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

Day Two: Regaining Battle Ground

After yesterday's day long dysautonomic crash/crisis, today I was delighted to awaken and discover that I was able to tolerate a more upright position without my blood pressure crashing faster than the stock market when bank bailout loans are due. My BP hung out in the 90s/60s today, but I tolerated it better - only having to retreat once to the absolutely flat and immobile emergency crash position. Usually I am fine until it hits 80s/50s, so I think there is something else underlying this ongoing siege of the dysautonomia. One is certainly dehydration, as I am struggling to maintain fluid intake. I do not have any interest in an IV though, so I am doing my best. Trying to drink when you have no sense of thirst, and then adding on top of that feeling poorly is quite a challenge. Tomorrow morning I am going to have some Gatorade dropped off so that should help some with electrolytes - I know pedialyte is better but I have issues with that stuff. Another possible issue is an underlying infection as I have a low grade fever and signs of my chronic sinus infection flaring to a more significant infection. So I am starting a 10 day round of cipro tonight to hopefully take care of any underlying infection. I also have an appointment Monday with my internal med. Dr. just by chance, so if I am not better I can mention this all to him - not that he has any clue how to treat dysautonomia. :) Gotta love rare diseases. Bonus for the day was being able to sit propped up on the couch and in the recliner! Also able to enjoy watching the opening ceremony of the Olympics (I am getting tired so I am recording it now to watch tomorrow AM). I did well in my wheelchair to maneuver around the house, but for any extended time I would start to lose trunk control and just was too weak to maintain a good position in my chair. Hopefully a full good night's sleep, fluids, and antibiotics will help tip things back into my favor!

Here in south Texas where it is HOT in the summer, my Hubby has chided us all: if you wait until you are thirsty, you are already dehydrated. I think we have learned to drink water based on need over thirst. Perhaps you can, too?

In winter, the heater dries-out the air inside - unlike the air conditioner in the summer. I'm a big believer in using a humidifier in the winter - during upper respiratory illnesses (colds, flu, sinusitis, bronchitis). Mucous membranes do not have to work so hard if there is a bit of humidity in the atmosphere. If the excess mucous (that is shedding the virus or bacteria) is more fluid, it can be drained (out the nose) or reabsorbed easier if there is a bit of humidity in the air. (Expectorants thin mucous secretions.)

That's one powerful antibiotic you are on...should knock it out if you can keep up all the other supportive measures.

Hope your appt with the doc goes well today. 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.