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

Name it and Claim It

9:30 PM
When I welcome some thing new into my life, it just does not feel right until it has been given a proper name. My computer is named Elphalba after the wicked witch of the west (and I named her correctly!!). My wheelchar is Nessarose, sister of Elphalba who had no arms (my chair has no arms) but could perfectly walk with enchanted slippers. My coffee maker is Klaus,a German in Lederhosen whose speciality is coffee instead of beer and he knows not to talk to me before I have had my coffee. My electric teakettle is Gretel, wife of Klaus the coffee maker, a round and happy Frau who occasionally just has to whistle with joy. My car had a name, like I had a car. Seeing as it is gone we won't bother going there. My ipod is named prism, for through it come music and stories of every color of the rainbow. I have three stuffed animals "Who", "What", and "I don't Know" in tribute to Abbot and Costello. Right now my printer goes by the name "useless pile of scrap metal". I have never named my TV, although my brother named his big screen TV Roxanne and the kids know that if they hurt Roxanne things get ugly - really ugly. So it makes sense that when something moves into my body and sets up shop that I name it too since it is now a part of the crazy thing called me. The spot on my right lung that we have no explanation for but that has never changed is named Bob because I spent a year trying to get someone to at least rescan and it felt like I was always asking "what about Bob"?  My digestive system is named Walter, and it is a very complicated story. But Walter farts can kill. So I have two unnamed additions to my body and that just will not do. One is the pituitary microadenoma that I was taking names for. The other is an assumed lipoma (the scans are unclear) on my left arm that has been there for years but is now growing. So first place in the name that tumor contest goes to Gollum, my hitchhiker in my brain. Second place goes to Peeves, given the honor of being the name of my long term friend in my arm. Prizes will be distributed.
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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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Bad Girl

3:57 PM

Yesterday I was a very poor representative for those of us who use wheelchairs as I allowed my sarcastic temper to have fun. I was frustrated because I had wasted 45 minutes at the lab because the doctor forgot to mention to me that I needed to be fasting for my vitamin levels to be checked. Then the mall was crowded and apparently they have not heard of air conditioning because I swear it was cooler outside than inside. So my first victim was an older guy that I got stuck behind in traffic heading to Target where I needed to get my 14 prescriptions. He was talking on his cell phone and would suddenly just stop walking, causing me to have to suddenly just stop rolling. When I was finally able to clear him, I pulled up next to him and informed him that suddenly stoping like that could be dangerous for his health and I added in my opinion of his intelligence.
Victim number two was a teenager working at Auntie Annie's pretzles. I should point out I was wearing a white skirt. I ordered a pretzel and a medium drink. She tossed them onto the counter in front of me and gave me my change. I was about to put $5 in the tip jar because I know they work for less than minimum wage because they can receive tips when she just up and walked away. She did not dry off the drink cup, she did not offer me a tray, and she did not offer to carry the items to the table a whole 15 feet from the stand. I muttered loud enough for her to hear "thanks for the help. there goes your tip witch" only I did not use witch. I am bad. It was a bad day. I had just spent $200 on medications and missed the bus by 5 minutes. I dried the cup off with napkins and stuck it between my knees, like I usually carry things when in pants, and balanced the greasy pretzel paper sleeve on my lap as I wheeled over to the table. I was victorious.
Victims number three were a gaggle of older women walking in a long group across the hallway of the mall. I had picked up some good speed because there was a slope downward. As I approached they realized I was not steering away and broke off into two groups. Passing through I announced "score, 7-10 split". 
Victim number four was on the bus. He was blatantly staring as I got on the bus and was being strapped down. It was not your usual look of curiosity but rather "eyes are falling out of the head staring". So I looked at him and said "It's called a wheelchair". Missed opportunity to educate but it felt so good to just stop the staring, living in a fish bowl feeling.
In more positive and fun news I totally messed with the mind of the customer service worker at Payless. Due to scheduling issues I missed my June Botox appointment which means my feet and legs are as tight as can be. Shoes are a challenge and trying to put my braces on is a joke. Well we came up with the idea that ballet slippers would be perfect because they are so soft and giving, and its not like I am walking in them. So I was looking at the different sizes when she came up to me and asked "Can I help you find what you are looking for?" I replied very happily "No thanks, I have found it. I am just debating size." There was a long pause and then she answered with a shakey "Oh, okay. If you need anything just ask." I can not imagine what was going through her mind when a chick in a wheelchair is buying ballet shoes. I never explained and left her perplexed.
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More Randomimity

3:50 PM

Not much has changed - each day is like shampoo:lather, rinse, repeat. So there is nothing big and exciting to write about. So instead I am going to write a few little random bits and pieces that do not necessarily go together except that they all came tumbling from my mind. This could get scary. :)

Teaching Tidbit
When a new student transferred to our school district with an IEP in place we had to accept that IEP and place the child accordingly and then we had 9 weeks to call a new IEP meeting to discuss what we felt was appropriate placement with appropriate goals. Nigel was a transfer student who had just arrived in the classroom, coming from a district where you received services even if you were just considered at risk and were not delayed. They had more money than we did. It was lunch time and we were pouring milk into cups. He looked with pure disgust at the cup placed before him and then spoke up. "Excuse me, but at home I have a nipple." (meaning that at the age of 4 1/3 he still drank from a bottle) The principal happened to be in the classroom and she immediately responded "Well at home I have a Marguerita. Life's tough kid."
Nigel also tried to do a "gangster" deal with one of our other students who was using a stander to stretch out his hamstring. He slid up next to him, eyes darting to make sure no one was watching and then whispered in a grovelly voice "Heyyy Samuel. Wanna get down??"


Oasis in a Desert

I have mentioned before that I never get thirsty. This is a hard concept for people to understand because it is completely natural and innate for them to get thirsty. For me a sense of thirst is as foreign as a sense of sight is to an individual with blindness. I have figures out what it might be like from reading and from wanting more of a beverage that tastes good but other than that I have no idea. We have tried every low tech problem solving idea known to man and I must confess I have left a Hansel and Gretel trail of forgotten water bottles I was supposed to carry with me and drink from. We tried scheduled drinking every 3 hours, but I would be in the middle of something when the alarm went off and then never remember to drink. So finally after years we are doing a brain MRI focused on my hypothalamus to see if we can determine a cause for this lack of thirst. The dehydration is causing problems with my already damaged bladder and my already ill functioning blood pressure so we need a plan here, an oasis in the desert. Although an oasis in a dessert sounds pretty good too!


Last weekend I decided that since it was summer it was time to paint my toe nails. This is like a circus side show act and I could easily charge admission for a crowd. I do it myself only because I can not trust anyone else not to bump my toe joints, which is a pain unlike anything other. It is like playing Twister with nailpolish and contorted feet. So I begin by propping myself on the floor with the necessary supplies. I also take extra muscle relaxing meds and pain meds. Then the contortion begins. It is like trying to paint the toe nails of a cat. My muscles do not cooperate, I end up with nailpolish in places I definitely was not aiming for, and my toes rest against each other in a very unhelpful manner. Finally about two hours later and half a bottle of nailpolish remover I am satisfactorily done and exhausted. I won't paint them again for a few months hopefully.


Tummy Time

Next week I have an appointment with the PA at the GI office. I had requested to see the other doctor in the practice for follow up because I just could not communicate with the doctor I have been seeing - he even admitted more than once that he was not paying attention to me. The secretary - AKA gatekeeper- decided it would be too long to wait to see the other doctor so she settled on having me see the PA. I don't mind, I have seen the PA before and she actually listens to me and understands what I am saying. My problem is not swallowing right now, the problem is that my diet is limited to basic carbs otherwise I suffer severe stomach pain and nausea. Living off of breakfast cereal, tortilla bread, toast, melon, crackers, milk and occasionally cheese can't be providing me with all of the vitamins and stuff that I need. Its the unintentional vegetarian diet.


Heat Hermit

Due to the fact that the Dysautonomia has taken a hammer to my internal thermostat, I have to be very careful with temperature regulation. In the winter I can not maintain my own body temperature and rely on heat, clothing, blankets, and hot drinks to keep warm. Winter is easier because I can always bundle up more. In summer I can only get so naked before breaking local laws. I have great trouble keeping hydrated, although I do supplement with popsicles. And I become a heat hermit. Any day that the temperature or heat index spikes around r over 90 I can not leave the house because I can not cool myself down enough and I become at risk not just of an autonomic crisis but also of heat stroke. This summer is off to a hot start and I have already been quarantined due to heat more than a few days. And right now we only have one air conditioner for the entire apartment, positoned in the living room. I can get another one added due to medical need but it is too late this year as it would not be added until September or October at this point. Next year I am starting the process in March. So we have an elaborate series of box fans conducting the cool air to the small bedroom turned computer room/tv room where on hot nights I sleep on the couch. When it is not roasting I cool my bedroom off by opening the sliding glass door until just before I go to bed. I close it, and the curtain, because the sun has an annoying habit of shining early in the morning, which wakes me and anyone who knows me knows that waking me that early in the morning is a dangerous thing to do.


Happy 4th of July!!
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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.