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

Going Bananas

4:07 PM

Fake banana flavor should be considered cruel and unusual punishment. As a child I had to take Ditropan in liquid form for a while because the dose I needed was not available in pills and no one though to do math with pills. It was the most horrendous, torturous fake banana flavor. I hated bananas themselves for years after that. So when I squirted the first mouthful of Nystantin in my mouth to treat the thrust that is a bonus gift from two rounds of antibiotics I was horrified to find it sticky sweet and tasting of bananas. I swished and gargled and swished some more then spit it out quite indignantly. How dare they make this medicie I have to take 4 times a day for a week taste of cloyingly sweet rotten bananas? When I went to find solace in my Mom she had the nerve to tell me that she knew all along it was banana flavor and hadn't bothered to warn me! Nice Mom, I know where you sleep!! It is almost worth keeping the field of fungus to avoid that flavoring!! Hey, I wonder if I could grow mushrooms on my tongue? or moss?or lichen?

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7:55 PM

I don't know where I have retreated for the past month, but it has been somewhere inside where I feel like I do not have to be anything for anyone and I can deal with life on my own terms. The start of the school year is always hard for me as I watch children and teachers prepare for the return to the classroom and I am reminded that there is no classroom for me, no children eagerly greeting me each morning, no lessons to plan, no rules to break. Add to that the fact that a vast majority of my friends are married (or have just done so) and are now having babies and I freely admit to jealousy at times. I was born knowing how to nurture children, I was born with a heart of a mother and yet this will never be for me and it hurts. I can not safely have any biological children, nor would I risk the chance of passing on the genetics that have caused me to be sick, and no one will ever allow someone with such health disabilities to adopt. When I was a teenager I kept a journal of letters to my future children. So it is mourning for a dream.
Three of four weeks ago I did have my Botox injections done and they have been very successful. This time with a combination of the blood thinner and Vitamin K deficiency I looked like one very bloody human voodoo doll that was held together with gauze and tape. My final bruise is almost gone. I wish I had KAFO braces to wear as they would do so much good, but due to Gollum (the pituitary microadenoma) and the steroid to keep my blood pressure up and my complete inability to get any exercise I have been steadily gaining weight and my braces from last year no longer fit. And at $800 a pair I can't just get another set made.
Six weeks ago when I last saw the endocrinologist he asked me whether or not I thought the medicine he was putting me on would work. Knowing that nothing ever goes easily for me medically I said no. He looked at me strangely and said he thought it would be a huge success. With five days before I see him the medication has done nothing. Sometimes it stinks to be right, but I did tell him so. I sound like such a pessimist, but I have yet to have a first treatment attempt for anything work including most infections.
I have an appointment with a new neurologist on the 24th as the one dr would only be able to see me if I had tested positive for mitochondrial disease (I had funky DNA but not in a known pattern - I created my own) through MDA. The neurologist I saw previously has said with my best intentions in mind that she has no idea what to do with me anymore and this is over her head. I actually appreciate it when a doctor admits that they don't know and are in too deep. So I will be seeing the wife of the MDA doctor so that they can work together to treat me and she has more experience with the "weird and unusual".
I have been listening to a lot of my audio books, which are my escape and my entertainment and my lullaby at night. I find focusing on reading a regular book harder now, which totally pisses me off because I used to read a book in a day or two and now I struggle to get through a chapter. The audiobooks give me the magic of books in a way that is less stressful and easier to access. My iPod is almost evenly split music and books. I greatly prefer nonfiction so I have learned about the Missionaries of Charity and Mother Theresa, the motivations of radical Islamic terrorists, how one girl followed God and is creating massive change in a community in Uganda, the occupation of Tibet and the flight to freedom on one family, and so much more.
My father gave me an air compressor to help inflate the tires of my wheelchair which seem to slowly leak out as I take curbs and such. However, the nozle thingy on the end was old (everything else is new) and it leaks so in the process of trying to put air in my Mom and I managed to flatten the tire. That takes skills to flatten a tire while using an air compressor. My poor brother got a desperate phone call and had to come over to fix the mess we created. Even he had a hard time because the dratted thing has to be held in with force as well as down to get any air into the tire, so I don't feel quite so inadequate. My Dad is going to replace the defective part next week and then I should be good to go. My worst nightmare is getting stuck with a flat tire, cause its not like I can hop out of the chair and start pushing it home.
I will try to update again soon and stop withdrawing so much, but I also have learned that however I feel and however I need to cope are normal and acceptable on this journey. I can't do it how someone else would do it, I can only live out my journey one day at a time.
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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.