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

A Post With No Name


It has been a long time since I wrote here, and yet I find myself struggling to come up with anything interesting enough to bother with a post. So I think this will be a series of small posts, or whatever happens to come out of my fingers as I type.
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On my birthday I had the HIDA scan done of my gallbladder. The first hour was easy, just lying there as a dye collected in my liver and gallbladder. It was boring but I have had longer MRIs so I could easily pass the time. Then they bring in the syringe of misery. This is the hormone that causes your gallbladder to contract. He warned me it "might cause a little nausea and cramping". Okay, that is like saying the Pope might be a little Catholic. It is injected over five minutes, and within seconds of the first dose I was violently nauseous and felt like I had been kicked by a mule. And each time he added more medicine it upped the fun factor. I begged him to just slam it in all at once and get it over with, but that was a no go. The nausea and pain lasted about 20 minutes before abating. I don't have any results yet because on the day of my follow up appointment I did something stupid involving a shower and was in too much pain to go. I now have proper respect for the shower.

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The day after my birthday I went out to eat with my mom, my brother, and Little Bit (my 6 year old niece). Little Bit had very proudly chosen my birthday card so it not only had holographics but played music at an ear splitting decible when opened in the restaurant. :) She loves those musical cards. Its so cute, she signed it herself and managed to misspell her own name. She was showing off a new dress she had gotten when they went back to school shopping and talking about the great conundrum because the had not just the dress in that style but also a skirt and a shirt and she had the hardest time deciding which to get! I had a feeling she might be a bit of a princess when she had to have access to the floor to ceiling mirror at 12 months to approve or disapprove whatever outfit I put her in for the day. Yet she is also tomboy, playing in mud, fishing with her dad, and taking karate.
I ordered crab legs for dinner (they are low fat and don't hurt my stomach as I do not use the butter). I can not figure out how to eat crab legs without things going flying and generally making a mess. Little Bit decided to point out to me that I was being "very messy eating your crabs, getting it all over the table. I informed her I was not taking etiquette lessons from the child who two minutes earlier had two macaroni noodles stuck in her nose to look like a seal.

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Gollum (the pituitary microadenoma) appears to me a prolactinoma. He is sending out mildly elevated levels of the hormone that causes my body to think it is pregnant or nursing. It is possible that the low levels are from my polycystic ovary disease and Gollum is doing something else. We will recheck everything in October, but I am starting a new drug to bring down the prolactin levels this week. I really like the endocrinologist. He is trying to look at the whole picture of my presentation, as he feels that there ae too many diagnoses and something should be able to explain most of my issues. He is a well respected and highly published academic doctor so I am hopeful he may find something.

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I will try to write more soon, more that is humerous and not so boring. Just not a ton of things going on right now, and it has been too hot for me to go out of the house lately. I did go to Target on Tuesday and today for medications and a little wheelchair bowling on the side :) I also took some birthday money and went to my favorite smelly stuff store (Bath and Body Works) and stocked up on hand sanatizers and lotion. Today I had to replace my expensive earphones for my iPod. The others got a short in them and only one ear worked. I hate having to buy the expensive ones, as it feels like shoving money into my ears, but I sleep with my iPod on listening to audio books and so the earphones need to be comfortable, durable, and have good sound to them. I also found a pair of long pajamas with owls on them so that made me very happy! Owls make me very happy!

3 comments:

Seems I've that same intro here before....but no apologies necessary! Well, except for knowing how rotten that birthday-procedure was. Rotten.

Owls get great respect around here, too. hmmmm....

That you have a good doc in the hormone area is, well, an answer to prayers. Waiting to hear more good news.

Love, Barbara


Owls are so popular these days. Aren't they?

Sorry for all the stuff, the change, the ever constant adjustments. I wish it all were so much easier on you and I have no doubt,you'll be back, and that the humor will come with you. Don't think you know how to do it any other way.

Thank you again. Seems like I say that a lot. You always find the perfect things to say.


Hey girl. I too wish it were easier on you. :( Hugs to you.


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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