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

Not a surrender

This week has already been packed full of activities, more than my normal. Monday I worked with my stepmom canning salsa and applesauce, Tuesday I went swimming and then went on a variety of errands (found shoes that fit over my AFOs, found warmer winter clothes), and today I did a lot of standing as I sorted through more clothes at a charity where my stepmom volunteers and then went out to lunch. What the agenda still held was a dinner out tonight, swimming tomorrow morning, visiting with my niece tomorrow afternoon, packing for my trip, fixing my shoes (I need to add a new hole to the strap so the buckle works), sewing my slippers (long story I will get to another time on adapting), and the normal day to day stuff (dishes, cooking, etc.). My body is very good at giving me warning signs that I am pushing it too hard - I mean huge red flag warning signs. I am very good at ignoring these warning signs and pushing myself until I physically crash and end up very sick because in my mind changing my life to accommodate my illness is the same thing as surrendering to it. Obviously, I repeatedly learn that in the end the illness wins no matter what but I am stubborn. I detest giving it anything, even though when I don't give a little it steals a lot. Today I am making the decision to listen to my body, to see the red flags and respect them. I cancelled dinner and may skip swimming tomorrow morning depending on how I feel when I get up tomorrow. This is not a surrender. This is negotiations, this is a strategic retreat before facing forced defeat. Instead of trying to prove a point that I am in control and not the disease by trying to push beyond it, I will prove that I am in control by working around it and not allowing myself to get to the point where it overtakes me. I just have to remind myself that responding to the warnings of my body and accommodating them is not a surrender to the illness and then I am able to allow myself to make the choices that I need to make to maintain a decent level of functioning. So no white flags flying, but a purple blanket wrapped around me as I take a nice long nap!
1 comments:

When you wake up, rested and sans red flag, you will see that I think you are an amazing person! I wish ALL of my readers would come read this post. I might have to 'feature' you in a post. I want to find you a mate. (Maternal instincts coming out again.) I found this kind of neat site today - writing a response to Deana's comment - you might want to look at it, too. Barbara


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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