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

60 to 0 in 5 seconds flat

Last night the dysautonomia decided to remind me just how much power it possesses over my ability to function at the most basic of levels. I had one of my most severe "crashes" in recent memory, and most dramatic in terms of onset. The headache had been nagging at me for a while, but given that I have horrendous migraines that without high dose medication would be a daily torment I did not pay much attention to it. It did not even warrant tylenol let alone my pain medication. Then my temperature regulation went haywire, but that was easy to accommodate by changing into a summer shirt and boxer shorts. I was laying in bed listening to music and relaxing when in under a minute my body crashed. My headache escalated from a tolerable "2-3" on that stupid pain scale to a torturous "7-8", I became intensely nauseous, my vision began to fade out as my body prepared to lose consciousness, and I began to violently tremor. I had to fight through the head spinning, vision fading near unconsciousness to turn off the music that had become torture, to go get my blue barf bucket, and to grab an ice pack and water bottle. Those were the longest two minutes. Then all I could do was force down a double dose of antinausea medication and my pain medication, try (and fail) to eat something with salt to help bring up my blood pressure, sip on water, and lay absolutely flat and still while praying desperately. I could not sit up without the risk of losing consciousness, I could not move without risking vomiting violently (and then losing the medication I had struggled to get in to me), and my lower extremeties felt as if they weighed three times more than normal. I was hot and tremoring primarily in my legs. In other words for a good two hours I was miserable. Then finally the medication and liquids and laying flat and still all caught up and I managed to fall asleep. This morning I still have a bit of a headache, am exhausted, and my legs are sore but I am feeling so much better than last night. I hate these reminders of just how powerful this monster is and how it can take me from feeling decent to feeling dangerously awful in no time at all. With little to no warning it can shut down my body and hold me prisoner until it decides to release me. I have to just keep on living, because I refuse to live in fear of this monster, but it is like living with a shadow over at least a part of you or a nagging awareness that at any moment even the best day could crash down around you. This is my monster, and we are inseperable until a cure is found, so we face the world together - and sometimes he behaves and sometimes he rages but never do I surrender to him and let him live my life.
3 comments:

Remember my last comment? Well, there you go again - encouraging me to play matchmaker so's you are not alone when you get sick.

We also need to find the person writing the next textbook description for dysautonomia so they can pay you to write it.

What you experience is exactly what persons with spinal cord injury call autonomic dysreflexia.

I assume your physicians have completely ruled-out every possible cause for your spinal cord to (dys)function as if injured. (No need to exert yourself with a lot of repetition....just point me to the correct post.)

Barbara


The MRI scans and spinal tap are normal. I have documented occult spina bifida, but that is minor and 40% of the population has that and there are no signs of a tethered cord. If the genetic testing and appointment with the specialist on progressive spastic paraparesis/paraplegia do not reveal anything there may be testing done to see if for some reason blood flow to my spinal cord is inadequate, although I have had symptoms of dysautonomia since birth. Then again my motor skills (gross and fine) have been "delayed" or "deficient" since birth too.


But up to last year you could walk, right? Spasticity and paralysis come from specifically located cell damage or malfunction.

I'll be watching for what you post on the genetic testing and the appt with the specialist.

For now, be well, my Friend. Barbara


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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