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

Uncharted Territory

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I have been living in a medical world since infancy, and I can not remember a time in my life when I did not have to take daily medications or have to see at least one doctor on a regular basis. I learned to swallow pills early in life because I decided that I was tired of the disgusting tasting liquid medications, and that there had to be a better way than having to be held down with someone holding my nose and mouth closed until I swallowed (I was a stubborn kid and those medicines were nasty - there were many laps run around the house as someone tried to catch me to get to the holding and administering steps). It was much like trying to give medication to a cat, only I was highly verbal and never failed to express my displeasure about the experience. I was disgusted by the lack of appropriate supplies in my toy medical kit and supplemented it with things like alcohol pads, gauze, "IV tubing", "syringes", medical tape, "nitro", "prescription medication", a "prescription pad" and an "ultrasound machine" and X ray machine. My dolls did not have "owies", they had double pneumonia, bronchitis, kidney infections, strokes, chest pain, lupus, cancer, and unknown diseases. I played out my medical experiences with my dolls, and eventually even had access to real syringes and IV tubing for the poor abused dolls. I even completed the first successful arm reattachment on a Cabbage Patch doll when my favorite doll's arm literally came undone and off of her body. I stiched it back in place and the patient survived, with just a bit of an unevenness in the length of her arms. Not bad for an 8 year old surgeon!
So as I grew up and was handed medical diagnosis upon medical diagnosis, it was familiar territory to me. I accepted it, learned about it, took control, added to my medicine cocktail as needed, added a new doctor as needed, and kept on living my life. No one could ever tell from looking at me that inside I was a war zone of chemicals and misguided immune cells and misspelled DNA and miswired parts. I never experienced any real grief or sense of loss because I had never known any other life. It was just another lemon to toss on the theoretical pile for that lemonade someone was going to make and my life was not interrupted. I coped so well because it was life as I knew it and it never changed any critical aspect of my life or my ability to live as I wanted.
So this illness is uncharted territory for me in so many ways even though I have been doing the Medical Mambo since infancy. This illness has radically, and suddenly changed almost every aspect of my life. I can not keep it hidden and it is immediately evident to someone seeing me that there is something "different" about me. I can not yet take control over this illness, and the medications are not treatments for it but treatments for its symptoms. I can not even truly educate myself because it is a rare diagnosis of symptoms, not cause. For the first time I have had to deal with the grief, the loss, the mourning, and the anger that comes with a serious illness that disrupts your life. However, since I am used to just going on as normal I become quickly frustrated when I become angry or sad or long for how things used to be. I expect myself to just "suck it up and deal". Nothing prepares you for something like this, not even 26 years of living in a medical world. There are days when my view is very positive, and there are days when I am more melancholy. There are times when I just want this to all go away, and times I feel as if I have adjusted really well to this entire new life. There are times when I can see all of the positive things I have gained from this experience, and times when the losses seem more overwhelming than the amazing blessings. Almost a year into this it is still uncharted territory and something I thought I would have been better prepared for, but find is a strange and foreign land that I travel through. It has its own unique beauty, moments that take your breath away, and it has its own rough terrain but it is unlike anything I could have ever imagined. After all, none of those baby dolls ever came with a wheelchair!

You write really well - sorry, but that is the first thing I am overcome-by when reading your post.

I will be one of your regular readers from now on. Barbara

Bethany--try not to be so hard on yourself, as in holding yourself to such a high standard and thinking you need to suck it up and move on. You are only human and you need time to process and grieve. Try to stop "shoulding" yourself. This is something I'm trying to do as well. I've also started speaking to an awesome Christian counselor- it's helped enormously. Thanks for letting us in through your writing. Hugs, Lauren

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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