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

A Gray Day Indeed

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I spoke with my amazing neurologist this morning, and we did some problem solving and discussed the most recent issues that have made their presence known. A large part of me wants to just ignore all of this, to ignore that Big Green Monster, and pretend like nothing of significance has happened. Unfortunately, that would be as successful as trying to use denial to stop a flood. My briefly and hastily scribbled notes from our conversation summarize things pretty well. I need to make an appointment with a urologist to evaluate my bladder and the best way to deal with the fact that it appears it has joined the list of body parts with malfunctioning sensory nerves and spasticity. Remembering all of the testing I had done on my bladder as a child before the very general diagnosis of neurogenic bladder was made, I am pretty sure this is going to involve tubes in places God never intended for there to be tubes. See, there are entrances to the human body and exits and I am a firm believer in the fact that the exits are exits only. Next, I am to start on Cipro until I can get a culture for a possible kidney infection to my local internist for analysis and sensitivity because since I can not tell when my bladder is full it could easily back up into my kidneys and have created a significant infection. This infection could be what has caused my increase in weakness, and my back pain (even though the back pain is not in the kidney region) as an untreated infection in someone like me can cause increased muscle weakness, increased fatigue, increased symptoms. Symptoms like relying on my wheelchair more in the house where I used to use just my crutches or walker, having significant back pain, increased aching and weakness in my legs, and not being able to maintain lying on my side in bed without support. If these symptoms continue even after I start the antibiotics then I am to see my neurologist early next week. If things get worse or I have any issues I am to call her immediately. Our next step in the diagnostic process is going to involve very expensive testing for genetic disorders and such for the spastic paraparesis, as all other testing has come back normal. The testing is even more important because I can not obtain any family medical history from my father's side of the family beyond my father, his half sister, and his mother.
I am frustrated at this point, because it seems like whatever this monster is refuses to give me any chance to enjoy even a shred or normalcy before it starts to attack again. I am angry that this just goes on and on, and that it continues to be such a defining feature of my life when I have a different life I want to be living. I am scared because we can not identify this monster and we can not predict what it will do or figure out a way to fight back. I am worn down from almost a year of this without any respite or end in sight. But most of all I am choosing to remain hopeful and to have faith that God is in control, and that all that I do not know is known to him and that all that seems random chaos to me is being made into perfect glory by him.
1 comments:

I'm here. I'm glad we reconnected. Your faith renews mine. Hugs and prayers. Lauren


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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