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

Bah Humbug!

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Christmas is usually one of my favorite times of year, with the glittering lights and the decorations and the excitement about giving to others and the celebration of Christ's birth. This year, not so much. I am definitely not feeling the Christmas Spirit. Last year I was all about everything holiday because the year before I had been so sick that I missed out on the entire holiday season - every holiday from Halloween to Valentine's day. This year I am at a different point in dealing with the massive changes in my life - if we were to refer to the Kubler Ross stages of grieving I am alternating between angry and depressed with days of acceptance. I really want my old life back - if that could arrive under my Christmas tree neatly wrapped in a package and tied with a bow I would be the happiest person on Earth come Christmas morning. At first I tried to force myself to go through the motions and engage in the traditions and make myself feel happy whether I wanted to or not. Yeah, that went as well as it sounds. So now I have given myself permission to feel however I feel and not feel ashamed or guilty about it. There will be no homemade christmas cards this year, and it is debatable whether I will send out any Christmas cards. I have not listened to a single Christmas Carol, other than those playing in stores, and I may choose to keep it that way or I may rock out to Sugarland's Gold and Green. I am putting up a small Christmas tree this year but it will be a low jey event and that will be about the extent of the decorations. It is going to be a low key, low pressure, take it as it comes, celebrate the things that really matter Christmas. And this year I am okay with that.
2 comments:

I strongly approve of the permission you give yourself, Bethany.

For you, I want you to stay 'okay with that' for the duration.

Barbara


There's nothing worse than forced merriment. You definitely have to go with how you feel. Audrey has forced me to dial way back on Christmas overload, and you know what? It's such a relief.


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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