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

Spilling My Guts

1:52 PM

Yesterday my stomach starred on the big screen in Endoscopy Suite number 2 as I had my second EGD ever completed. I could have nothing to eat or drink except two of my medications in the morning after midnight on Sunday, so I was rather pleased to have an arrival time of 9:20am. I became less pleased at that time slipped to 10:30am then 11:20am. I was finally taken into the Suite at 12:00pm. Part of that time was spent waiting in Pre-op where I was hooked up to an IV and given bright yellow socks to mark me as a fall risk - you know, in case I decided to get up and try to walk somewhere. :) So bonus points go to the anesthesiologist who managed to knock be out as I am not an easy person to sedate. The procedure went well, and I woke up easily afterwards. There was a little confusion over whether or not I have epilepsy (the answer is no) but it did not delay anything so all is good. The results from the scope itself show a small hiatal hernia - my stomach creeping its way up into my esophagus- and "mild" gastritis - inflammation of the stomach lining. The gastritis may be why it hurts to eat and be adding to the usual nausea that I have. No cause for swallowing difficulties was seen. However, dysphagia can be an effect of motility issues (we already know my stomach takes forever and a day to empty which is why I take Reglan every time I eat), as well as an associated symptom of Dysautonomia and other neurological disorders. So for now we wait to see if the biopsies show anything (I doubt it) and the plan is to continue with the pureed diet. We will do more testing if I lose a significant amount of weight, if my nutritional status becomes an issue, or if it lasts for a prolonged period of time. Considering the further testing is even more enjoyable than eating a camera for breakfast, I think I will make peace with purees.
One weird effect is that I have blisters in my nose where the oxygen tubing was, and blisters going down my throat, and the skin on my lips is bubbling and peeling off. The hospital unit says it is latex free so I have no idea what this is a reaction to, but benadryl seems to help. The nurse I spoke with said the high pressure oxygen from the tubing could cause irritation, but blisters in both nostrils and down my throat, and my lips to shed???? I was on oxygen for 8 days back in 2008 and never developed more than a dry nose.
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Airing the Laundry

11:19 PM

It is time for me to come clean about something, a deep dark secret that I have been to ashamed to share with anyone before. Right now I pay a very sweet woman to do my laundry because the facilities at my apartment complex are the antithesis of accessible, but when I do my own laundry I do not sort the clothes the right way. There are no "colors", "darks", "whites" and "delicates". I do laundry like a guy; there are "could be reworn", "dirty, best wash before wearing", "filthy", and "it is crawling to the washer itself". It all gets thrown in one load that I wash with cold water to prevent bleeding of colors and because I am lazy eco-conscious that way. Everything gets dried on the same setting - Dry- unless it has to hand or lie flat to dry in which case it is probably not in my wardrobe. But what astonished me today was the fact that there are very specific and detailed ironing instructions on my underwear!! I don't even own an iron after a few too many singed fingers. My ironing consists of shaking the wrinkles out and hanging it up so the rest "fall out"; when desperate I will press with a big, heavy textbook. Who irons their underwear? And better yet, WHY? Your arse is not going to be impressed by the nice creases in your tighty whities. Just like my socks came with ironing and hand washing instructions. Seriously? They think I am handwashing socks and then ironing them? So far they have lived through the washer and dryer and look fine without an iron. I can make a decent grilled cheese sandwich using an iron though (college skill), so at least if I ever own one it will be good for something!
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Escapades in Purple Camouflage

1:26 PM

Yesterday I had to go back to the "big" shopping mall in the "big" town where my mom lives because I needed to have more prescriptions transferred and the pharmacy I use is in a store attached to the mall. I use public transportation to get to and from the mall, so I can be independent in getting to not just the mall but anywhere in this town which is a nice bonus. The above picture is of my treat that I earned after having to spend over an hour negotiating between two pharmacies and one insurance company to get a prescription filled. Thankfully, butterscotch frozen yogurt with chocolate topping is not a solid food and does not cause me to choke so I can enjoy this delightful treat - and as a bonus the yogurt is fat free, low sugar and the chocolate simply does not count.
It has been hotter than should be legally allowed, so yesterday I decided to bust out the full summer gear and I wore a skirt with a tank top and sandals. My AFOs were left at home in the air conditioning. A very nice stranger complemented me on my purple camouflage skirt and I had to laugh. I had never thought of the pattern that way, but it is pretty descriptive. It has artistic blotches of beige and pink and purple and white and navy blue on it, so I guess camouflage works to describe it.....for when I go to those girly post combat parties?
The mall is crazy, especially on a Saturday, so I wanted to include a picture of my typical view as I try to maneuver through the aisles and hallways.

My wheelchair is at butt height, which has benefits and drawbacks depending on the situation. ;) It also means that if you refuse to get out of my way after plenty of notice my foot rests are at a nice shin height.

I went in to use the restroom and there was a staff member doing a quick cleaning job of the bathroom. She went into the handicap accessible stall and then came back out and, well she let the stupid fall out of her mouth. She asked me "Do you need to use this stall?" I replied "Well, I pretty much have to seeing as I can't fit in the others.". Um, duh?
I am finding that some of the foods I am now stuck eating really are not that bad. I really actually like the infant oatmeal, and a brand of apple yogurt oatmeal that comes in a jar, and a microwave meal of macaroni and cheese and carrots (the noodles are so soft they melt as you eat). I tried a veggie one with zucchini, carrots, and some other veggies and heated up it tasted like a soup so I have more of the meat and veggie ones to try and eat as soups to get more protein and veggies. I had to throw away the freeze dried bits of fruit that they sell for babies as they were too solid for me and I choked. Choking is not on my list of things to do today, or any day. I also discovered that I can mix muffins with milk and make a concoction that is smooth enough to eat and really still yummy.
In a testimony to the cognitive changes of this delightful neurological disease, I have been so very carefully using a program on my iPod as a checkbook. Something told me to compare my available balance between my checkbook program and the bank. There is a $500 difference, not in my favor, and I have spent an hour looking over the transactions online and can not figure out where I screwed up. Thankfully I had some money left in savings that I transferred to my regular account and my mom is going to help me, and I have paid for the most expensive prescriptions already, but damn. How do you make a $500 mistake and not even be able to figure it out????
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Odds and Ends

12:04 AM

The Stupid Just Fell Right On Out

I was out shopping the other day, and after spending a few hours in my AFOs they were causing me so much pain that I had to remove them immediately. So I took them off and placed them in the canvas bag on the back of my wheelchair along with my purchases. The following conversation then occurred.

Creepy Guy: What happened to your legs?
Me: I caught dystonia. I wouldn't come too close, it is very contagious.

Not one of my finer moments for educating others, but it sure felt good!

Today I was waiting near the door of my mother's apartment building for a bus to come. A visiting nurse who was exiting the building opened the door to go out, turned and appraised me and then asked the following question.
"Do you need to be let out?"
Um, yeah lady. I am sitting here waiting for someone to rescue me and take me for my afternoon walk. That automatic handicap accessible door button is just so confusing!!
My real answer: *eyes roll* Um, no. I am waiting for a bus, and I can manage the doors just fine but thanks for checking.

I'm gonna be a movie star!

The return of the dysphagia, the severe nausea, the pain in my stomach, the bloating after eating a single jar of baby food, the gagging, and the vomiting in my sleep have earned me the honor of having another EGD done. So on the 19th I will be sedated (Ha! The anesthesiologist has no idea how hard I am to sedate!) and have a camera placed down into my stomach to see if there is anything they can see. Biopsies will probably also be taken, just for the fun of snipping away at a bodily organ if for no other purpose. All I have to say is that if they try to rouse me from the sedation this time with a sternal rub someone is going to have a hand run over with a wheelchair repeatedly. I had knuckle imprints on my chest for over a week!

Sleep ate my brain
I had more to write, but it is now midnight and my brain is turning into a mushy puddle of sleepiness. Lets see, I did make a trip to Walmart today to stock up on the food supplies and was pleased with their variety of infant/toddler foods. Not really cheaper than Target but way more selection. I am losing weight, which is not a totally bad thing but this is absolutely not how I wanted to do it again!!
I will write a real entry soon!!
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1:03 AM

Some days my SuperWoman Cape gets tattered and torn, and I don't have time to mend it.
Some days I am Wonderwoman and can take on anything life throws at me.
Some days I sleep with a pink fuzzy owl named Who or a pink plaid porcupine named What.
Some days I am filled with enough courage to face monsters in real life as well as dreams solo.
Some days there is not enough coffee in the world.
Some days I am filled with a need, a drive to live, to do, to be, to create, to capture the moment.
Some days I laugh until my ribs hurt and I can't catch my breath.
Some days I invent new and creative combinations of swear words.
Some days I blast my iPod and get lost in the movement and the freedom of the music.
Some days I can not concentrate long enough to read a few pages of a book.
Some days I pour my heart out on a page in poetry, my soul in ink.
Some days I am a tight knot of emotions I can not manage to untangle or untie.
Some days I use humor to alleviate the discomfort of those around me.
Some days I use humor to cut at the stereotypes and ignorance of those around me.
Some days I am close to content, to making peace.
Some days I rage at God, I am angry with the world, I am bitter and broken.
Some days I am able to laugh at the ignorance of the population.
Some days I am tired of having to educate an entire society.
Some days I am tired of being seen as a wheelchair first and a person second.
Some days I want to try and fail rather than never try at all.
Some days I love to watch the sun pull down nights curtain and the stars emerge.
Some days I am just waiting for another chance tomorrow.
Some days I want to discover that I have wings and take flight above this mess of life.
Some days I am afraid of failing, of falling, of believing in an illusion.
Some days I see a whole and strong person when I catch my reflection in the mirror.
Some days I see nothing but damaged goods and failures in the same reflection.
Some days I stand before Jesus with my arms open wide, praising Him and rejoicing.
Some days I crawl upon my knees before him barely able to choke out a prayer.
Yet every day I am blessed, I am wealthy beyond measure, I am thankful for the abundance
Every day I wake to a new sunrise, a new hope, to faith and to the promise of a day.
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Overheard Conversation

7:06 PM

I am sitting out in front of my mother's apartment building, which is for individuals with disabilities or senior citizens, waiting for the bus. A woman walks out of the building with no apparent difficulties and sits down on the bench behind me. Another woman comes motoring over in her power chair and the following conversation takes place.
 Hi Martha, How are you doing?
Alright. I am just waiting for my brother to come pick me up and take me to the doctor's.
I have not seen you out and around on your scooter lately, everything okay?
My eyes are still so bad from the surgery. I have to go back to the doctor. I can't see well enough to drive it so I have to walk everywhere right now.
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Seeds in the Wind

2:14 PM

Well, my self imposed vacation lasted a record 24 hours ;) I had decided not to write because I felt that all that I had been writing lately had such a negative or melancholy tone to it. But the more I thought about it, and with some advice from a friend, I realized that not everything about living this life is going to be easy and that if I want to be honest here I need to write about the good, the bad, and the ugly.
In medical news, I am not sure what I wrote in the last post but I am currently very angry at the Dr who assured me that he knew exactly what was going on and was so positive of the diagnosis of Mitochondrial Disease - so positive that he had me receiving benefits from the MDA. So positive until the DNA results came back negative. He sold me hope, and I was so careful to ask him again and again if he was sure because I have been down the road of false hopes so many times before. He wanted to then refer me to the Mayo Clinic, but financially I can not afford the expenses of travel, lodging, etc. that go along with such a medical trip. Therefore, it appears the medical consensus is that I have an unidentified progressive neurological disorder that shall not be named. Treatment will be symptomatic. As much as this sucks, and it sucks on a grandiose scale, I am weary of all of the testing and the appointments and the feeling like a laboratory specimen and the false hopes and the never ending cycle. I just want to have some sort of a life.
I made the appointment for my Botox injections today, and the soonest the could do the injections was August 4th. By my calculations, that is 34 days away - nothing like prompt service with a smile. :) I have one neuro appointment on the 20th to figure out who is coordinating care and to discuss symptom management, and the fact that I prefer to have the general neuro rather than the specialist in charge of my care (especially after the false hopes).
This Tuesday I have an appointment with a new GI doctor for the dysphagia that has returned with a serious attitude problem and the severe nausea, stomach pain with eating, bloating with eating, and other fun stuff it brought along. I am back to eating Gerber products - if you ever need a recommendation on their baby or toddler food, let me know I have eaten just about all of it. I almost choked to death last night on the bready part of a bagel and so am stepping down from soft foods to more blender/pureed consistency. My throat and chest still hurt today from that choking episode. I definitely do not want my tombstone to read "Death by Bagel"!  Now death by chocolate.... ;)
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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.