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

No One Promised A Rose Garden

I have some really beautiful pictures that I am going to come back tomorrow and add to this post as I am using my new mini computer that I received for signing up with Comcast and all of my photographs are stored on Elphalba the large laptop. Beautiful roses from a real rose garden.
Anyway, I realized tonight that I only write about the more positive aspects of dealing with an illness such as mine on this journal and someone brought to my attention that this does a complete disservice. I am not telling the full story, I am hiding the truth, and I am basically telling lies of omission. Should anyone in a similar situation ever find this journal I want them to be able to read it and know that the hard times are just as normal as the good times, that there are incredible struggles, that there are times where you wrestle with God but that in the end it is still worth it.
Right now I am dealing with a lot of anger - anger at God for allowing this to happen and not intervening with a miracle, anger at my body that continues to betray me, anger at a world that is so inaccessible, anger at the fact that my life was turned upside down like a snowglobe and vigorously shaken and the pieces have yet to fall down around me in any order. I know that this is perfectly normal and a part of the grieving process for the loss of who I used to be. I am also weary. so very weary. Weary of constantly having to be vigilant for complications, for simple things as having to remember to eat and drink, of having to check continuously that the medical care I am receiving is appropriate and no mistakes are being made, of having to be an advocate for myself and face the wrath of doctors and nurses who prefer placid, docile, and unquestioning patients. I am weary of the hunt for a diagnosis and over a year of not knowing, of over a year of feeling powerless to something that has held me hostage in my own body. I am tired of living knowing that at any moment another autonomic crisis can strike without warning and that we have no plan for treating these other than careful fluid administration and time.
A year ago I was certain we would find a diagnosis, treat it, and I would consider on with my life like I always had in the past when a new medical issue arouse. I never anticipated being where I am now, and the permanency of the situation is beginning to really hit me. This very well may be as good as it ever gets and that frustrates me. I am also tired of being sanctified like some holy saint for dealing with this illness "so well" and being so "brave and strong" and doing what others are certain they "could never do". I might be mistaken, but I am pretty sure I never signed up for this. I am living the life that I was given to the best of my ability and I see nothing courageous about that and you would be astonished by what you are capable of doing when it is the only option.
I know that this is not how I normally write and I am taking a huge risk writing with an open heart about the more difficult aspects of living with this disease, these many illnesses, this body that is damaged and malfunctioning. Before anyone worries, I am not depressed and there are countless times in any given day when I am joyful and overrunning with gratitude for all that I have. But the journey is not easy and I would do it a disservice to continue to hide the hard parts and provide a sugar coated reality. No one promised a rose garden, but more than that I think even in the beauty of a rose garden there are sharp thorns that slice at you.
Tomorrow is another day, a day yet untarnished and untouched and for that I am always thankful. Each day is a new start, a new beginning, and a new gift. And I never once have questioned how richly blessed I am, especially with love.
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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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