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

Human Pin Cushion

12:08 AM

On Wednesday I had my first appointment for Botox injections. I knew just enough going in to be dangerous to myself, but not enough to be well informed and relaxed. Almost all of my information came from my experiences as a special education teacher, so it was framed through the pediatric framework. Knowing that this is a process done under anesthesia for children, I was a bit anxious about how much it would hurt. The reason it is done under anesthesia for children is their difficulty remaining still and the trauma of multiple injections into the muscles. Using the EMG machine with two electrodes and a special needle, the doctor targeted specific muscles in my lower legs that are responsible for rotating my feet inward and pushing them downward. I received somewhere between six and ten injections per leg with a small dose given per injection. I remained seated in my wheelchair for the process and simply removed my braces and socks. I was pleasantly and delightfully shocked by how much less it hurt than I had anticipated. I was all ready and prepared to swear creatively, since Mythbusters demonstrated that swearing increases pain tolerance by 30%, but I never even needed an old fashioned "Ouch!"!! Not that I am saying it was particularly fun, but it was no where near the pain I expected. One injection did cause significant bleeding and a large bruise formed with a golf ball sized lump underneath, so it looks like I am trying to shoplift from a golf pro shop via a hidden pouch in my leg. My legs are sore and achy, but nothing more than I would feel after expending myself too much and overworking the muscles. I go back in four weeks to have the doctor assess the impact of the Botox injections, and then in 13 weeks for the next round of injections. Based on the muscles response during the injections, the doctor thinks next time he will need to inject the bottom of my feet to attain the best possible results and get any results from my toes. According to our conversation, those particular injections "hurt like hell" so I am sure it will be an adventure. I did point out to the doctor that none of this hurts him, and he was quick to point out that if he feels any pain during the procedure something has gone wrong. I have two words buddy - voodoo doll LOL :) So now I wait - for the bruise to go away, for the aches to go away, for the results to begin to appear (any time within the next 2 weeks I should see the effects). Just the fact that this offers a chance to get relief from the tight muscles and the twisted feet makes it worth the experience, let alone if it actually works!!
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Twenty Nine Years

10:39 PM

Tomorrow is my twenty ninth birthday, a birthday that twenty nine years ago every specialist at Children's Hospital agreed that I would never live to see. They had such little faith that I would survive to see my first birthday that they encouraged my parents to leave me at the hospital to be cared for until my death and go home to have another healthy child. I am forever thankful that my mother and father, facing those circumstances, refused to give up on me. I am forever thankful that God had far greater plans than those doctors could see, plans that have included a life rich in treasures and adventures and the joy of loving others and being loved. I am thankful for the wisdom of twenty nine years, and sometimes what seems like a lifetime more, and the opportunity to be educated by some of the most amazing children God ever created. I am thankful for learning early in life to live in each moment and to take nothing for granted. I am thankful that I also learned early the true measures of wealth in a life, and that none involve dollars and cents. I am thankful for my abundant blessings and for another year to live, to laugh, to cry, to share, to dream, to hope, to pray, to make memories, to grow, to learn, to love.
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Summer Hibernation

4:52 PM

It has been a while since I have posted anything. Most people hibernate in the winter, and living in the great frigid north I am not opposed to that tradition in any way. However, thanks to the failure of my body to regulate temperature, I also have to hibernate inside with the blessing of air conditioning on summer days that are too hot. This summer has been unusually hot and humid, meaning that my ability to get out and do anything has been greatly limited. Add in the total lack of access to transportation unless someone decides to take me somewhere and I am a house hermit. But not for long. So long as everything works out as it should, in just over a month I will be moving in with my mom to a two bedroom handicap accessible apartment that is in the bigger town with a fully accessible public transportation system that allows me to be independent and go wherever I want whenever I want. I will also be able to get my wheelchair into the bathroom (bonus!), and turn around in the bedroom (double bonus!!). It may seem like I am losing independence by moving back in with my mom, but I am gaining so much more independence by having access to freedom. I can go to coffee shops to read and hang out, to the store when I want to, to the YMCA to go swimming in their handicap accessible pool, and so much more. I can reach counters in the kitchen and prepare food. I can get in and out without struggling with a less than safe ramp. So prayers that this goes through without any difficulties would be greatly appreciated!!
In other news, I spent Wednesday hanging out with my favorite almost 6 year old, my niece Little Bit. I certainly will not be able to call her that for much longer as she is growing like a weed fed Miracle Gro! I am absolutely in love with her openness to the world and the fact that she is neither embarrassed nor afraid of my health changes. When she has a question, she asks it without hesitation. "Why do you wear gloves to push your wheelchair?" "Why are your legs like that when you walk?" "Does it hurt?" She climbed all over my wheelchair to explore it (again, she is fascinated with it) and even gave one of the family cats (who deserves kitty sainthood) a short ride. She helped push me up a steep ramp so I could watch her swim lessons and then ran with me as I coasted down the steep ramp afterward and laughed at how much fun it was to go so fast. She is so matter of fact and accepting and I love her view of life and the world. My Little Bit is growing up and recently lost two of her baby teeth. My brother, the tough paramedic, can not handle loose teeth and was totally freaked out by the process but Bit is very proud. She is very fair when it comes to gender, stating that the tooth fairy can be a boy or a girl, and she has no clue what he or she does with all those teeth. Apparently age 12 is when you officially become too cool for family, because my other niece and my nephew are both now too cool to spend time with family although I give my soon to be 14 yr old nephew a lot of credit. He had a friend over and very nicely introduced him to me, and then a few minutes later came out to the living room and asked if I wanted anything to eat or drink. Without any prompting from an adult! He really is a great kid/young man.
My Botox injections were postponed from Wednesday to two weeks from Wednesday due to some meeting that came up at the last minute that the doctor had to attend. I just want to get them over with (I am tired of considering just how much this might hurt) and see if I get any benefits from them. I am benefiting from the most recent changes in medication, although it needs to be adjusted somewhat again.
In stomach news, I am still stuck at pureed "stage 3" baby food level. I was so excited to find out I was able to eat a package of mini muffins without smooshing them with milk because they were so super soft, only to discover through a horrendous stomach ache and other GI issues that they were saturated with oil and I can not process that right now. I also had a horrid reaction to broccoli baby food mixed with mashed potatoes. I am getting somewhat used to the stomach pain, and have down the exact combination of meds to take when it hurts versus when I am severely nauseous versus when it both hurts and I am severely nauseous. Too bad my insurance company rations my Zofran (antinausea medicine) to 48 pills per month, even though I receive a generic. I am allergic to Phenergan, and Compazine proved useless the first go round with this so I am rather stuck. I also use Reglan up to 4 times per day. I need to see if my GI doctor has any ideas of other combos or meds we can try or add for nausea that my insurance might cover. I hate having to choose to feel sick many times because I need to save the meds for when I feel really, really sick.
Other than that, nothing much is happening. I will definitely try to update more often although I think there are maybe 2 people who even read this. Oh well, I write for myself as much as for anyone else although it would be nice to someday help someone else in my situation or a similar one out. I have been awake 4 whole hours which means it must be nap time! :)
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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.