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

Just Keep Swimming

For days or even a week at a time I feel like I have everything under control, or as under control as possible when your body laughs at you when you ask it politely to do something like maintain a core temperature near 98.6 or straighten its toes. Then something happens - something physical, something emotional, something in terms of new worries or diagnoses or symptoms or slaps of realities or crashes from the Dysautonomia and suddenly I realize that I have as much control as Pavlov's dogs. Of course, it does not help that I am perhaps the most stubborn person I have ever encountered and so I may have a small tendency to completely ignore the warning signs that my body gives me that I am pushing it too hard and just keep going because I refuse to allow my body to define who I am or what I do. There is only one problem with that attitude, and that is that in the end my body usually wins with a big meltdown and reminder that I can push but it makes me pay. Then there are the emotions that I try desperately to ignore and just push past. Don't I look good in my self made superhero cape (just ignore the fact that every so often I manage to choke myself with it and don't look to closely or you might see that it is made from patchwork, duct tape, and and illusion)? I don't want to allow this illness to have power over me, so I try to avoid the emotional impact that it has because that is admitting it has the ability to control me in ways I hate losing control. I do not particularly wish to grieve for an entire way of living, for a person that I can never be again, for hopes and dreams that I have to exchange for new hopes and dreams. So I try to dodge those feelings until suddenly I find myself in the midst of more emotions than there are words to describe them. I should buy stock in Kleenex for when this happens. It can be triggered by so many things - a seemingly random small frustration that is just the last thing I can handle, an object that reminds me of a year ago, a date of "the last time I...", a word, a bad day, or apparently the flap of a butterfly's wings in Brazil. The Dysautonomia crashes just frustrate me because I want to be doing things, living as close to a normal life as I can get, and yet my body refuses to cooperate and on those days it is a victory if I migrate from bed to couch where I spend the day curled up and struggling to stay hydrated. On those days the idea of wheeling anywhere seems as impossible as the idea of walking across America. Then there are other stresses like sitting in an apartment full of boxes from my previous life in Virginia, seeing my car parked outside my window packed full of more boxes (a car I can not drive but am still paying for, a car that right now is a daily reminder of my losses and that had to be parked right outside my window because that wouldn't possibly touch a raw nerve or anything), and feeling overwhelmed. Thankfully, I was smart enough to realize I could not do this on my own - the physical act of unpacking when my muscles are in such a rebellion and I am hanging on the edge of a huge Dysautonomia crash, and the emotional act of having to go through the remains of a life I still so desperately miss and crave to regain. So today my Mom is coming to stay with me for a few days to help me get organized, to sort through the boxes and the emotions, and to be the voice that reminds me this is all normal for a very abnormal situation. And all that I can do is my best, and not give in to the frustrations or anger or weariness or grief. All I can do is just keep swimming. I am so blessed to have so many people that I can reach out to when I need someone to listen, someone to understand, someone to pray, someone to be there, someone to physically help me, and someone to remind me that I am not a failure for feeling all of these things but in fact for once in my life absolutely and beautifully normal. So for this week my goal is to just keep swimming and to soak up the love of my friends and family.

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.