And God Laughs
I told God my plans and He laughed. So now I am living, laughing, and loving according to His Plans.
Showing posts with label GI. Show all posts

Omnivore Gone Herbivore

11:46 PM


It is incredible the difference in my severe, constant, unrelenting nausea since I became vegetarian and nearly vegan (I love honey butter on bagels and there is chocolate). I used to have to take an anti-nausea pill, an acid control pill, and a pill to empty the contents of my stomach rapidly anytime I ate anything. Now I take them as needed. I can go days without needing anything for nausea except for a pill at bedtime. I am actually getting protein into my system again, and vitamins that I was seriously deficient in because I was existing on so little. However, discovering that the key was to eliminate all animal proteins was not made by any doctor. The doctors kept saying that it might be food allergies, or all neurological, or the result of Gollum (the microadenoma on my pituitary gland), or medication effects, or to just wait 3 months and come back (my favorite - lets do nothing and see if anything changes!). I put the pieces together and it seems that for some reason my body can no longer tolerate or process animal proteins. I have gone vegetarian once before, for a summer, and I have been vegetarian long enough now that once again meat actually smells repulsive. I have no moral issue with you eating it, and I am not out to buy vegan faux leather costs more than the real thing shoes any time soon, but I will stick to my meatless barbque ribs. Thank God that vegetarian comes prepackaged and microwaveable because when I developed the issues with animal proteins I did not simultaneously develop the ability to cook. I look at the raw Tofu and other weirdly named vegetarian proteins like Quean (making things up here) and Waegan and laugh because I have no idea how you take that stuff in the package and make it edible. I then move over to the vegetarian chicken breasts marinading in sweet and sour sauce that you microwave for three minutes before eating and am back in my territory. I do have one question though. If we never established what part of a chicken was the nugget, what exactly is a vegetarian chicken nugget made from?
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Some Wishes Bite You in the Arse

1:36 PM

I have been wishing for answers for the GI symptoms, for the neuro issues, for the dysautonomia, for the weird random symptoms, for the whole package to be wrapped up in shiny paper and topped with a bow. Well that wish can keep looking for a star that will let it hitch a ride. But I did get a few of the wishes within the genre granted and it turns out perhaps I should have been more specific because they seem to have come around and bitten me in me arse. My neurologist of all people figured out the severe nausea and stomach pain when I eat most anything other than simple carbohydrates. It should have been so obvious that I am now, more than ever, going to be switching GI doctors in the practice. My body, it turns out, is incapable of absorbing fat. Any fat that goes in up top comes out down below and causes as much misery as possible along the way. Now what we do about this I have no idea, I am hoping that we will work this out at my next GI appointment in a week or two. But it is an answer. Then I got the results from my brain MRI that was done almost two weeks ago. We did this one to try to diagnose the reason I have no sense of thirst, so we did a special focus on the hypothalamus and pituitary glands. My brain as a whole was structurally normal. The hypothalamus passed inspection. However, the pituitary gland has a hitchhiker. The pituitary gland is 9mm in size and I have a 3mm microadenoma that has decided to make itself at home. Anything under 10mm is a micro and adenomas are almost always benign. So it is a little guy, but he wasn't there on my last MRI and I would prefer he not grow. So I will be seeing an endocrinologist at some poing in the near future to see what effect the little guy is having on my body. Little guy needs a name. Any suggestions are welcome. I wished that we would find something tangible to explain some of the intangible symptoms, but perhaps I needed to be more specific once again.
I am very tired, so this is going to be short and strictly medical. I apologize. I will try to do a regular update very soon!! Thank you so much for reading and caring!!
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GI Doh!

8:28 PM

I feel like I need to apologize for all of the years that I took eating for granted and never appreciated it the way that it should be appreciated. These past two and a half years have taught me many things, including that there is so much more to the process of eating than I had ever appreciated. I have a far greater respect for how much work many of my kids do just to eat.
I had last been to see the GI doctor last May when I was having another fun round with severe dysphagia and serving as a taste tester for infant foods. The muscles finally got their groove back and I figured I was good to go. There was one hitch in the "all is better" though. It turned out that the only foods my stomach would accept without extreme reactions (pain, violent nausea, vomiting) were simple carbohydrates. My meal choices were narrowed down to breakfast cereal, oatmeal, bread, bagels (I occasionally still choke on those), rice, tortilla chips, pancakes, mashed potatoes, and macaroni. Oh, and I can tolerate milk and small amounts of cheese and freeze dried peaches and apples (to make eating them easier). This diet not only got old after a while - cereal for three meals a day is not something I recommend. The other concern is that I am missing huge aspects of a healthy diet like protein, and potassium, and a multitude of other essentials. What is also annoying is that I am eating very little, and have double checked by measuring calories, yet I am consistently gaining weight. Do you know how annoying that is? My third concern is that I get severe pain behind my right ribs at times, after I eat. So it was back to the GI doctor.
The GI doctor and I apparently were not at the same train station at that appointment because he was focused on the occasional difficulty swallowing that has remained after the dysphagia which is not an issue. I was focused on the above issues. The two trains kept passing but never meeting. He even admitted twice to not listening to me as he was writing (doodling?) on a notepad. In the end he insisted I have another swallow study done before we look at anything else and I agreed to prove to him that I was right when I said I can swallow.
So I had the swallow study done yesterday to please the GI doctor. I hate this test because Barium has its own specific definition of disgusting. After a feast of Barium, the surprising results were that I can swallow fine. As I was waiting for the bus I noticed my mouth felt weird, but I attributed that to the fact that I had drank thick barium and eaten barium coated crackers and not been given anything to drink afterwards. I got home and was not feeling good so I took some benedryl for my allergies and laid down. I am so thankful I took benedryl. When I woke up my mouth still felt funny and my throat hurt but I still didn't connect the dots. I had to chug milk anytime I swallowed anything like my meds and I could not eat dinner and laid back down. It was not until evening when I looked in the mirror at my tongue that I discovered that it was swollen and covered in "hives"/raised sores. I had my mom look in my mouth and throat and it was all fire red, swollen and covered in the same "hives". I am betting these go all the way down into my stomach given the pain when swallowing and the stomach pain. Apparently in between the last swallow study and now I have developed an allergy to Barium. Now I know that the ER was probably a decent idea, but I could breathe fine and my ER copay is a great deterrent. I called the doctor today  to see if maybe he could call in a round of steroids but he said to go to the ER. That copay is still a great deterrent and since it was not getting worse I decided to keep taking benedryl every 4 hours and stick it out at home as long as it does not get worse. The upside to this, once my tongue fits neatly back into its allocated spot in my mouth and I can swallow and talk normally again (I currently sound like I have been hitting the bottle hard as everything slurs together), is that I never have to do anything involving Barium again.
So next Tuesday I go back to the GI doctor to go over my results (I already know - normal, duh!) and see what we do from there. I have an idea - lets look at something other than swallowing! I can get the food into my stomach, it is convincing the stomach that it is food that is the problem!
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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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