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

Judged

5:02 PM
I am frustrated by people who feel that they have a superior position to me and can judge my actions. I fully admit that I have made mistakes, that I have fallen more than I have walked, that I flat out screw up more than I would like to admit. But I am my own worst critic. I do not need others to point out my flaws as I can promise I am fully aware of each and every single one of them, and have ached over it for longer than imaginable. I am at heart a perfectionist, and I detest the imperfections and failures in my life. I am horridly embarrassed by some of the behaviors that I engaged in during the cycles of my bipolar disorder. Could I control it? No. Could I understand the ramifications of my actions? Not really. Do I need to be reminded of these over and over? No. I am healing, I am in the process of getting my feet under me and becoming the person I want to be. I am making changes in my life based on what is best for me. I need people who believe in me, who can understand that someone so intelligent can do something so stupid because of a scrambled brain, who are willing to look past ALL of the medical issues and see me. I am not my mistakes.
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Changes

9:04 PM
It has been far too long since I took the time to write here. I would have to look back through my posts to figure out where I last left off, a task I do not wish to undertake tonight. So for now I will just make a guess as to where to begin.
In good news, I have been volunteering at one of the local elementary schools. I work with kindergarten and first grade students who are struggling with reading and writing. It is awesome to be back in a school setting and feeling productive. The kids are wonderful and so open to differences - we talked about why I use a wheelchair and the kids got to ask questions and then they were good with it. It was just a part of me, a tool I used. The bad news is that I scheduled volunteering for my worst time of day and have missed at least double the days I have gone. So now we are trying to switch to afternoons, which work better for me, and I am just waiting on the local bus company to set up transportation. Either way I am exhausted by the time I am done and I am usually down and out for the day, and the next. But it is so worth it to feel that meaning in my life again, to be in a school setting, to be working with children.
Medically I have been neglectful of my own care. I have not set up a neurology appointment in months. It is hard to coordinate with my Dad's schedule (since I can not drive) but not impossible. I have ignored Gollum, the pituitary microadenoma, for over a year and probably need to get in to see an endocrinologist about him. I think it is time to scan and check his size as he is causing more problems. The muscle weakness is continuing its progression. My arms are growing weaker and I am afraid that soon I will no longer be able to push my own wheelchair. It does not help that Gollum and some of my medications have caused me to gain weight making more to push. My name finally came up for an appointment at the Mayo Clinic after two years of waiting, but I could not accept the appointment. I just plain can not afford the expenses of the trip - the airfare, the shuttles, food, the hotel for up to 7 business days. I also can not imagine trying to wheel myself around that massive campus and to obtain meals and such. I am back on the waiting list in the hopes that when my name comes up again I will be in a better position to go.
I do have an appointment with a psychiatrist in a month. We knew from my genetic abnormalities found when testing for mitochondrial disease that I am predisposed to bipolar disorder and early onset alzheimer's. Well, my brain decided that it wasn't screwed up quite enough with all of the issues it has and it went and developed bipolar disorder. I am taking a big risk sharing that here, because people have stereotypes of what someone with a mental illness is like. There is still a huge stigma involving these disorders even though they are as real and physical as any other issue I may have. I have started medication for the bipolar disorder, and although I think we will need to adjust it I have hope that everything will be well controlled. I am still the same person that I was before someone put a name to my scrambled brain, still the same daughter and sister and aunt and friend, the same writer and wanna be artist and photographer, the same passionate idealist and child advocate and teacher. I am me.
I plan on writing more on here again, but I am very tired after going to Target today to pick up greeting cards and a pair of pajama shorts. All I had were long pants and it has been warm lately. I am so thankful that winter is finally over and spring is here!! I love sleeping with the windows open, being able to go outside without layers, and the abundance of new life. It reminds me that in spite of everything, I am still unbelievably blessed and wealthy beyond measure!

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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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