I could hold Duke's most favorite item, a toy car, out of his reach and wait for a vocalization without the drum (we had practiced and learned it there). He would try every behavior pattern possible to wear me down and convince me to just surrender and give him the car. At first it took an average of 10 minutes of a tantrum before he would make eye contact and in what I can only imagine was pure disgust say "car". This soon spread to bubbles, light (for a light up toy), cookie, and so many more words. His vocabulary grew steadily, and the average time of negative behaviors before he would vocalize a word got down to as low as an average of 15 seconds with many spoken words without any negative behaviors.
The drum then became a way of introducing language in a social turn taking situation. I speak/drum first and then you answer/drum back. The rhythm of speaking to another person. I had never appreciated the music in a conversation before, but as we tapped out the beat I heard it in all my conversations and in the rhythm of my every day language. I could give him all the words in the world, but it was not until I found the beat that he was able to utilize them and discover language. Now even when I listen to classical music, or jazz, or any music without vocal accompaniments I still hear a language and speech in the talking drums.

* Photo courtesy of istockphoto
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30 Days of Giveaways

7:13 PM
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Check out Ni Hao Y'all and their amazing 30 days of Giveaways!
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12:45 AM

I adore words, finding in them an almost magical power that extends far beyond the representation of concept or emotion. There is a lyrical, musical, ballet dance to words and the sound and feel of the word is just as critical as the intent of the word. Discombobulated has long been one of my favorite words, ever since I first tasted its weight and tone as a small child. Nothing else quite captures the state of jumbled up, tangled, frazzled, out of my own control, not sure which way is up or down as being discombobulated. My reason for not writing anything in a long time is that I have been living in a perpetual state of discombobulation.

My dysautonomia has become significantly more active as the fall days turn colder, and I do not know if that is just a coincidence or if I am in for a long winter.I have been held hostage by my body all month thus far inside of the house, and I am getting very tired of spending my days on the couch or curled up in my bed. Tomorrow I plan on forcing my body to suck it up and deal with a short outing to Target as I am out of some of my medications and they don't deliver (I got spoiled by the old fashioned pharmacy that delivered in the smaller town I used to live in!). Emotionally I tap dance along the spectrum from anger to depression (more like mourning or grief for what I lost) to days of acceptance. I should have paid better attention during those dance lessons as a child as I keep getting the steps wrong and ending up all tangled and befuddled.

I can not believe that it is already time for me to need to get working on making my Christmas cards, and I don't even have my craft table officially set up in my bedroom. Thankfully this year's planned card is simple in design and should be an easy assembly. I had considered doing homemade Christmas gifts as well but that is so not happening this year. Maybe next year if I start in August I will have a prayer of getting done in time.

I have my next round of Botox injections scheduled for the day before Thanksgiving, and I am hopeful that this appointment is not cancelled (the first one for this round was cancelled as the doctor had to go out of town). It has been an unpleasant process to gradually regain the spasticity that was taken away by the first round of injections and I much prefer the range of motion and comfort that I had following the injections. I also see my neurologist on that day, and we have many details that need to be discussed including what symptom management will look like since it appears the search for a diagnosis has been surrendered and if this new back pain is progression of the dystonia and how I can stay hydrated to prevent the recurring bladder/kidney infections when I have absolutely no sense of thirst (thanks to the dysautonomia).

In a completely random note, it has already snowed here. Excuse me, but I don't remember placing an order for an early winter or cold weather. Thankfully the little snow that stuck melted quickly the next day. Snow sucks when you are in a wheelchair and the cold sucks when you can not regulate your body temperature. I love looking at the snow, but I hate having to go out in it when it is windchill negative freeze your breath. I still want to find the genius who thought that metal push rims would be a great idea for a wheelchair that would be used in a Northern state with frigid winters. It is like that scene in A Christmas Story when the kid gets his tongue stuck to the pole, only with my hands on the push rims. I had to buy a new, very warm winter coat as the coat from last year did not fit and matching hat, scarf, and gloves. Unfortunately, with my KAFOs, there are no winter boots that I have found that fit over them so I have to be very, very careful transferring in the winter. 

I will hopefully be back soon to write something more creative, more insightful, and more entertaining. I am writing this tonight as I try to lull my brain into a relaxed state during an annoying bout of insomnia. Therefore, I promise absolutely nothing in terms of comprehension or logic. :)
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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.