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

A glitch in the system


Apparently this year there is going to be very little of the season that I adore called "Spring" and a great deal of the season that my body detests called "Summer". The dysautonomia leaves me rather like a reptile in that I can not adjust my body temperature very well, so when it is hot outside I am very prone to heat exhaustion. It would help if my body could make the effort to sweat, but by the time we get to that point I am already in trouble. While I also am miserable in extreme cold, I prefer winter over the heat of summer because you can always put on layers but you can only (legally) take off so many. Another huge issue that arises to the forefront this time of year is one that is virtually impossible for someone with a functioning brain to comprehend. I do my best to explain it, but it is as if I am from some weird other planet. I do not have the capacity, ability, brain signals, awareness to feel thirsty. I can and have easily gone 24 hours without drinking anything other than the sips of water required to take my medication. (On a side note, I also do not have the capacity, ability, brain signals, awareness to feel hunger or full like normal either. ) Obviously this poses a big problem because I am rather fond of my kidneys and they already take a beating from all of the chemicals they are asked to process from my medications, not to mention we know at least one has a cyst on it. Also, with my extremely low blood pressures being dehydrated is like playing on a tightrope blindfolded without a safety net - just a bad idea. To explain what I mean by not feeling thirsty, I never get a signal that my body requires liquids no matter how desperately it may indeed need them. When I do drink it is because I am forcing myself to do so or because a beverage tastes good. If my mouth is dry I chew gum or swish a small amount of water and swallow it and then have no need to drink more. To try to understand, imagine you have just eaten the largest meal of your life and are absolutely and unquestionably full. Now someone sets down a 7 layer chocolate cake in front of you and hands you a fork, telling you that now you must eat your dessert. You have no desire to eat that cake, your brain is not telling you to eat that cake but everyone else is telling you that you need to eat that cake. This is sort of what it is like for me to drink something - I feel no need to drink, because I feel no need I often end up feeling nauseous from drinking a full glass of something because my body does not recognize the need for the liquid, and I am content without touching it yet everyone is telling me I need to do it. I can't quite imagine what thirst feels like, but I do recognize that my brain is obviously malfunctioning and I think I understand the concept from reading and studying development. So we have tried numerous things to get me to drink. First there was the theory that I just needed to do it - the Nike approach "Just Do It". That worked as well as one would expect. Then there was the theory that what I needed to do was carry a water bottle everywhere with me and take a drink from it whenever I remembered. Here's a hint, if I don't feel thirsty do you think I remembered the water bottle let alone to drink from it? I left a trail of countless water bottles in my wake each with maybe three sips taken before I totally forgot. Now I am supposed to be on a 3 hour timed schedule. Every three hours, when I go to the bathroom (my neurogenic bladder requires timed elimination) I am then supposed to get myself something to drink and drink it. Any guesses on how well this is going? Some days I do really well, and other days I am lucky if I get 16oz in over the entire day. What is really bad is that I take Topomax, which comes with a big bold warning that it is imperative to drink while taking it because it is known to cause kidney stones. Oops. Thankfully so far my kidneys show no damage from a lifetime of abuse, and they keep chugging along. But how much longer can they take this? At my follow up MDA Clinic appointment this is an issue that I know we need to seriously address and problem solve because 1) I am constantly on the edge of significant dehydration, 2) this is not helping my low blood pressure, 3) I feel better when hydrated, 4) kidney stones would be bad, and 5) my kidneys are the only ones I have and I think they have been abused enough.
I should write another time about how weird it is to have an abnormal/absent sense of hunger and abnormal/absent sense of full and the joys that brings including frequently forgetting to eat until my blood sugar plummets. I don't do much better eating on a schedule than drinking on one most days. :P With that glitch you would think I would be skinny, but nope - I have my back up belly in case the dysphagia gets severe again (that's what I am calling it, so it seems purposeful instead of just weight gain from the inability to exercise anymore).
2 comments:

I think I finally understand you better. Thanks for explaining this. If I get any enlightening ideas for you, I'll be back in a flash to share. Coming up empty just now.

Sounds like TX would not be such a great trade for the trouble of the snow. :( However, there are a slew of northerners who come here every year and have the nickname "winter Texans".


Well, hummm.. Oregon is really rainy right now- but we also have "glorious,annoying" allergies-- mold, tree,and grass that can put a cramp in any ones' style...
Wish I had a idea...


Job 8:21

"He will fill your mouth with laughter and your lips with shouts of joy."



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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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