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

One Answer, a Thousand Questions

Yesterday was my appointment with Dr. A (who, now that I have seen his name in writing should be Dr.E but I am too lazy right now to change that) for an evaluation to obtain his expert insights into the movement disorder aspects of the mystery that has become my life. Once again I am incredibly thankful for a doctor who does not believe that MD represents Medical Deity and who realizes that, as the person trapped inside this body, I have a valuable perspective. He had me perform the wide range of neurological party tricks, most of which I suck at (note to self - if I ever drive again and am stopped for suspicion of drunk driving, I am totally screwed). That whole pointer finger to the nose thing looks so easy until I try to do it without my arm muscles shaking. And it sounds so simple to hold my leg up and not let him push it down, until with two fingers he slams my leg down over and over. Talk about ego bruising...a year ago I was able to pick up, carry, position and provide support for children with severe disabilities who weighted up to or even more than 50lbs.
So after his evaluation, he discussed his findings with me. Dr. A is certain that this is not a primary movement disorder like a primary dystonia or parkinsons. He is also certain that it is complex, complicated, and rare. His words "were you to present to us without any medical history and just your current symptoms, this would be a very complicated and difficult case. When you add in your history and the dysautonomia...". I saved him at this point and explained "I never seem to do anything simple. It is always rare, complicated, and an extreme challenge. Apparently it is against my genetic capabilities to follow a simple textbook anything." He laughed, but also agreed. So now that we know what it isn't, we are left with more questions. His opinion is that it is most likely something impacting my spinal cord given the presentation with my lower extremities, and he is concerned because I do indeed have increasing spasticity and tone in my upper back/shoulders which means that it is worsening. He mentioned a disorder called "stiff person syndrome" that they will be checking for by blood work, and also said he is concerned that the autoimmune disorder I was diagnosed with at 11 (and that has been greatly debated since then) could be attacking my spinal cord. He wants me to have a spinal tap, which is tricky given the fact that I am on blood thinners but actually better to do with me on the injections of lovenox than if I were taking coumadin. I have had a spinal tap before, about 9 years ago, and based on that horrid experience in which they missed and then ended up twisting the needle and as a result of their errors I ended up bleeding into the base of my spine I am going to agree only upon the condition of being unconscious. I can deal with the pain, but I find that adding unnecessary pain to an already painful life is unnecessary. Dr. A is now going to be a part of my neurology team, with Dr.CH as lead neurologist and Dr. SN as consult.
One huge success from yesterday was that I received an order for a new wheelchair. The one I have been using is a rent-a-chair that has horrible positioning and actually causes severe pain if I use it for more than an hour or two at a time. Part of this is because of my hip positioning in it, but mostly it is because I have occult spina bifida (the bones at the base of my spine are malformed) and the defect is a boney protrusion just below the layer of skin that receives pressure whenever I sit upright. I have not developed an actual open sore, but I have developed inflammation and scabs on this area from sitting. And as a result of the spina bifida, I have significant arthritis in my lower spine which also makes sitting on a poorly supported and cushioned surface painful. So yesterday after my appointment I went to the medical supply store and ordered a lightweight tilt in space manual wheelchair that could be here as early as Friday :) I had to call and have the Dr. fax them with detailed information regarding seating and/or cushions for seating but it should be taken care of as I have not received a call otherwise. New wheels!!! But to be completely honest, it was hard to order the wheelchair because as long as I was using a rented chair it left me with the illusion that I was only using it on a very temporary basis. Now that a wheelchair has been ordered and purchased for my personal use, it feels almost like surrendering a battle to this and admitting that no one things I am going to walk again any time soon if ever. That is hard, and it hurts. I am not giving up, but sometimes being hit in the face with reality is rough. So instead, I am going to figure out a way to make my new chair absolutely awesome - pimp my wheelchair anyone? :)
1 comments:

think of the chair as a tool,
a tool that can knock down "cretians" that don't have the social graces to be respectful and courtous...
a tool like a grandmas' pocket book that swacks you when you get to close--

or stinky people that you are able to give a well deserved wide berth...

My grandfather,carved a message in a lovely piece of wood, it says-- To see us, as other's see ourselves.

okay, one small request-- need more posts about The Prince Charming, and some sarcastic witty posts-- but give warning -- so that I don't spit out my coffee! :)

I hope that today is good and full of what feels good for 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.

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